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Children with cancer

(998 Posts)
KinkyDoritoWithFairyLightsOn Thu 22-Dec-11 09:31:50

Hi all

I'm going to start this and keep bumping it as I don't think there is a thread for supporting anybody whose child has cancer and I know there are others about. In part, this is a good thing as it shows that it is still very rare, however it doesn't feel like that when you are sitting in a children's oncology ward.

I will be around and am happy to chat to anyone who needs it.

My DD is 13. She was diagnosed with ALL in January. She has to have 2.5yrs of chemo in total, if everything goes according to plan.

I also write a blog that is listed on MN. The catchily titled: The Acute Lymphoblastic Leukaemia Diary.

Best wishes to all.

Elibean Fri 23-Dec-11 16:29:54

Bumping for you smile

Merry Christmas and all best wishes to you and your dd

cedmonds Fri 23-Dec-11 19:33:51

Bumping for you

KinkyDoritoWithFairyLightsOn Fri 23-Dec-11 19:43:32

Aww, thanks both of you! I'm keeping a watchful eye to make sure I don't disappear off the bottom of the board grin.

cece Fri 23-Dec-11 19:47:06

Best wishes to you too.

My cousin's son also has leukaemia. He had loads of treatment last year but sadly had a relapse about a month ago. He is currently having more chemo and they hope to give him a bone marrow tranplant soon. He is 11 years old. x

Best wishes to you and your DD

Pascha Fri 23-Dec-11 19:50:00

I'll bump this for you. My brother had ALL aged 19 and my sister had AML aged 10, they're both fit and healthy now at 31 and 37 respectively. Best wishes to your DD smile

lisad123 Fri 23-Dec-11 19:51:25

I asked mn last if we could have separate cancer threads for anyone but told no sad
Sorry your going though this, cancer is a bitch.
Dh been dx with leukaemia 2.8 months ago, and has cml. if I can help anyone please yell, been in this ride for a whole now and as dh is a "bury head in sand" type, I spent loads of time researching. Hugs for you of you x.

KalSkirata Fri 23-Dec-11 19:51:54

best wishes. A friends child was diagnosed with AML recently.

Lilyloo Fri 23-Dec-11 19:57:45

Another bump for you and your dd , Hope you and your dd and family can have a lovely Christmas.

KinkyDoritoWithFairyLightsOn Fri 23-Dec-11 20:03:19

Pascha that must have been so tough on you all. I'm pleased to hear that everyone is okay now.

cece my thoughts are with you; it is such a horrible illness.

Hi lisa. We've chatted before. How are things going?

Kal Let your friend know we are here, and here for you too if you need anyone to chat to.

Thanks all of you for saying hello and bumping for me!

Stinkyfeet Fri 23-Dec-11 20:35:46

Hi Kinky!

Well done for starting this - let's hope there aren't too many who need it.

For everyone else who joins this thread, my ds1 is 8 and was diagnosed with medulloblastoma (brain tumour) in Sept. Since then he has had the whole tumour successfully removed and completed 6 weeks of radiotherapy earlier this month. He has also been having weekly doses of vincristine.

In January he begins his full chemo cycles - he is due to have 8 six week cycles.

Best wishes to anyone who comes to this thread.

Yes, well done!

My DS is now 24 and had medulloblastoma when he was 8. Thankfully he made a full recovery and the only lasting problem he has is a slighty underactive thyroid caused by the radiotherapy. We spent Christmas and New Year 95/96 in hospital.

My thoughts are with everyone who is currently going through this. It's horrible.

KinkyDoritoWithFairyLightsOn Sat 24-Dec-11 11:31:54

Hi Stinky, I'm pleased you've joined me!

So far busters it seems like we are staying out of hospital this time - but she is covered in a rash from all the drugs and has just had vincristine. She's feeling pretty wiped out. I'm just hoping steroid power kicks in and she feels like eating by tomorrow. She hadn't been diagnosed this time last year but was seriously ill at home. It was really rough going.

Happy Christmas to all!

labtest Sat 24-Dec-11 12:42:48

My 4 (5 in january) year old daughter was diagnosed with ALL in June this year. She is currently in the delayed intensification block on regimen A.She is being treated at RVI in Newcastle. I agree that it doesn't seem rare when you are sitting on a childrens oncology unit.

lisad123 Sat 24-Dec-11 12:46:40

Kinky we are doing ok. I guess now cancer is part of our life's and will be for the foreseeable future sad

Hope all your LO are holding strong and resting well x

KinkyDoritoWithFairyLightsOn Sat 24-Dec-11 16:38:34

Hi labtest. Does she have 1 intensive block on that regimen? DD is on B, but only needed 1 intensive as she's low MRD on the medical trial. How is she getting on at the moment? My thoughts are with you, it's really tough, especially with little ones.

Hi lisa. It's the unknown all the time,isn't it? I daren't make plans. I was built up to return to work, as hospital made out things would be much more straight-forward by this point, but it has still been up and down. I can't get my hopes up about anything. She's been a bit better this week, so consequently I feel wiped out! As soon as she's okay, I seem to get hit by everything my body is putting off when she's ill.

KinkyDoritoWithFairyLightsOn Sat 24-Dec-11 16:39:44

Also,*labtest*, there is a facebook group called Children with ALL that was set up by a mum from LGI (where we are - Leeds). That's helpful too.

labtest Sat 24-Dec-11 18:50:28

Hi kinky. At the moment her consultant is unsure whether she will get one or two intensive blocks. Her MRD was indeterminate but they ruled out high risk as they found one clonal probe but due to technical problem with sample they could not find the other. I hope she only gets one and UKALL2003 trial is finished now so her consultant doesn't have to adhere to trial protocol so fingers crossed! She has coped really well with no side effects,other than hairloss, to any medication except the roid rage during steroid vincristine week!
I will check out that facebook page, thanks.

lisad123 Sat 24-Dec-11 20:02:42

Things are a lot more settled here than they used to be, took about 19 months before things settled into good routine. Dh isn't cureable so we will leave with this for rest of his life. We are hopeful though.

Thing I hated most was the lack of control or help I could offer.

I she feels better soon Kinky we were 'lucky' that DS didn't have chemo and have to suffer all the side effects as it wasn't part of the treatment protocol for brain tumours back then. They were actually just trialling it and he was part of the trial but was selected for radiotherapy only after his surgery, which was bad enough.

And they are fantastic at the LGI. I can't speak highly enough of them. That's where DS was treated! I'm in Leeds too. He attends Long Term Follow Up appointments every year at the Bexley Wing at Jimmy's so it's a while since we've been back there.

I hope she feels better soon..

Stinkyfeet Tue 27-Dec-11 13:56:19

Hope everyone had a good Christmas!

Busters, that's interesting that your ds didn't have chemo and still made a full recovery - certainly comforting to hear for me. We've been told that the chemo is the least important part of ds1's treatment, and that they can stop it earlier if he's finding it too gruelling.

Ds1 has said this was the best christmas ever - lovely to see him happy and excited. He just needs to eat more as he's lost a fair bit of weight and is looking very thin at the moment.

Alouisee Tue 27-Dec-11 14:02:21

Hello - only just seen this thread. My ds2 was diagnosed with ALL in March 2002 aged 3. He had three long years of treatment which are a now a distant memory as he's a happy and healthy 13 year old. Albeit one who faints at the discussion of anything medical!

Best wishes to you all.

CURIOUSPARENT Tue 27-Dec-11 14:11:11

All the best to everyone suffering from any form of childhood cancer. Busters my DS was diagnosed with medullablastoma aged 7 in 1998. Sadly his disease recurred and he died in 2002. Nice to hear that your son is doing well.

Alouisee Tue 27-Dec-11 15:28:19

So sorry CuriousParent. A very tough ten year anniversary coming up for you.

KinkyDoritoWithFairyLightsOn Tue 27-Dec-11 16:05:03

Curious I'm so very sorry to hear about your son. sad

Busters Another Leeds patient! We're all over in Wards 76, 77, 78 and 79 now in Clarendon wing. How old is he now?

Stinky I'm so pleased that you all had a lovely Christmas. DD was fuelled by steroid power and actually ate Christmas dinner, although she was feeling quite tired from the vincristine.

DD doesn't have to go back to hospital for a month now - although this has been the case for a couple of months now and we've still had many, many additional visits for infections. Let's hope this time is different. She's due to try school again in January as by the time they are on maintenance, in theory they should be back to 'normal' and trying to have a normal life.

I'd be really interested to hear from other ALL parents about how this bit of treatment went. I've been clinging to the hope that by the time we get to maintenance, she will be able to be more normal and I can go back to work (I worked full time up until she was diagnosed and am still employed now). BUT, she has been on maintenance since September and she's still been up and down, and in hospital.

How did the maintenance bit go for your son Alouisee? I'm pleased to hear he's all fine now smile.

Did/does anyone else work before/during treatment?

So sorry to hear that Curiousparent I can't begin to even imagine what you went through. Thank you for your kind words about DS, that means a great deal. Your lovely DS - if you don't mind - will be another very important reason for me working to raise awareness of brain tumours.

Stinky I'm glad it helps. DS's tumour couldn't be completely removed as some of it, a few cell clusters, was attached to his brain stem, which as no doubt you know (like me you are probably now an expert in brain anatomy) they cannot touch. He had 33 days of radiotherapy to his head and spine which thankfully worked. DS was very thin too and they didn't want to discharge him because of it. After a week of dexamethasone before surgery where he ate the ward out of food, he ate very little after surgery due to oral thrush after being intubated. His consultant sent him to see a dietician who gave him all sorts of bland, beige foods that came in tins. He wouldn't touch them. So the consultant prescribed fast food - McDonalds, KFC, Burger King etc. Tasty and high calorie he said. It worked, he put on weight and was allowed home!

Kinky we were in the Clarendon Wing too. Ward 48. Not sure if it still Ward 48 after they built the new bit but it was right next door to the canteen grin. DS is now 24 but on our mantelpiece we have his advent candle from 1995 - it comes out every Christmas - which is burnt down to 21st December. He was admitted on the 22nd.

I originally posted this petition request in chat but it got deleted because as MNHQ rightly said if they allow one petition they have to allow them all. This one is to raise awareness of brain tumours and funding for research. I'd be very grateful if anyone would sign it. They are also building a campaign next year called Tiles for Tumours. You can follow them on Twitter @TilesforTumours. I've put them in touch with MNHQ about being campaign of the week in March 2012.


Also, for anyone needing support who has a child with cancer these people are wonderful. They helped us so much.


Sorry for the long post. My thoughts are with you all. No parent - or child - should have to deal with this.

toughday Wed 28-Dec-11 00:09:59

Thank you for starting this thread.

DD, now 4, was diagnosed with a brain tumor 2 and a half years ago. She had over a year of chemotherapy and then radiotherapy when her tumor returned. She now has a scan in January and i'm so worried about it.

During chemo we found it a very lonely time. We were in and out of hospital constantly and the times we were at home we couldn't go anywhere as DD was neutropenic most of the time. My family live about 45 mins away and DH's family never visited even though they only live 5 mins away.

I was so grateful to all the wonderful charities who helped us both financially and practically. There was one lady who came for a few hours a week to look after my children. In that time I could do some grocery shopping or even just get a shower in peace. Little things that normally people take for granted that for me became a challenge.

Busters I had already signed that petition smile, so much needs to be done to raise awareness

Oh toughday I am keeping everything crossed for your scan. I know exactly how you feel. We have been there so many times. DS had a scan every year for 5 years after surgery and every time I worried myself sick until we got the results.

Thanks for signing.

Alouisee Wed 28-Dec-11 07:25:30

For us, maintenance was much more straightforward although neutropenia was still a problem and he was admitted to the ward a few times. We still had weekly appointments during maintenance and he didn't ever go to school if I had any doubt about him being in "perfect" health. I kept him away from soft play (result!) and busy public places generally. We didn't go on holiday for 3 years but my husband and I managed to get away for a much needed long weekend together while my mum looked after him.

CURIOUSPARENT Wed 28-Dec-11 20:12:37

Busters and Kinky thanks for your kind words and I agree that it is good to continue the fight to raise awareness.

Toughday sending lots of love for a good scan result. How was your DD diagnosed if you don't mind me asking? It must have been so hard for you as it sounds like there wasn't a lot of support for you (: Glad to hear about the lady who came to help you out though smile people who are fortunate enough never to have experienced these things have absolutely no idea of how much it impacts on every aspect of your lives and in so many ways.

Love to all who struggle with such terrible circumstances x

dikkertjedap Wed 28-Dec-11 20:42:41

Lots of strength to you all. I have just signed the petition and hope you will get the 100,000 signatories.

KinkyDoritoWithFairyLightsOn Wed 28-Dec-11 20:50:47

I signed the petition.

I'm sorry to hear that the tumour has returned toughday. When in January is her scan? I wish I'd started this thead months ago.

Candlelighters are a great charity Busters. We go ward 79 for outpatients and ward 78 when she's kept in. They are lovely there and really look after us; unfortunately it has been crazy busy all year and I fear, like much of the NHS, they have to deal with staff shortages all of the time.

he didn't ever go to school if I had any doubt about him being in "perfect" health this is what I'm worried about - I wonder if I'm putting unrealistic pressure on DD and on me by trying to go back to work. It's so hard to know what to do for the best. If I lose my job, I fear I will really struggle to get another when she's finished treatment. I don't want this to sound mercenary; we can get by on additional benefits whilst she's having treatment, but once that stops we need my salary to pay the bills. I just don't know. sad

toughday Thu 29-Dec-11 11:07:15

Good morning all,

Curious - so sorry about your ds. In our time since dd was diagnosed so many children have lost their lives, it's just not fair.
DD had 2 seizures. After the second one they gave her an MRI which showed the large tumour. However, when we looked back at the previous few weeks she was randomly vomiting, screamed when she woke from naps and was getting very clumsy - running into doors etc. As she was coming 2 years old, we put alot of stuff down to the terrible twos approaching, not thinking it could be anything like this.

kinky - is there any way to go back to your work part-time? I haven't worked now as nearly 3 years. Somedays I think it would be nice to work 1 or 2 days a week, just so I can be me. Sorry that sounds selfish I know. There is no way mentally that I could cope with full time work yet as we still attend the hospital for various things a few times a month even thoug DD fininished chemo over a year ago. She has also been off school quite a few days due to throat infections and chest infection that she picked up sad

OhDoAdmitMrsDeVere Thu 29-Dec-11 11:13:28

Is it ok if I lurk a bit?

CURIOUSPARENT Thu 29-Dec-11 11:48:07

OhDo - welcome smile

Tough - I don't think it is at all selfish to want to work a little and be you a bit, you are still a person, just one who doesn't have any chance to meet your individual needs at all now whilst you deal with the monster that cancer is.

Kinky don't know about maintenance so cannot help with the practicalities of a return to work for you sorry(: How are your DD's bloods? Just wondered if they are improving if you might look for a phased return to work? If you have a good GP they should be able to write you a fit note for reduced hours. However Winter is a time of many infections, so maybe waiting a bit longer might be less stressful smile

Stinkyfeet Thu 29-Dec-11 11:52:37

Curiousparent - so sorry about your son.

Toughday - fingers crossed for your dd's scan; I hope it all goes well for you. It must be so hard when they're so little, at least we are able to explain to ds what is happening and the reasons for all his treatment.

Everyone's posts are helping me to see how the coming year may pan out for us. I was naively thinking that ds will go into hospital for 3 days for his chemo, then be a bit under the weather for a few days and then back to school for 5 weeks (apart from doses of vinc in wks 2 and 3), until his next cycle. I suppose I'm not yet into the world of neutropenia, infections and set backs. It's going to be a very steep learning curve sad.

You're very welcome here MrsDeVere - I'm sure you will have a great deal to offer us when/if you feel able to share smile

KinkyDoritoWithFairyLightsOn Thu 29-Dec-11 12:24:32

Hello MrsDevere I hope you had a lovely Christmas and of course you are very, very welcome on here smile.

Everyone's posts are helping me to see how the coming year may pan out for us. I was naively thinking that ds will go into hospital for 3 days for his chemo, then be a bit under the weather for a few days and then back to school for 5 weeks (apart from doses of vinc in wks 2 and 3), until his next cycle. I suppose I'm not yet into the world of neutropenia, infections and set backs. It's going to be a very steep learning curve This is exactly the impression that I was given, but I'm now realising that it isn't the case for everyone. It's such a wait and see situation.

What makes me returning to work difficult is I'm a teacher. It's very hard to be in and out of my job as it's unfair on the students who I teach. So I really want to wait until she is more settled into a routine, but I'm scared I'm kidding myself. I need the job for the money. I keep having little panics as I'm main earner. DH has offered to leave his job, but he is her step-dad, and he cannot look after her in the way I've had to this year. She's needed so much 'personal' care, and there's no way she would let anyone else help her apart from me - and that took some negotiation. Plus, there's no way I would want to be at work like normal if she was ill. So, it's down to me. I'm fine being around for her and not working, but I worry about the future implications. I still need to try and live in the now and worry about it when it happens - it's just I've never been good at this.

Curious DDs bloods are good at the moment, but they haven't been very balanced so far and have had some quite drastic lows recently. She doesn't seem as settled on maintenance as we'd hoped.

toughday Thu 29-Dec-11 12:41:38

Thanks stinky and curious, think I'm just having a down day today, have just started a box of chocolates smile

stinky we had seven eight week cycles, dd coped quite well with them. The first and last were the worst. The first because everything was so new to us and the last because her wee body had just had enough. Find what works for you and stick to it, you know your child best. One of dds drugs caused her to get terrible mouth ulcers, I found that if I gave her loads of orange juice/vitamin C for a few days before the chemo then they were manageable.
She also received countless blood tranfusions and platelets throughout, but I know a few families that only needed a couple. It made me realy grateful to blood donors, as without it she wouldn't be alive.
The last cycle she was in hospital the most, I think in the last month we were only at home a few days altogether, her counts were always low.
Once you get into a routine it becomes part of everyday life.

Welcome MrsDeVere

toughday Thu 29-Dec-11 12:51:11

kinky i'm a teacher too - do you teach primary or secondary?

I'm secondary and was on maternity leave with ds when dd was diagnosed, i gave up my job as I knew I couldn't cope with all the work and look after dd. I loved my job and the people I worked with but I knew it wasn't fair on me or them to return full time. That's why I was thinking subbing a couple of days a week would be nice - no take home work.

KinkyDoritoWithFairyLightsOn Thu 29-Dec-11 12:54:39

tough DD's also had loads of transfusions. I think some children do seem more prone than others. What did each cycle comprise of in terms of the drugs she was given? I'm not surprised you are feeling down though. Be really kind to yourself.

KinkyDoritoWithFairyLightsOn Thu 29-Dec-11 12:58:22

tough secondary (English... shhh... judge not my spelling). I've been off since January of last year. I went back to work in September as DD was back in and doing okay, but it all went downhill again. I work in the same school, so they have been really good about everything and I'm still employed. But I don't know how much longer it will last. Subbing is a possibility, albeit a scary one as I'm quite highly strung at the moment and could do with an environment I know. I didn't realise how anxious this had made me until I went back to work. I think I've repressed loads this year and it's waiting to come back and get me. If you don't mind me asking, how have you managed financially?

KinkyDoritoWithFairyLightsOn Thu 29-Dec-11 12:59:11

January of this year! I'm getting ahead of myself!!!

toughday Thu 29-Dec-11 13:38:07

Not at all, DH is still working, DH works for his dad so is tied to that but there is not big wages. I used to save half my pay and then use the rest for household stuff. I was also the main earner in our house. DD gets the higher rate DLA but not the mobility part as she was diagnosed before she was 3. We are also very lucky that our mortgage is very little. We also don't go out very much and never buy anything we can't afford. We have ate quite a bit into our savings now but we are still managing for the time being. We also had a very good social worker who applied to charities on our behalf for grants towards heating oil and travel expenses etc.

I was just going to sub in the same school I was teaching in, the principal is very good and she has already told me she will work with me in what I want to do. I just find it a very daunting prospect especially when the DC are so young.

Her chemo was fortnightly with no breaks between cycles and lasted just over a year. Actually just after her chemo finished and we weren't constntly at the hospital I found the worst because thats when it sunk in that she had cancer. Before then I never had time to think about it.

KinkyDoritoWithFairyLightsOn Thu 29-Dec-11 14:56:19

I think you are right about putting off the reality that they have cancer. I don't think I've dealt with it yet, and I really don't know how to. Instead, I've put on about 3st comfort eating in a year and started to get really anxious. It's odd. I'm still meeting with school regularly as I'm still employed; I think they are just taking it as it comes too.

Whilst I can apply for benefits and get working tax credits on DH's salary, we should be fine. It will be the afterwards that will put us in a difficult position. Our mortgage is pretty mega, although I'm hoping it will drop a little in September when our 5yr fixed period ends. No savings either. It's of comfort to know that there are charities out there who will help if times get tough.

Thank you tough. It's really helpful to be able to talk to someone who understands.

toughday Thu 29-Dec-11 16:50:15

Oh kinky, I hear you on the weight gain, I put on 2 stone this year after DD recurred. I ate to feel good, eating me me feel like crap, so I ate because I felt crap! I intend in January to start lose at least 3 stone next year. I attended a slimming class when dd was on chemo and lost 1 and half stone quickly so hopefully i'll be able to do it again.

So glad you started this thread, I haven't really been able to talk to anyone in RL as most people don't understand the full extent of what the day to day life is like. I put on a smile and say everythings fine.
To look at my dd she looks perfectly healthy, but every time she has a cough or a cold, a sore head or a sore leg I immediately think is the tumor back. I try to put it to the back of my mind but I feel like i'm in a constant state of worry all the time, and especially now as her scan is in a fortnights time, it just keeps building up.

KinkyDoritoWithFairyLightsOn Thu 29-Dec-11 17:15:33

tough it's really, really hard. I know. DD presented with swollen joints, which haven't been a problem for months, then she tried school again and they all swelled up. Rhuematologist said it shouldn't be happening as the methotrexate she is taking should stop it, so could not explain why it happened. They drained it off and it's been okay since, but they never tested it. So I'm scared it is leukaemia back again, but they say not. I always feel so powerless.

She looks fine, but then gets a rash nobody can explain, or her counts drop and they aren't sure why. I'm on edge all of the time.

And you are right about RL: I can't talk to close relatives for fear of terrifying them, and everyone else thinks I'm doing really well even though the fact I'm massive quite clearly indicates I'm not, but nobody dare ask me for fear of releasing a tidal wave of misery...

I'll be here while you wait for her scan if you need somebody to talk to. You can always PM me if you want to write anything in a less public forum.

CURIOUSPARENT Fri 30-Dec-11 12:29:01

Kinky will be thinking of you as the scan approaches. We had so many of these and I know how awful it is, everything resolves around it.

I also put a couple of stone on when my DS was poorly, I think as you say you comfort eat, and also if you are at the hospital a lot I'm afraid for us it was convenience food.

Take care x

CURIOUSPARENT Fri 30-Dec-11 12:30:06

Sorry should have been tough re upcoming scan blush

FriskyMare Fri 30-Dec-11 12:45:41

DD was diagnosed with ALL at the age of 2 back in 2000. She is now a healthy, happy (stroppy!)beautiful 14 year old. We still go for yearly checks but the trauma of the diagnosis is now becoming a distant memory. My love and thoughts go out to all of you still going through treatment. x

OhDoAdmitMrsDeVere Fri 30-Dec-11 16:55:33

Thats fab to hear frisky. I am so pleased for you and her smile

FriskyMare Fri 30-Dec-11 17:15:17

Thank you MrsDevere, I think we were very lucky, she was only little and so did not understand the seriousness of her illness and most of the time she didn't appear poorly at all, bombing around the ward on a trike with dh or me running after her with the dripgrin One thing we did notice was that she drank loads of milk, at least 2 pints a day and she only got one tiny little mouth ulcer.Might be worth a try for those on treatment (consult your dr first tho!)

KinkyDoritoWithFairyLightsOn Fri 30-Dec-11 18:34:24

with dh or me running after her with the drip children's ward is full of parents who spend their days chasing after a toddler with their drip stand! grin It's lovely to see them with the energy for it. How did she get on with maintenance Frisky? Was it smooth going or did you find she was in hospital a lot? I'm really pleased she's okay now; she's a similar age now to my DD who will be 14 in 2012. Interestingly, DD seems to be going for milk quite a lot at the moment.

FriskyMare Fri 30-Dec-11 19:21:10

HI kinky, we didn't have any major problems although she did pick up an infection when she started at nursery and was in hospital for a month having all sorts of tests, and then she had severe pains in her shin when she had just finished treatment, we were warned it could be the leukaemia returning just in her shin, an awful 24 hour wait until the bone marrow came back clear, they still kept us in for another 3 weeks on strong anti biotics. She also managed to catch chicken pox after her 4th birthday party, another 2 week stay! I don't think we had many short stays due to temp spikes tho. I really hope your DD gets through ok, I think different children react in different ways and I hope the milk drinking helps!

KinkyDoritoWithFairyLightsOn Fri 30-Dec-11 20:00:20

She's been up and down and they think other things might be going on. She's attempting school again next week; she's now on second cycle of maintenance. It's hard work. Thanks for letting me know how you got on. smile

MsBazinga Fri 30-Dec-11 20:48:46

My heart goes out to all of you going through this terrible ordeal.

My DD was diagnosed with ALL at the age of 3.5 (she's now a healthy 29 yr old). She was on UKALL X which was very tough on her but luckily she only has happy memories of playing in hospital and being spoiled rotten smile.

I wasn't working at the time, we were very fortunate in having a supportive family, and ex-h had an extremely understanding boss who allowed him time off whenever he needed it. This made our lives so much easier.

We were assigned a hospital social worker who arranged grants from the charity now known as CLIC Sargent to help pay for driving lessons for me and help with a very large heating bill at the height of DD's illness.

We also had several very welcome and peaceful caravan holidays in the UK financed by the Leukaemia Care Society.

When DD was 5 she was allocated a home teacher who came to us twice a week for a year and on several occasions my DS's teacher allowed DD into the classroom once all the children had left for the day to familiarise her with the school environment until she was well enough to attend herself.

I realise just how lucky we were in receiving all this help and hope that it's still available to families in similar situations now.

My thoughts are with you and your children x

MsBazinga Fri 30-Dec-11 20:52:31

Sorry Kinky - should have added it's a lovely idea to start this thread.

Fortunately childhood cancers are rare and we did feel very isolated at the time our DD was ill.

lisad123 Fri 30-Dec-11 21:18:57

im not sure i should be on this thread as its for the children, but wantyed you all to know Im thinking of you all loads xx

toughday Sat 31-Dec-11 14:41:32

Thanks Curious, don't think scans will ever get easier.

frisky, thats exactly what our DD was like on the ward, we walked them corridors countless times followind DD on the drip.
DD also loves her milk, but we all love milk in this family and roughly go through about 14 litres a week. I also breastfed DD while she was on chemo which I think helped her a lot as on the days when she ate very little at least I knew she was getting some nutrition from me.

kinky, I completely understand about being on edge all the time. I'm lucky that I have very understanding health centre that will get DD in for an appointment at very short notice if I need it. One thing I have learnt is to really trust your own instincts.

Hope everyone has a happy new year smile

MsBazinga Sat 31-Dec-11 19:12:41

I can't agree more with trusting your instincts toughday. If I hadn't, it would have taken so much longer to get a diagnosis for my DD.

Did anyone else have to almost fight for a hospital referral? Our GP wouldn't listen to my concerns about DD - he kept insisting she had some sort of 'bug'.

KinkyDoritoWithFairyLightsOn Sat 31-Dec-11 19:18:27

Ms My story is on my blog. It's long and boring, but the upshot was a lot of fighting to get a diagnosis It taught me to always trust my instincts. What is sad is that I feel like I still spend a vast amount of time having to fight to be heard, especially when she is an in-patient and we get a number of doctors all suggesting different courses of action. How did you get her diagnosed in the end?

Lisa you are always welcome here smile.

Saying hello to tough and everybody else and here's hoping for a happy and healthy 2012.

Lilymaid Sat 31-Dec-11 19:19:15

DS, aged 20, diagnosed with CML in November - after a chance blood test at a visit to A&E to look at his leg which had been injured in a football tackle. Early days for him and us, so we are hoping that Imatinib works for him.

KinkyDoritoWithFairyLightsOn Sat 31-Dec-11 19:19:41

I didn't get a referral. In the end I took her to A&E, but still had a couple of months of messing from that point.

KinkyDoritoWithFairyLightsOn Sat 31-Dec-11 19:21:15

Lily I'm sorry to hear that. How is he coping so far?

Lilymaid Sat 31-Dec-11 19:58:13

DS is coping pretty well so far - but is the silent and stoic type. He's normally away at university - so he was 150 miles away from us when he was diagnosed. He was in hospital for 2.5 weeks, then went straight back to university and has even managed a holiday job over Christmas (no heavy lifting because of enlarged spleen). We didn't pick up on any signs that he was ill even though the consultant was surprised he was able to walk let alone play football and quoted ludicrously high white cell count, spleen was 1 foot long and he was very anaemic.
His leukaemia is normally one that people get in their 50s and 60s so no obvious role models for him!

KinkyDoritoWithFairyLightsOn Sat 31-Dec-11 20:44:35

So, he should be okay to continue normal life whilst taking the imatinib? I've just read a bit about CML. I know there's a difference between chronic and acute, but I'm pretty ignorant tbh. I'm really pleased to hear that he's coping well. It's awful that any young people have to go through this when they should be enjoying their carefree years. How are you?

I'm not sure how much I can add to this thread given that mine (and DS's) experiences are now 16 years old but I really hope that his recovery gives some hope. And I know how important that is. We clung on to every morsel, no matter how small during those early and very difficult days. I wish MN had been around then.

I wish everyone here a very Happy New Year and I hope that 2012 brings positive news, happiness and peace for you all.

And Kinky if you ever want to meet up for a coffee and a chat in town just let me know.

lisad123 Sat 31-Dec-11 22:18:33

lilymaid that's what my husband has!!

lisad123 Sat 31-Dec-11 22:23:26

It's those early days that are hardest before you get into routine of it all.
Thing I think I found hard was those early days when first dx, everyone rushes to help, but 6month later everyone has gone back to their life's but your still dealing with fallout. sad

Yup you're right lisad123 it goes on and on and on. For years until you are lucky enough to get the 'all clear.' And even then it is only as far as the next check up. We were very lucky in that one of my best friends was a Macmillan Nurse who supported us through thick and thin. We'd have been lost without her. She was ten times the support of my uncle who is a Professor of Nuclear Medicine, specialising in cancer treatments, who just couldn't be arsed to even speak to me.

lisad123 Sat 31-Dec-11 23:15:52

weird thing with DH cancer is he will never get the all clear sad he just carries on treatment for the foreseenable future. It sounds awful but you do settle into new life in the end. DH has blood tests and appointments 3 monthly.
We also have 2 wonderful macmillian nurses, who are great.

I think people assume, as we dont talk about it, and dh looks and is healthy (cancer aside of course) that its all fine. Most people assume he is in remisison, although he never gets true remission confused

lilymaid please pm me if you want the website of a good supportive CML board, there are a few there that are young too.

MsBazinga Sat 31-Dec-11 23:37:41

Kinky I will read your blog (when I'm more awake!), thanks for the link.

It's awful to have to fight - I just pestered our GP almost daily and told him I would take DD to A&E if he didn't refer her for tests. The hospital doctor who admitted her confirmed that most parents had the same problem being believed by their GPs and I'm so sorry to hear that this is still the case.

lisad123 Sat 31-Dec-11 23:51:50

Kinky I read your first post, sadly it's not uncommon. Dh cancer was missed for a year!! They still weren't looking for it when they found it, but found his white cell count was 382 and then went to 414 in a day confused

FarloRigel Sun 01-Jan-12 00:31:38

Hi all - and hi again to the OP, as I'm also on the Facebook 'Children With ALL (leukemia)' group. Great idea to post this here, everyone going through this needs all the support they can get and there's just not enough out there. My 5yo DD recently finished her treatment for ALL, we have had a tough journey but are hopeful that she will stay in remission now the chemo is finished.

Curious, I'm so sorry for your loss, there really are no words. Toughday, I so hope you get great news from this next scan.

Big hugs to all the cancer families out there, and since we've just gone past midnight, Happy New Year everyone - I'm wishing you all a great 2012.

KinkyDoritoWithFairyLightsOn Sun 01-Jan-12 09:39:21

Hi Farlo. It's lovely to hear that she has finished. Is life normal again now?

This is a link to the Facebook ALL group should anyone want to join:


FarloRigel Sun 01-Jan-12 13:25:30

Hi there, it's not really normal for us as her parents; the fear is still there big time as we're still in the first few months without the cover that the chemo provides so we're very aware that this could all kick off again with a moment's notice - particularly as she had a high MRD after induction (you'll have worked out who I am from the group by now wink). However, that said, we are keeping more positive and enjoying life more than we thought we'd be able to so soon after going OT and life is almost normal for HER and that is wonderful. I love seeing her with so much energy and I've been tearful at times with happiness watching her have her first normal, happy and well Christmas since she was two years old grin. I'm not sure life will ever be back to normal after all we've been through and the ongoing potential for relapse, but as long as she stays well I think we'll be more and more relaxed as time goes on and I can see the potential to be happy with a new normal further down the line. I do second the recommendation for any of the ALL families to join us on the FB list. We're a bit mad grin but very welcoming and more than happy for a chat and a virtual hug and brew at any time.

CURIOUSPARENT Sun 01-Jan-12 16:03:19

All the best to eveyone in 2012 - wishing all those having/recovering from treatment and in remission very good health for the future x

Stinkyfeet Mon 02-Jan-12 18:40:35

Hi and Happy New Year to all!

Something practical the cancer veterans can help with - ds1 and I will go into hospital for 3 days in a couple of weeks for his 1st full chemo. What should we take? Obviously all the usual pjs and toiletries, but what have you found makes a welcome difference to your stays?

lisad123 Mon 02-Jan-12 19:03:46

nice jams to spread on there crap crackers, and toast if feeling up for making some (take bread).
Lip balm, ice pops (first ward has freezer section), milk and tea bags/coffee, a good book for you, DS fav toys and a pack of cards.
DS pillow and yours. Chargers for phones and ds ect
MOney for when they paper and sweetlady comes round.
Not sure what else, will carry on thinking

ChippyMinton Mon 02-Jan-12 19:19:57

Excuse me crashing your thread all. Just wanted to pop in and say hi to stinkyfeet, and wish DS1 all the best for the forthcoming chemo. Will be thinking of you. xx

Stinkyfeet Mon 02-Jan-12 20:15:27

Thanks chippy, and happy new year.

Those are great suggestions lisa - will take decaff tea and coffee - wards are hard enough to sleep in as it is, without being full of caffeine as well!

And thanks for reminding me about pillows - ds had his radiotherapy under GA and we had to take his pillow with us every day as he hated waking up on the hospital ones!

FarloRigel Mon 02-Jan-12 22:33:08

Hi Stinkyfeet, wishing you all the very best for DS1's chemo. Everything lisad recommended is great. Here's our list of tips:

1) My DD always loved to take her favourite dressing up costume (Scooby Doo), it got loads of smiles and was a great ice breaker, especially from the night staff, we even got asked by a junior dr to pop her in it one night and then she was 'borrowed' to show everyone across in surgical lol!
2) She used to crave really sour things to take away the rotten taste in her mouth and wouldn't eat much else, so we always brought a big bag of pickled onion monster munch and she went through loads of apple juice. Lemon lollies might be a good one since your DS is older.
3) For if/when his hair comes out we found a pet hair roller invaluable because it used to annoy the hell out of her on her pillow so we could roller it any time she got up in the night. You'll probably be home for that stage though.
4) We also brought a portable DVD player and all her favourite DVDs and books as if the steroids kept her up at night the kids' TV was off and there weren't enough DVD trolleys to go around. She was too lethargic to play a lot of the time so that kind of passive entertainment was great.
5) Do bring loads of extra cheap changes of clothes for you both; hopefully he won't be too sick with it, mostly DD wasn't too bad, but it can happen and she had fearsome diarrhoea a couple of times too.
6) We also brought loads of cold drinks for ourselves, I don't know what it's like on your ward but on ours it could be hours and hours before we could get someone to be available to keep an eye on her and we didn't like to leave her on her own - although she was much younger so this is probably less of an issue.
7) Bring corsodyl mouthwash to help guard against oral thrush and nasty ulcers, and if you notice any whiteness developing despite that hound them to prescribe nystatin asap. We found a soft toothbrush really helped to keep the tooth cleaning going despite the ulcers (which he may well not get, it's just in case).
8) You may want to bring nappy/barrier cream, the urine and loose stools can be pretty caustic when the chemo starts passing through depending on what he's having! Being an older boy it's probably not an issue for him unless he gets really bad diarrhoea, but if he's due a lot of vincristine it can cause urinary incontinence so may be well to be prepared. Otherwise you could bring a bottle of oilatum for his baths to act as a barrier for the area.

Hopefully he'll sail through it and not really need any of that, but that's a list of the things we used through many complications over two years of chemo. Wishing you all the very best, hope he's one of the lucky ones who feels grand all the way through.

toughday Mon 02-Jan-12 22:44:04

stinky, adding to what lisa said, we used to bring a portable dvd player and loads of dvds. A few magazines, snacks, bottles of water, soup and diluting juice. I had to bring loads of things to keep DD entertained as the play assistant was rarely around and all the toys were locked away when she wasn't there.
I also brought my laptop and I got a dongle to accesss the internet, to pass a few hours as well.
I'll keep thinking

lisad123 Mon 02-Jan-12 22:48:12

Which hospital are you going to? I have a portable DVD player your welcome to borrow for a while.

toughday Mon 02-Jan-12 22:53:15

x-posted with farlo, thats pretty much everything we did as well, dd finished chemo over a year ago and its amazing how you forget things.
We found vasogen a great nappy cream, the hospital gave us a yellow thick one can't remember the name now, think it began with m,and it made the nappy rash bleed and ooze. The vasogen was brilliant and cleared it up in no time.

KinkyDoritoHopingForAGreat2012 Tue 03-Jan-12 07:14:53

I'm going to read and respond properly in a bit as we are up for the first school run in weeks.

I feel quite sick at the thought of her going back. The school is HUGE.


Is it unreasonable to lock all the doors and just stay here?

KinkyDoritoHopingForAGreat2012 Tue 03-Jan-12 07:55:00

So much for replying later, I'm procrastinating like mad this morning.

We used to move in to hospital!

I took her a single duvet and bought lots of covers for it, and pillow.
LOTS of pants (DD has just confirmed this grin)
Haribo or other fruit sweets to suck during chemo, soft ones though
Cheese strings (chemo makes them like salty stuff and the fridge in our unit used to be full of these and babybels)
Remember my pants too (I'd always forget mine blush)
They have DVD/TVs at each bed, so DVD boxsets and headphones if they want to watch them later on
Juice - she likes capri suns
Laptop if you have one and the ward don't
Things for you. I found when I was really worried, I couldn't concentrate on a novel (this got easier) so back to magazines. Last time I went in we got some craft materials from the playworker and I sewed Christmas decorations out of felt. I haven't done anything like that for years, I found that quite soothing - so little hobby bits if Hospital doesn't have them.
Important: food for you. Take in your own ready meals as it is usually much cheaper than hospital, and you don't then have to trail out to the supermarket if you don't want to.
Bottled water for you - lots - you dehydrate like mad in there.
Headache tablets for you (as above).
Nice slippers for both of you and robes if you have space.
If you have space, a duvet for you too. I never did this, but wish I had on the stays that turned into 5 weeks.

KinkyDoritoHopingForAGreat2012 Tue 03-Jan-12 07:56:01

Laptop if you have one and the ward don't

doesn't blush

KinkyDoritoHopingForAGreat2012 Tue 03-Jan-12 07:57:11

Hand cream for you too. The first stay my hands cracked and bled from alcohol gel.

KinkyDoritoHopingForAGreat2012 Tue 03-Jan-12 07:59:32

tough how shit that the playworker was hardly there sad.

lisad123 Tue 03-Jan-12 08:35:13

i worked alongside play workers at hospital for a few weeks when I was training. There was a lad there who was stuck in isolation sad we used to post notes under the door to each other. I left before he finished his treatment but still think about him sad 2 play workers, one was good, the other was naff.
Oh yes, hand cream!!

KinkyDoritoHopingForAGreat2012 Tue 03-Jan-12 09:56:41

We always end up in isolation. I really feel for the kids who have bone marrow transplants and are isolated for weeks, especially the little ones who want to go out and explore. At least with DD I can give her a laptop and she's happy.

toughday Tue 03-Jan-12 11:22:54

kinky, I had to bring enough stuff to entertain DD for a week, when the play assistant was there she always did crafty stuff witht he older children but as DD was only 2 I just think she didn't know what to do with her. When she took her holidays and another play assistant was there she was fantastic, she brought dolls and loads of stuff so dd could bath them. I asked her why the other play assistant didn't bring stuff like that and she told me it was locked away in another part of the hospital and probably just couldn't be bothered to get it sad.

Another thing I found was great was to do my grocery shopping online, I had never done it before DD went into hospital as we live quite close to the shops (I can see them from my house blush), but it was great to have all the groceries delivered to the house and not having to worry about taking dd out into the shops.

Also I also had a bag prepacked in the boot of the car with a toileteries, pyjamas and few changes of clothes for me and dd. This was for when she spiked a high temperature and had to go to hospital immediately.

Good luck kinkyto you and your DD today.

Stinkyfeet Tue 03-Jan-12 14:44:46

Thank you all - some really good ideas - I'm going to need a mahoosive case aren't I?! I can borrow a DVD player so will definitely do that. I know there's not much phone reception inside the hospital but think I'll take my laptop and dongle just in case.

Kinky - hope you managed to get dd to school OK and that the day goes well for her.

We're at the hospital on Thursday for an MRI scan, and again next week for a hearing test and kidney function test, so will properly check out the parent facilities on the ward - we've only been in day care so far.

KinkyDorito Wed 04-Jan-12 12:48:48

School was okay, but her joints were really hurting her. She's gone for 4 lessons again today (8.20-1.30).

I'm still strongly suspecting I'm kidding myself that she can manage FT. If she can't do FT than obviously I can't and I don't want to pressure her.

What to do?

I have a meeting with work in just over a week.

I hope everyone is okay today smile.

toughday Wed 04-Jan-12 16:40:36

DD back at school today, really excited after the Christmas break to see all her friends again.

kinky, I really don't know what to say or advise. I know myself that there is no way I could cope with full time teaching at the minute and I have been off 3 years now, maybe it's because the longer i've been away the harder it is to go back. Initially I wanted to wait till her chemo finished, now I think i'll wait till DS is in school.

The older cancer children I know haven't went back to school FT for at least a year and a half - 2 years after diagnoses. When they went back at the beginning they were both mentally and physically drained and could only cope with PT.

You know you DD best smile

FarloRigel Wed 04-Jan-12 16:59:07

We were so fortunate in a way, timing wise; my DD only had to do a couple of months of school before her treatment ended, but prior to that she had been putting in full days at nursery all through long term maintenance. I know that sounds cruel, but the only other option was having the house repossessed as nothing is selling in our area due to the closure of the largest employer and tons of houses sitting on the market.

We had loads of meetings with the nursery staff and then the school to explain how she would be, and our Clic Sargent nurse came with us to back us up. Nursery gave her rest/sleep breaks any time she wanted and she thrived there, although school was a bit more difficult about catering to her needs and was a bit of a struggle for her. In theory she should have had access to the school nurse any time she wanted for a rest break and to be able to opt out of any physical activity if she wasn't up for it, but in reality it didn't seem to quite work out like that hmm.

Both my husband and I went back to work FT after the first year but it was terribly hard and I wouldn't recommend it unless you don't feel you have another choice. If I could have gone PT or stayed at home I definitely would have! Too many debts after a year off work though sad.

lisad123 Wed 04-Jan-12 17:35:08

Kinky maybe you could look into a childminder for you going back to school. A homely environment and maybe they will keep her there instead of school ft?
Family or friends?
If I'm nearby I'm happy to help. I gave up work last year, not because of dh having cancer but because we were told dd2 had autism. I already had dd1 with autism and just knew something had to go so it was work.
Have you applied for DLA and carers?

KinkyDorito Thu 05-Jan-12 08:58:18

I do have some family who might be able to help, but the problem is that inevitably she ends up in hospital or with issues that she needs me to help her with (some really horrible, personal things that she's had as side effects). So, even if I could get someone to look after her, she would still need me.

Thank you all for your kind words and suggestions though.

She's staying here today as she's very tired from the two days she's done this week.

KinkyDorito Fri 06-Jan-12 10:04:35

Bumpity bump

scrambled Fri 06-Jan-12 22:05:17

Hello, i was wondering if you could all give me some advice.
One of my close friends has just had her eldest son (he is 5) diagnosed with an inoperable brain tumor. He is having radiotherapy to reduce his pain and symptoms, and they have been told they have 6 months max with him, but he will deteriorate in this time.
How can I help her? Words are so ineffective. She has another child who is 4 they are 11 months apart). I don't know what to do. Me heart is breaking fro her and her family.

KinkyDorito Fri 06-Jan-12 22:21:42

That's horrible. Practical support as much as you can - cook meals? Clean the house? My house was such a state as I was worried/in and out of hospital. Free up time for her so she can spend it with her children. I'm sure they'll have volunteers from charities to help too, but she'll probably feel more comfortable with you.

I am so, so sorry sad. I will be thinking of them.

KinkyDorito Fri 06-Jan-12 22:23:20

Also, if you drive, giving lifts when in hospital so they can avoid taking and leaving their car if parking is restricted.

lisad123 Fri 06-Jan-12 22:25:49

I agree pratical support.
Also maybe they would like a little family holiday together before he dies, so maybe see about that. Just be there.
Buy a video camera if they don't have one.

Stinkyfeet Fri 06-Jan-12 22:46:30

Scrambled, so sorry for your friend and her family.

Agree about practical stuff - taking/collecting the younger child to/from school or nursery. Washing, shopping, cleaning. I would assume he will have his radiotherapy under general anaesthetic, so they will probably be at hospital for 3-4 hours every day - it's hard to keep on top of everything else.

toughday Sat 07-Jan-12 12:36:59

Definately agree practical support especially with two young children.

Home cooked meals that could be reheated, bit of cleaning and washing clothes? Kinky my house was the same, the bare minimum of work was done. I remember crying in the kitchen with DH at the state our house was in in such a short space of time.

Scrambled, just even being there and listening can also be a big help.

KinkyDorito Sat 07-Jan-12 20:55:56

Still not really on top of the house yet blush. It's a constant war here! I would love a cleaner. I get very fed up and can't bring myself to do much. It just goes to chaos around me. Then I have a spurt and clean the lot. Then back on the sofa. It's a vicious cycle. I'd love someone else to do it for me.

How is everyone getting on?

I'm hoping you are all having lovely, peaceful weekends.

FarloRigel Sun 08-Jan-12 12:29:20

So sorry to hear about your friend, scrambled. I don't have anything very different to add, just agree with everyone who said to be there and give simple, practical support. You'd be amazed at how many friends and even family run a mile because they don't know what to say and so make the mistake of saying nothing rather than say the obvious 'I'm so sorry this has happened to your beautiful DS' and 'how are you managing today, how is he feeling today'. Or because it's so scary painful to watch and hear and they can't bear to just sit and give someone a hug without necessarily saying anything and listen to it all.

I have to admit, our house was a total disaster too all through treatment and still is but let's face it you do have so many other things to do and appointments / emergency admissions that you have so little time left for normal stuff. Plus you get a new sense of perspective about things like that, after all what are we going to feel bad about in a few years when we look back on how miserable they were - not getting that shirt ironed / room vacuumed or not taking our kids to the park when their counts are up and they can go for a change or not reading them an extra story when they really wanted one? Have to say though, I'd have loved a cleaner too and would definitely have got one if we could have afforded it.

We're certainly having a quiet weekend - we've all got this rotten cold that's going about! Luckily my DD is coping with it really well. Guess she's been off treatment long enough now to be able to fight these things. Plus she's still on her immunoglobulin so has had a bit of a boost dealing with this one. No doubt it'll make her bloods a bit odd this week and freak us out a bit but we're well used to that little 'joy' hmm.

Scrambled - so sorry to hear about your friend's little boy, that is very sad.

I agree with what everyone else has said about ways to support her, there are some excellent suggestions and were things that really helped us.

Although our outcome was different and DS made a good recovery, we were told that his chances were slim. Of course, everyone was worried sick and I felt as if I had to be as positive as possible for everyone else, particularly for both sets of GPs, which was exhausting. I only ever cried in private and the last thing I wanted was to be hugged by anyone trying to support me while I was trying to maintain that brave face. DP and my precious DS were the only ones who got close.

What I am trying to say - somewhat clumsily - is that I could have really done with a friend to say 'You can tell me honestly how you feel and rant and cry as much as you need. You don't need to put on a brave face for me.'

You sound like a very caring friend and I'm sure that whatever you do will help her and her family get through a dreadful time.

toughday Sun 08-Jan-12 23:25:46

We got a cleaner about half way through DD's chemo. It was one less thing to worry about and at least my floors were washed once a week.

When DD was on chemo we never had any visitors, friends said they didn't want to bother me as I had so much on going on but it would've been nice to see people just to have someone to talk to. DH's family live nearby but are too wrapped up in their own lives and very rarely help out. We only ask now if we are desperate. My family help out with looking after DS when DD is in hospital but they don't live near.

toughday Sun 08-Jan-12 23:33:24

Posted too soon, sorry that sounded very ranty. I felt really lonely when DD was on chemo and even now its still hard sometimes, especially now the scan is coming up.

Hope everyone had a lovely weekend

KinkyDorito Mon 09-Jan-12 09:16:44

I'm exactly the same as both Busters and tough. I didn't cry, instead I have repressed everything and left myself in, if I'm honest, a bit of a state, on ADs and 3st heavier. It would have been good to have had an outlet - someone to talk to.

Also, I felt very lonely. My family live over an hour away and all work, so, though they did help, it wasn't a matter of just being able to pop round when I felt fed up (and still do), plus I'm a bit imprisoned by things like tutor appointments and hospital so it's difficult for me to go there. I don't have many friends here anyway. A couple of people have visited, but it's been a pretty miserable year. That's why I started this thread.

lisad123 Mon 09-Jan-12 21:05:26

Theres a Bone marrow Q and A in aid of Expatinscotland (her dd has been dx with AML)

expatinscotland Mon 09-Jan-12 22:32:09

Hi, all. Thank you, those who PM'd me with links to this thread.

In November, our 8-year-old daughter got a bruise on her shin in our village's new playpark.

It didn't go away and, in about 3 weeks, it morphed into cellulitis. I took her to the GP, who prescribed oral antibiotics, but within days, he sent us to Yorkhill Hospital.

That evening, she was found to have leukaemia, and AML was confirmed via bone marrow aspiration a couple of days later.

The first block of chemo put her in remission, her sample going from 60 to 3% leukaemia.

She just completed the second block, more aggressive, yesterday, but was already neutropenic by Saturday so here we are again in strict isolation.

She has a lot of cramping in her gut, the pain now controlled by morphine, and a wee infection and is on IV feeds.

As some of you already know, she needs a bone marrow donor.

lisad123 Mon 09-Jan-12 22:45:17

welcome expat, hope you didnt mind my fb message (im misdee's little sister if you didnt already know)
I hope your holding up ok, and dd is too. Neutropenia is an arse, only had it once with dh in very early stages, but thing he hated most was not seeing the girls sad
Have done the bone marrow reg when dh was dx and found to have no match, and have dragged a few friends over with me too.
Will they be able to do a match drive for your dd?? They did this for a boy that had AML when we were kids.
thinking of you all on this thread, and always say a little prayer for you all too xx

expatinscotland Mon 09-Jan-12 22:51:11

Dunno if they'll do a drive or not. Only found out on Sat. that she needs an anonymous donor. sad

lisad123 Mon 09-Jan-12 22:56:36

Thats hard to get head round, but many success stories of stranger donation. DH will need stranger donation too, if he needs a BMT at any point, but his is complex because he has small red cells, and not sure if the extra 8th chormosome issue will be too (side effect of treatment). Stay strong, rant on here and look after yourself too.

FarloRigel Tue 10-Jan-12 00:03:04

Welcome expat! I know my own DD has had ALL not AML, but if you're wanting positive stories, we did have the most amazingly gorgeous little girl on the ward with my DD who had AML, they had real trouble getting her into remission before her transplant, which she had where you are (our centre doesn't do them). I believe it was a non-family umbilical cord donation in the end, since they're easier to match apparently, but it was a great success and she's doing wonderfully now. I'm really hoping they find your DD a match really soon too so she can get on with her life and doesn't need to spend too much time waiting.

My DD was neutropenic a lot and spent masses of time in isolation, so I really empathise. I hope she gets home soon. It's very hard to be imprisoned in a small box like that and the side effects of the first phases are very difficult. My DD needed a lot of pain relief through the intense phases too, and had a lot of gut trouble. As lisad said do feel free to rant here any time you like, or you're more than welcome to PM any time too.

Thinking of you.

KinkyDorito Tue 10-Jan-12 06:41:45

Hi expat. I'm sorry to hear about your DD, and I hope that the amazing response from MN helps you to find a donor. I've asked why they say no to people who have sciatica. I've had it on and off for years, but desperately want to go on the register. I looked into it as soon as she was diagnosed because of all the children who we met, and because - let's face it - if her ALL returns, it might be something we have to do too.

You are in my thoughts. I hope you have plenty of support around you, especially when you are in hospital as it is such a draining experience.

We've been in lots this year with DD as she is frequently neutrapenic and infected with something. She had a bowel problem where she needed IV food and she was on lots and lots of morphine. It was rough so I really hope you are okay as it sounds like your DD is going through it at the moment sad.

DD was diagnosed a year tomorrow. It feels like yesterday. I suppose it always will.

KinkyDorito Tue 10-Jan-12 09:12:14

Platelet rash, upset stomach and cramping today. No school again for DD.

Think I am kidding myself that she's going to manage to phase back in. She's managed 2 of 5 part days so far.

I can accept losing my job now whilst benefits can protect me. What the bugger am I going to do afterwards? I'm not someone who copes well with the unknown.

Sorry, I know I sound like a stuck record.

expatinscotland Tue 10-Jan-12 12:06:05

bad day today. aillidh is huge amounts of pain from distended belly. she's now on morphine pump. one surgeon has examined her and reviewed her xrays from this morning but can see no signs of perforation in the bowel, yet feels the head needs to look at her, just to be sure. he's in theatre just now so we'll see him later.

she's now on 3 ABs because of the problems with her gut, which are hopefully muscosity and inflammation from the chemo rather than performation.

haven't slept in ages.

expatinscotland Tue 10-Jan-12 12:07:59

Kinky, I know what you mean! Also have no one to help, and the nature of AML is that it means a lot of time in strict iso, so if one parent isn't able to take over (and DH can't because of our other children), then it falls to the other to do all the care.

I have lost nearly 2st.

KinkyDorito Tue 10-Jan-12 13:01:48

I hope they see her soon, poor girl. It's horrible. I've done the opposite to you, I gained 3st as I comfort ate like a crazy woman. Do you have people to talk to about everything expat? I bottled it all up, and I'm a wreck. I wish I'd walked around punching walls or something now, to try and vent the frustration and worry. Instead I got depression and anxiety issues. I need to be less stiff-upper lip I think. It's hard when you aren't used to sharing. Try and vent if you can.

I'd like to go somewhere really isolated and scream.

I hope they do come soon. Is it gastroentorology or however you spell it? DD had many dealings with them. I suspect bowel complaints are really common as both a side effect of leukaemia and of the chemo. They thought DD had chrohn's originally because she had that many things going on. Then in March, when she had bowel infection, they thought she had it alongside the ALL. Thankfully, she didn't. It's funny that whenever you need to see anyone, they are always in theatre, and then you daren't move for hours in case you miss them.

Let me know how she gets on. I'll be thinking of you both. smile

toughday Tue 10-Jan-12 13:23:25

Hi expat, sorry to hear about your dd. Please try and take care of yourself, you have to keep your strength up as well to look after your dd. Feel free to rant on here and be angry if you have to, we all understand. It is a very lonely situation to be in especially if your family is not near. We were very fortunate that my mum took my DS and he pretty much lived with her during DD's treatment, he was only a baby when DD was diagnosed and so didn't know any better.
Have you any neighbours or friends that could have your other children so your DH could give you a break?

Kinky, its a tough decision to make. Do you have a social worker at the hospital to help you out with benefits? Make sure that you are receiving everything that you are entitled to and see what grants is available from charities. If you have the energy, look at all your finances, bills, debts etc and see what you think. Is it possible for your school to give you two years out unpaid and hold your job? For me I was already off on maternity leave anyway and wasn't a huge drop and we have a very small mortgage and no loans or anything which helped. You can also try for ESA or carers allowance.

On another note there is a lovely charity called the Indee Rose trust which provides treasure boxes to children that are going through treatment. I only heard about them a few months ago through facebook. I think you just send them an email to refer your child.

FarloRigel Tue 10-Jan-12 14:04:48

Expat, so sorry to hear your DD is so miserable today sad. I hope they will come soon to put your mind at ease re. perforation etc. and she starts improving soon.

expatinscotland Tue 10-Jan-12 14:36:21

Well, in all fairness, I really needed to lose that weight grin.

The morphine pump appears to have worked a treat but they did have two surgeons, including the head paed gastro surgeon, in to examine her and look at her xrays. No perforation and her tummy is now going back down and she's trumping away in her sleep.

Her tummy was full of air, too, which they're using her NG tube to siphon off as she's on IV feeds through her Hickman line, anyway, and not getting anything orally until her gut clears up. They also stopped one of her anti-sickness drugs because the gastro surgeon says it slows up the gut too much, and she hasn't been sick in a few days now.

She's on 3 drips now!

I'll be sleeping hard tonight!

KinkyDorito Tue 10-Jan-12 14:56:29

That's great news. It sounds like she's settling for you. You'll have that lovely soundtrack if beeping to contend with tonight then! I'm pleased it wasn't anything serious. So many things to contend with all of the time.

expatinscotland Tue 10-Jan-12 18:57:31

She's getting pretty sick of being prodded. Hopefully she'll have a hard sleep tonight. Poor kid could use a break. Her meds are all being given through her line rather than her NG tube for a few days while her stomach and bowel hopefully recover.

Glad you found us expat. I did put a link on one of the threads but it was moving so fast. Glad someone had the bright idea to PM you! That one passed me by....

I hope you both get a good night's sleep tonight.

KinkyDorito Wed 11-Jan-12 09:04:02

At around 6pm this evening, it will be one year since diagnosis. I'm just really bloody pleased she is still here and doing okay. It was the worst day of my life.

tough thank you for your advice again yesterday. I am claiming what I can at the moment, and we will be fine whilst she's having treatment. My worry is what happens when the benefits stop and I have to get another job. I like the idea of a sabbatical. I think I'm going to go to the meeting next week and see what they suggest.

expat I hope you had a good night with your DD smile.

toughday Wed 11-Jan-12 09:46:27

Will be thinking of you this evening kinky, I can remember every detail of the day that dd was diagnosed. Hope your meeting next week can come up with a solution that you are happy with.

Expat- hope you and your dd got a good night's sleep.

KinkyDorito Wed 11-Jan-12 11:41:26

Thanks tough. How are you getting on?

toughday Wed 11-Jan-12 12:40:51

Doing ok today so far. Just waiting on the scan results now. It's a horrible feeling just knowing that your life could be turned upside down again. It's nearly a year ago since her tumor recurred and that has been playing on my mind so much.
DD however is doing great and so I am just holding onto that. She has to get all her vaccinications again shortly and I am not looking forward to that but I know she needs them.
Also haven't ate any crap today, yay, wanted something earlier but had a yoghurt instead so staved off any cravings for a while at least. Will try and do a bit of exercise too, intend to loose at least a stone by Easter.

How are you doing today? Was your DD able to go to school today?

KinkyDorito Wed 11-Jan-12 14:25:36

It's good that she's well in herself. I just really, really hope you get good news. I'm not surprised you're not looking forward to vaccines sad.

I've rejoined WW and I'm really trying to sort myself out a bit. Putting on so much weight has really not helped me feel like I can cope with the world. I've actually been using my cross trainer on an evening and it's making me feel a bit brighter, so I'm desperately trying to keep the momentum up with that. I've joined the Couch to 5k programme, although I'm really self conscious about going out running given I live where I teach. I mustered the courage on Sunday and on my first attempt ran straight into a load of teenagers I know - all 15st of me in leggings blush. I'm thinking about getting up early to go instead.

She did go to school today for the first time since last Weds, and was fine, so she can try again tomorrow.

You do very well avoiding the crappy food. It is so hard when it's your crutch and you are anxious.

4madboys Wed 11-Jan-12 14:34:03

just wanted to say i am lurking and thinking of you all.

expat there is a pic of a girl on fb, doing the round, along with a link to bone marrow donation, is it your dd? only i got the link via a mnetter, happy to share it to raise awareness and get more donors. am currenltyin the process of donating eggs, not sure i can do both at once! but i shall sign myself up.

sending lots of love and strength to you all xx

expatinscotland Wed 11-Jan-12 17:19:48

Yes, mad4, that's my daughter.

4madboys Wed 11-Jan-12 18:39:10

i thought it probably was, lovely lovely name! and she is very pretty too smile will be sharing it on my fb and will request that my friends do the same xxx

toughday Thu 12-Jan-12 10:24:47

Thanks Kinky, I would love to do running but I don't think I could do it, haven't ran anywhere in about 10 years.
Once I get started with exercise for a couple of days i'm grand, but then there is hospital appointments and I miss a day, then something else happens and another day is missed and then I find it so hard to get back into the swing of it. I used to do the 30 day shred so will maybe give it a go again.
Didn't do any yesterday, I look for any excuse to get out of it and the only person i'm cheating is myself sad

I'm glad your dd did well yesterday, it gives her a bit of normality with her friends and gives you a break for a couple of hours. I'm currently sitting on the sofa with DS watching DVD's, he's poorly today so he's enjoying the cuddling with me.

KinkyDorito Thu 12-Jan-12 13:16:36

I know exactly what you mean tough. You are the same as me - I manage it for a bit but get thrown off track easily. No break as I've also got a poorly DS! He's not been allowed to the childminder for over a week now. I would love a quiet hour or two. He's had an eye infection, and today he had to have the fklu jab booster because of DD, so that's made him a bit out of sorts. I'm being forced to play firemen non-stop, and I have to wear the helmet too. I look very fetching in it grin.

Stinkyfeet Thu 12-Jan-12 14:56:57

Hi, just thought I'd check in and catch up. Sorry to hear about your dd expat, I'm quite new to this journey as well, so still getting used to it all.

Toughday - fingers crossed for the scan results - do you know when you'll find out?

We're all set for next Wednesday when ds and I will go into hospital til Friday for his first chemo - he's having vincristine, cisplatin and lomustine. The nurse showed me round the ward yesterday - can't believe how busy it was. But it's all new and looks fantastic.

Ds had a scan last week that has come back all clear, so that's a relief for going into the next phase of treatment. His bloods are all back to normal. He's got a good appetite at the moment and is putting weight back on. Although I've heard now that most children on his protocol need to be tube fed at some stage - not looking forward to that at all.

toughday Thu 12-Jan-12 16:05:47

We don't get the results until the end of January. We might get an unofficial report next week, but I always wait to the official report is done before I breathe again.
Good luck stinky for next week. Great that you had a clear scan. DD had vincristine and cisplatin as well but not lomustine. DD never needed to be tube fed although she was close at one stage during her first cycle. After that she perked up and ate ok throughout the rest of her chemo. One thing another mum told me was to let them eat whatever they want which is pretty much what I stuck to throughout. There was a stage where DD ate wotsits for breakfast, lunch, and dinner. She is a great eater now and loves her vegetables so no long term damage was done.

Kinky I ended up playing with the toy cars, think I got off lightly. Thats good that your DS still goes to a childminder. My DS will not stay with anyone except my mum. I used to take him to toddler groups but he just sat on my knee the whole time and wouldn't play with anyone. He is a very clingy child now and I dread him starting pre-school in September. I have to start potty training him soon too but he is so stubborn. I'm hoping for him to decide himself to wear big boy pants but it's not lookng likely anytime soon. Every time I buy a packet of nappies I say it will be the last smile

lisad123 Thu 12-Jan-12 16:08:52

DH has had a few days of diahorra, but insisted on going to work hmm He just rang to say he asked to go home and getting worse but boss has asked him to stay hmm
I always worry as this is how it all started, with loads of bugs sad
His due a blood test tomorrow, so guess anything will show up in that.

KinkyDorito Thu 12-Jan-12 16:56:11

tough my DS will start pre-school then and he is still very much in nappies and refusing point blank to budge - too clever for his own good and he wants to be 'a baby' still. Great. This year has made him incredibly clingy. He still goes to childcare simply because I still have to pay for it all and keep him in the routine in the hope that I might get back to work. He does quite reduced hours and leaving him is always tough as he wants to be with me all the time. He was just sat watching TV a moment ago, and then turned round in a panic to check I'm still here. It's like he's always worried I'm going to go somewhere and not take him, and I think it comes from the hospital stays with DD.

Hugs lisad. He does really well still working - I guess it helps to keep him sane, having a different focus. It's an arse they won't just let him home if he doesn't feel up to it.

Stinky I'm pleased scan results were good. How long will you be staying in hospital for? Remember your hand cream grin. Mine have all cracked again this year from furious hand-washing, and I'm not even in hospital at the moment confused.

lisad123 Thu 12-Jan-12 17:02:08

His is in some ways an easier cancer, less intentive chemo ect. It also means there is no cure and he remains on treatment forever. He had to go back to work, we needed to be "normal" and his normally fairly well with it.
Im just worried he has developed a resistance to his treatment. He started to develop resistance about 18 months into the first treatment, and so was changed onto this treatment when the cancer cells started increasing. We are hitting 18 month mark on new treatment now confused

That's excellent news about the scan Stinky and I'm keeping everything crossed for you tough. We're back at the Bexley Wing at Jimmy's on the 18th for DS's annual check up to see the oncologist and endocrinologist - he had growth hormone for 3 years as radiotherapy to the head tends to knock out the pituitary gland a bit. Both DP and me are from 'tall' families and DS is now about 5' 8" which is pretty good. He's also on thyroxine due to the pituitary being under active.

They are extremely thorough and it is very far from a quick chat and a 'see you next year' type of appointment. He likes me to go with him even tho he's 24 now but after last time when they asked him about sexual function I've told him I'll wait outside blush

I know that it's probably much further than you can bear to think about but the long term care for those who had cancer as children is excellent. DS has had full heart and lung function tests - to assess long term effects from spinal radiotherapy, many others I've long since forgotten and has taken part in dozens of surveys and reviews designed to improve children's cancer services.

Lisad hope your DH is feeling better and that the blood test comes back ok.

And Kinky I was serious about going for a coffee smile You can rant to me as much as you like.

And Expat I saw the tweet about your DD. She's a lovely girl. I've re-tweeted. Not that I have many followers but it only takes one to be the right match.

Vev Thu 12-Jan-12 22:19:27

Gosh kinky read your blog and i can't believe what you had to go through to get a diagnosis. Hope life's better for you soon.

expatso sorry to hear about your daughter, and hope she feels better soon.

FarloRigel Fri 13-Jan-12 00:13:22

Just wanted to pipe up and send a big grin to stinkyfeet re your DS's scan and wishing you all the best with your DD's toughday! Likewise hope your DH's bloods are perfect tomorrow Lisad - is he sick a lot? If so would they consider checking his immunoglobulin and topping him up if they're not doing it already? It made a massive difference to my DD.

toughday Fri 13-Jan-12 10:59:27

Good morning everyone.

Lisa, hope your DH feels better soon and hope all goes well today.

Thanks busters and farlo, hate this waiting, just wish they could tell us the results sooner.

Kinky, I just read through your blog there and agree with everything you have wrote. My DS is the same age as your DS. He was only a baby when DD was diagnosed and was still fully bf. Looking back now I wonder how I coped but you do get the strength from somewhere. DD went back onto being bf at that time and only stopped when she started school.
That's how DS is as well re the clingyness. He doesn't like going anywhere that he is not familiar with. When visitors come into the house he is scared that I am going to leave him with them, when we visit my mum he is scared I am going away again, and as you say he doesn't know if it will be for a few hours or a few days.

Stinkyfeet Fri 13-Jan-12 18:01:53

Thanks for all the good wishes. We'll be in hospital from Wed until Friday. I have my hand cream and have started a list of all ds's fave snacks to take in with us! Will be able to update from there as they have wi-fi in the ward.

KinkyDorito Sat 14-Jan-12 12:56:48

Hi tough. It is very tough on the little ones. I just hope they forget all about it as they get older. Your DDs memories of treatment should fade too. I really like the idea that you went back to bf your DD at that time. I can completely understand that urge to comfort. You just want to take it all away from them and get them as close as you can. I've spent a lot of time holding DD, even though she's nearly the size of me.

Stinky We LOVE wards with wi-fi. I will be around avoiding housework so will keep an eye out for you. I'm happy to aimlessly chatter for hours rather than get stuff done. grin My work meeting is Wednesday, so I'm liable to need some hand holding then.

Hi Busters and thank you for the offer of coffee. I'm tied up all the time with pinging around between school, childcare, hospital. It's hard to have a completely free couple of hours to get into town, but I will certainly ask you when things get calmer. smile

Lisa How were DHs bloods? I hope he's okay.

Vev well done on getting through my blog. I hope you didn't feel too depressed afterwards grin. Thanks.

Hammy01 Sun 15-Jan-12 22:41:05

Hi ladies hope you don't mind me posting.
I've been asking advice on another thread can a lymphoma be misdiagnosed as a virus and a couple of mnetters recommended this thread.
We've just been allowed home from royal mars den awaiting bone marrow and lymph gland biopsies that shoul be told to us end of this week...this not knowing is driving me crazy with worry sad

lisad123 Sun 15-Jan-12 22:51:36

His feeling loads better so likely a bug. He wasn't allowed in to do bloods because of noro virus outbreak at hospital. His fine but will make sure he has bloods done this week.

No probs Kinky completely understand. Been there and know how it is. Bit daft of me to suggest it now really smile

FarloRigel Sun 15-Jan-12 23:45:26

Hi Hammy, glad to see you on here too now. Really glad you were allowed home, nothing like your own bed and your own space. Keeping fingers crossed for you for good news.

Lisa, so glad to hear he's feeling better smile.

KinkyDorito Mon 16-Jan-12 08:01:56

Hammy it certainly sounds like you have the definitive tests now. They are all misdiagnosing things, and I treat 'virus' as a kind of cover-all for being a bit clueless about what's going on. One way or the other you will know soon, and you will get through it. I need to find your other thread and have a read. Hugs to you though. The not knowing is horrid. I was relieved when she finally got diagnosed as at least I knew what we were dealing with after 3 months of messing around, all the time untreated. This too shall pass: keep telling yourself that.

Busters Nooooooo! It was not daft - I would really like to, it would be nice to chat to someone else about all of this in person, it just might be a while before I can get away. I haven't got anybody to talk to really. It would be lovely to meet up. smile

lisa glad he's feeling brighter. Good news smile.

Hi Farlo how are things with you?

KinkyDorito Mon 16-Jan-12 08:02:36

should say always misdiagnosing not all blush

KinkyDorito Mon 16-Jan-12 08:12:04

Hammy it certainly sounds like you are going through it. I think Farlo has given you some great advice on there.

I would say, step away from google. If you want to chat to an expert, ring one of the cancer helplines like Macmillan. We are also here for you.

My blog entry about when DD was diagnosed:

This is what we went through.

Remember to take good care of yourself: eat and rest if you can. You need to keep yourself strong.

I'll be thinking of you all.

PeppermintPanda Mon 16-Jan-12 13:05:04

Just found this thread. May I join you all? My DD1 was diagnosed with high risk neuroblastoma in May 2009. 2 and a half years of chemo, radiotherapy, operations, high dose chemo, immunotherapy and differentiation later and she's been in a partial remission since August. She was in PICU on a ventilator for a few days in October with meningitis and she's still off school recovering. She's managed 2 mornings so far this term.

Kinky, I can't believe you all had to go through so much to get a diagnosis. I guess it's hard when the symptoms are so vague. We were lucky, I think, because although NB usually also has very vague symptoms, we were immediately sent for tests and they were followed up. We knew within about a fortnight that it was a cancer, and within a month we knew the type and started treatment. I've heard so many stories though, of NB being missed for months as the child gets more and more ill. DD1 has never been unwell from the cancer, but the treatment has made her very ill. She weighs the same now as she did when she was diagnosed - her little sister (who was a baby when this all started) is now taller than her, and has moved onto the 4-11 years car seat while DD1 is still in the one she has had since she was 1!

PeppermintPanda Mon 16-Jan-12 13:08:36

Should have said - DD1 is now 6.

toughday Mon 16-Jan-12 17:23:03

kinky I think it was more of a comfort for me as well. This was something that I could do to make her feel better because I felt helpless otherwise.

lisa glad your DH is feeling better.

hammy, I have no experience of lymphoma but am hoping you get good news.

peppermint your dd was diagnosed round the same time as my dd. I have found this thread to be a great support

Whenever you're free Kinky - don't want to add to your already chocka to-do list!

Hope everyone is ok

Hammy01 Mon 16-Jan-12 21:32:10

Kinky I read your blog, made me cry I must admit.
You are all such amazing ladies.
Thank you for your support and I hope to be able to support you all should you need it, whenever you need it

FarloRigel Mon 16-Jan-12 21:46:00

Hi Kinky we're fine thanks, DD's doing well and her blood counts were fine on Weds which is always a big relief for another while until the next sneeze, pale skin day, funny mood, bruise or blood test grin.

Welcome Peppermint, please do join us smile - so sorry to hear your DD has been having such a tough time. I have a couple of friends from our hospital whose DDs have neuroblastoma, that's one very tough treatment regime sad. Really glad to hear you got the immunotherapy, I understand that can be a real struggle.

toughday Wed 18-Jan-12 15:50:44

All the best for today Stinkyfeet.

Hope everyone else is keeping well smile

Stinkyfeet Wed 18-Jan-12 16:37:26

Thanks toughday - we're all settled in. They've put us in a private room with our own bathroom, comfy sofa - it's bloody lovely!

Ds is on a saline drip at the moment in preparation for his cisplatin infusion overnight. He's in good spirits - much helped by the snack trolley brought to his bedside, and being able to choose what he wants for tea from an extensive menu!

KinkyDorito Wed 18-Jan-12 17:32:23

Hi Peppermint. It sounds like you've really been through it. I hope things are much more settled for you all now.

Love the private rooms Stinky. The one in the teenage unit DD was in on our last stay had TV/DVD wall mounted, a PS3 (not that I would have a clue what to do with that) and our own bathroom and shower. Nice! I also got free reign over the craft supplies so I faffed with felt until my little heart was fit to burst with crafting happiness. I haven't done anything like that since I was a kid - I was amazed how calming it was.

I am around. I had my meeting today.

I'm phasing back to work! Woo!

I'm very excited, and trying not to get my hopes up too much about it.

The down side is that I will be leaving DD by herself for about 6 hours on one day, which isn't ideal. She will be 14 this year though, and I would never, ever leave her if she wasn't well. But at the moment she isn't timetabled full time school, so I sit at home with her whilst she goes on the computer all day and makes herself snacks. I don't do anything. It seems daft when I work 5 minutes away and my childminder with DS lives a couple of doors down. Our neighbours are usually in too. I still feel very, very guilty though and like I will get bad parent of the year award for even considering it. It's daft really, given that I used to stay at home by myself at her age all the time.


It is hard to know what to do for the best. I do need to work though, and if I drop my contracted FT it will be difficult to get back after all this stops and I need the money from it. My friend at work has recently had an hours increase refused.

I'm going to see our social worker tomorrow and check I'm not breaking the law or anything.

Vincristine and bloods tomorrow. It's hospital day.

KinkyDorito Wed 18-Jan-12 17:33:56

Should have said hello to everyone else too!

How's things Hammy and Tough?

I'm pleased your DDs bloods were okay Farlo.

ChippyMinton Wed 18-Jan-12 17:34:21

Hi Stinky. Hope it goes well. I will be thinking of you guys as DD is off to Weds cubs tonight. Fingers crossed that we see your DS back there sooner rather than later smile It's hobbies and collectors badges tonight - Akela has forbidden anyone to talk about playing football or collecting Match Attax!

That snack trolley sounds excellent!

toughday Wed 18-Jan-12 18:04:34

That's good stinky, they usually try to make things as comfortable as possible for everyone.

Don't feel guilty kinky, you may find it will do you good to get into a routine of your own again. You could always pop home for lunch as well grin.

All going well here, still no results from scan yet but feeling more positive about everything. smile

KinkyDorito Wed 18-Jan-12 18:24:18

Our lunch break is 30mins, but they have taken me off any lunchtime duties so I can go back and forth if I need to. They were very supportive and I feel daft for being so scared about it.

I'm pleased things are okay tough.

Hammy01 Wed 18-Jan-12 19:10:01

Hi everyone, had a call from the doctor at mars den and she confirmed that no trace of cancer found in ds bone marrow but need to wait for the biopsy results to come back still.
So good news that his marrow is clear fingers crossed that if he has got lymphoma then it hasn't spread too far!
So we're hopeful but still none the wiser really tbh.
Hope everyone else has had a goodish day today?

Stinkyfeet Wed 18-Jan-12 20:48:39

That's hopeful news then Hammy, hang in there.

Kinky, that's great about getting back to work - you must be relieved, if a bit nervous. I'm sure DD will be fine - I loved being on my own at that age!

Thanks for your thoughts Chippy. Hope it went OK for DD this eve.

KinkyDorito Wed 18-Jan-12 21:03:45

Thanks Stinky.

Hammy that's fantastic news! smile

FarloRigel Thu 19-Jan-12 00:03:32

Stinky I'm really glad you're settled in well and he's happy, I hope your inpatient stay breezes by and he's not too affected by side-effects.

Kinky I'm really pleased for you that you're phasing back into work and they're being understanding and supportive.

Hammy I'm so happy to hear this news, everything's crossed for you that the good news keeps on coming!

Hello everyone, hope you're all having a good day.

That's great news Hammy! Glad to hear about work Kinky as Stinky says your DD will be fine. I also loved some home alone time at that age. Still do now...

DS had his annual check up yesterday and all is well. They've booked him in for another cardiac scan just to check that everything is ok. I thought it was only about 3 years since the last one but it was actually nearly six! It's strange. Some times it feels like it was a lifetime ago and other times it's as if it was last month.

KinkyDorito Thu 19-Jan-12 15:47:47

I'm pleased he is well Busters. That's good news.

DD is once again neutropenic. Pffftttt.

They've taken her off chemo for the week to give her a boost (again). She's okay in herself, but her platelets are low too and she's covered in platelet rash. She's a bit too high for transfusion though.

As she's still had her vincristine today, I'm going to keep her off tomorrow.

Consultant was supportive of my wanting to go to work, and assures me she is well enough in herself for school, in spite of neutropenia. (It's just a shame her school is a massive 2000 kids and rife with infection at this time of year.) Social worker was also great, said she'd be fine at home but they can give me a volunteer to come and sit with her for a few hours if I like. So, I will try her by herself, but if anything makes me anxious I'll ask for a helper.

That's all assuming she stays well enough for me to even attempt it.


That is all smile.

Thanks Kinky sorry to hear your DD isn't so good. Chemo is such a horrible thing to go through. And yes - she will stay well!!

I wouldn't worry to much about her missing school. DS missed the best part of a year, what with being ill before being diagnosed and then months after surgery and radiotherapy when he had zero immune system. He did GCSEs and A Levels with his peer group. His results weren't brilliant but part way through his A Levels he decided he wanted to study music rather than IT.

He finished his A Levels and then went on to do a foundation course at our music college and then went on to get a degree. Yes, he was 2 years older than most people on his course but it doesn't matter. Education is available to everyone. There are no rules to say that you have to start a degree when you are 18. There is plenty of time. In the great scheme of things school and GCSEs are way down the list.

toughday Fri 20-Jan-12 22:33:46

Great news Hammy

Busters great all was well with check up.

Kinky she will stay well, stay positive. Sounds like you are getting great support for going back to work.

lisad123 Sat 21-Jan-12 10:40:32

Just checking in. Glad to see everyone is doing ok ish.

Lilymaid Sat 21-Jan-12 11:57:12

Garbled phone message from DS2 (diagnosed with CML in November) that he had been to the clinic and that he might be in remission and that he would go back in 5 weeks for a different test. He's 20 and at university so is currently more concerned with end of semester exams and whether he can now drink alcohol/pull weights/play football than with his old worried parents.

lisad123 Sat 21-Jan-12 13:17:43

there is three stages to remission with CML lilymaid, and you exspect to reach the first within the first 3 months. There is something called 3 log remission, so first stage is heomological which is the normal blood test results, then cryogenical which is bm results and finally major molecular response, which is true remission which means your BCR-ABL (very sensitive test) shows 0.1% or less of the cancer cells remining.
DH was the same, he wanted to be back at the gym asap. Sadly for us 3 years in, his still not met remission, but he is a rare case. He is however back at work and the gym smile And to look at him, you would not have a clue anything was wrong.

Lilymaid Sat 21-Jan-12 17:31:50

Thanks for the information Lisad ... hoped you would respond. It is impossible to get much information out of boys! Keeping my fingers crossed for your DH. I know what you mean when you wrote "And to look at him, you would not have a clue anything was wrong." Exactly the same with DS - no reason why anyone not knowing would suspect there was anything wrong.
DS hasn't changed his plans - year out abroad, trip to USA (has checked his insurance position) and we would not try to stop him doing what he wants (he'd do it anyway). We just hope he doesn't develop resistance to Imatinib and that in 15 years time, when he has his own family (and gene therapy has developed), he'll appreciate why his old parents were so worried for him!

lisad123 Sat 21-Jan-12 22:46:12

I'm are his doing well, the drugs have got very good.
As for children, I guess he hasn't considered it yet. We have been advised not to have children while dh remains on treatment as there is a high risk of abnormalities sad some people have had kids on treatment and been fine, others have had a treatment break to have kids. We have two girls with SN, we couldn't risk it at all.
As for resistance, it boads well that he met first stage remission within 3 months. Dh first treatment never was along the normal line.
Boys are a pain for head in sand reactions.

FarloRigel Mon 23-Jan-12 11:24:47

Hope everyone's doing well and has had a good weekend.

Hammy, have you had any more news? Have been thinking of you.

Stinky - dope DS is doing well and not suffering from too many side effects.

Wishing you all a good week!

KinkyDorito Mon 23-Jan-12 12:58:55


Phone call from hospital. There is definitely something else going on. They think she might have a nasty little condition called hemachromatosis as well as leukaemia. She has to go and see a liver specialist.

The hollow thunking sound is me smacking my head against the wall.

lisad123 Mon 23-Jan-12 13:51:43

Kinky I'm so sorry to hear that sad hopefully they will get her in and sort her out very soon xx

FarloRigel Mon 23-Jan-12 14:00:09

Really sorry to hear that Kinky, I hope they can get that under control soon. Hope her liver is OK. Hugs x

Stinkyfeet Mon 23-Jan-12 18:10:21

Oh Kinky, what a blow. Are the 2 conditions linked or are they completely separate? I hope dd is OK.

Ds is doing fine after his chemo, he went to school for a couple of hours this morning. The hospital have said that he'll probably be at his lowest point this weekend, then will start to come back up and hopefully as normal in his 3 week break. He's just got vinc this wed and next, then nothing until 29th Feb. That's assuming he stays well of course.

Toughday - any news yet?

Lily, that all sounds good - your ds certainly seems to be taking it all in his stride!

KinkyDorito Mon 23-Jan-12 18:27:13

Thanks all.

Not linked. Hemachromatosis can be a result of blood transfusions, but in this case her levels are too high for that. It can cause organ damage and liver cancer. It's treated by blood letting sad. It can't be cured. And if not that, lord knows what it is but if they don't do something about her iron levels soon, I'm worried she'll be damaged - they've been up since September.

Oh no Kinky sorry to hear that. I hope they get it sorted soon.

Hammy01 Mon 23-Jan-12 19:33:04

Sorry to hear about your dd kinky, hope they can help sort her out asap, very worrying for you though.
We had our doctor appointment at the mars den today and thankfully ds has been given the all clear...they have diagnosed him as having had Epstein Barr virus.
We are relieved of course, still feel shellshocked tbh and felt so guilty as well...all those children that we spent time with in the hospital who are so young and brave having their treatment...breaks my heart.
And all you mums out there that have supported me through these horrendous few weeks, words cannot express how thankful I am to you all and how much I hope that your beloved children will also complete their treatment and be on a road to recovery very soon.
Thank you from the bottom of my heart ..sounds inadequate in what I want to say to you all but I am so very grateful to you all thanks

KinkyDorito Mon 23-Jan-12 20:00:40

Hammy I'm so pleased for you all, that's great news! I hope he starts to feel much better soon. What a relief smile. DO NOT feel guilty! Nobody going through this would ever wish it on anybody else. Those people from the ward will be so relieved for you too. Pop back and let us know how he's doing.

Hammy that is brilliant news! You must not feel guilty for a moment. We all wish that our DC will be diagnosed with something other than cancer and no one would ever, ever want you to join us. We are an exclusive club, with a far too big membership group, but everyone is welcome. Please don't feel you have to go if you need support.

FarloRigel Mon 23-Jan-12 22:36:49

Oh, Hammy! How wonderful! grin gringrin I am so very happy to hear that! Every family that has to tread this path is one too many and I'm so pleased it hasn't happened to you. Are you home now, then? If so, I hope you're having a lovely night with a few bottles glasses of wine and letting some of that tension out. Don't be too surprised if you find yourself weeping uncontrollably in a few days, though, after the stress you've been through lifts and the adrenaline starts to clear. It's happened to me after good news, and that's the best news ever!

Kinky, I'm really sad you're going through this. Are you on the ALL-Kids listserv? If not it may be worth joining ( and asking on there if anyone has experienced something similar, just in case there's another explanation.

toughday Mon 23-Jan-12 23:19:05

Hammy what wonderful news, I am so happy for you and your family smile

stinky that's one down, I had a calender and marked off every week and then every cycle, it was so nice seeing each full cycle completed.

Aw kinky, I know someone who has that as well. Very similar symptoms to anemia, he thought he was anemic and took iron tablets not knowing that it was making him worse. He was diagnosed a few years ago. The nurses had to take blood from him, not sure how much, every month until the levels settled and now its checked every 6 months or so. He took milk thistle as its good for the liver I think but they had no other conditions so I'm not sure if your dd could take it. I'm sending you big {{{hugs}}} and hope that your consultants can do something quickly.

We still haven't heard anything from dd's scan, so i'm relying on the no news is good news, last year when her tumour recurred we heard within a week so it should be fine.
A few weeks ago we had her hearing tested and they thought that dd may be partially deaf in one ear. I wasn't too worried as a one stage during her chemo they told us she was completely deaf in that ear and the next appointment her hearing was back again confused. We had another appointment last week which concurs that she has lost a lot of hearing in that ear. The consultant said that it was probably the radiotherapy that caused it but as it was needed to save her life its a small price to pay. They are just going to review her every few months and then maybe a hearing aid when she get older. Don't know how I feel about it, I agree with the consultant and I know we are very lucky to have her here with us but it'll just take me a couple of days to accept it.

ImperialBlether Tue 24-Jan-12 18:21:34

I've been reading this thread and am in complete awe at the way you are all coping. I wish there was something practical I could do to help someone in your position.

I tried to join HomeStart but was told they weren't training anyone for at least another year.

Does anyone know of any other organisation that I could join where I could volunteer to help a family in a situation like this? I'm CRB checked (a teacher) and a single parent of children now in their 20s. I have so much time on my hands and could easily spend some time each week just making myself useful. I just don't know how to go about it. Any ideas?

Stinkyfeet Tue 24-Jan-12 21:07:07

Hi Imperial - try Rainbow Trust - they provide volunteer support workers for families - we've not needed them,but I'm sure they do fantastic work, just like many other charities.

Also Clic Sargent who are great.

Great news Hammy grin - you can breathe a massive sigh of relief now. Best of luck to you and I hope ds recovers quickly.

Toughday - the waiting must be agonising, but hopefully as you say, no news is good news. Sorry to read about dd's hearing - it must just seem like the nightmare is neverending sad.

ImperialBlether Tue 24-Jan-12 22:55:43

Thanks for that stinkyfeet (sorry, but I don't like your username and hope it doesn't refer to you!) - I'll get in touch with them.

lisad123 Tue 24-Jan-12 23:26:58

you could try your local childrens ward. Sometimes all parents need is someone to sit beside their child so they can go have a shower, loo or make a cuppa.

KinkyDorito Wed 25-Jan-12 08:42:33

Imperial I'll give you my address grin. No, Clic Sargent are the people who will help me out if I need someone to come in and sit with DD when I try to go back to work.

tough lord knows what the implications are alongside chemo. I don't know whether I should be hopeful it is this condition or not, because if it's not, it's something else and that could be even more dangerous. I just know that high levels of iron can cause organ damage. Her enlarged liver was one of the first symptoms eighteen months ago. Obviously, everyone thought this was from leukaemia, but she has been getting unusual liver function results throughout that no Dr has been able to explain. I don't know how scared I should be at this stage. I'm restarting work in just over a week and focusing on that. She's okay in herself at the moment, just neutropenic and her platelets are now 27, so on the brink of transfusion again. She's quite tired, so she's staying at home this week. Every time I feel like I have a stab at trying to be more normal, something comes along and throws me again sad. The uncertainty is wearing me down sad sad sad.

toughday Wed 25-Jan-12 16:57:37

Imperial, that is such a lovely idea, agree with others, you could contact clic sargent or macmillan to see if they need and volunteers. What Lisa said is good too, especially for the parents of toddlers in the wards. They are a really awkward age as they don't understand and DD was liable to tug or bite her tubes, you can't leave them alone for a second, even when they are sleeping. I had DD at my side the whole time and I had to wait till DH came in to pop to the shop etc.

kinky, take one day at a time. It's really tough not knowing what will happen next week or next month. After DD was diagnosed we were told our journey was going to be like a rollercoaster, a lot of ups and downs. You find a way to cope with whatever is thrown at you and you get the strength from somewhere. I'm sorry i'm really not that good with words. Looking back at the last 3 years I think I switched to autopilot during the worst times. I put my trust in the doctors and hoped that they would do the best by DD.
You can always get a second opinion if your not happy with something, most doctors don't mind you doing this.

FarloRigel Wed 25-Jan-12 17:07:30

That's lovely, Imperial. If you're crafty a really helpful practical thing to do is make Wiggly Bags. Go to for instructions and either send them to the address beneath or bring them to your local children's hospital. The kids love them and it really helps keep them safe from serious injury and infection risk.

KinkyDorito Thu 26-Jan-12 19:03:02

Have just got out of hospital after DD had a scary turn yesterday afternoon. She got pains, couldn't breathe and fainted. It happened again in the car on the way down.

Some of her bloods were a bit off, but scans showed nothing so they've discharged her. She's due back for a lumbar puncture on Weds.

I was very frightened sad.

I also suspect something is brewing. These things don't happen to DD without something transpiring. She's gone with her Dad for the weekend and he is under strict instructions to keep a close eye.

Feeling pretty down at the moment.

Lilymaid Fri 27-Jan-12 10:04:52

Hoping that things are looking a little better for you and your DD today, KinkyDorito.

toughday Fri 27-Jan-12 23:10:02

Kinky, hope your dd is feeling better today

Vev Sat 28-Jan-12 12:42:50

Kinky - hope all is well with your daughter, it's so scary not knowing what's going on.

I've been in remission for 4 and half years from leukaemia, had a bone marrow test in December and have received an appointment to attend haematology clinic on Monday. I am a nervous wreck. I've rang them and I can't get to the bottom of why I have to go again, can only imagine the worst sad. It's horrid and never ending.

You're all so brave as I would hate to see my kids go through what all the treatment entails. smile

mackerella Sat 28-Jan-12 16:33:40

Hi all, can I come and lurk on this thread for a bit? DS (13 months) was diagnosed with a rare childhood cancer (not leukaemia) 8 months ago - I'm being a bit vague about the details because I don't want to out myself IRL! He finished first-line chemo a few months ago but is still having active treatment every few weeks. It would be good to hang around on a thread with other people who understand what we're going through at the moment.

Vev, I'm glad to hear you're in remission and hope the clinic on Monday goes well. smile

FarloRigel Sat 28-Jan-12 23:34:30

Kinky I really hope DD is doing much better. Has her Dad given you any feedback on how she is doing?

Vev I'm wishing you all the best for your appointment on Monday.

mackerella Welcome! I'm so sorry your DS has been diagnosed with cancer too, I hope he's doing well.

I hope everyone is having a good weekend smile.

toughday Mon 30-Jan-12 12:56:45

Kinky how is your DD now? Been thinking on you all weekend

Vev hope all goes well at your appointment today

Mackerall lurk away and join in when you feel ready

We finally got the results of DD scan, no evidence of tumour, so relieved. Has been a very anxious wait. She still has to get scanned every 4 months for the next year or so but really am feeling more positive now.

Thank you all for getting me through smile

Hi, I hope you don't mind me posting here but having started a thread elsewhere toughday kindly suggested I post here too.

A child in my son's Year 2 class at school is just about to start 8 months chemo for bone cancer and I am wondering if you have any advice on ways we can support him and his parents through this time?

Initially, we've organised a collection to buy him a present to cheer him up a bit whilst he's in hospital and I'm just wondering if anyone could suggest what kinds of things are most appeciated by children in that situation?

I am assuming that once the chemo is underway and his immune sytem is down that his parents may not want him to have visitors but I am wondering what we, and our children, can do to help him? I was thinking of organising rotas for his classmates to email and Skype him. Any other ideas?

At the moment his parents are, understandably, shell-shocked by all that is going on. We are planning a rota to provide them with home-cooked meals a few times a week and they will soon have family arriving to help them out but I am wondering if anyone with experience in this situation can suggest other ways we can help?

Stinkyfeet Mon 30-Jan-12 17:45:22

Toughday - that is great news - I'm thrilled for you smile

Kinky - hope dd had a good weekend and is feeling better.

Hi Mackerella, sorry to hear about your ds - I hope you can get some support from us here.

HoM - sounds like you've already got things underway with a present and contact from his classmates. Practical help is always good - if there are any siblings, they may need picking up from school sometimes if the parents are at hospital or trying to work as well. Meals are good, perhaps some washing or cleaning if you're good enough friends (I wouldn't want casual acquaintances washing my smalls!!).

Things are good here - ds seems to be remarkably well after his chemo - no side effects really apart from feeling a bit tired. He's got vinc on Wed, then 4 weeks til we're back in hospital for the next cycle, so plenty of time to recuperate and gain some strength (and weight hopefully!).

FarloRigel Mon 30-Jan-12 23:07:23

Toughday - I'm so very pleased grin to hear about the scan results!

HoM - keeping the communication going the whole way through is the big one, it's so sad how people tend to fall away. I've heard of an American scheme where a special teddy sits in the vacant chair in school to remind the children to keep a space emotionally for the missing class member. Anything you can think of that makes him feel still part of the group and makes them remember he is part of the group would be incredibly good for him. Skype would be amazing if it's possible, some wards don't allow wifi or mobiles though. As far as presents go, the most important thing is for them to be wipe clean, so they can be disinfected regularly when his immune system is really low. Things with lots of little toys that pack away into a case work well in a ward situation as do art and craft materials. Even though he's on chemo though there may be long periods where he's at school, or at home at least.

Stinkyfeet is right, practical help is so important if it can be done. Visitors can indeed be tricky but two of my DD's closest friends visited when they could during her eight months inpatient and it made a massive difference to her.

Here's a link to a pdf file of a book for kids about a child with cancer. If you spread it around, it may help the kids understand:

One other thing you may want to consider is showing your support by encouraging all the parents to give blood in his name. It may not help him directly, but most kids going through chemo need blood transfusions to get them through it and it's a practical gesture most people can make which would really show the family how much people care even if they can't do something directly.

Queenmarigold Tue 31-Jan-12 09:24:41

Medulloblastoma here too. Aged 2.5. Surgery-headstart 3- radio. Finished last August.

It is so terrible. Every so often it hits me afresh - 50% chance, live, 50% ... I can't even say it.

Scan coming up, but don't know when (2nd one post treatement). I am terrified. I can't sleep. My DC is so damaged - hearing loss, permanent baldness (56cGy DT), nerve paralysis (very visible) and learning difficulties from RT though nothing obvious yet.
i alternate between kidding myself it's going to be OK, and searching for a cure online that doesn't exist.

Does it get better?

Queenmarigold Tue 31-Jan-12 09:26:13

I do everything I can to get people to sign that petition. Funding is so rare, it's so frustrating. It needs 93,000 more signatures before June sad

toughday Tue 31-Jan-12 10:21:36

Thanks farlo and stinky smile

Hi HoM, glad you got over here. I don't know about others but I would have loved my DD to have a few visitors, as long as they weren't sick. After her treatment people said to me I would've visited but thought you didn't want visitors or I didn't want to bother you. Whereas I would have loved visitors, after a while you think people have just forgot about you sad, everyone is there in the beginning but soon tails off.

Queenmarigold I have been where you are, our statistics are the same, we have just had our 2nd scan post radiotherapy. The panic and the fear of not knowing. DD also had a brain tumor, has hearing loss and permanent hair loss as well. Try and stay positive and distract yourself. Not easy I know, when it is always there every minute of the day. I find now harder that she is off treatment as there is no aftersupport form the hospital.
I now find it easier when I talk to other mums that have been through this. We now make a point of meeting up every month or so for a cup of tea and a chat and talk about our worries. We are all in the same place mentally and because we kept all our worries to ourselves we are all a mess. Now we talk and we just pick up the phone or text when we are down. It does help.
Don't keep things to yourself, talk on here about anything smile

Queenmarigold Tue 31-Jan-12 15:22:44

houseofmirth - that's lovely of you all. Offers of help with gardening, delivering post etc whilst in hospital is also of practical use. It also helps to talk to people who know the facts, so you don't have to keep saying 'cure rate is only X%' and also some knowledge and understnading that long term survival is not a cure - it is just survival as these precious kids pay the price for their treatment.
Also it can help to keep reminding yourself that, whilst every parent chas worries and concerns about their child, and have to make 'big' decision sabout which school to apply for etc, ... they are not that big. Really. That kind of thing makes parents feel so isolated and alone. You sound like a lovely friend though and I'm sure you won't do any of the above!

Queenmarigold I don't think we are lovely but thanks for saying it. Anything we can do seems so utterly and pathetically useless in the face of what they are going through.

Thank you all for your advice and for making me welcome here. I will lurk for more advice and to see how your DCs are faring. I wish them all .

KinkyDorito Wed 01-Feb-12 17:10:22

DD is fine. Still borderline neutrapenic and looking very palid. Went for lumbar puncture today and that was fine.

I'm due to start work again from Monday. On the one hand I'm looking forward to it for my sanity/money, but I'm dreading how she's going to be. After one 'normal' month we seem to be stuck back in the rut of a variety of ailments. I'm feeling incredibly depressed. I never know what to do with myself through the day and find myself going back to bed a lot. I'm just hoping work gives me a boost rather than finishing me off sad.

I'm going to read through what I've missed now and catch up.

FarloRigel Fri 03-Feb-12 13:57:38

Sorry to hear you're so low KD. It's horrendous how all of this grinds you down. I really hope that work is the distraction you need and helps you feel part of the 'real' world again. Have you any local cancer support charities, like a Maggies centre? We found ours very helpful, got some free counselling from their psychologist. Good luck on Monday. Hope it goes great! Have you had her immunoglobulin levels checked? That was the answer to our DD's neverending hospital admissions. x

lisad123 Sat 04-Feb-12 08:17:42

Just. He long in with you all. Sorry to hear little ones are unwell, due another round and also about new little ones joining the fight.
If any of you are in herts or just outside please let me know of anything I can do, even if it's just sitting for a few hours while you have shower ect. I work with families in my job so happy to show crb ect.
Dh was due at the hammersmith on Monday but he didn't go and get his testing due ontime angry so have to wait another month confused
He assumed that he is feeling fine so is fine. Last time he made that mistake he had started to develop resistance to chemo so cancer was increasing sad
Prayers are out for you all today x

KinkyDorito Sun 05-Feb-12 14:21:52

I hope he's okay lisa.

Thanks farlo. They've never mentioned immunogloulin levels to us?

I hope everyone is okay?

OhDoAdmitMrsDeVere Sun 05-Feb-12 14:24:09

Hello everyone,
Just thought I would pop by and say hello and see how you were all getting along.

Love to the kids and you and sending 'chin up' vibes across the internet x

toughday Mon 06-Feb-12 12:31:09

Wishing you all the best for today kinky.

Hope everyone else is doing good smile

FarloRigel Mon 06-Feb-12 23:52:57

Kinky some hospitals don't seem to bother with the immunoglobulin, but you could try asking. Our main centre didn't do it but our shared care centre knew about it from a bigger centre that does bone marrow transplants and started using it for that, but then went over to using it for any kid that is ill a lot. So, shared care centre tested DD and started her on it. It really made a big difference. I wasn't mad keen on more blood products of course, but she was going inpatient every few weeks which could have done her a lot more harm so we were so very glad we did. They seem to use it a lot in the US going from the listserv.

Hello MrsDeVere hope you're doing well also smile.

Hope you are all having a good week!

KinkyDorito Tue 07-Feb-12 08:25:40

We do bone marrow at ours. I will ask them when I take her in next week. Thanks smile.

Feeling a bit more human from going to work, although I'm on very limited hours as part of phased return this week.

I'm stressing about teaching though tough. I have never, ever, ever had an issue in the classroom, but last time I was in I was really struggling - the cracks were starting to show, I think. I'm just hoping I'm calmer this time. The kids didn't realise, but I felt pretty crappy. Stress is a funny thing.

Hello to MrsDeVere. I really hope all is well with you smile.

OhDoAdmitMrsDeVere Tue 07-Feb-12 08:52:25

You went back to work! smile

Thats brilliant. Everything crossed that it works out ok.

mackerella Tue 07-Feb-12 22:18:21

Hi all, thanks for the welcome, will continue to lurk and post occasionally if that's ok! Feeling a bit down because ds had an appointment last week and they found evidence of continued tumour activity, so he's got to have further chemo asap sad. Luckily it's not going to be anywhere near as horrible as the chemo he had last year - hopefully he won't even get neutropenic, yay! - but the protocol itself is quite new and the medium- to long-term effects are completely unknown. On the other hand, if he didn't have it (or if it fails), the only other option apart from EBRT (which they don't want to do because it's in a very sensitive area and he's so young) will be radical surgery, and that will leave ds even more disabled than he is at the moment sad.

lisa, I really hope your dh is ok - does he really have to wait a whole month for further tests? sad

mackerella Tue 07-Feb-12 22:18:38

Sorry, lots of sad faces in my last post! smile

FarloRigel Wed 08-Feb-12 13:21:45

mackerella I'm really sorry to hear there's still activity going on sad you're more than entitled to use as many blue faces as you like on that one. I'm glad the new chemo protocol isn't looking too awful though. Is there no chance your DS would be eligible to be sent somewhere on the NHS for proton beam therapy if they're reluctant to try radio or surgery, or could you do some fundraising to pay for it (hellishly expensive I know)?

Kinky glad you got back to work, but I know how you feel about emotions. I've had to go have a cry in my lunch break several times since I went back!

KinkyDorito Wed 08-Feb-12 16:22:09

mackerella I'm sorry to hear that he has continued tumour activity. That's so tough for you all. I'm sending you all my love and hope that the new protocol works without side effects. Do you have good support? Do you have someone to vent to? Make sure you take really good care of yourself. We're here for you.

Thanks farlo. So far so good. I'm just hoping I don't snap unexpectedly and go beserk! The last year has left me a bit nuts. grin

toughday Wed 08-Feb-12 16:58:14

Kinky, deep breaths. Take each day as it comes. You are doing brilliant being back smile. How is your dd now?

Mackerella, big hugs to you. What are they hoping this new regime will do? Has EBRT been discussed as an option for when DS is old enough? I agree with Farlo in suggestion proton therapy. Have a look at this proton therapy and see is your DS's tumour type on there. Proton can be given in children as young as 12 months. There is still risks and damage being done but not as severe as with EBRT. At the minute I think they only fund 50 patients from the UK a year, but there has supposedly been more government funding so the numbers being funded and a wider range of cancers being treated could be more in the near future smile

windywendy Thu 09-Feb-12 08:50:35

Hi all

I've been resisting posting on here, but think I could do with the support now.

My lovely little three year old boy was diagnosed with ALL last month. He is in week 4 of the induction phase of regimen B and doing very well so far. We are lucky in that it was caught very early (he hadn't been ill at all pre diagnosis) and that his results have all been very good. He seems to be coping very well with it, but I am starting to fall apart now! I am very positive about his future, but I'm just so sad it has happened and so unbelievably angry.

I wish all of you and your families well and am truly sorry that we are all in this hideous situation xx

FarloRigel Thu 09-Feb-12 10:32:31

Hello Wendy welcome to the group and I'm so very sorry your son has ALL too. My DD just finished her treatment for it in October. She was diagnosed at three also. In case you have missed it now the thread's getting longer and would be interested in more targeted support and advice on side-effects etc. here are a few links for you:

UK ALL-specific support group on facebook:

US (mainly) ALL facebook group

ALL-support listserv can be found here:

I'm on all three and I know we'd all be very pleased to have you and to be able to give you support through your DS's journey, if you want to. Feel free to hang out with us here either way of course smile.

I'm glad to hear treatment has been going well so far. All the best x

KinkyDorito Thu 09-Feb-12 12:47:45

Oh, wendy sad sad sad.

My DD, 13, is a year into regimen B for ALL. I have a 3 year old DS too and my heart completely goes out to you. It so incredibly cruel. Allow yourself to go to pieces if he's settled at the moment. You must let yourself do this as if you bottle it up, as I have, it breeds more problems later. What is it they say, anxiety and depression are a sign you've tried to be strong for too long? Get yourself somebody good to talk to - friend who will cope with you breaking down, counsellor, whoever - and let yourself be devestated. It is devestating.

I'm so sorry your little one has to go through this thing sad. It's difficult enough when they understand.

I'm always around picking messages up, so please PM me or post here whenever you need to chat.

Sending you lots of love and best wishes.

I'm on UK ALL facebook with Farlo. That's a nice little community too, with lots of support. A couple of my friends from hospital have 3/4yr old sons with ALL and are on there, so it is worth a look.

Stinkyfeet Thu 09-Feb-12 21:27:16

Hi all, hope everyone's OK.

Hello to Queen marigold and Wendy - sorry that you and your children are going through this.

Kinky - hope work is going well - I'm sure you'll relax into it over the coming weeks. How's dd doing at the moment?

Mackerella - sorry to hear about your ds, hope he responds well to the treatment.

All is going well here; thankfully ds hasn't suffered any side effects from this first chemo cycle, apart from being tired. He had his last vincristine of the cycle last wed and his bloods are quite low this week - neutropenic for the first time. But he's very well in himself - been into school for a few hours every day this week. Half term now, so hopefully will be able to manage full days by the time they go back [optimistic]!

KinkyDorito Thu 09-Feb-12 21:38:27

Lord. devastating. I am tired and rubbish at spelling at the moment grin.

Stinky, I'm really pleased that he's doing so well, that is great news. How are you doing? DD has been neutropenic but well for 3 weeks now. It's a pain in the respect that I make her go to school, but I can't help being a bit twitchy that it's 2000 kids in size and it's germ season! She's doing okay though. It's nice for them to have some normality. They really enjoy being there with friends and having lessons: they start to value things that other kids take for granted.

Stinkyfeet Thu 09-Feb-12 21:55:48

Yes, our support nurse has told us not to wrap him up in cotton wool - he'll benefit far more from being at school (despite being neutropenic), than stuck at home. Of course I trust her, but can't help feeling relieved it's half term now! Slightly apprehensive that he's going to see Star Wars for his best friend's birthday tomorrow - trying not to think of the germ potential in a crowded cinema!

I'm OK at the moment. It's amazing how quickly this all becomes normal and part of your life.

How's work been this week?

mackerella Fri 10-Feb-12 23:51:14

Hi all, thanks for the lovely comments. And Farlo and toughday - thank you SO much for the info about proton beam therapy, which we hadn't heard of. I've had a look at the link and DS's tumour type is indeed listed! It also sounds as if his is one of the tumours that is very responsive to this sort of treatment, so we'll mention it to his oncologist about this next time we talk to her. I think they might even be able to do it in the UK (at Clatterbridge) so def worth following up. Isn't MN amazing? grin

We do have good support from a specialist charity, who have put us in touch with other families (tumour type is pretty rare so we'd never meet anyone on our local ward). It's great to talk to other people who really understand - friends and family are very sympathetic, but as DS's treatment has dragged on and on, we're starting to feel a bit 'forgotten' about - think most people assume you have chemo and then you get better, whereas the reality is that DS will be in and out of hospital for 4 or 5 years. I guess you all know what it's like!

Wendy - I'm so, so sorry to hear about your DS. It's great that his treatment is going well, but you must be in a total state of shock. I second what Farlo said above about getting support from other people who are going through the same thing - it's been tremendously helpful for us, especially talking to people whose DCs have finished treatment.

Hello everyone else - glad to hear that things are going well for you Stinky and Kinky (hey, that rhymes!), and that's great news about your DD's scan, toughday. smile

mackerella Sat 11-Feb-12 00:00:09

QM, I also wanted to give you a [non-MN] hug - I'm sorry you're feeling so rough. I do understand what it's like: my DS has also been left permanently disabled as a result of his illness (blind) and we're terrified that the tiny bit of vision he's left with will be taken away, either as a result of the cancer, or because of future treatment. It's so unfair that the treatment itself is nearly as brutal as the cancer - but we're just hanging on to the fact that we'd rather have DS alive-and-disabled than not with us at all. DH and I have found, though, that we can't seem to hang on to all of these facts simultaneously - it's like it's all too big to comprehend at once - so some days we're focusing on the disability and how to manage that, and then we remember about the cancer and it all comes back with a whoosh sad I think this is our way of managing, tbh, as it means that we concentrate on small, practical things rather than worrying about the bigger picture.

KinkyDorito Sat 11-Feb-12 13:10:08

DD has fatty deposits in her liver. They don't know the extent of what's going on without doing a biopsy, so we need to wait for that.

They said diet can do it, but she's not got a bad diet. It would appear methotrexate can cause fatty liver, and given she's had tons of that, it seems a likely factor.

Either way, he said he's not too worried about the levels, but he would have to do something within six months as they have been elevated for a year now confused. To me, that doesn't sound great.

I'm quite worried at the moment. The last thing she needs is scar tissue on the liver, which is the next stage of fatty liver, or inflammation.

Hopefully they will sort out this biopsy soon.

For now, I'm putting us all on a very clean diet based on wholegrains/wholefoods as reducing sugar can help. It makes me feel like we're at least trying to do something.

It is just endless crap. sad I'm so fed up for her.

FarloRigel Sun 12-Feb-12 16:45:53

Kinky I'm really sorry to hear that sad. I do know a few people whose kids have had liver issues, including one wee girl who they thought might go into full-on liver failure from her chemo - luckily although her liver was in a very bad way scans show her liver is slowly healing. I really hope they get the biopsy organised soon and it shows it's not as bad as you're fearing.

At least you're through all the intense phases now, I hope things will settle down and they can find a way to get through maintenance without stressing the liver any further. From what another parent was saying on the ALL Kids listserv a while back, I believe they are planning to study reducing the intensity of maintenance therapy in the next round of trials as there is apparently speculation that it is unnecessarily harsh in most cases. Perhaps they will reduce the mtx in her protocol for a while at least in light of this?

I hope everyone is having as good a weekend as possible and all your fabulous kids are doing really well smile. Have you all applied for a Little Star Award for your CKs yet? It's a lovely way of giving them a wee boost if not.

Queenmarigold Mon 13-Feb-12 10:22:59

Just got the date for our next scan.

Please God may this be clear. Please God may you fix the problems that remain from disease and from teatment. Please God spare my baby from cancer. Please let us be one of lucky ones.


FarloRigel Tue 14-Feb-12 22:23:21

I'll be keeping my fingers crossed for you, Queenmarigold. All these amazing kids deserve to make it and get to live the full, happy lives they deserve.

Wishing everyone a very happy Valentine's Day!

KinkyDorito Thu 16-Feb-12 08:58:27

Queen I do hope everything is okay for you.

Thanks Farlo. She's having liver bloods taken today (vincristine day) and we will go from there.

I hope everyone else is doing well. Sending my love to all of you.

KinkyDorito Sun 19-Feb-12 19:46:46

Bumping thread.

Best wishes to all smile.

Stinkyfeet Sun 19-Feb-12 20:54:39

Hi everyone. All still good here; ds was still just neutropenic on Wed (0.9), but on the way up. Hoping to have him in school now until we go back into hospital on the 29th. So that's the first cycle almost over, 7 to go. The next may not be so easy as this one, but we'll cope I'm sure.

Good luck for the scan QueenM - crossing everything for you.

Stinkyfeet Sun 19-Feb-12 20:57:25

Sorry, meant to ask , Kinky - any result from the liver bloods?

KinkyDorito Mon 20-Feb-12 19:54:07

That's great news about your DS stinky. smile

Bloods only taken on Thursday, so nothing yet, but I'm expecting a biopsy as they've been up all year so I doubt anything will be different. Her counts are okay and she's well, so I'm hoping she will go to school tomorrow. I've been phasing back in okay, although it's taking a bit of adjusting. I feel quite stressy, even though there's not much to be stressed about. I suppose I'm used to always waiting for the next thing.

NoWittyName Mon 20-Feb-12 20:06:57

Hi to all. I don't really belong on here as number 2 died when she was 15 months old after being diagnosed with congenital ALL at 14 days old. I suppose it was a morbid sense of curiosity that made me read through posts when this popped up in 'active'.

I wish you all love, hope and positive thoughts. May you all only have positive news to share with each other.


KinkyDorito Tue 21-Feb-12 21:24:39

NoWitty I'm so sorry you lost your DD. You are more than welcome here whenever you want to pop in, and if you ever want to talk. Again, sorry sad.

NoWittyName Tue 21-Feb-12 22:38:34

I am so relieved you posted! I thought I'd killed the thread. [embarrassed]. As I said, I just wanted to send huge love to everyone going through this. Take care of all of you.


KinkyDorito Wed 22-Feb-12 07:06:39

I'm always here lurking about somewhere NoWitty.

We have been quiet recently. I just hope no news is good news.

Queenmarigold Wed 22-Feb-12 08:47:21

Hi all,

Can I just share my fear with you, I need some help from people who understand.

I'm completely falling apart. We are medulloblastoma, stage 3, chemo-radio (age 3) and now nothing. First scan clear, next scan due soon. Bad permanent side effects.

I have a bad feeling at the moment. I can't describe it any other way. But DC does lots of crying, doesn't seem right .. but can't tell me what's wrong. I just can't cope any more. I am utterly exhausted. I am a bad mum, shouting to stop crying, and I am impatient. I have had enough of it all and am close to tears most of the time.

What should I do - there is no treatment left, so what is the point of going back to hospital.

But am I just driving myself mental, reading things which aren't there. The chemo / immunity problems have resultsed in bug and bug, so DC must be run down.

Anyway, just thought I'd share.

Queenmarigold Wed 22-Feb-12 09:09:26

Sorry, meant bug after bug - am I reading into things which arenet there because of the scan?

KinkyDorito Wed 22-Feb-12 10:06:25

Queen Firstly, you need to talk to somebody. You are going through such a stressful time and you need to vent to somebody. Do you have a Macmillan social worker you could meet for a chat? Or a counsellor? If your DC has been through so much, I would be horrified if hospital had not linked you up with a support network. Chat to someone, say what you are scared to say, get some reassurances if you can. Cry and shout and scream with them. Get a volunteer in from Clic sargent to sit with your DC so you can have the time to talk. I also think going to a gym and punching the shit out of a hanging bag might help to relieve some tension - it has to go somewhere. You need to let yourself be angry. Also think about going to GP so they know where you are at in case they think you can be helped in other ways.

Saying all this, I know how futile it all feels. But at the end of the day, we do not know what will happen. Living with this horrible shadow of unpredictability is what is so draining emotionally and mentally. You need to try and voice/channel some of the feelings. Whatever happens to your DC, and a I pray it is a good outcome for you, you will still need to deal with what this experience has done to you.

My heart completely goes out to you. You need some help, please get some. If you already have some, get more.

If you could do anything for an hour or two by yourself, or with your DP, what would it be? A meal, cinema? Do this too. It won't stop how you feel, but it will remove you from the situation for a little while.

You say you are 'close to tears most of the time' which suggests to me you are doing exactly what I do, which is repress it to deal with it later. This stuff is too much over too long to repress: you need to get some of it out. If you don't, at the first sign of calm, you could have a tidal wave of feelings to deal with.

I'm on medium prozac dose so far, and have anxiety and depression, all brought about by this. I'm forcing myself to restart counselling as it was helping me. I know that I keep getting moments where DD is a bit brighter and I feel like I'm falling apart. Family are worried about me, and are sad that I kept my feelings to myself for so long when I obviously needed some help.

This is completely understandable, and nobody will judge you for it. We are going through one of the worst things a parent will ever have to. We have to be kind to ourselves and accept support wherever it is offered, even if we never have before.

Please take care, and message me if you want to say anything privately.

I am so, so, so sorry that this is happening to you and your DC. sad

Queenmarigold Wed 22-Feb-12 10:49:21

Thanks KD, have PMd you!

bobbi4444 Wed 22-Feb-12 13:23:49

Queenmarigold - sorry your having such a tough time but thought I would share my story. My child was diagnosed with Medullablastoma aged 7 months. He fad surgery, chemo and radiotherapy. It was the worst time in my life an looking back now I wonder how we got through it...but now he is a happy, healthy 6 year old who is in a unit in a mainstream school...
it's great that the first scan was clear, it's so hard not to worry about future scans but I ended up on antidepressants to help me cope too...
am here if u need to chat as I know exactly what yr going through...

toughday Wed 22-Feb-12 18:07:26

Queenmarigold - I just want to echo everything that everyone else has said. The anxiety over scans is the worst feeling. Once you get the date for the scan it becomes all you think about. Try and talk to someone about how you are feeling. I know because you have just described me last month before DD's scan, I was scared to go to the shops in case I seen someone I knew as I was also so close to tears most of the time.
Try and do fun simple things with you dd, I have found that when I am more positive around her, she is in better form IYKWIM.

I was just talking to another Mum last week about the after support given once treatment finishes. As our DC are no longer in treatment none of the charities can help. We have checkups at the hospital every 6 weeks or so but it usually consists of height/weight, quick once over and away you go. I know hopsitals are stretched to their limit financially but there needs to be some something for parents emotionally afterwards to help them. I am actually finding now tougher than during treatment. I have stayed in contact with a few other mums and we meet up occasionaly for a chat, it's nice to be around people that understand.

mackerella - definitely mention proton to your oncologist. Some of them are iffy about it but if your DS's tumour type is there then you are in with a good chance of getting funding. The machine at Clatterbridge as far as I know is only a low intensity beam so might not go deep enough depending on where the tumour is.

nowitty - so sorry about you dd sad

Hope everyone else is doing good and the bloods are behaving themselves smile

FarloRigel Fri 24-Feb-12 18:07:58

Just checking in to wish everyone a lovely weekend!

Hope you get some good clear scan results soon, Queen, to put your mind at rest. It really is horrendous waiting for news and wondering about every little thing sad. It's a form of torture you wouldn't inflict on your worst enemy and I don't think people on the outside really understand it so feel free to let it out here.

NoWitty, I'm so very sorry about your little DD. There really are no words for how unfair it is to lose your child and for her to have been fighting since the day she was born is heartbreaking.

As for us we're doing OK, DD is still getting a bit of bullying for looking different but she handles it OK for the most part. We have sent in her treatment record beads (like beads of courage but a different system) to share with the class so I'll let you know how that pans out.

Best wishes to all of you, and hoping all our little fighters are doing well.

KinkyDorito Fri 24-Feb-12 18:21:37

Farlo sad they can be very cruel. DD had this too from some older boys when she went back. I don't think they realised. They've been through so much, they deserve an easier ride. I hope you have a lovely weekend too.

lisad123 Sun 26-Feb-12 23:54:29

So sorry I have been back it's been a manic few weeks blush
Please talk to someone queen.
Dh had results back and his cancer cell count has gone back up slightly in last 6 months. It not a big enough leap to panic yet but this was about the time the 2nd load of treatment failed 18monts ago sad off to London in a week to see the big team there so will see what they say.

I know we certainly have stress on run up to appointments, and misdee (some of you will be aware of her story, she's also my big sister) told me there describe it as Pat! Pre appointment Tention. wink we now joke about Pat, who we sort of joke as if it's a real person, sometimes helps lighten the mood.
We are lucky enough to have 2 wonderful macmillian nurses, who have been with us for the last 3 years!! 3 years, sounds mad confused
Hope your all staying strong x

lisad123 Sun 26-Feb-12 23:55:43

Nowittyname, very sorry for your loss sad

lisad123 Sun 26-Feb-12 23:58:30

Kinky, dh liver was in a bad way for a long time, and they were started to wonder about treatments as took forever to heal, but finally sorted after about 16months.

KinkyDorito Mon 27-Feb-12 19:18:50

I'm sorry to hear that your DH's cancer cell count has gone up lisad sad. You are right about Pat! I'm thinking of you.

DS has got chicken pox. DD is fine; hospital weren't worried as she still has antibodies from having the disease as a child. I'm still nervous though and will be watching her closely. So, once again I'm back out of work, unpaid, whilst I was only just nicely getting back in. sad It always seems to be something. I'd love a couple of event-free months. Heck, I'd love a couple of event-free days!

Queenmarigold Tue 28-Feb-12 09:29:56

Hi Bibbbi - thanks for sharing, how lovely he is normal now. How did you find out so early in his life - I wish I had trusted my instincts more.
We haven't had MRI yet so will post when I get results. Things are a little better. I wish everyone good bloods counts, clear scans and zero infections, - have a good day!

KinkyDorito Tue 28-Feb-12 09:33:45

Queen I'm so pleased things are a bit better. You have a good day too smile.

KinkyDorito Thu 01-Mar-12 07:14:04

I feel like death warmed up. Have throat infection I think but have to go to work today as I've been off for past 2 with DS who has the dreaded chicken pox. Thankfully, DD has antibodies still so we didn't have to go into hospital. She's just feeling a bit tired after 2 days in school, so is having a rest day today whilst DH takes over calamine duties.

I just want to curl up somewhere. It's all a bit overwhelming again at the moment.

I hope you are all well. I regularly think of you all. Best wishes. smile

Stinkyfeet Sat 03-Mar-12 22:21:47

Hi, just thought I'd pop in to say all is going well here; we've just been in for ds's 2nd chemo admission. He's had some stomach cramps today, but all in all is coping well. Hospital is pleased that he's maintained his weight and has been getting on with normal life as much as possible!

Hope all is OK with everyon else.

FarloRigel Sun 04-Mar-12 12:45:28

Hi everyone, hope you're having a good weekend.

Lisad I'm sorry to hear about your DH's test results, are they going to repeat the blood work soon? I hope his next results are lower again next time.

Kinky I'm sorry to hear you and your DS are both ill, that sounds like really hard going sad. Hope things are looking better now.

Stinkyfeet I'm so glad to hear your DS has been doing well, I'm wishing you all the best for a nice smooth by-the-book round of treatment.

We're doing fine. DD was asked to do her beads and treatment book for World Book Day which made her feel great because the only other book presented seems to have been the one that the author came into school for. I don't know what the reactions were like as she wasn't very clear but here's hoping at least a few people in the school will have more of an insight into her life and may treat her with a bit more understanding any time she behaves a little unusually. Two more routine blood checks to go and we're whisking her off to the sunshine for the first time since dx. Nervous something will go wrong at the last minute (aren't we all, always smile) but really looking forward to it.

Thinking of you all.

toughday Mon 05-Mar-12 11:32:51

Hi everyone, hope you all had a lovely weekend.

kinky hope you and ds are feeling a bit better.

stinky glad to hear all is going well.

lisad will be thinking of you this week.

farlo hope you have a lovely holiday, sounds perfect and it will do you all the world of good.

Everything is pretty quiet here at the minute, i'm just starting to potty train ds. Wish me luck, will probably need a glass of wine (or two wink) later.

windywendy Tue 06-Mar-12 13:11:30

Just popping on to say hello to everyone. I hope you are all doing ok.

I joined one of the Facebook groups and have found it helpful, so thank you for the recommendation.

My DS is doing very well. We are in week 7 now which is the second week of daily trips for chemo. He's tolerated everything well so far and his day 29 results were excellent - complete remission and low risk - so we are feeling very positive now. I've met some more mums at hospital now and realise that we are very lucky to have got through induction so lightly. They have all experienced pretty terrible times. I'm a bit nervous that we may have it to come, but am clinging to the hope that he will continue to be textbook.

I've been really surprised at the extra stuff that comes when your child is diagnosed with cancer. Not only is that a massive change in itself, we've also had to remortgage, I've left work, buy a car (I had a company car) etc etc. It's such a lot! I've got my CLIC social worker coming round this afternoon to help with the DLA application. I'm mildly amused by the fact that I have a social worker and benefits!

lisad123 Tue 06-Mar-12 14:22:03

Went to see dh specialist yesterday.
She's happy for him to continue on current treatment and just wait and see for now.
He has to go and have a piece of bone marrow removed to check to see if he still has the extra chromosome that the chemo caused. Other than that, go back in another 3 months. smile

KinkyDorito Fri 09-Mar-12 20:59:32

Will catch up.

Quick bump!

Stinkyfeet Tue 13-Mar-12 17:48:45

A little bump.

Am hoping that all is well with everybody smile

KinkyDorito Wed 14-Mar-12 08:18:30
lisad123 Wed 14-Mar-12 08:25:03

sad so sorry to read all that stress. Have you applied for DLA for dd? That would help a great deal.

KinkyDorito Wed 14-Mar-12 08:50:14

Hi lisa; yep, we get DLA. Unfortunately doesn't begin to cover it: accursed gigantic mortgage!! I'm also nervous that if I lose my job it will be so hard to get another one sad. How are you?

lisad123 Wed 14-Mar-12 18:36:45

im doing ok smile
you have let ctc know you get dla havent you? Dont forget to look at carers too.

Queenmarigold Wed 14-Mar-12 20:37:58

Hi Kinkyd / everyone, How are you doing? It's so hard I know. So hard to fit in one round of professionals after another on top of work and other commitments. You are not alone, we're here for you.

3girlies Thu 15-Mar-12 17:19:58

Just wanted to join the thread, was told about it by Stinkyfeet.
My DD3 was diagnosed in July last year with high grade neuro glioblastoma multiforme (brain tumour). She is now 6 years old. She has had surgery, 6 wks of radiotherapy and is now approaching er 5th cycle of chemo. She is doing well at the moment but we know the outlook is not great. She is amazing and brave but my heart is broken, we keep going though.

KinkyDorito Thu 15-Mar-12 20:36:54

3girlies sad I am sorry that the outlook is not good. We are here if you need a chat. Sending love to you all.

Thanks Queen, it is appreciated. I hope you are okay smile.

toughday Mon 19-Mar-12 23:56:20

Just giving the thread a little bump.

Hi 3girlies, how many cycles is your dd going to have?

Hope everyone else is doing well

Stinkyfeet Wed 21-Mar-12 17:38:20

Hi 3girlies, glad you found us here. Your dd's treatment plan sounds very similar to ds's, although it was a different tumour. I'm so sorry that the outlook is not good.

Ds has finished the chemo of his 2nd cycle and is on his break until next cycle beginning on 11th April. He's doing really well, although bloods today are the lowest they've ever been. You'd never know it though - he's currently wrestling with ds2!

Hope everyone is OK, Kinky especially, you seem to having a really tough time - I hope things are better for you at the moment.

KinkyDorito Sat 24-Mar-12 06:03:07

Well, the oral antibiotics have copped out (she did have a bug) and I have now had to bring her in.

Her temperature was 40.4 when they last checked; she was neutropenic on Tuesday when they tested her blood. So, I'm thinking at least 5 days. They think she has a chest infection. Xray as soon as they know all the drunks have left A&E.

Unfortunately, I was up working until midnight, so I am currently functioning on less than 2 hours' sleep. I have the shakes.

I'm going to get a Tshirt made. It will say, "KinkyDorito: surviving on tea, chocolate and sheer bloody determination since Jan 2011".

KinkyDorito Sat 24-Mar-12 07:51:06

Blood and platelet transfusions, definitely staying in and waiting for Xray still.

Off for more tea to replace sleep.

Stinkyfeet Sat 24-Mar-12 10:37:18

Oh Kinky, how miserable for you and dd. Any chance you can get any sleep today or is it just too busy and noisy there? Perhaps while dd having the transfusion. How is she feeling?

KinkyDorito Sat 24-Mar-12 20:44:16

No chance of sleep! I'm shattered. They are testing her widely as she's febrile still. They want to rule out an unusual strain of pneumonia. They are loading her with antibiotics. She's very up and down, and now much pinker after 3 bags of blood, with another in the morning.

Soooooo tired!

Stinkyfeet Sat 24-Mar-12 21:54:43

Hopefully you'll get some sleep tonight then. Are you on a bay or in a private room?

KinkyDorito Sat 24-Mar-12 22:03:12

Private room, but it's bright and has really loud air con. Saying that, I'm wiped so hopefully won't matter!

Stinkyfeet Sat 24-Mar-12 22:44:35

Hospitals are such non-restful places! Well I hope you're asleep by now and not disturbed too much. I always sleep really lightly in hospital and am always disturbed at obs time!

KinkyDorito Sun 25-Mar-12 09:20:46

I'm the same, and was last night. She's ended up having to have oxygen as her sats are too low sad.

Stinkyfeet Sun 25-Mar-12 13:50:27

Poor thing. I hope she starts to feel better soon.

Queenmarigold Mon 26-Mar-12 10:42:43

Hi everyone,
I haven't been on here for a little while, thanks for your updates. I'm rooting for those fighting infections and fighting cancers and praying everyday. There are various AOL groups set up by parents for parents, some of you may find them helpful - IME people share research and top tips about alternataive therapies. I'm really sorry but can't find a link to post - not very helpful.

I'd like to share some good news. Our MRI was clear! Thank you for your hopes and prayers.

I have noticed that my mental state is very fragile. The smallest thing can upset me a ridiculous amount - I was criticised for a minor thing at work - a fair criticism, and something easily correctable, a really minor thing about a form fillied in slightly incorrectly.But I was in tears about it. Not like me but I am not myself, yet I've lived this nightmare for 2 years now.

Do any of you have some top tips as to how to cope?! Kinky I know you have had some support from your GP, but if I went I'd ask for anti d's and I'd like another child at some point; would they affect the foetus potentially? (Though I think I have enought to deal with currently!!)

3girlies, thinking of you. Life is sh*t sometimes. But there is hope. There is always hope.

Queenmarigold Mon 26-Mar-12 10:51:50

link to aol support group - you have to send an email.

KinkyDorito Mon 26-Mar-12 17:03:01

Queen I also would like another DC. I am taking ADs but I don't think much of them to be honest. One thing I would highly recommend is 'mindfulness'. Try this book: It teaches you breathing techniques. It is linked to the programme that Goldie Hawn was on MN talking about a couple of weeks ago. The theory is about rooting yourself in the present and using breathing to help you to feel calm/grounded/clearer.

I've only been doing it a couple of weeks and I do find it helpful: I've felt much brighter and more in control.

It isn't new age stuff, although it acknowledges that meditation practice has come from other world religions. It is a scientific study and the man who has written it is at Cambridge University. Put the CD onto a laptop then load it onto a phone or ipod so you can listen to it undisturbed.

ADs will not harm a foetus; my Dsis took prozac during her first pregnancy. However I do think it passes through breast milk? I certainly don't want to be on them whilst pg if I can avoid it. I honestly believe that they've made me feel better temporarily but then worse, and you up the dose, and the same pattern repeats. Nothing has changed, but then our situation isn't conducive to feeling great, really. The mindfulness is peaceful and certainly worth a try.

DD has pneumonia. More days of heavy-duty antibiotics for her then. sad

KinkyDorito Mon 26-Mar-12 17:12:14

I should add, Queen, I have depression and anxiety and know exactly what you mean about feeling phased by silly things. I catch myself on the verge of tears all the time with things that don't normally bother me, and that's on the 40mg of prozac!

One thing I will say is that we have had a horrific time. It's like at the moment, hospital downplay it so you don't feel like it's that serious. But the reality is DD has febrile neutropenia and pneumonia, 4 bags of blood, 1 bag of platelets, feels shite, keeps throwing up in spite of anti-sickness, backache and headache requiring codeine. It is pretty serious. I feel like a zombie at the moment, I'm so out of my head with lack of sleep.

We are chugging through these experiences for months and months with our children. I'm surprised more cancer parents don't have total breakdowns when the coast is finally clear and you are allowed to focus on yourself again. It is a toxic situation: we are storing up untold amounts of stress. I keep dreaming about the time DD had to have cannulas in her feet because her arms were too bruised to take any more. It's shit. But you repress these experiences and don't deal with them because the next thing to worry about crops up before you get a chance.

I am so very pleased the MRI was clear. It is nice to hear good news. smile

toughday Mon 26-Mar-12 21:44:41

Stinky- dd was like that during chemo, she would be running down the corridor full of life and then once her labs came back she would need blood and platelets. I could never tell when she was low as she always had loads of energy.

Queen- so pleased that the MRI was clear.
One way I have found to cope now is to take some time for myself a couple of hours a week. I only started in January and I go to an exercise class twice a week. This is my time. For two hours a week I am me and doing something that I want to do away from everything. Also, taking a good multi-vitamin can help.

Kinky, it's interesting that you say that as I know quite a few parents that were close to being sucidal a few months after treatment had finished and I know of a few marriages splitting up.
For us we were in hospital every week for over a year, this was our life we had adjusted to it and then once chemo had finished I found it hard to adjust back. DH went back to work and everyone elses lives had went back to normal. I was at home still caring for DD and DS, and I didn't know how to cope. I forgot what it was like being at home all the time. I got really tired, exhausted, I could barely climb our stairs one day it was that bad. I went to our GP who couldn't help, anti-depressants weren't working so he prescribed me sleeping pills to help me sleep at night. Think I only took a couple of them.
That's when I realised I had to be a little bit selfish and take time to myself. I made an effort to get out and let DH take over. It really does help.

DD's scan will be approaching soon again and I know I will be a wreck in a few weeks time again as it looms nearer.

Queenmarigold Tue 27-Mar-12 11:04:29

I read that 92% of marriages fail after this experience. Can well believe it.

Kinky, how are things today? I knwo what you mean about seriousness of the situation. Don't be phased by the med-speak though - pneumonia is just an infection. (As is meningitis, which we had... and survived). And blood, platelets etc are just new technologies to help them through the treatment. I know nothing of febrile neutropenia, but when my DC was neutorpenic I was super careful and cautious about meeting with other children and leaving the house. We got though 1 year of 'the most intense chemo available today' without an infection (meingitis was caused by hospital leaving an unconnected splinal tap open tot he ward environment, despite my repeated pleas that somethign was leaking... oh don't get me started.

I know what you mean about dreaming, and feeling in a daze. Hospitals are exhausting places. One time my little one was disturbed when I did the nappy and stuck their finger out for obs whilst asleep. That upset me for days.

You carry so much anger, fear, frustration. It is so hard. I feel so alone; no one, no one understands. Apart from other mums who have been there.

FarloRigel Tue 27-Mar-12 14:38:12

Hi everyone, just wanted to say hello and I hope you're all doing well, avoiding hospital and getting to enjoy the lovely weather. Welcome 3girlies, I'm so sorry to hear they have given you a discouraging outlook but for what it's worth I'm crossing my fingers your DD will be one of those who eats the odds for breakfast and comes out the other side fighting like hell and ready to enjoy all life has to offer. Big hugs to you all.

KinkyDorito Wed 28-Mar-12 16:18:58

Another child died on our ward. sad

I'm feeling so low at the minute, really struggling.

FarloRigel Wed 28-Mar-12 16:39:35

So sorry to hear that, Kinky sad. Thinking of those poor parents. No wonder you're feeling so low. It hurts so much when another child doesn't make it and it brings all the fear you normally hold inside rushing to the surface all over again. I hope you can get some time for yourself to have a good cry. I hope your DD is improving now? Big hugs to you brew

Stinkyfeet Fri 30-Mar-12 17:58:43

Oh what rotten news Kinky. That poor family.
I hope you've had a chance to have some time to yourself to process it all.
Is dd any better?

minmooch Sun 01-Apr-12 18:09:37

I guess I need to join here. My 16 year old son (15 at diagnosis) was diagnosed with high risk medullablastoma - brain tumor on 1st November 2011. He had had a week of slight headaches and felt he was slightly wobbly. I took him to the Dr on Thursday to get him checked out, he sent bloods off (came back clear on monday) and he said it was probably just a growth spurt. On Tuesday morning at 4 am he was being sick, but with no sick smell :-(. I took him to A&e at 11 am and by 1 pm I was told he had a tumor in his brain. We were rushed to a specialist neuro hospital. On the Thursday he underwent an 11 hour surgery to remove most of the tumor. This has been followed by 6 cycles of chemo. MRI scan showed tumor had not shrunk but not grown. This was followed by 4 half weeks of twice daily radiotherapy. After 4 half months in hospital we have been home for two weeks. We have another two weeks before chemo starts again

It is a living nightmare watching my son suffer. I have another son who is coping amazingly. My eldest son is a true inspiration - he faces his fight with amazing strength and determination.

Huusband (boys step father) is not coping and is running away from the situation as fast as he can. Our marriage will not survive this as I will never forgive his coldness, cruelty to me during this time. He is currently in the south of France on a 4 day jolly with his mates.

I can only concentrate on getting both my sons through this ordeal.

FarloRigel Sun 01-Apr-12 18:31:37

Hi minmooch and welcome. I'm so sorry about your DS's diagnosis and that you're getting so little support from your 'D'H in the middle of this nightmare. That hust be so incredibly hurtful sad. I hope you will get great support here, there are a good few of us here now. My DD just finished 2 and a bit years of treatment for leukaemia (ALL) in October. I also hope that your DS's next scans show big progress. thanks and a big brew

Stinkyfeet Sun 01-Apr-12 21:10:40

Minmooch, what a dreadful time you're having. I'm so sorry for you and your boys. Your son's treatment is moving really fast. My son had the same diagnosis in September (although his tumour was average risk), he's had the tumour removed, 6 weeks of radiotherapy and is just coming to the end of his 2nd cycle of chemo.

How is your son coping? I'd imagine at his age he has some sort of idea about how serious it is.

Keep strong. Focus on your boys and getting ds1 through his treatment. Do you have other support from family and friends?

KinkyDorito Mon 02-Apr-12 13:54:35

Minmooch I'm so sorry to hear about the tough time that you are having. I was also going to ask about your wider support network? How is your son atm? You are right, it is a living nightmare and so few really understand how painful it is. What will you do about 'D'H? I must admit, in your shoes, I'd be very tempted to have the locks changed by the time he came home from France, although I realise life is never this simple.

DD is out. She has viral pneumonia so once her temperature was normal again, they sent her home to wait it out. She seems quite bright at the moment, though last bloods showed she is still very neutropenic (0.14), so we can't do a lot until we know she's recovering. She's still off chemo. We are still waiting for MRI for other condition, yet to be diagnosed. I'm losing track of all the things she needs sad.

minmooch Mon 02-Apr-12 22:27:21

Thank you for your welcome and I am sorry that any of us have to be here. Surgeons were not able to remove all of my son's tumor - they stopped when they felt it was too dangerous to continue. He has had a terrible time of it all - having to learn to walk, talk, swallow etc. Before he had much time to recover chemo started. Part of this has caused him to go into acute kidney failure - and this now impacts on the chemo he can have in the coming year. Before he could recover from chemo he was hit by radiotherapy. Its all been so hard and now we are home it is just as difficult but in different ways. Now I feel anxious all the time incase I miss something. Today he has been horribly sick and I worry that he will get dehydrated which is not good for his kidneys. Have the community nurse coming tomorrow so I will get her to do full us&es just to make sure.

What to do about husband? If I had the money I would walk out. Have I got the energy to divorce him? Have I got the time to visit houses, talk to solicitors? I can't imagine staying with him and forgiving him his attitude. Who leaves their wife at a time like this to go on holiday with his mates? He did not ask what I would do with the dog, if I had food in - and he knows that my son cannot even go to the toilet by himself so there is no way I can leave him to walk the dog/shop etc.

I have good friends and family luckily but they all have their own homes to go to. Today has been a very tearful day.

Kinkydorito - glad your daughter is out of hospital. Hope her counts start to rise soon.

KinkyDorito Tue 03-Apr-12 09:36:03

minmooch it certainly sounds like he's really been through it. Does he have counselling? Do you? We have a Macmillan social worker who has been brilliant. We're at LGI; as soon as a child/teen gets a diagnosis, the family are assigned a social worker. She's been to our home and had some long, private chats with DD about the things she's worried to say to me.

I'm still in the process of finding somebody to talk to for myself. I never bought into doing that before, but I realise I've been repressing so much worry that I may explode at some point. Instead I have eaten LOADS and gained 3st, which isn't helpful to how I feel about the world either. I also get very bad bouts of depression and anxiety, which are tough. It's hard to stay okay when you are dealing with so much, and seeing your children (both patient and siblings having to cope) go through so much.

Do you have an outlet? Do you ever get a break?

Clic have CRB volunteers who can give you respite for a little while. I know it's difficult to take a break, as your mind will inevitably be with your son, but you need to try.

There are no words to describe what a shitbag your husband is. But, I understand that now is possibly not the best time to have to deal with that. I am not surprised you have had a tearful day. I am thinking of you, and sending many, many hugs.

KinkyDorito Tue 03-Apr-12 09:37:23

should say CRB-checked volunteers

FarloRigel Tue 03-Apr-12 10:53:07

Just to add we have had free counselling from a clinical psychologist through Maggies. If you have a centre near you then it may be worth popping in even just for a cup of tea and a friendly chat.

Stinkyfeet Mon 09-Apr-12 15:51:51

Hi all, hope everyone has had a good Easter and all the children have managed to eat plenty of choc! Ds has eaten some, but his appetite has diminished a little since he had a cold a couple of weeks ago.

So we're just about reach cycle 3 - can't believe how quickly it's going and how well he's coping with the treatment. So far he's been neutropenic for about 2 weeks of each 6 week cycle, a bit tired and suffers stomach cramps after the chemo. Apart from that he's been fine - at school pretty much every day since half term.

He's got his GFR - kidney function test tomorrow, then admitted for chemo on Wed.

KinkyDorito Wed 11-Apr-12 15:39:23

That's good news Stinky.

DD is feeling a bit better, but is going for vinc tomorrow, so chances are will be feeling worse again quite soon as she is very affected by it. We are STILL waiting for the MRI to find out what else is going on with her.

I'm feeling wiped out at the moment. I've piled weight back on over the past couple of weeks, and I'm dreading going back to work on Monday as I'm not feeling very stable. I think the combination of the pneumonia/girl dying/finding out another child we know has had some bad news on tumour front is really getting to me. sad I'm not sure what to do. I'm getting really weary.

Queenmarigold Wed 11-Apr-12 15:47:42

hi kinkyD,

Sorry you are feeling so bad. I too piled weight on; it sort of comes off then it all goes back on again doesn't it. I don't know why they call it comfort eating; cos it isn't.

You are not stable because you are totally exhausted. This is such a tough long long road. Try to not to think the extremes - that it the way of depression, for example X ALWAYS happens to me X NEVER happens to other people. The reality is, some bad things happen to some people some of the time and it is pot luck. Unfortunately, you, I and others have had experience of how truly terrible life can be, there's nothing like a child dying or suffering with pneumonia to bring that home is there. Life is very very harsh sometimes.

I'm also feeling unstable as you know; I think I'm a bit paranoid but have noticed my little on ebign left out of things recently. Partly cos can't keep up due to tiredness still but also I think that I am a v depressing person to be around right now - not nice. I think people's patience runs out quite quickly and they don't want to hear my problems. So in order not to alienate myself totally I am going to try not to talk about it all.

Hope you get some sleep before Monday. I take herbal tablets and they do help during the witching hours of 2-5am, I'm in the habit of waking up for the 2am obs I think!

toughday Wed 11-Apr-12 16:57:51

Hi kinky, I agree with queen, exhaustion is really hard on you. I used to be awake from about 3-6 every morning and the be fast asleep at 7 when I had to get up. Are you taking a multi-vitamin? I found berocca to be very good and gave me a boost during the day for the tiredness.

On the MRI front, can you give them a ring directly to see when your dd is booked in for? I have had to do this a few times to see when dd is scheduled in for if I haven't heard anything.

KinkyDorito Sat 14-Apr-12 17:40:23


And thanks thanks. Still feeling shit.

Hammy01 Sat 14-Apr-12 20:44:22

Hi ladies, just wanted to send out big supportive hugs as your all going through so much with your dc. I still read this thread even though ds was mis diagnosed with lymphoma in January as you gave me so much support at that terrifyingly uncertain time for which I will always be thankful to you all. I wish I could repay the support I really do.
Wishing all your dc s better health and all you amazing mums the strength to get through each day x

Stinkyfeet Sat 14-Apr-12 22:39:51

Hi Hammy! How is ds now - is he fully recovered?

Kinky, I'm so sorry things are still shitty for you. Is dd feeling any better? Will going back to work help you at all, or just make you feel worse?

I'm not too great at the words of wisdom, but am thinking of you and hoping things get better for you soon. smile

Hammy01 Sun 15-Apr-12 19:19:26

Hi stinky feet, ds is fine smile freaks out when we have follow up appointments at hospital but understandable bless him.
How's your ds chemo going? Hope he is ok.
Kinky - how are you doing?
Thinking of u all

Queenmarigold Mon 16-Apr-12 15:37:40

How's today been so far kinky? Did you make it back to work?
I'm STILL awake all night ! aarrgghh!!

I'm so anxious all the time - this morning DD said to me 'my arm hurts mummy'. She's a little kid, that's the kind of thing they say. But me - I turn it into cancer don't I?! Mentalist!

KinkyDorito Wed 18-Apr-12 17:34:39

Child who had bad news has died today.

sad sad sad sad sad

He was 4.

I just feel so helpless all the time.

anonymosity Thu 19-Apr-12 00:31:25

I just wanted to say, there is a really good summer camp for children being treated for, or recovering from cancer - its called the Over The Wall Gang Camp and they have a week at Bryanston school in Dorset. Its based on the US version of the camp set up by Paul Newman, the Hole in the Wall Gang Camp.

It takes children well enough to attend between 8 and 18 yrs old and its really wonderful. The children all understand what each other are going through or have been through and are very supportive. They have a break from their everyday existence and some fun and lots of creativity. And sometimes knowing the camp is there, is something positive for the child to focus on.

Anyway, I hope that's vaguely helpful for at least one parent here. I know its hard when you're surrounded by tragedy.

KinkyDorito Thu 19-Apr-12 06:46:07

Thank you for that, anonymosity, that sounds like a really lovely place for them. I've heard that there is a house in Scotland where they run activities too, I think it might be owned by CLIC.

It is helpful for people to be able to get away. It is also nice to know that there is a chance to go after treatment.

Stinkyfeet Fri 20-Apr-12 22:23:38

Kinky, I really do feel for you; you are having such a dreadful time. I can't imagine how you must feel and how you keep going. Our circumstance is really a breeze compared to what you're going through.

Love and strength to you and yours. xx.

minmooch Sat 21-Apr-12 09:57:01

Aghhhh just lost a long post.

Kinky - my thoughts are with you and with the family that lost their little one. So sad xxxx

Sorry I have not been back to write - I find it hard to belong to a thread about children with cancer - my son has cancer, its been diagnosed for nearly 6 months and yet at times I still find it hard to believe.

My DS has had a rough few weeks with sickness and exhaustion meaning various trips to local hospital for rehydration, platelet and blood transfusions. The exhaustion is just overwhelming for him - we were told to expect this after radiotherapy - but it is shocking to see him wiped out completely.

GFR results were not good, kidneys are not repairing very quickly so it means one extra chemo is out. Maintenance chemo starts Monday and I am dreading it for him - obviously it wont be as harsh as previous chemos but really just want to let him rest before it all starts again.

Good news is that for the last 3 days he has only been sick twice a day and managed to eat a little something in the evening.

Bad news is that he has had some tingling and numbness in his cheek. Consultant says this could be side effect of radiotherapy but also could be something not good. MRI is on Monday as well, first one after radiotherapy. Consultant has said we may still not see much progress from last MRI and that the one in 6 months will be more important. It all seems to be never ending. I just want to be able to say to my son - there, we've done it, we've beaten it, all the shit stuff you have been through has been worth it.

Bad news on the husband front - he has admitted to not being able to offer me emotional support, hating the financial implications and says he does not love me. Nice. House is going on the market on Monday, solicitor has been instructed. Divorce on top of this is not going to be easy but I dont want my boys to live in a home where husband is not supportive nor loving nor very kind.

Last weekend the boys went to stay with their dad for 2 nights. When I went to pick them up it was like I was struck in the face by how ill my DS looks. I suppose being with him daily I get used to it - then a 2 day break made me see the reality all over again.

Its all so fucking heartbreaking and my thoughts are with each and everyone of us going through this with our children.

minmooch Thu 26-Apr-12 09:32:34

We started maintenance chemo on Monday and had MRI scan. One chemo given at hospital, other tablets taken at home. DS was complaining of terrible tummy ache close to midnight and when I got him up to go to the loo he fainted. Luckily I was supporting him so was able to gently lower him down bit very frightening as he is over 6 ft tall. He seemed fine the next day but temp hovering a little high all day then went over the magic 38 :-(. So we have been in local hospital since. I am very tearful and want to weep every time I look at him. It's so fucki g unfair - he's only 16 and I want to scream and shout and rant and rave for him - but I am too exhausted. If only I could swap places and do it all for him. I would change places in a heartbeat if it meant he could have a normal childhood and life. Aaaarrrrgggghhhh.

windywendy Thu 26-Apr-12 09:44:17

Shit, minmooch, I'm so sorry about all of the additional stuff you are having to deal with. I've witnessed a couple of husbands being absolute gits since we started this journey in January and it never fails to amaze me how heartless they can be. I'm wishing you lots of strength and love through this xx

We are doing ok at the moment frantically touches wood DS finished his consolidation block of treatment and we are now into interim maintenance and have regained a bit of normality. Last night was our 9th night in a row at home and it was amazing! Consolidation knocked him for six and until last week he had had an ANC of 0.00/0.01 since the start of March. This meant we were in and out of hospital constantly with high temps which - as you all know - is very draining.

I'm so so angry that we are all having to go through this.

FarloRigel Fri 27-Apr-12 19:55:46

Hi everyone. Just wanted to check in and say I'm really sorry to hear of all the problems so many of you are having right now. Minmooch I am staggered at your husband's behaviour at a time like this. I hope your DS got good results from his MRI and is home by now.

(waves to Hammy, really lovely to hear your update)

Kinky I hope you are feeling better and your DD is having a smooth run of things for a change.

DD loved her holiday so much that I kept finding tears in my eyes to see her looking so happy. Poor pet managed to run into a door handle at after school club the other day and is now sporting a very impressive black eye! Talk about coming back to earth with an all too literal bump! Luckily she sees the funny side of her panda impression smile.

KinkyDorito Thu 03-May-12 08:43:10

Minmooch I hope he's back out now. I know how you feel when you look at him. It is so incredibly unfair. You know I think your H should be bloody ashamed of himself. I sometimes wonder what karma is playing at.

DD has bug at moment and now I have it too sad. They've made her regular chemo dose smaller because her counts keep dropping. I'm not sure how I feel about that.

We've lost another child; another with ALL who relapsed and had bone marrow has just been given 6 months; another has relapsed. It's endless shite, combined with trying to balance 'normal' life. Sometimes I worry I'm going a bit mad. I was always someone who over-thought everything, so being put into this situation has made me a million times worse.

I've updated blog (shameless plug). Check out the guardian article I put on yesterday about GPs missing cancer in teens. Nearly every parent that I've met had to fight against the neurotic accusations to get their child referred by a GP. I took her to hospital myself after 4 fruitless visit to mine, even then they still took 2 more months. It's simply not good enough. I know many times it won't be, but for the few times it is cancer, it should be caught quickly.

Link here to blog:

KinkyDorito Sun 06-May-12 07:46:06

I hope the fact it is quiet on here is good news.

I'm having shitty time with life again, though DD is doing okay for a change.

So, I have written a more positive blog post now about how I think the internet has helped her. I'm sure other parents of cancer patients will probably find this is the case too.

It's nice to enjoy her being on the internet rather than telling her to step away and go outside for some air!

Lilymaid Sun 06-May-12 14:18:23

At the moment things are fairly positive for DS (diagnosed with CML in November). At that time it was touch and go whether he could go back to university and continue his course or would have to take time out and return the next year.
So far he has responded to treatment as hoped and feels much better generally. Before diagnosis he hadn't realised that the tiredness he had felt for the previous year/two years was anything worse than normal. Now he is better he appreciates how bad he was feeling.
He's hoping to still be able to go on a year abroad, next academic year, as part of his course and at the moment, that seems completely possible.
Thinking of all of you with DCs who are having to go through really difficult times at the moment.

KinkyDorito Sun 06-May-12 15:13:03

That's good news Lily. I wish him all the best for his studies; I'll bet he can't wait for a year abroard smile.

Queenmarigold Tue 08-May-12 12:25:30

Bump - logging in to check everyone's OK (ish) and to let you know I'm thinking and praying

Stinkyfeet Tue 08-May-12 20:33:12

All good here.

Just wanted to remind that the Great Ormond St doc is on BBC2 at 9 tonight, focusing on the oncology dept. I know it'll be a bit close to home for some, but interesting nevertheless.

KinkyDorito Mon 14-May-12 19:00:24

Watched that doc last night (taped it), and it reminded me of so many of the children we know.

Life is truly shitty here at the moment. I can't talk about it here for legal reasons, which should give you an indication of how crap it is.

DD is not too bad, but on lower chemo dose. So, now her counts are higher and doctor is worried it might now be working. Before, her counts were so low she had to be taken off it.

Car has died; waiting for the dreaded phone call with the cost.

I'm such a misery. On a plus, we did race for life yesterday. DD walked a bit and I wheeled her around the rest. I think we raised around £800, which is good going.

I hope you are all okay smile.

KinkyDorito Mon 21-May-12 08:57:25


KinkyDorito Mon 21-May-12 08:58:16

How are we all?

No news is good news?

DD perky at the moment, due to lower chemo. Hopefully she will be at school tomorrow.

Stinkyfeet Mon 21-May-12 17:48:31

Hi Kinky, so glad to hear dd is feeling better now smile. How are you? Have you been able to get to work much?

All good here. Ds goes in for chemo on Wed - his 4th cycle of the 8, so we're whizzing through! Bloods all fine. He's been going back to cubs and is even going out in the playground at break at school. Exercise and fresh air definitely doing him good!

I'm sure he's put more weight back on as well - we'll find out on Wed.

Hope everyone else is OK and all the children are staying well.

KinkyDorito Mon 21-May-12 20:26:17

That's great Stinky; he sounds like he's doing fab!

There's some stress with work that I can't talk about on here. Suffice to say, that has made me much more anxious.


I must be due some good luck soon smile.

Queenmarigold Wed 23-May-12 13:53:36

Hi Kinky, how are you doing?
I am a little better, getting some help from an unexpected source psychologically but I have slept a whole night this week! Feel like a new woman! :-)

KinkyDorito Thu 24-May-12 18:42:01

A full night's sleep? I have no idea what that is...

I could do with an unexpected source to help me!

I'm pleased you're feeling a bit better though Queen smile.

expatinscotland Mon 28-May-12 12:08:51

Hi, all!

Just dipping in and out.

DD is Day 17 post cord-blood stem cell transplant for AML (translocation 6,9; mutated FLT3).

Results of chimerism test won't be back to Wed. so we'll then know if and how much the graft is working.

The conditioning chemo, being her 5th round of 7-10 day blocks of intensive chemo since 30 Nov., hit her VERY hard. She got a viral infection in her throat, typhilitis in her small bowel, fungal infection, mucositis and her entire gut is very very inflamed.

She has been having sips of water, about 200mL, for a couple of days now and so of course, the lazy arses tries to put all her drugs back to oral.

Cue cramps and vomitting. So consultant changed them all back except the one to stave of VOD, which has to be oral.

She did NOT sleep for over a week. Why? Morphine. She's now resistant to it. But they kept her on it for days until introducing ketamine and several more before ramping up the ketamine.

She itched all over, she hallucinated and she got zero pain relief.

Oh, I had to tell them NO STUDENT NURSES, either, after I got a) one unsupervised who diddled with her syringe driver b) one who offered her juice when she was nil by mouth c) one in to read her 8 drips.

She's also in strict isolation due to infection risk so that means they can't come in, either.

KinkyDorito Thu 31-May-12 07:00:10

Hi expat It's so hard in hospital when you are under the 'care' of others who don't seem to know what they are doing/give conflicting messages all the time. That was the hardest thing for me when she was in - trying to be there all the time because if I leave, and someone else is there to give me a rest, they seem to change everything.

One time, she was really ill. I came home for a break and left her with her dad's parents. They discharged her! When she arrived home she couldn't walk and had a fever temperature. Needless to say, we were back an hour later confused. Because DD is on autistic spectrum, she doesn't communicate clearly how she feels. The consultant on rounds (not ours) asked if she was okay. She said, 'I'm fine', which is what she always says, and so they sent her home. Jeez. angry

We have had many great doctors and nurses, but we've also had some real issues.

KinkyDorito Thu 31-May-12 07:01:50

Good advice for recently diagnosed is to keep a notebook of what you are told each time you speak to someone. This helps you to keep track, pass over to others should you need a break, and, unfortunately, formulate a complaint or report to PALS should you need to.

KinkyDorito Sat 02-Jun-12 08:07:49

Happy half term smile.

And crown, just because we can.

toughday Sun 03-Jun-12 22:42:56

Hi everyone, hope you are all had a lovely weekend. DD got the all clear in her last scan so that takes us to a year post treatment. I was so anxious and I don't see how it will ever get any easier coming up to scan time.

kinky hope that things are going a bit better now

FarloRigel Tue 05-Jun-12 11:16:12

tough I'm so pleased the scan was clear, one year OT, that's fantastic!

expat I'm so sorry to hear about your DD's troubles with infection and pain control. We struggled to convince them to give our DD pain relief too and it's completely unacceptable.

I hope things are going well for everyone else and your kids enjoyed the crown weekend.

windywendy Fri 08-Jun-12 10:59:51

Hi all, I hope you are all doing ok.

We have just enjoyed a lovely few weeks at home on interim maintenance and were due to start the delayed intensification block on Monday, but DS has randomly acquired chickenpox so that is on hold and we are in hospital on IV aciclovir for the next few days sad

We also had a massive cock up which saw him receiving a half dose of his mercaptopurine for about 4 weeks. Fortunately he is ok, but Im pretty angry about it and it hasn't helped with the anxiety levels.

We also had a very good review with the main consultant so are feeling a bit calmer now. For a few days anyway!

Lots of love to you all x

Changethatbulb Sat 09-Jun-12 22:41:53

I am very late to this thread but wanted to say I have a son with ALL (Acute Lymphoblastic Leukaemia). We are 2.5 months away from completing treatment.

He has a form of albinism, is partially sighted, learning difficulties and has autism.

The good thing is he has never really understood that he has cancer and I'm pretty grateful about that to be honest.

I'll have a good and proper read of this thread tomorrow. Just wanted to say hugs to all.

Queenmarigold Mon 11-Jun-12 10:20:14

I know what you mean about 'care'. We have had overdoses of chemo (some idiot couldn't record the weight properly), fluids disconnected and not reconnected, meningitis due to unconnected spinal tap - despite me saying 'it's wet, is that right' over and over again. I felt like an invisible person, yet I was the one who cared the most. There was one whole day where I was stood at the end of the bed literally wringing my hands asking for help and I was ginored the entire day. Yes, that's 10 hours I was stood there. I will never, ever go back to that ward. Appalling.

Does anyone know how long fatigue post chemo lasts? We are nearly 1 year out of chemo but tiredness is still a major issue.

KinkyDorito Mon 11-Jun-12 18:01:18

Hi Change and welcome - my DD has Asperger's too. She is high functioning though so has understood everything. Plus, she's 13.

Hi Queen.

Please read for Farlo

or see

Stinkyfeet Mon 11-Jun-12 20:24:17

Toughday - great news on the scan - you can relax for a while now.

Windywendy - sorry to hear ds is unwell - I hope he's feeling better soon.

Changethatbulb - welcome to the thread - how old is ds?

Things are still going well here; ds has now had all the chemo for cycle 4, so we're halfway through. He has an MRI scan at the end of this month. It's just a standard halfway scan, but it's giving me a bit of a wobble.

Changethatbulb Mon 11-Jun-12 20:39:14

Thank you for the welcome.

DS is 7.5.

stinkyfeet - I hope the scan is ok. Fingers crossed.

Kinkydorito - I will check the links out when I am not on my phone. I am hoping to get an early night tonight. DS1 has just got back up though. Sigh.

KinkyDorito Mon 11-Jun-12 21:44:58

I hope scan goes okay Stinky.

How has treatment been for your DS Change?

despite me saying 'it's wet, is that right' over and over again. I felt like an invisible person, yet I was the one who cared the most. There was one whole day where I was stood at the end of the bed literally wringing my hands asking for help and I was ginored the entire day. Yes, that's 10 hours I was stood there. I will never, ever go back to that ward. Appalling. So true. I ended up in tears of frustration so many times over shitty treatment. I'm not a big crier and I think my height and build (tall and fat grin) makes me seem quite intimidating... so starting to cry tended to shock them into actually helping me. It's hard to feel powerless.

If you ever need help in hospital, remember PALS - all hospitals should have a patient service that will help you iron out issues about care, without starting a formal complaint procedure.

KinkyDorito Mon 11-Jun-12 21:45:28

I hope scan goes okay Stinky.

How has treatment been for your DS Change?

despite me saying 'it's wet, is that right' over and over again. I felt like an invisible person, yet I was the one who cared the most. There was one whole day where I was stood at the end of the bed literally wringing my hands asking for help and I was ginored the entire day. Yes, that's 10 hours I was stood there. I will never, ever go back to that ward. Appalling. So true. I ended up in tears of frustration so many times over shitty treatment. I'm not a big crier and I think my height and build (tall and fat grin) makes me seem quite intimidating... so starting to cry tended to shock them into actually helping me. It's hard to feel powerless.

If you ever need help in hospital, remember PALS - all hospitals should have a patient service that will help you iron out issues about care, without starting a formal complaint procedure.

Changethatbulb Mon 11-Jun-12 22:04:16

KinkyDorito the early days were bad, but we were lucky and he only had one Direct Intensification period. I don't know if that is a term they use everywhere wrt leukaemia. He is on Regimen A. Basically it's monthly vincristine along with 5 days of steroids, daily Mercaptopurine, once weekly Methotrexate, weekend Co-trix.

Anyway, the early days were awful - and I was divorcing my h when DS2 was diagnosed so it's a it of a blur. Maintenance has been good. We have had a few scares, temps spikes, but it has improved so much since he got his line taken out. What a relief that was.

How are you doing? Where are you up to now?

Best wishes to all with children who have any cancer. If I had one wish, I know what it would be.

FarloRigel Mon 11-Jun-12 23:32:16

Thank you Kinky and thank you Stinky for posting.

Welcome, Change, I'm glad to hear you are nearly through with treatment. We are 7 months out now and although it's still very stressful each and every time there is a bruise or she feels unwell, I love seeing how much better she looks off all the chemo and steroids.

windy I hope the chickenpox episode is over very quickly and your DS is feeling better.

Queen that is horrendous. We had some issues too including an overdose of paracetamol and a near double dose of chemo so I do know that feeling when you worry you can't trust the people caring for your children at their most vulnerable sad

BettySwallocks2012 Fri 15-Jun-12 10:24:39

Hi all,

I'm so sorry to read all your stories, I can't even begin to imagine what you are going though. I have been kindly pointed over to here by Mackerella as I was looking some advice over on chat. Here is the message I posted.....

Feeling a very useless, DHs friends baby girl (7mths old) is in hospital just having her first chemo session tonight. DH is / was very close to the dad but life got in the way somewhere along the line and they haven't been as close in a few years. We don't really know the mum, I have never met her and DH only a couple of times.

The prognosious doesn't look good really..... And we just feel so helpless. Obviously, no visitors allowed etc and they don't really live close enough for food parcels etc so I would like to send a little gift to the hospital just to show we are thinking of them.

Any ideas of something appropriate (ie not teddies etc) to send the the little girl and would you enclose a card ie get well (??) or a thinking of you card?

Would really appreciate your thoughts, thanks

I'm so sorry if this is a trivial question and if you think it would be better not to impose / send a gift I would like you to say.

Im wishing all of your babies the best possible outcome and please please take care of yourselves too.

Un MN hugs but what the hell,

FarloRigel Fri 15-Jun-12 13:20:36

Thank you Betty. I'm so sorry to hear about your DH's friend's little girl. I hope very much the treatment will be successful.

My advice to you would be to definitely get in touch and stay in touch regularly. You would be amazed how many people completely abandon you when this happens and the few that stay in touch are so precious at a time when you so desperately need support.

You can send anything that can be easily cleaned really, plastic toys, vinyl bath books, lovely laminated posters. Perhaps even a nice mobile for the hospital cot as.long as it is easily wipeable. If your dh can visit the parents, he could bring something thoughtful like a bag of cold coffees or microwave meals (not normally allowed to have hot drinks on the ward and usually only a microwave for cooking).

Thinking of them and wishing them all the best. They would be very welcome here of course but may not be ready for that for a while yet.

KinkyDorito Tue 19-Jun-12 18:48:12

Farlo is right - it can be a very lonely place in hospital. Having contact would be helpful for them, I'm sure. After the initial shock and everyone showing lots of support, it does seem to drift with time. Stick with them and keep offering help.

I could do with a friend or six. DD's chemo got put back up and now her neutrophils are 0.17, so once again she's been taken off it. She's having to have a load of tests as her body has swollen up. I don't know. I'm going to miss more work, just when I'm being most scrutinised. I keep wondering what we've all done to deserve the endless shit.

KinkyDorito Thu 21-Jun-12 20:06:55

Bumping with a smile smile.

Lilymaid Thu 21-Jun-12 20:14:41

How are you Kinky? DS is lying on the sofa watching the football. I know that worrying about a 20 year old with CML is not the same as having to stick it out in hospital with a desperately ill child, but he drives me nuts! He came back from university and didn't arrange his hospital appointments and move them to our local hospital. He's now down to a few days of Imatinib and so I'm worrying that he won't get seen before they run out. All daft of course, as this won't happen, but once a mother, always a mother.
All very minor compared with your experiences, so I hope things are a little better today for you and your DD.

KinkyDorito Thu 21-Jun-12 21:01:46

Not great. You'll learn not to ask me wink. I feel like a little cloud of doom.

She's still very neutropenic and some of her bloods aren't right. They've taken a load more tests (we were there 8 hours today) and have asked me to take her back in a week, unless something alarming shows up and they will get me to bring her back before.

Consultant finally admitted teens struggle more with treatment. Through first bit, everyone told me when we got past intensive chemo, life would be normal. But we've struggled ever since.

I am feeling worn out this evening.

It must be hard to trust your DS with organising things. No offence to him - I am just thinking about my 26 year old brother. I had to ring the dentist up for him to sort an emergency appointment last time I was visiting as he hadn't bothered. He was in agony! I don't know why - my DH always puts these things off too. I don't want to say it's a man thing as I know that sounds sexist, but the men I know are all like this grin. It has to be a total emergency to inspire action!!

KinkyDorito Tue 26-Jun-12 18:30:02

Bumping again.

Been in hospital again. Now out again. Still waiting for MRI results to ascertain whether nasty and invasive treatment is needed for iron overload.

Queenmarigold Wed 27-Jun-12 15:17:30

Kinky - of course life is not normal after intense chemo. Apart from all the life changing side effects, it is a life changing experience which will forever clod your vision and change the way you see things.
Well that's what it has done for me.
I am quite bitter and jealous, but then I feel guilty when i remember the families that I know who don't have their DCs . My LO has been sick today - just a bug I htink - but it is a symptom of tumour that is v scary. Brings it all back with a whoosh, haven't been able to concentrate all day as a result.
Looked back at my blog and this time last year my LO couldn't speak with the pain of the cell stripping internally. Its just so horrible and awful to think about it, and now I have to face school and no doubt the bullying that will happen as she looks so different to everyone else. Its so childish to moan that it's not fair, but it isn't. Its shit.

KinkyDorito Wed 27-Jun-12 15:28:12

It is shit Queen. DD had some bullying over having short hair. Kids can be cruel. However, I know what you mean about being grateful for having them. We lost yet another little one from our ward a couple of days ago. It is so cruel.

I hope your LO is feeling better now. It is very unnerving every time they are ill. DD still has 10 months of treatment to go, and then we move on to the lifelong worry. I am very tired!

KinkyDorito Sun 01-Jul-12 09:15:57

I have updated blog with some advice for parents of newly diagnosed children. If anyone thinks I should add anything, please let me know.

My blog is a MN one, under health, 'The Acute Lymphoblastic Leukaemia Diary'.

EveryPicture Mon 02-Jul-12 12:13:02

Name-changer but lurker here. smile

Kinky, thanks for the heads up on your blog. The bullying must be hard to deal with. I also remember being on the wards and someone not making it. It is beyond awful.

My DS2 has 5 weeks to go. He has ALL so has had over 3 years of treatment. It has brought back so many memories. In a way I am happy his treatment will end, in another way I am re-living the horrors of it all. The McMillan nurse said this is normal.

I want to feel happy but I don't. It is hard to explain. I expected to feel relief and freedom. All I feel is anxiety. What if it comes back? What if I throw a big post chemo party and he gets ill again?

Sorry for the self indulgent post.

Queen and others, I hope you are ok. I'm just having a bit of a weak moment.

KinkyDorito Mon 02-Jul-12 15:09:48

Every that all sounds totally understandable and not self indulgent at all. I think we have this fear for life now sad. Throw your party, celebrate getting through the last few years because you all have!! Then, take each day as it comes. There is nothing else we can do. Sending you love.

Stinkyfeet Thu 05-Jul-12 14:45:21

Haven't checked in for a while, but all is fine here. We're in hospital at the moment for chemo - cycle 5.

Ds1 didn't have his MRI scan as they hadn't arranged the anaesthetic and he won't have it without! So that's now been rescheduled for the end of July.

Keeping up to date with Expat and Ailidh - it's heartbreaking how hard this is for them. I really hope there's a breakthrough soon. We're on a 36 bed unit and it's full at the moment, not to mention the daycare patients. So many children going through this. It's just awful.

KinkyDorito Thu 05-Jul-12 17:04:31

It is really awful Stinky.

They want to check DDs bone marrow next week as her counts have been low for no reason for a few weeks now. They said they aren't too concerned at the moment, and if her bloods improve by next week, they won't bother. But I'm still worried. sad

lisad123 Thu 05-Jul-12 21:50:50

Came over here to check on you all. I know we are all thinking of Ex pat and family now and it brings all the horrible truths of the disease to the surface. I'm hoping your all holding strong and wanted you to know I'm thinking of you all too x

KinkyDorito Thu 05-Jul-12 21:55:34

Hi lisa. I hope you are all okay too. I've been following Aillidh for several months now on facebook, and I've been rooting so hard for her. It seems like children are being relentlessly taken from us at the moment, and I am praying that she pulls through. I feel so dreadful for her poor family. It is a cruel, cruel illness. We've lost 3 recently at hospital. sad sad sad

lisad123 Thu 05-Jul-12 22:04:41

It's a horrible nasty thing and we have lost a few friends over the last 3.5 years of dealing with this disease. It terrifies me as Dh has no match at all, he too has a odd family history.
Hate that another family is going though this and so young, same age as my dd1 sad
Been following their journey from the start, can't believe it's come to this. sad

KinkyDorito Fri 06-Jul-12 18:21:02
Stinkyfeet Fri 06-Jul-12 20:07:31

Thanks for linking this, Kinky, I've sponsored them both.

How are you coping at the moment? I can't help but feel guilty that ds is so well, both from the disease and the treatment. It's so unfair that expat and her family are going through such hell and agonising waiting, while we're breezing through it all. Not that I want it to be worse for us, I just wish it could be easier for everyone else.

KinkyDorito Sat 07-Jul-12 12:07:16

It is cruel and unfair when you see others really suffering. When DD was in a fortnight ago, there was a girl the same age, also with ALL, at the same stage of treatment, and her kidneys were failing. Her poor dad was on ICU with her through the day, then sleeping on the ward at night. It's horrible. I have no idea what happened to her sad.

DDs tests are next week. If her counts are still low, they have to check her bone marrow to see if leukaemia has come back. I just feel so incredibly tired. I've driven DD ands DS to see my parents, Dsis and nephews for the weekend. If we do have bad news next week, we won't be able to do anything like this for a while.

Personally, I would rather be in bed with the duvet pulled over my head. Depressed? Me? grin

mackerella Sun 08-Jul-12 01:47:04

I haven't posted here for a while, but what Stinky says really resonates with me, especially after the incredibly sad news that Aillidh lost her fight against AML late last night sad

Someone up thread (QueenMarigold ?) described her DC as having been "damaged" by the experience of cancer - and that's exactly it: my DS has been left permanently disabled, both by the cancer and by the treatment, and the whole experience has shaped and blighted our lives in a way that can never be erased by any number of years of remission. DS is at a very high risk of second cancers in later life and there are all sorts of other issues that complicate and limit his future life choices. BUT ... DS is "lucky" to have a cancer with a relatively high survival rate (although his chances of dying are very much greater than those of a child without cancer!) so we've sort of put the possibility of death to the back of our minds, especially now we've got through the critical first year of diagnosis, relapse, aggressive chemo, etc. And when I read about families who are not so lucky, then I can't help feeling guilty that we're somehow having it "easy", which is mad. There's a kind of double-think going on in my head - on the one hand, I can see objectively that we're in a pretty shitty situation and on the other hand, I feel guilty and cross when people sympathise too much (even though it's actually what I want them to do) because things could be so much worse, and because you can't spend your whole time dwelling on how awful things are because you'd go mad. So I spend my time going round in futile emotional circles instead and feeling unfairly resentful towards family and friends who can't say the "right" thing sad Anyone else feel like this?

KinkyDorito Sun 08-Jul-12 09:35:27

I have written some things in this post that may be upsetting for parents to read, about the treatment of cancer. Please don't read this if you will become upset.

I remember Ade Edmondson being interviewed about Jennifer Saunders having breast cancer, and saying it's not like a 'roller coaster' of pain and emotion, it's a kind of long lasting, endless drag of misery. I am totally changing exact word useage, but it's that kind of thing!

Here: "Ade Edmondson wants to get something off his chest. No one, he says, 'battles' cancer. Neither is it 'a rollercoaster ride'. 'It's just a long, slow, miserable grind,' and he wants me to quote him on that verbatim."

That is so true, and I am expecting the repurcussions of treatment to continue this kind of worry and upset long into the future. I just hope that as she gets older, it does become easier. But, I bet, it will still rear it's head on a regular basis. My mum's friend is 2 years off treatment for breast cancer. One little thing happened, and the site of where she's had radiotherapy on her breast flared up quickly with infection. Another, she said, reminder that it will be with you forever.

I won't lie, I think we are destined to spend the rest of our lives hoping our DC are clear of this thing. We are pumping so much toxic shite into them to stop them from being killed by something that would have killed them, but not being completely aware of what the result of that will be. Will their organs be okay? Will their bones be okay? Will their fertility be okay? Will they get cancer later? We have to blindly follow as it is a case of do or die, but the 'do' could also kill them. The whole thing is horrific, and brutal, and so, so, so unfair.

Nobody can help either. I think the parents have to create this illusion of strength for their children, whilst our minds rattle through all of the potential outcomes. Other people will always say the wrong thing/be futile/ etc as they have no idea what you are going through. How many of them have had to hold their baby down whilst they try and find yet another vein for a cannula, and have to give up on the arms because they are too brusied, so go for legs instead? How many of them have had to sit up all night with a sick bowl, stroking their child's back as they vomit and vomit? How many of them have had to hold their teenage daughter close as she pulls handfuls of her own hair out? How many have had to watch their 2 year old be heavily sedated so they can be put on a machine that removes the stem cells from their blood? Lumbar punctures? Bone marrows? Brain surgery? Organ failure? Serious infection? ICU? Even, the first time you see your child go under anaesthetic, knowing that this is serious, and they look so little on the table?

The closest I came to real understanding was a colleague at work when she said to me her daughter (3) had been taken into hospital for the weekend. It was a minor thing. She said she was worried sick, awake all night, felt ill herself, BUT she knew her daughter would get better. And she came to me the following week and said, I had to say this to you, all I could think about was you and your DD, and how I cannot imagine what it would be like to walk in your shoes. She's right, nobody can.

Even within our community, we all have had different experiences, and we are all different people who deal with things in different ways. You are completely entitled to feel miserable, depressed, cheated, worried, scared stupid, unlucky: I could go on and on, because, as soon as our children got cancer, this became our lives. But you are right mackerella, you have to try not to dwell, for we will go mad.

My prayers and thoughts are absolutely with expat today, and will be for some time. They will also be with Olivia's parents, and Jess', and Thomas', and Sadie's, and, as always, with Billie's.

It is an evil, evil, bastard illness, and all the trips to Disneyland in the world will never make up for the journeys our children are forced to take through treatment and beyond.

Stinkyfeet Sun 08-Jul-12 10:21:26

Kinky and Mackerella, you've both put into words what so many of us think I'm sure.

Kinky, you've reminded me vividly of ds in hospital after his surgery - he would grip my arm, digging his fingers in, screaming at me through gritted teeth "I hate you. It's your fault I'm here". And having to stay calm and strong and not being able to do a damn thing about it.

Hope everyone is OK this morning.

Vev Sun 08-Jul-12 15:16:01

I suffer from that evil, evil bastard illness. Five years on - went for my final bone marrow test last month, thought I was going to be given the all clear but oh no, told I had to be monitored every six months "'cos there's no guarantees, all good at the moment and we do what we can. Have to have regular blood tests blah de blah". I felt like crap. It's never ending. I do have a bone marrow match in my brother, don't know what I'd do if it came to that to be honest.

It must be horrid to have to watch your children go through it and rather me than mine.

ToothbrushThief Sun 08-Jul-12 15:37:46

Other people will always say the wrong thing/be futile/ etc as they have no idea what you are going through

You're so right. Even when we do not speak, aware of how ignorant we are/likely to say the wrong thing... I think we all do think

I realise how unhelpful that is but didn't wish to ignore your post either.

KinkyDorito Sun 08-Jul-12 15:54:02

Toothbrush I don't want to make it sound like it falls on unappreciative ears. I would rather people spoke to me and wished us well rather than pretend it isn't happening. I possibly didn't make this very clear in my post, and thought afterwards that I haven't expressed myself very well at all. It's very difficult to explain. I think mackerella is correct when she says she doesn't want sympathy (there's always someone worse off), but she does want it too.

It's an awkward, and lonely, thing because people can't take it away for you, even though I'm sure they would want to.

Where I work, I go in and people have stopped even asking me. And it's so weird: I can be in hospital with DD, critically ill, nasty infection, hear about other children we know passing away, then she gets better, and the next day I'm at work and it isn't mentioned. I think my head might explode from it all at some point!

Vev I'm sorry to hear that you have this too sad. I know that when DD finishes treatment, she gets to go to clinic forever, afaik. It starts off every couple of months, then every six, then annually. But, from what I gather, she goes every year after. Like you, I don't want to even think about bone marrow. DD has to have hers checked early next week (counts have been unexplainedly low for weeks now) to see about 'disease': relapse. sad I really, really hope her counts have come up. Bone marrow is a place I really don't want to have to go. Sending you love. I hope you are going to celebrate the official end of treatment, even though they want you back for checks smile. I'm planning a big holiday next year. We all need it!

Vev Sun 08-Jul-12 17:52:50

Thanks for your kind words Kinky. thanks

I do hope your DD's okay, it's a nightmare. Counts are a nightmare when you're still on treatment, up and down all the time. It's a roller coaster of a ride.

Theglassishalffull Mon 09-Jul-12 22:12:43

Hi all, just wanted to say hello, hola, and sut mae to you all. Although I don't have a child with cancer I do work with a child with ALL as well as SEN. I have worked with him since he was 2.5. He was 3.5 he was diagnosed with this crap waste of space disease. The phone call his mother made to me after he was just diagnosed was horrible, his usually calm, happy Mum was in pieces( as was I after getting off the phone) she cried and thanked me for all I had done for her son.

Two hours later she rang up and apologised for being upset and reassured me that his chances were very good and promised to keep me in the loop. I then received regular texts and phone calls from her throughout the 6 months he was in hospital.

When I visited the first time it was awful, he was slumped over, crying in pain. The usual happy boy was a gost of himself. A day later he was in intensive care unit. The next time I visited he was much much better.

After many ups and downs he is now in school where I continue o work with him. He is so resilient and his Mum, Dad and little brother are brilliant. Recently we went on our school trip, luckily his bloods were good and he was able to come, that was one of the best days of my career so far. I have since taken him out for his birthday which was an amazing and wonderful day. A far cry from his birthday 12 months earlier!

Theglassishalffull Mon 09-Jul-12 22:16:18

Just wanted o finish by saying this thread is great and you are all so wonderful ( hope that doesn't sound patronising). I wish you allthe best.

KinkyDorito Thu 12-Jul-12 06:54:54

Theglass Hello and welcome. It's such an awful thing to see somebody that you care about go through.

We're hospital today for spinal chemo, MRI results, Xray and to see whether her counts have come up. If not, bone marrow to check for leukaemia.

A long and stressful day, I think.

I hope everyone else is doing well. At least it is, for a change, sunny outside this morning!! smile

FarloRigel Thu 12-Jul-12 11:11:03

Only have a minute but just checking in to wish everyone all the best. Hi to all the new posters, I'm really sorry you are going through what you are.

kinky you'll be in my thoughts all day today, I hope her counts have done their stuff and you're spared the bone marrow aspiration.

thanks to everyone who shared Olivia's story or helped in any way. It absolutely meant the world to her parents to get her back to Scotland and everyone caring so much and coming together so fast to help them and their little girl is of huge comfort to them.

KinkyDorito Thu 12-Jul-12 18:47:59

I'm just so sorry you all lost her Farlo sad.

Bone Marrow not needed, thankfully. Other tests still going on for iron overload.

Thank you for thinking of us thanks

minmooch Fri 13-Jul-12 07:16:03

Hello everyone. Sorry I have not been around - I have been lurking on 'Relationships' as my relationship with DH crumbles fast and furious. I use it as a distraction to the worse reality of my son :-(

Farlo my love and thoughts are with you and Olivia.

Kinky - your post on Sunday morning was hard reading but you summed it all up perfectly sad. The damned-if-you-do and damned-if-you-don't choices we get to make for our children are no choices at all. The whole situation is relentless and that males it so hard to cope with. Every day I wake up exhausted, I feel sick with exhaustion most evenings, I can't ever imagine a day where I don't feel tired. I can't ever imagine a day where life is normal again sad.

My son sleeps through the night most nights now, except for if his feed pump bleeps, but it makes no difference to how I feel - the exhaustion is bone deep and no amount of sleep takes the edge off it.

I am divorcing DH at the moment and that is hugely stressful, plus selling one property to release cash, sell our family home and buy a house for my boys, dog and cat to live in. I hope that when this part is done (hopefully move in 6) weeks I will have a little more energy. I hate, hate, hate my husband for being the shit he has been whilst my son has been ill and sucking energy from me at a time when I need it all to ficus on my son. I will never forgive him for piling on the shit at such a shit time - daily I live with him adding more and more. He has no compassion.

Will is doing ok at the moment. Maintenance CHEMO is going ok - but of course then I worry it's not strong enough and not doing what we need it to do. Drs wanted to add a further stronger chemo in there but kidney failure on an earlier cycle means they can't risk it. We are at the stage where they have done all the intensive chemo they can, all the brain surgery they can, all the intense radiotherapy they can. We are only left with a years maintenance chemo. This has got to work as we have no other options. Last MRI scan showed tumor had changed shape, got slightly bigger and there had been a bleed into the space left by the bits of tumor they could take out. Fuck how do I live with this knowledge? The Drs hope (they can't be sure) that it is radiotherapy effects which would be good, rather than tumor growing. Another scan in October. The uncertainty of it all is horrendous.

My DS has missed a year of school. He is desperate to enter the 6th form with his peers in September so this week has bedn a week of meetings at his school to see how it can work. His current (maybe permanent) disabilities make this tricky (fucking understatement there). The school are being exceptionally helpful but I fear they may turn around and say it is unsafe for him and others. It was heartbreaking (for me) to spend time with his healthy, normal friends and watch them run all over the place. I wept buckets when we came back but nobody seemed to understand why I was upset?

I feel I have to battle for everything. I am not sure if I am allowed to ask this but has anyone heard of a rule that says the NHS can't provide physio for anyone with a grade 4 brain tumor? I have been told this, been told by others I have a case to put in a formal complaint but I don't know if I have the energy to take on this fight too?

My son seems to find his battle much easier than I do - I'm not sure if that is because I am his mother, has he just handed all his worries to me? Do I know, whereas he doesn't, how much he is missing? Is he the bravest person I know or is he hiding his worries from me? He is 16 by the way, should be that lively age of finding your independence, finding young love, playing hard at life. Aaaarrrrgggghhh.

It's just so not fair and I am so fucking mad for all our children at the unfairness, the horrendousness of it all. I spend most of my time either wanting to sleep, cry or scream!

Anyway morning life calls, alarm clock ringing for my other son who is entitled to a normal life (Christ how this affects siblings too sad).

Wishing us all gentle days today. Love to each and everyone xxx

Sorry if that was a huge ramble.

minmooch Fri 13-Jul-12 07:17:16

Oh and meant to say Kinky great news bone marrow not needed xxxx

FarloRigel Fri 13-Jul-12 13:14:07

Thanks Kinky. I really am so pleased you didn't need that BM for your DD.

Thanks to you too minmooch, poor little DD especially is grieving for her partner in crime, they used to shriek with laughter stealing a couple of big feeding syringes and filling them with water to go soak the nurses with. We all thought the world of her. It's something we all go through, I know, tragically, losing our kids' wee pals, but it is so damn close to the bone and you do get so attached to the kids you live with on the ward for months, especially when they are that special.

Massive hugs to you minmooch I am so sorry for everything you are going through. Your DS sounds absolutely bloody amazing and I am keeping everything metaphorically crossed that the scans in September show good news and that he never looks back and can concentrate on the bright future he so deserves.

Much love to you all thanks

KinkyDorito Fri 13-Jul-12 15:55:18

minmooch I think a ramble here is needed: get it out!! I'm so sorry you are having to go through these things sad. I hope there is retribution for people like your DH. How unbelievably callous to abandon a person who you purport to love at such a time. There are no words. I wish we could make them wear a badge so nobody else gives them the time of day ever again; 'weak, spineless, ducks out in a crisis'. I really hope you have some support around you.

I totally understand how you felt seeing the peers of your DS. I teach DD's! I teach two classes of students she knew really well, several of whom bullied her when she was at school (before cancer). I have had to learn to be very detached, but I can completely sympathise with you finding that incredibly emotional. It brings home what they are missing. I sometimes look at them and think they don't know how lucky they are, but then children aren't supposed to have to do that. It's just a total bastard that our kids do.

Your post beautifully conveys exactly how I feel: the tiredness, the overwhelmedness, the horror of what we are forced to know and see. I am so sorry to hear that his tumour has got bigger. I don't know what you do with that, except find somewhere to go and scream or hit things. Make sure you try and let it out out somewhere before it makes you poorly too. If you ever want to PM me, or have a chat, just let me know. I am sending you much love. smile

Wave at Farlo grin.

KinkyDorito Tue 17-Jul-12 16:44:38

Always here... lurking... grin

FarloRigel Wed 18-Jul-12 11:57:45

Passes Kinky brew and biscuit to keep her going as she lurks and sends everyone good wishes for their amazing, brave children.

Queenmarigold Wed 18-Jul-12 15:08:01

minmooch - why on earth should the NHS not provide physio? That can't be right, certainly we were grade 3 and not told anything of the sort. However physio in the community where we live (Midlands) is appalling - they are constantly off sick and just turned up and told me I was doing all the right things. FFS. After I've nursed my kid night and day for over a year, researched and liaised with onoclogists, pharmacists, and brain surgeons, I then have to deliver f**kg physio on on top of everything else. Un-fkg-believable. And then they go on strike about their pensions...angry

Yes, absolutely you must fight for it. Yes it is unbelievably hard to find the energy, but ignore your rubbish H for a while - he doesn't need you. Your son does, and he needs the physio care.

The one thing I learnt during our nightmare journey is that the ONLY person who truly cares enough is you. You are their voice, their energy, their passion for life at a time when they can't do it for themselves. They will do it for us, one day when we are old and need them. You can, and will find the energy.

KinkyDorito Wed 18-Jul-12 18:29:01

Ta Farlo grin

Queen so true about being the only person who cares enough. I hope everything is okay with you. smile

minmooch Thu 19-Jul-12 22:52:59

Kinky - thank you for your words xxx

Queen - oh I will fight for his physio it's the formal complaint I don't know if I have the energy for. I have kicked up such a fuss NHS physios are seeing him at the moment. I am not convinced they will continue so I am paying a private one too.

DS had a terrible day today. He has been so brave, stoical, smiled all the way through all the shit but today he fell apart. He spent hours sobbing his heart out, asking why this happened to him, he hates being in the wheelchair, hates taking his medicines, hates being sick, hates not going to school, feels he is useles. All I could do was hold him tight, sob with him, tell him how unfair it all is. My heart is breaking for him sad. It is just so unfair. I can't even give him a timescale for when he will be better.

Yesterday he said to me that when he is older and has kids of his own how he would build a huge sandpit for them and hide things in it for them to find. I don't think he realuses that his fertility has probably gone - I know there ate other ways of having children but it's so unfair that he will have to fight that as well.

We are off to Dorset tomorrow for a few days. Hoping we get to have a few days sun if only so we can sit out and have a glass of wine - that is my mum and I - kids will be on something softer.

You are right Queen we are their passion for life, their everything.

Love and strength all round xxx

Queenmarigold Fri 20-Jul-12 15:57:03

Good for you, girl. Good for you. Keep doing it, and when you can't do it, take baby steps and don't look further ahead than the next 30 seconds. We all know what that's like.

It honestly gets better when chemo finishes. It takes about a year - but when they are off it all of a sudden they have so much energy you can't keep up!

And for fertility - I'm planning to get my eggs saved. I will fight the NHS to pay for that one as well, they did this, they don't research it enough so they can pay.

KinkyDorito Sun 22-Jul-12 14:52:08


KinkyDorito Fri 27-Jul-12 15:56:02

Always around with nothing better to do. wink

Queenmarigold Tue 31-Jul-12 12:38:52

Hi Kinky, How's it going?

KinkyDorito Fri 03-Aug-12 14:04:21

Still hanging around! She's not too bad at the moment, just had monthly vincristine so we have the sickness/tiredness for a few days. It's her birthday on 16th so that's something we can all look forward to.

I'm just hoping we all have a smoother start to new term at school than last few months.

How are you? smile

Queenmarigold Wed 08-Aug-12 11:42:56

OK... ish.
Scan coming up so as usual am driving myself mental by reading too much into falls, grazes, won't eat certain things etc. It is torture of the kind only those who have been through it will understand, I don't know why I can't be more positive but I guess it's some kind of self-protection thing. Sort of.

Plus yet MORE time off work - have got to the point where I feel I just can't tell them sad - I'm just so high maintenance for an employe and that makes me so vulnerable.

We seem to have growth problems too, and starting school is making me really anxious. The damage cancer has done is visible facially, plus radiation has caused hair loss and cisplatin hearing loss, and I'm terrified of bullying. Also I'm terrified of my own reaction - an angry tigress has nothing on me when I'm fighting for a DC who's already had to fight so hard. I'd take a bully into my own hands I think and that's not good!

OhDoAdmitMrsDeVere Wed 08-Aug-12 18:10:06

Just popping in to say hello.
Want to wish you all the best and let you know I am thinking about your DCs and YOU.

minmooch Thu 09-Aug-12 18:39:19

Hi all. Sorry for absence - busy busy busy trying to sell and buy and move house.

My son is due to return to school on a phased basis. He wants to enter the 6th form with his peers. I too worry about bullying - not from his friends who all know the fight he has had - but I guess from any newcomers into his year. He too looks different now, op scars all over his head, patchy downy hair, in a wheelchair lots but walks very unsteady and a very weak side. He tends not to use his left arm, although he can use it but it just hangs by his side :-(. I will be staying at school with him until we are all happy that he is safe. Not really what a 16 year old wants, his mum at school with him, but no alternative at the moment.

He had his tri-weekly vincristine on Monday and sleepy too. But fingers crossed no sickness today so far - first day in months bless him.

After his op DS was on steroids. These have given him terrible stretch marks all over his back, bottom and legs. He does not seem bothered about them but wondered if any one elses child had these and used anything that was good? Although he is not bothered now he may be in the future.

Hope everyone is OK. I am tired and emotional all the time.

Queen I hope the scan gives you good results and hope. We have a big scan in October. Dreading it too. I am sorry you feel vulnerable at work but there is nothing you can do about needing to be with your child. Big hugs.

Big hugs all round to everyone on this hideous journey. May we all remain strong for our brave children.

Theglassishalffull Thu 09-Aug-12 21:05:42

Just returned from hospital the lad I work with has spent most of his summer in there. He made me cry (after I left) as he grabbed my keys and asked to go. He also grabbed his big bag the one with his clothes in and asked to told me and his mum bye whilst he walked off to the front door. He was well within himself and was happy to see me. I just think I was somebody different for his mum to chat to. He just smiles through it all though!!! Hope you are all ok?

KinkyDorito Sun 12-Aug-12 20:54:28

Queen I feel for you where going to school is concerned - I worry about bullying too. DD actually has lunch in SEN room as she is autistic, so struggled before the cancer with mixing. She has had nasty comments about no hair/short hair, as children are very ignorant at times. I have repeatedly told her this says more about them than her, but admit it is tough to hear sad. She is getting quite hard about it all now - I suppose it is the least of her worries sad sad. Perhaps send them in on steroid rage, then nobody will mess with them?! grin

min we have the stretch marks from hell here, all up her arms and across her chest where they are very visible. Steroids have given her 'toddler' arms - consultant's words - as she has laid down so much fat. She is also now clinically obese even though she eats very little - again, steroids have caused it. She doesn't want to go shopping and feels quite rubbish about it all. She turns 14 this week, so I understand how horrible it must be for her. Her autism means that looks have never been her priority, but even she is struggling with it all at the moment. If you find a solution to the marks, please share.

Hello to everyone else. smile

Queenmarigold Wed 15-Aug-12 10:33:00

cry with relief with me - scan was No Evidence of Disease!

I need some help sleeping - I have such bad insomnia now. Any tips from anyone? Im' only getting about 4 hours a night and I look like death.

KinkyDorito Wed 15-Aug-12 12:38:40

Queen that's brilliant! grin grin grin

Tablets would be the best option, though if you want to avoid chemicals try all usual - no caffeine a couple of hours before bed, milky drink, bath with lavendar bubbles? Personally, if the stress has done it, think a helping hand from tablets might be best for you. Sending love.

MsNobodyAgain Wed 15-Aug-12 12:49:53

What a relief Queenmarigold Sorry. No tips on beating insomnia. I have resigned myself to looking horrid for pretty much the rest of my life.

Very best wishes to everyone on this thread.

I just popped in to say it is the last day of home meds for my son. His last day of Methotrexate and Mercaptopurine. 3 years, 3 months - done. May the leukaemia never bloody return. Fingers crossed tight.

FarloRigel Wed 15-Aug-12 16:54:06

Raising a massive glass of wine for queen and msnobody! Congratulations to your little warriors, these little victories along the way are so very sweet.

Are you going to celebrate, msnobody? We thought we wouldn't but when the time we came had a sleepover for the friends who visited DD in hospital and had a cake made with 'no more chemo' on it. You should have seen the lady in the cake shop's face grin.

I use Kirkland Signature Sleep Aid tablets, I got them on Amazon or they sell them in Costco, but I need to take them early and usually only half a tablet or I'm still good for nothing the next morning.

MsNobodyAgain Wed 15-Aug-12 19:45:35

Thank you Farlo. Apologies for not knowing your story, btw. I will review this thread after posting.

We had a party this weekend after his last vinc injection and because it was also my DDs birthday. We had a massive cake from Costco iced to say happy b/day to DD, and congratulations to DS.

My sons carer has given him his last oral meds a few hours ago (he has a carer due to his other SN so I can get a break)

I kept his meds in a wicker basket on the kitchen counter top. I am going to burn that basket now - no joke. I hate it and that basket will NEVER grace my kitchen top again.

Again, best wishes to all who have a DC with cancer. I don't mean to be flippant, I'm just in turmoil. It's finally over. Thank God.

minmooch Thu 16-Aug-12 09:01:38

Massive congratulations to Queen and Msnobody. How wonderful for you both - I am crying tears of happiness for you both.

My son woke from a horrible dream last night, sobbing. He had dreamt that we were back at the hospital for his MRI (in real life is coming up in October) and his consultant told him he is going to die. He was sobbing hysterically, telling me he does not want to die. I stayed with him until he went back to sleep but when he woke this morning he burst into tears again

I've done the it's just a dream talk, told him dreams allow our fears to come out. But I'm terrified he's had a premonition and I can't stop crying (not in front of him).

The horror of this is all consuming :-(

MsNobodyAgain Thu 16-Aug-12 19:26:52

minmooch I absolutely understand that fear. Your poor son, what a horrid dream. Fingers well and truly crossed for you both in October. x

KinkyDorito Thu 16-Aug-12 22:08:49

How horrible for you and him, min. DD never expresses her fears, but she is asperger's. She wouldn't tell me dreams, even if they were like your son's. I wonder what goes on in her head. This whole thing is so scary and overwhelming for them.

DD is 14 today. smile
Can't wait for 15, as all this will be finished and we will be on our way home after a lovely fortnight in Florida. I will also be much thinner and looking fabulous grin.

Ms I'm really pleased for you all and I hope you get a chance to celebrate. I can't wait until we get there.

FarloRigel Sun 19-Aug-12 22:59:48

Oh, minmooch how horrible! I still go through phases of having recurrent nightmares about DD so I can only imagine how it must feel for him sad.

Belated Happy Birthday to your DD Kinky, I hope that the next year flies by and you have the holiday of your lives that you so deserve after all this!

Everyone, I am going to start a thread about Gold Ribbon Awareness Day ( and share our story, I'll post a link here and if anyone's interested in putting their tuppence worth on it please do so. Let's see if we can make this a big one in the UK. I always hope that one day gold will match the sea of pink for breast cancer awareness.

FarloRigel Mon 20-Aug-12 01:43:45

In the meantime would everyone like to pop over to this thread:

and sign a petition to try to stop the closure of the play room in the children's cancer ward in Glasgow, Scotland?

minmooch Wed 22-Aug-12 18:50:15

Have signed the petition xx

minmooch Wed 22-Aug-12 23:31:24

Just heard that one of the children we spent months in hospital with passed away 4 weeks ago. She was so vibrant ..... This world is so cruel ...... Oh god how sad :-( why children? It's so unfair? :-( :-(

FarloRigel Thu 23-Aug-12 00:20:40

I am so sorry minmooch. I wish I had the answers to those questions. DD's friend passed away at the start of the summer, she was amazing and I hate cancer's guts for taking her away. Thinking of you and of her family. thanks sad

KinkyDorito Sun 26-Aug-12 16:39:54

thanks minmooch. We lost so many recently. It is horrible. sad

I hope you are okay.

Queenmarigold Tue 28-Aug-12 14:13:41

Hi everyone, hope you're OK. Our recent test results were clear. Phew.

I heard a sad story though, in our hospital there was a 6 year old with advanced neuroblastoma, who had basically been abandoned in there by her parents, they were never there during the day nor to comfort her sobbing with pain in the night - the rest of the parents did their best to help.
Anyway she died recently, I was really sad. I bet her family weren't even there with her. The family had all sorts of other stuff going on - other children, social services involved et; so it wasn't deliberate abandonment but all the same they were crap for her.
I just feel quite down about it - what a poor little girl, what a sad sad life. No love, pain and hospital and hospital test; on her own. What a shame.

FarloRigel Tue 28-Aug-12 21:30:52

Hi Queen, I am so pleased grin to hear that the test results were clear!

Very sad to hear of the little one in your hospital. Neuroblastoma is such an evil thing, that is what took DD's friend too. Luckily DD's friend's parents were always incredibly devoted to her and she was rarely alone even for the shortest time. It is simply heartbreaking that any child would have to go through that torment alone. thanks to you and all the other parents who did what they could for her.

It is a very good point that you raise though, the incredible agonising pain that children with cancer go through. It is so humbling, what they have to put up with, and I do wonder could the medical teams not do more to control their pain levels? I remember DD screaming in pain many times and getting her adequate analgesia from the doctors was often a very difficult task and could take hours even whilst on the ward. What is everyone else's experience of this issue? I have often wondered if the fact that children cannot demand pain relief in the same way as adults leads to them going without more than an adult would do, even with us there to advocate for them.

KinkyDorito Tue 28-Aug-12 22:17:52

DD was on lots of morphine when she had neutropenic sepsis. She was in a lot of pain, even on that. She had a push button drip.

I'm really pleased results were clear Queen. How horrible about the little girl. It makes me feel sick that she was going through such a horrendous thing nearly alone. I'm surprised social workers weren't there for her more if parents were useless. As you say, what a life. I shall be thinking of her. So, so sad. sad

FarloWearsAGoldRibbon Fri 31-Aug-12 21:34:14

So sorry to hear about your DD's pain levels, Kinky, DD was on a morphine drip with a push button too, she called it "The Magic Button", bless her.

I can't get confirmation about when or if there will be a gold ribbon day this year, but have done a wee thread for childhood cancer/leukaemia awareness month here if anyone wants to put their tuppence in.


I hope you all have a very good weekend.

KinkyAllTooOrangeDorito Fri 31-Aug-12 22:21:52

Went on FB to put up orange ribbon, and found out another child from hospital has died who we knew very well. She was there when DD was first diagnosed and her mum was really kind to us as she was there just after we were told.

So gutted. This seems endless.

FarloWearsAGoldRibbon Fri 31-Aug-12 22:32:38

Oh, Kinky I am so sorry sad. Sending hugs and brew and thinking of that poor family. What a horrid, cruel world we have all found ourselves in. When I think back to the little things I used to take for granted, it seems hard to imagine.

minmooch Mon 03-Sep-12 03:53:36

So sorry Kinky it's so heartbreaking to hear of the little ones who don't make it :-(.

Big day for us today - dc returns to school after a year out. He's going into 6th Form with his peers for a phased return. It's going to be tricky with his wheelchair and disabilities so I am going in with him until we ate all happy he is safe.

Dc has also won an award for Inspirational Young Person. A big awards dinner in London tonight. Patron is Prince Harry and we get to meet him followed by dinner, awards ceremony and entertainment. It will be terribly emotional.

I move house on Tuesday. Am exhausted by all the packing, I'm not good in a mess and the house is unbearable. However new start for us without STBXH for which I am relieved. I don't have to face his coldness, meanness and complete inability to empathize with the situation.

I am so tired yet here I am awake at 3:50 am. Hey ho.

Much love to all.

KinkyAllTooOrangeDorito Mon 03-Sep-12 06:32:43

min I be thinking of your DS today. I'm sure he will be welcomed back and well looked after by both staff and students. It is very tough, seeing them go back in with peers, but he will be so much happier having a more normal life. Enjoy your dinner tonight - sounds brilliant! And the move. I think by the weekend you will need a nice, long lie down somewhere dark!! grin grin A new and better life. Love and luck for your new home xx

Back to work today and praying it goes more smoothly than my last year there.

FarloWearsAGoldRibbon Mon 03-Sep-12 09:44:29

I hope your DS's day in school goes great minmooch and everyone bends over backwards to make him feel welcome back and that he has a very well deserved, amazing and wonderful night tonight.

Queenmarigold Sun 09-Sep-12 21:58:24

Hi Farlo
Studies show that morphine mixed with ketamine are amore effective pain relief mix. They can go on the syringe driver, and it minimises the effects of morphone - constipation etc. Paracetamol can also be given if needed.
I would alsways ask for that mix again, in the future - it worked wonders for us.

ORANGEgiraffesCantWearGOLD Tue 11-Sep-12 02:04:44

thinking of you all

KinkyAllTooOrangeDorito Tue 11-Sep-12 16:36:03

Nipping in for a wave and hoping everyone is okay.

DD is doing her phased at 2 days a week. She's managed so far, although is looking a bit grey around the edges so I hope her counts hold up.

Just the 8 months of chemo still to go...

KinkyAllTooOrangeDorito Tue 11-Sep-12 16:36:38

phased return to school

Good luck Kinky and all others on this thread.

My DS has his first post treatment blood count in 12 days time. I know in my heart he will be fine. There is just a little tiny bit of me that thinks they will tell me he has the cancer back.

He's been fine. Just a few spots because he's withdrawing from the meds. It's a tad hard as he is a Special Needs child and cannot express to me how he is feeling.

Much love to all. x

KinkyAllTooOrangeDorito Wed 12-Sep-12 15:40:19

I know the SEN issues, it is very hard when they can't tell you.

I am sure you will be fine, but I will be thinking of you as I know it is still a worry.

Sending love.

FarloWearsAGoldRibbon Wed 12-Sep-12 22:20:40

Thank you Queen.

DD stood up in front of her class today with her gold ribbon on to talk about childhood cancer awareness day. Thinking of all of you today and your little heroes.

All the best with the blood test MsNobody. The first few off treatment I found very stressful too.

Queenmarigold Thu 13-Sep-12 12:48:29

Aww Farlo that's so brave of her.

Today I have heard of 2 who are succombing, one to leukaemia nd one to medulloblastoma. Life is so cruel sometimes.

KinkyAllTooOrangeDorito Thu 20-Sep-12 11:24:03

Bumping thread. Hoping, as always, no news is good news smile.

KinkyAllTooOrangeDorito Thu 20-Sep-12 11:27:55

I am trapped at home with sick DS. Managed 2 weeks at work before things started to go tits-up again. DD came home with some back/breathing pain, which rings alarm bells with me as last time it became pneumonia. They think it is 'just chemo'. It always is until it gets worse. And, let's face it, everything is chemo.

DD has now had to go off to her dad's to get her away from the sick bug. DH used the last of his holidays (he hasn't had a real day off this year - all of it has been sick cover) to stay off with DS for 2 days, but he's still not well so now I'm off.

I'm worried we are once again falling into the illness cycle. I am so fed up, tired, guilty about parenting, guilty about work, worried about everyone and everything. I have a permanent headache and could do with locking myself in a darkened room for a month or two.


Kinky massive hugs. It must be so hard trying to balance work and caring for DD. There is nothing you can do about an illness but you shouldn't feel guilty. I know you probably will because I feel guilty asking for help from my family. Like I'm a burden.

Our week has been awful. 5 hours in A&E yesterday with a chicken pox scare/possible post-chemo rash. No-one could tell me for sure what is wrong. It's like starting the cycle all over again "well, we think he's fine. Take him home". A proper wibble from me because it was his first blood count following ending chemo. He looks like a spotted leopard and I'm checking his temperature every hour. sad

KinkyAllTooOrangeDorito Thu 20-Sep-12 19:28:20

Oh no MsNobody that's awful. It's so worrying when they can't tell you what's up. I hope his temperature holds okay and it starts to clear up soon. The A&E can't have been much fun either sad.

Queenmarigold Sun 23-Sep-12 20:02:44

Bump. No illness here but endless anxiety about radiation and long term effects. Really really sick making anxiety, no one understands. I am so tired I go to sleep and wake up at 3 or 4 every night worrying. sadsadsad

KinkyAllTooOrangeDorito Sun 23-Sep-12 21:14:41

I'm sorry to hear that Queen. You need to go to GP or ring up one of the charities and have a chat with them about your fears. I think many of us will be suffering the anxiety and worry for years to come. sad

Queenmarigold Mon 24-Sep-12 10:10:04

I know. i can't get drugs as am pg. But I can't go on, I jsut feel so crap all the time and my LO is really really hard work at the moment, i think maybe hormone issues due to radiation but they won't test that for ages anyway. It's just so hard, all the time. Feeling v low today, sorry for moaning. sad

KinkyAllTooOrangeDorito Mon 24-Sep-12 17:23:15

Sending (very inadequate) hugs Queen. Try to be very, very gentle with yourself. I am happy to be moaned to if you need an ear. PM me x

toughday Tue 25-Sep-12 15:50:42

Hi everyone, I haven't been on as a while. DD had another clear scan in August so we can breathe again for another few months.

kinky hugs to you, I find that when they go back to school they pick everything up. We are all coughs and colds in this house now since being back at school sad

queen congratulations on your pregnancy. Take each day at a time, that's how i'm coping at the minute and if you need to rest, rest. Is there anyone that can have you LO for a few hours?

Big hugs to everyone else

minmooch Tue 25-Sep-12 18:13:04

Sorry ihave been absent. 11 months in and I still find it hard to accept I have a child with cancer. :-(

queen I am with you onthe anxiety :-( I awake in the night and listen out for his pump (fed at night( to make a noise. I kid myself that if he had died in his sleep the machine would somehow know and not keep pumping food into him :-( if he is still asleep when I go into him in the morning if he does not move I hold my breath until I can see he is still breathing. When I leave him in the classroom and sit in my car waiting for the lesson to end I imagine all sorts of terrible things happening to him. I constantly check his eyes to see if they ate both reacting the same, I look at the back of his head to see if I can see a build up of fluid. The fear and anxiety are endless. The exhaustion overwhelming. It's a wonder I am able to stand at the begin g and end of each day.

The life of a mother of a child with cancer is heartbreaking, every single second of every day, there is no let up and no timescale.

To each and everyone of us a thousand hugs and the strength to carry on.


KinkyAllTooOrangeDorito Sun 30-Sep-12 08:09:08

The life of a mother of a child with cancer is heartbreaking, every single second of every day, there is no let up and no timescale.

Absolutely. And yet, because we do not walk around weeping and asking why, because we just get on with it, people frequently forget what we are going through. I could do with your words printing on a t-shirt to remind some people that we do well to just get out of bed on a morning, let alone the countless other things still expected of us.

I'm having a big sigh weekend. So much housework, so much work work. I really just want a couple of days to myself, in a tidy house with nothing to worry about.

Fat chance.

At least DD is okay, although they finally started taking blood off her to try to bring down her iron levels. LP in 10 days, so it is a super big chemo month, right as infections seem to become more likely. I just hope she manages to keep her counts up through winter. Really don't want to end up signed off like last year - I don't think my nerves could take the pressure.

Onwards. Ever onwards. When this is all over, we should all meet up and get very, very drunk.

KinkyAllTooOrangeDorito Sun 30-Sep-12 08:10:30

20 months down. 7 to go.

KinkyAllTooOrangeDorito Sun 30-Sep-12 08:11:04

In fact, it's 21.

minmooch Sun 30-Sep-12 09:19:02

Kinky - my counsellor said that the only way to get through this is to enjoy any moment of normality we can. Our lives are no longer normal and we need to remind ourselves occasionally that there was a 'normal'.

I went to a party last night, didn't enjoy it, too tired and too noisy (I feel like I have a touch of agoraphobia these days) and had to listen to a woman complain about her frozen shoulder and the successful outcome of her painful op - I found myself wanting to punch her and tell her she had no idea how lucky she was. Then another woman kept wanting to ask me about Will, kept on telling me she couldn't imagine how terrible my life is - yeah I know - but she kept on saying it and I wanted to punch her too! I used to love dancing but felt sad that on the dancefloor last night I felt that my body had forgotten how to dance - does that sound ridiculous?

Kinky I hope your daughter's counts stay high. It's such a worry. Will is back at school, part time. I spend most days taking him to registration (if it's an early class)taking him to his classroom and them waiting in the car to collect him after a class. He is only doing 2 A levels now to hopefully give him a chance of coping. He is horribly tired and just picked up a cold. It now amazes me how others can dismiss a cold but it has sent me into a panic for him. He's at his Dad's and I want to know that he is taking his temperature (but can't nag him!).

I went to my other son's school for a parents evening. Saw a lady I hadn't seen since Will had been diagnosed. She came and gave me a hug but mid- hug told me she had just had shingles - I nearly through her across the room and was furious she had hugged me (she was over shingles but that did not matter to me).

I am rambling now and need to get started with the day ........

minmooch Sun 30-Sep-12 09:27:34

Oh and I wanted to punch my mother too yesterday! We were talking about Will's MRI scan due in a couple of weeks. I am terrified of it, the results, how we will cope if they are bad, what the drs will say to Will etc. She came out with a Mothers love is very powerful and has the ability to change outcomes. I told her it didnt otherwise no Mother would lose a child to this, or any other disease. I said saying things like that means that if Will does die from this then I haven't loved him enough. A Mothers love can only affect how your child copes with the fight. As much as I would like to believe that the strength of my love could destroy his tumour I dont believe medically it can.

Did I read my mother's words wrong?

KinkyAllTooOrangeDorito Sun 30-Sep-12 13:18:36

Your mum doesn't know what to say to you. Nobody does as they cannot possibly know unless they walk in your shoes. She is scared too, but dare not say it as she will be being strong for you - I think she is probably hoping her love will change it for you both, but without telling you that. It is terrifying, lonely path we tread, and I can completely relate to you not feeling you can dance anymore. Hopefully, as time passes we will all find a bit more joy in the world again. But that is very difficult to do whilst you feel so cheated by it, if that makes sense?

You are more than welcome to vent to me whenever you need to.

I am feeling very weepy today. I don't normally cry, but I'm under a bit of pressure at the mo and I feel quite sorry for myself. Listened to this, whilst I was peeling veg for lunch, and it has ruined me!! I am in a right state now, I think it makes me think of all of those we have lost this year and their poor parents.

A fitting close to childhood cancer awareness month I think.

Sending much love to you and your DS, minmooch. We keep on keeping on as there is nothing else we can do.

KinkyAllTooOrangeDorito Sun 30-Sep-12 13:40:56

I hope that I didn't sound like I was dismissing you being cross about the 'enough mother's love' thing - I hate things like that, as I hate the whole 'fight' metaphor used for cancer. Because it does suggest that if they die, we haven't loved enough, or fought enough. But people cling to things like metaphors and cliche because they don't know what to say. It is so incredibly hard.

Trazzletoes Tue 02-Oct-12 12:21:02

Hi, please can I join? I've been signposted here... My beautiful DS is 3. He was referred to hospital yesterday and, a CT scan later, it looks like there are 3? Tumours on his brain. Likely to be secondary from his abdomen, probably liver. He's having an ultrasound with DH right now. I don't know what to do with myself. I can't stop crying.