Children with cancer

[KinkyDoritoWithFairyLightsOn]

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.

[KinkyDoritoWithFairyLightsOn]

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

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 .

Did/does anyone else work before/during treatment?

[BustersOfDoom]

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 . 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.

Petition

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

Candlelighters

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

[toughday]

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 , so much needs to be done to raise awareness

[BustersOfDoom]

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]

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]

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 :) 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]

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

[KinkyDoritoWithFairyLightsOn]

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.

[toughday]

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

[OhDoAdmitMrsDeVere]

Is it ok if I lurk a bit?

[CURIOUSPARENT]

OhDo - welcome :)

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 :)

[Stinkyfeet]

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 .

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

[KinkyDoritoWithFairyLightsOn]

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

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]

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

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]

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]

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]

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]

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

[toughday]

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]

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]

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]

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]

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]

Sorry should have been tough re upcoming scan

[FriskyMare]

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