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Children with Cancer

(833 Posts)
Twunk Tue 03-Sep-13 18:04:08

Sadly we need a second thread :-(

My son Alex was diagnosed with ALL (Leukaemia) in July and we are making our way though the 2 years of treatment that are given here in the Netherlands.

If you want support, or wish to share your story, or can give support please do join us.

It's a shitty journey but together we'll get through it.

Nocakeformeplease Tue 03-Sep-13 19:48:17

Thanks for the new thread Twunk. Lovely to hear what a a you've all had and especially that Alex is on good form.

In answer to your question about post op treatment, we will find out for certain a week Friday (13th!) when they have had all the histology back and met to discuss his plan but it will most likely be 6-9 months of chemo and most likely a course of radiotherapy.

Thanks for the supportive messages. I am pleased they got most of it out Inbuckle I just wish I could accept what the surgeon said but I am obsessing about the bit they couldn't remove and what happens if the chemo doesn't get rid of it. To tell you the truth I am really struggling. I feel like I did in the beginning, very tearful and frightened and extremely angry. I can't bear that my little boy has to go through this when he should be at home getting ready for his first day at school. And I'm terrified beyond belief that we might go through all this and it still won't work. I don't think I could go on without him. I'm just not strong enough for this anymore.

I'm sorry for the pity party, I really will try and snap out of it.

Minmooch it must be desperately hard waiting for the scan results. I'm thinking of you and hoping and praying that the results are positive. Much love x

Nocakeformeplease Tue 03-Sep-13 19:49:40

Sorry for all the typos, on my phone

minmooch Tue 03-Sep-13 19:54:04

Signing in here - my Ds 17 years old) was diagnosed in Nov 2011 with high risk aggressive medullablastoma (brain tumour). He has had 11 hour surgery, 6 rounds of intensive chemi, 5 weeks if double daily radiotherapy, 54 weeks if maintenance chemo. He survived all that but so did the remaining tumour and he is now on Temozolomide, as palliative care.

Scan results came back today and tumour has neither shrunk not grown so chemo doing its job at the moment and tumour stable. Another scan in 3 months.

Hello hello to everyone. Now that's over I hope to be more supportive.

Twunk Tue 03-Sep-13 20:53:17

It's a buggery bollocky stressful time Nocake that's why you're stressed and miserable.

I have found (in the 5 weeks I've had to get used to it) that any "event" makes me much much worse. Everything comes to a head and I'm so much more anxious, jittery and generally a mess.

It's been the build-up, the scary hours yesterday and now the results etc - be easy on yourself because OF COURSE you are feeling this.

((((((Hug)))))) unmnetty or not.

Minmooch I'm relieved to hear the scan results were not showing a growth. I hope the next few months are a bit calmer for you and DS.

unbuckle Wed 04-Sep-13 09:22:27

Signing in here. My baby son has a ct scan today under general to plan surgery for bilateral wilms tumour.

Twunk Wed 04-Sep-13 17:07:33

How did it go unbuckle?

unbuckle Wed 04-Sep-13 19:16:02

He's fine and home now, thanks for asking. Results friday.

Twunk Wed 04-Sep-13 22:30:25

A horrid wait, I hope it doesn't feel too much like forever xxx

unbuckle Thu 05-Sep-13 09:28:41

I think i will find friday hard, i'm at work today so have my game face on. I deal with drs really badly, and i can't bear people trying to break things to me gently, it makes me incredibly anxious. And i always feel like i'm being spoken to like they expect me to not understand - last time i saw a consultant she repeatedly corrected herself from saying 5% to '5 in every hundred'. Little thing i know, but when i am stressed and anxious, talking to me like i don't understand either basic english or basic mathematical concepts seems to magnify it all!

Twunk Thu 05-Sep-13 22:24:24

Wish I had a game face, I tend to wear my heart on my sleeve.

You're doing really well. Let us know how you get on, will be thinking of you.

I hope DS is recovering well Nocake. And I hope you're having a peaceful time minmooch xx

unbuckle Fri 06-Sep-13 16:31:39

Well, that didn't go so well. His tumour is no longer responding to chemotherapy. They are investigating whether it is actually now growing. So, he's going on an extra drug (doxyrubicin) which sounds more like how you expect chemo to be - given over hours, makes you sick, gives you ulcers. And it turns out i was misunderstanding the scale of his disease and seeing positives where actually there were negatives. Not a great appointment.

Saw the psychologist too - beforehand- that went well actually, i'll probably do it again.

Twunk Fri 06-Sep-13 17:39:26

((Unbuckle)) I am sorry it wasn't great news. Alex's chemo is like that but actually his side effects are really very much under control and not like I was expecting at all - no nausea or vomiting, no constipation (yet). He's tired and his legs ache but we can cope with that. When is the next scan or have they not got that far yet?

Big big hugs coming to you x

Nocakeformeplease Fri 06-Sep-13 22:21:15

Didn't sign it last time so - DS (4) was diagnosed with a Stage IV Wilms (kidney) tumour 12 weeks ago. He has had a course of pre OP chemo to reduce the tumour and this week underwent surgery to remove it. We will find out what the post op treatment plan is next Friday but its likely to consist of 6-9 months of chemo and radiotherapy.

Sorry I haven't been around. It's been a very stressful week. DS seemed fine after the op but the following evening started bringing up large volumes of green bile. The next day he started getting cramping pains that just got worse and worse and by then was producing ridiculous amounts of this vile bile. the poor little mite didn't sleep for 3 nights and was crying out in pain most if the time. It turns out part of his bowel had got pushed inside itself and was causing an obstruction and he had to go down for further surgery this morning. Oh and he also has a chest infection.

This week has absolutely broken my heart. I just can't bear to see him in so much pain and I am absolutely raging that he (and all our babies) have to go through this. It's so bloody unfair. And I know it's pointless thinking like this but I can't seem to pull myself together at the moment. Fortunately he seems much more settled since the second OP so that is something.

Minmooch - I'm very glad to hear that the scans show the chemos is keeping the tumour stable. I can't imagine how stressful waiting forvthosecresults must have been. I hope you and your DS's have a nice relaxing weekend

Hi Twunk - how is Alex getting on? Did DS1 enjoy his first day back at school?

Unbuckle - I'm sorry too it wasn't better news today. However DS treatment plan included two doses of doxorubicin and in my limited knowledge of chemos, this is a kick ass one so fingers crossed it hits the tumour hard. DS did suffer with it the first time (sickness, stomach cramps etc) but the other time he had it he was absolutely fine. Will surgery still go ahead as planned or does it depend on the results of the next scan? I often worry I am trying to find positives that aren't there. It's bloody exhausting isn't it.

unbuckle Fri 06-Sep-13 23:31:00

Oh nocake, what a horrendous week, and you are amazing to have offered me reassurance on the chemo when your ds is going through so much. I had imagined somehow that after surgery their organs would move back into place where the tumour had been iyswim. Hope he gets some rest tonight and continues to be more comfortable.

minmooch Sat 07-Sep-13 08:42:55

Unbuckle I'm so sorry your appointment did not go well. Sometimes it takes a while to be ready to really hear what is being said. Over the last nearly two years I have found it is a way of coping - sometimes I hear the positives (real or hoped for) and then I hear the reality. I hope the next dose of chemo starts reducing the tumour with few side effects.

Nocake what a horrible time you are having. It is devastating to see our children in pain. I hope that your DS is much more comfortable now. Anger is very much part of this journey - I get angry that I can't do this for my son.

Twunk how's Alex? And you? Hope you are having some good days.

As for us DS went back for L6th induction day but threw up everywhere (first time so visibly at school in all this time) so we went home :-(. The following day at school he got himself in a right state as he had diarrhoea :-( luckily made it to the disabled loo but in trying to remove his clothes got it everywhere :-( his mobility and dexterity are no good anymore after surgery. I had only popped outside to the car for two minutes :-(. He called me and luckily I had taken a spare school track suit in my car so cleaned him up, got him changed and took him home :-( he is now very depressed that he can't help himself in these situations - and very undignifying for him. He hasn't been back to school as I am sure he is worried about it. Hopefully I can get him back in for Monday before more chemo on Tuesday.

i hate what cancer has done to my child - he is having to cope with too much. I am a single parent and find it all so overwhelming at times. And yet when the boys go to their Dad's I don't know what to do with myself - I don't really exist anymore as a person in my own right.

Twunk Sat 07-Sep-13 14:42:37

Goodness what a week Nocake

You must have been so worried sad and to be out through a GA twice is no fun for anyone.

I have made contact with a charity who offer free counseling over the phone. Tbh I don't particularly feel in need of it at the moment, but thought it better I can talk to someone about the things that keep me from sleeping. Have you thought of doing the same?

I hope he feels much better now and can go home soon xxxx

We've just finished the first week of consolidation. 5 trips to hospital and daily oral chemo. Tuesday he has a lumbar puncture I am dreading, and will probably need a blood transfusion. Oh and he needs an X-ray and possibly an MRI on his leg as he complains of pain behind his knee.

Stinkyfeet Sat 07-Sep-13 19:43:22

So I'm back. It's back. Fucking bastard cancer.

Twunk, Nocakes, Unbuckle - so sorry to read your stories.

Min - dreadfully sorry things are no better for you all.

Almost exactly 2 yrs ago ds1 was diagnosed with medullablastoma. His tumour was completely removed, he had 6 weeks of radiotherapy and 8 cycles of chemo. Sailed through the treatment with barely any side effects and no infections. Treatment finished in November 2012. He was recovering, putting on weight, getting stronger all the time.

Then, bam. Routine scan in July showed 2 small tumours in his spine. So he's back on chemo. Prognosis is not good apparently - what exactly "not good" means, I haven't the strength to find out.

He's the picture of health right now - doing everything a 10 yr old should be, so we're enjoying life as much as possible.

Can't believe it's happening. It's harder than the original diagnosis I think - everyone was so positive then. This time - not so much.

Twunk Sat 07-Sep-13 19:50:12

Stinky I am unutterably sorry that you have to join us. Fucking bastard cancer.

unbuckle Sat 07-Sep-13 20:15:13

Stinky, so sorry you are with us. This disease makes me so unutterably angry i can barely think of it. Fucking bastard hardly touches it.

wokeupwithasmile Sat 07-Sep-13 20:57:29

I just came across this thread by chance and tonight you are all in my heart.

Stinkyfeet Sat 07-Sep-13 21:05:32

Thanks Twunk and unbuckle - I was never that great at updating on the old thread, but I've a feeling I'm going to needthis one a lot more.

Thanks for your thoughts wokeup.

minmooch Sat 07-Sep-13 21:18:20

Stinky I'm so so sorry you are back here with us. There are no words to describe the utter unfairness of this. To have gone through all that, been clear and for it to come back is horrifying. My son has yet to be clear of his tumour so we have never reached that remission time - I can imagine that this is harder than the first diagnosis. My thoughts are with you and your family - you will find the strength, as you did before xxxx

Fucking bastard cancer.

Lilyloo Sat 07-Sep-13 21:22:38

I am so sorry (I know it sounds so trivial) hate hate hate cancer , just so unspeakably shit.

Twunk Sat 07-Sep-13 23:13:56

Minmooch I'm sorry I missed your post before - for some reason it wasn't showing on my phone. Your poor DS, it's so sad for him but you sound like such a wonderful mum. I totally get you on the identity thing - already I feel that my identity is now "mother of boy with leukaemia". We were (a little half-heartedly) trying for another baby. I can't see that happening now.

Fucking bastard cancer.

DianaTrent Sun 08-Sep-13 12:46:29

Signing in to say hello to everyone on the new thread.

I'm so sorry you're going through this again, Stinky. That is so unspeakably crap. Everything crossed for your DS.

Really sorry your DS didn't have a better start to the year, min, I'm really glad the scans show things to be at least stable, though.

Good luck with the doxorubicin, unbuckle, I hope it works wonders. DD had that a couple of times for her leukaemia. She thought the red wee afterwards was the most exciting thing ever and told everyone with the kind of enthusiasm usually reserved for those who have seen something more like a unicorn smile. Their tears go red sometimes too so don't get a shock if that happens, it's normal. Some of our friends on the ward were really freaked out when it happened to their DD as nobody had warned them in advance.

Sorry to hear your DS is so miserable, nocake. I hope things will improve massively for him very soon.

Twunk I posted on your other thread, but I just wanted to say here that some friends of ours had another baby whilst their DD was in treatment and although it was incredibly hard for them juggling the demands of a newborn with prolonged hospital stays, it was actually fantastic for their DD who was in treatment who was completely over the moon about her new baby sister and it gave her a massive boost and brought her so much joy. We personally decided to wait until DD's treatment was over before trying again and now we're struggling to conceive and I bloody wish I'd gone for it at the time. You'll know your own situation and feelings, but don't give up on it if it's really important to you. It all seems so overwhelming at this stage but you'll be amazed how much you will adapt and adjust to dealing with the treatment once you get into maintenance and you find your feet with it all.

DD is doing well, just started her third year at school. She's still struggling a lot with her reading and writing but that year of physiotherapy last year has made a massive difference and she is able to participate in so much more and came 4th in a race at sports day in the summer - such a far cry from the child who came home weeping the year before that she had come last in absolutely everything. The abdominal pain continues, but she's coping with it. She is excelling in maths and is very popular in her year now despite starting school as a steroid fuelled monster child. DH is recovering well after his surgery for the brain tumour and his pain is starting to ease, finally, too.

unbuckle Mon 09-Sep-13 09:23:06

I didn't know about the red wee and tears, thanks for that, it would have been alarming! Are your dd and dh still in treatment or is the pain a long term side effect? It is great to hear from someone coming out of the other side.

Nocake,any news on the histology yet? Keeping everything crossed for you for a good result.

Twunk Mon 09-Sep-13 09:28:57

I talked to DH last night and he said we can still try - just leave it a few months (tick tock tick tock). So I will be 39.

Is Doxorubicin the same as Daunorubicin? I could just google. Alex has had it as they have it in induction for Leukaemia here and he had slightly cloudy wee but nothing too alarming.

Goodness DianaTrent what a time you've had. You must feel like a nurse.

Thinking of all of you.

Nocakeformeplease Mon 09-Sep-13 10:39:53

Minmooch - your poor poor DS sad. After everything he's been through it is so fucking unfair that he didn't even get a glance to enjoy settling back in at sixth form. I hope he is okay and felt able to go back in today.

Stinky - I am so so sorry to that you are back with us. So bloody awful and unfair just as he was doing so well.

DianaTrent - it's lovely to hear how well your DD is doing. You mst have had one hell of a difficult couple if years. I'm really glad to hear your DH pain is reducucing.

Twunk - hope you are all doing okay . I hoe the LP tomorrow goes okay and is not too uncomfortable for Alex. That's good news that DH is still keen to try for no 3 - Its horrible the pressure this bloody disease puts on every area of our lives though isn't it.

Unbuckle - how are you feeling? Does I have to go back for a rescan? Thinking of you.

DS seems a bit chirpier today and they said he can try something to eat later smile. He still seems to be producing a lot of bile though which is a bit worrying as that's is what happened after the first op but he doesn't seem to be in pain like last time so fingers crossed it is just taking his stomach a bit longer to settle down. They meet every Thursday to discuss cases - the oncologist said it was possible they would have the histology back by last Thurs but that they prefer to wait until they have all the information and the full treatment plan so it will most likely not be until our appointment at the marsden this Friday. It makes me feel sick whenever I see the oncologist to think he may already know about DS results and its tempting to ask him but I really do want to try and wait until we see the consulant who will have all his information in front of her if that makes sense.

unbuckle Mon 09-Sep-13 13:37:35

I know what you mean about the feeling the oncologist already knows. We won't have another scan for a month. Who knows what is going on inside our kids?

Twunk Mon 09-Sep-13 19:31:21

I physically shake when I see the doctor. When I first got the news I actually threw up (and I'm not much of a chucker). I can understand why people avoid doctors for the rest of their lives!

We had the MRD (Minimal Residual Disease - essentially what minute numbers of blasts are left in the bone marrow) 2 weeks ago and won't get the results until the next one at the end of consolidation. Consultant says she doesn't know, but I don't know whether that is true or not.

Stinkyfeet Tue 10-Sep-13 21:53:00

Thanks everyone for your kind words. Things are going well here; ds1 has been back on chemo for nearly 6 weeks and has yet to suffer any side effects. No hair loss and bloods all fine. You'd think I'd be happy, but it just makes me worry that the chemo isn't doing its job. Can't win really.

minmooch Tue 10-Sep-13 22:38:47

What chemo is he on Stinky? My DS is now on Temozolomide. He has not lost his hair although it is definitely thinner. He has been sick but he has been sick throughout treatment - at the moment he has just had 8 days of no vomiting but chemo tablets tonight could put an end to that run. It's the first clear week throughout treatment. It's such a hard one as I worry too when he is well that chemo is not doing enough. You are right - you can't win. Xxx

I would never catch the eye of DS consultant after scans and normally had to wait 2 weeks. It's very difficult to not to try and read the way they are looking at you. Fingers tightly crossed for everyone waiting for results xxx

unbuckle Tue 10-Sep-13 23:00:46

Well, i started the new chemo today. I wasn't therehmm, happens to also be my older son's last day before starting school. No red wee yet....

minmooch Tue 10-Sep-13 23:24:07

Fingers crossed Unbuckle that I sails through this part of treatment. It's very hard when you have other children who deserve to have a normal, happy, healthy life too. My ill DS is 17 and my healthy DS is 16 they should both be doing very similar things :-( my youngest is wracked with guilt that he's getting to do things his elder brother isn't. I feel sad for both my boys.

Twunk Wed 11-Sep-13 10:40:38

My sons are also a year apart minmooch. DS1's rude health is a stark reminder of Alex's illness.

Stinkyfeet Wed 11-Sep-13 11:59:27

He's on etoposide and cyclophosphamide. And to be realistic, it was the radiotherapy that made his hair fall out last time - it started to grow back when he was on chemo! I think I'm just being paranoid.

Hope the new chemo goes well unbuckle

Twunk Wed 11-Sep-13 13:27:21

Alex's hair has just started falling out. Was beginning to think we'd got away with it too. I nearly cried when I realised today.

Stinkyfeet Wed 11-Sep-13 13:54:25

The hair loss symbolises so much I think. Are you able to cut it short? Ds1 had a no 1 all over when it started to fall out last time - he hated waking up with it all over his pillow.

unbuckle Wed 11-Sep-13 14:27:19

Isaac is a twin. At least they are not identical. Quite a lot of tears last night but no other obvious ill effects. He still has hair, although chunks are coming out. twunk, i'm sorry to hear Alex's is going, it symbolises the condition.

Hope everyone is coping ok with the new school term.

Nocake, are you still in hospital? Hope things are getting more manageable.

Twunk Wed 11-Sep-13 16:49:51

It was pretty long (see photos) but is now about an inch long. I can easily cut it shorter and will give him a buzz cut once it starts really getting going.

Gosh unbuckle such a lot for you to do! Twins then all this on top. It must be exhausting at times.

minmooch Sat 14-Sep-13 00:14:33

The floodgates have opened tonight and I can't stop crying. The boys are with their Dad so it's just me and the dog. I don't want my son to die :-( I can't bear the thought that he will be on his own if he dies, I won't be there with him. I love him so much. I haven't cried for ages, felt slightly numb for a while, felt like I've been speaking about a child that's not mine, a mothers pain that's not me. But it is my child, it is me.

unbuckle Sat 14-Sep-13 12:30:05

I don't know what to say, min. I have tears just reading it. I hope you have someone with you now.

DianaTrent Sat 14-Sep-13 14:27:59

unbuckle my DD finished her treatment almost two years ago now. She was high risk on her MRD so we just have to hope that's it all over. DH had the whole tumour removed a year ago this month. He is getting no further treatment, only yearly scans at this point (it was benign, but was life-threatening due to proximity to and compression of the top of the brainstem). Their pain is a long term side effect for both of them.

Yes, Twunk, I definitely have - I do work in healthcare (not nursing though) so it's been something of a busman's holiday, all this. Doxorubicin and Daunorubicin are very closely related, but they are not exactly the same. Sorry about the hair, I remember that feeling so well. On a practical level, if you can get hold of a pile of the sticky rollers for pet hair, I found it really helped to have one always to hand whenever DD's hair was falling out to roller all the moultings off whatever bit of the pillow she wasn't lying on when she was taking a nap so it wasn't so tickly on her face and off her shoulders when they got furry. When it's all gone, you can try to make the best of it by having some fun with facepaints. DD absolutely loved having things like blue hair, mouse ears or butterflies painted onto her bald head, daft wee sausage that she is. I bought some electric blue and silver eyeliners with glitter in too to make sparkly bits on painted-on crowns.

(((min))). I'm so sorry. Thoughts very much with you and your DS. I hope the weather is nice where you are today and you can get outdoors and go for a walk or do something to give yourself a boost or even just a change of scenery. What the universe is expecting of you is so far beyond reasonable there are no bloody words.

flowers to you all.

Twunk Sun 15-Sep-13 19:32:47

(((Minmooch)))

No words. Just thinking of you. I hope you have lots of support. You must ask people if you need help with practical things. I hope you have someone to talk to, as well as coming here.

Twunk Sun 15-Sep-13 19:35:01

I love the idea of face paints! Not sure Alex will though as he hates getting pen etc on him. I would enjoy expressing myself through the medium though. grin

I've cut his hair short and tbh I'm not finding massive amounts of hair anywhere. Yet...

Trazzletoes Tue 17-Sep-13 10:44:09

Hi there, just signing in. Sorry it's been so long. I just don't feel like I have the time or the energy to do anything anymore.

I'm so sorry that you all are having such a tough time of it. min massive hugs. Your DS won't be alone. Ever. No matter what. He will always be in your heart and you will always be in his.

My 4yo DS, Joseph, was diagnosed with stage 4 high risk neuroblastoma last October. He's finished the active treatment and is now on immunotherapy in the hope that his body will recognise the cancer if/when it comes back.

In April he relapsed, but then spontaneously un-relapsed within a couple of weeks. We feel incredibly lucky but at the same time we are unsure what it means for his future.

Me, I've had enough of all this. I don't know how I can carry on even as we near the end of treatment, which seems so ridiculous. I've had a row with drs and nurses at 2am this morning because they weren't listening to me. They subsequently have treated Joseph without my consent but I just don't have the energy to argue anymore.

I feel like I might need some medical help myself to get through this, but then it seems silly when we are so close to the end (83 more days if no more delays)

unbuckle Tue 17-Sep-13 11:32:38

Hi trazzletoes. I always have huge rows with doctors too, not sure if that is any comfort but i suspect it will be them, not you- being in hospital is so dehumanising and as a parent i tend to feel like i don't even have a name... Perhaps you're right to seek help yourself, as even when treatment is over there is a lot to come to terms with either way. I have seen the psychological support team and found it helpful. Fingers crossed for you that the unrelapsed stays unrelapsed.

I meant to post before, someone - nocake?- mentioned finances and applying for DLA. Our claim for DLA was accepted at the highest rate (we don't get the mobility piece as he is a baby) on the grounds of him needing personal care more than once or for a prolonged period at night, so my experience is it is worth going through the horrible depressing forms. Or preferably getting someone else to do it.

Twunk Tue 17-Sep-13 13:10:56

I don't think we have such a thing as DLA here - wish we did as hospital etc is expensive. I am fortunate though as our financial position has not changed, other than running a second car.

Trazzletoes - I agree it's surprisingly dehumanizing being the parent. I've been told by medical people I "must look after" myself. Hmmmmm...the hospital provides me with no breakfast though both the hospital and insurance companies rely upon me being there all night and all day to care for my child. I have no problem getting lunch and dinner but there is often a lot of treatment and activity in the morning and a couple of slices of bread with some jam would be pretty helpful. //rant over

I don't think that our brains cope very well with sustained stress and sometimes it's much worse after the cause of the stress has gone. It wouldn't surprise me if any of us needed extra help getting through the last few weeks or months of treatment and a while after.

A therapist I've been in touch with has recommended something called "mindfulness" - I've not read much about it, but it seems like a version of CBT with a bit of woo thrown in. Might give it a go.

We're in the middle of a very intensive part of treatment right now - daily oral chemo, plus cytrabine 4 days in a row. Alex needs a blood transfusion tomorrow too. He has an ulcer in his mouth and his tummy hurts a lot. Feel awful about what he's going through sad.

minmooch Tue 17-Sep-13 13:55:23

Hi everyone. I'm still shattered from my emotional release - more yesterday as well. It has been discovered that my family has a faulty gene that is linked to the bowel, ovarian and brain cancer in our family. I went to pick up my results yesterday. I have tested negative for the faulty gene. It means my DS brain tumour is just other bad luck rather than my dodgy genes. It means my other DS is at no more risk than the general public. Kept crying yesterday with relief for my youngest and sadness for my oldest.

Trazzles are you on any antidepressants? I have them to help with anxiety. I have little energy for most things now. I can't remember the last time I ever felt refreshed. The times I am leaping around feels more like mania than energy - it's all exhausting and feels never ending. No advice on that one as two years in I haven't found a way of dealing with this. I have no time nor energy to arrange counselling. Much love. Xxx

Twunk so sorry that Alex is suffering. I hope Drs are keeping an eye on the mouth ulcer as this can be indicative of mucositus - where they have ulcers starting in their mouth and all the way through their digestive system and all the way out. My DS was very poorly with this.

Much love and strength to everyone xxxxx

hazlinh Wed 18-Sep-13 17:45:59

Hi everyone, signing in after a long time of being away. Things are moving very fast for DD 9 who has high-risk secondary AML. She had ALL when she was 5. Was in remission for a year and a bit before diagnosed with AML in May. It was a huge blow for us. The first time was awful. But the second time was a million times worse.

She was enrolled in a clinical trial and received clofarabine. Also some cytarabine and daunorubicin later (it made her wee go pinkish red), and then thioguanine as we searched for donors for her bone marrow.

After some false starts (we found four potential matches but they were unavailable or declined) they found a matching cord blood fr a baby in the US!

We also went through unnecessary stress and fears of delays thanks to our insurance who dragged their feet to approve the cost of the transplant potentially jeopardising the life of a little girl, we are on track and DD has started conditioning for the transplant! We are excited and nervous and anxious. The transplant is on 27 Sept. Today is Day -9.

The docs say this is the easy part. The worst will come after the transplant where she is at risk of Graft Vs Host Disease and could get really sick. She has to shower daily even though she hates it cos she has a Hickman Line. And she has to use two tyes of mouthwash several times a day to reduce the risk of mucositis.

And of course there are worse scenarios...

I do hope we are doing the right thing for her...

Am worried about her also as she is having more and more mood swings lately...she has been shouting at the doctors and nurses every day. she is probably nervous about the transplant but does not want to talk.

Wishing everyone lots of love

Twunk Wed 18-Sep-13 19:02:13

I'm sorry I wrote a long message last night and didn't realise it had not posted.

Hazlinh I'm quite certain it is just stress for the transplant etc, though could also be hormones as she is getting to that age? I expect she's trying to have some control over her situation. Is there anyone she can talk to? My situation is different as Alex is 4 and doesn't really understand what is going on.

Amazing that cord blood is available! Let us hope it is accepted and you don't get the complications they are warning you about. I have everything crossed.

Having been through the first diagnosis myself, I can only imagine the pain of hearing those words. What a horrible time you have had. I'm scared to ask how common this is, but I am quite sure it was a total bombshell ((((()))))

Bastard bastard cancer.

Thanks for the heads up re mucusitis (something I didn't know existed but then why would I?). The ulcer is much better today. He had cytrabine and red blood cells today. Another tedious visit. Boredom combined with terrible worry - the life of a parent of a child with cancer.

It's no life really. I look at photos taken 6 months ago and feel jealous of the person I was then! Worried about getting the guttering and the kitchen done. Couldn't care less about them now.

Twunk Wed 18-Sep-13 19:04:24

Min - pleased to hear that you don't carry the gene. That must be a huge relief.

I'm on 10mg paroxetine at the moment which is a low dose. Don't want to increase it as I want to have another baby and coming off is such a chore as it is. It keeps the worst at bay, but doesn't stop the night fears.

InSpaceNooneCanHearYouScream Wed 18-Sep-13 19:28:26

Twunk and trazzletoes- I take 40mg fluoxetine a day for my horrible anxiety. It helps enormously, really, it is life changing. I can cope with things now! But the starting dose of 20mg didn't help me at all- so they doubled the dose and it has been really effective. Please don't battle on without help!

hazlinh Thu 19-Sep-13 03:45:32

Twunk, yes I think she is just trying to have some control over her life. She gets angry when the docs and nurses come in and disturb her when she is watching videos or reading... We are being treated in Singapore, as DH works here, and they have a wonderful charity called the Childrens Cancer Foundation and they have a social worker for each child. I spoke to our social worker and she came yesterday to have a bit of a friendly chat with dd, and she says she will try to organise some art therapy, it might help dd express herself through art...they also have play therapy but dd was not in the mood yesterday and refused a game of pictureka which she normally enjoys.

I do hope that everything goes well for you. ALL supposedly has a cure rate of 90-95% these days. We honestly thought dd was cured for good as her doc kept saying that. he was so sure. esp since she was standard risk and did not have any complications. well I suppose somebody has to fall in that 5-10% unfavourable statistic. and one of them was dd.

yes I didn't know mucositis existed either! oh my god yes tedium plus worry. that's exactly it. am so bored of my life. endless hospital waits and stays. one of the social workers were telling us that she is going on a trip to Bhutan today (on a medical mission to operate on kids with cleft lips) and I was so filled with envy sad Everytime I see a healthy child or toddler out there I wonder, why cant my child be healthy and normal.

last week was a difficult week as dd had pre-transplant checkups almost daily from dental to lung to heart and hearing and ENT checks. and one day she asked me why she had to be sick. did she do something wrong and was she being punished for it sad

Minmooch, am so glad you don't have the faulty gene...hope that is a weight off your shoulders.

hazlinh Thu 19-Sep-13 03:51:50

oh forgot to mention that the lung check discovered that she only has 50% ability to convert oxygen to carbon dioxide...not sure if temporary or permanent..and not sure why although sometimes chemo may cause this...could have been caused by methotrexate which she took when she had ALL sad

Twunk Thu 19-Sep-13 15:14:10

Oh heartbreaking she thought she'd done something wrong sad

Sorry to hear about the gas transfer issue. Do they think it will resolve itself?

I am (obviously) hoping Alex is standard risk. He's been an early responder (0 blasts in blood after prednisone, complete remission on day 15) and so we hope the MRD tests bear this out. But yes I am aware that there remains a 2-5% chance that there will be an "event" even if that were the case.

Can't think about it - I shake. I'm so sorry this has happened to your DD. No wonder she feels she's being punished. Big hug to her, and to you.

We're in NL and no social worker though we do have a very supportive team at the hospital. It's an amazing hospital and there's no shared care - any problems at all and we go there. The school has been great too.

Trazzletoes Thu 19-Sep-13 15:37:12

min that must have been some relief for you.

hazlinh sorry your DD is having a tough time of it.

Re: mucousitis, DS has had it constantly since high dose chemo in Feb. it was pretty bad for a few weeks - I think it was about as bad as they have seen it here. Now all the signs for the last few months are blistered lips which weep and flake but that's kept under control by Ranitidine and he's also on Roaccutane which gives cracked lips and mouth ulcers so doesn't help!

It was grim while he had it badly but tbh it's not affected him since he's been through the worst of it.

Trazzletoes Thu 19-Sep-13 15:47:29

Also it's def worth applying for DLA. J was awarded higher level on both counts. The form is a pain but it seems to be easier than for adults to get it. Perhaps it's just that the consultants and social workers know what to write to get it accepted too, I don't know, but I think it's definitely worth filling the form in.

Twunk Fri 20-Sep-13 11:00:53

Wish we had something like DLA. I'm not sure we get any extra financial help. Lots of holidays have been offered though.

hazlinh Fri 20-Sep-13 17:35:29

Thanks Twunk. Re gas, not sure. they said they will monitor it...

Trazzletoes, oh dear sorry about your DS' mucositis.. thank goodness it is a bit better

unbuckle Tue 24-Sep-13 22:24:26

How is everyone this week? Nocake, i am really hoping you are back home.

We had a kidney scan today so now i have a radioactive baby. Or two i suppose, due to the background radiation.

Baby i is still doing amazingly well in terms of general health. Not doing so well in terms of making progress towards not having cancer. But hopefully the doxorubicin will help that.

Xxx

Trazzletoes Tue 24-Sep-13 22:41:16

unbuckle sad

The neuroblastoma scans involve radioactive dye too and we have to dispose of Joe's nappies in special "radioactive waste" bin bags. I am not going to miss that.

hazlinh Wed 25-Sep-13 13:52:40

unbuckle oh dear. hope all goes well with doxorubicin!

trazzletoes gosh that sounds scary.

latest update: dd is two days away from her transplant and she started on rabbit anti-human thymocyte globulin yesterday which will prevent gvhd and graft rejection hopefully. bit of a scare each time she gets these rabbit infusions because she gets chills, tachycardia (yesterday her heart rate went up to 180, today 160), vomiting, dizziness, feeling funny, loss of appetite, dry mouth, thirsty, pain in her head, in her back, in her bum, and today she had a temp of 39.8. they gave her pethidine so she has been asleep for most of the day thankfully. doc says the transplant day will be a lot easier!

Twunk Wed 25-Sep-13 18:43:44

Alex is in his last week of "consolidation" which has been exhausting for all of us. Daily oral chemo, 2 lumbar punctures, and 4 or 5 doses per week of intravenous chemo in 4 weeks. We're coming up to his 2nd MRD which will determine his risk of cure and relapse. Am crapping myself.

He's had nausea and vomiting, mouth ulcers, exhaustion, and has really not been himself for a while. Hair has nearly gone too sad

Hazlinh that sounds really unsettling - must be hard seeing your DD go through all that. I've been thinking about you, and I have everything crossed for Friday xxxx

Unbuckle I am quite taken with the idea of a radioactive baby envy. Hope he's ok and the doxorubicin does the trick - it looks just like Tizer! Have fingers on other hand crossed for you xxx

hazlinh Thu 26-Sep-13 03:10:13

Twunk, oh dear, sorry to hear about the vomiting, ulcers and exhaustion...hopefully it will all be over soon and I really hope his MRD is negative and that he will never need to go through this again.

Can't believe dd's transplant is tomorrow..

Twunk Thu 26-Sep-13 09:15:40

A huge day for you, your DD and your family Hazlinh. I really do have everything crossed it goes smoothly.

Trazzletoes Thu 26-Sep-13 09:31:50

hazlinh hope today and the future go well. If it helps any, DS spent about 2 months with a heart rate between 160 and 200. I don't think it does permanent damage although its horrible to see them so so poorly.

Twunk good luck with the tests and results.

Joe has been having a reasonable week on antibodies and injections. He hasn't suffered so much with temperatures or pain this week which is a relief.

unbuckle Thu 26-Sep-13 16:58:12

Thinking of you today hazlinh.

Twunk Thu 26-Sep-13 22:39:14

Yes Hazlinh I will be thinking of you. xxx

minmooch Fri 27-Sep-13 07:46:54

Thinking of you today Hazlinh - hope all goes as well as expected. Xxx

Greetings to all. I'm an old lag from the previous thread -- dd now 2 had hepatoblastoma (past tense!) earlier in the year. It seems to be gone, thank God, so I feel a bit hesitant about posting in a thread when most of you are still in those unspeakable trenches. But I just wondered if anyone had any experience of trauma in siblings as a result of cancer. Ds 11 is really suffering. I've posted on a separate thread but understandably not had many responses as it's outside most people's experiences.

Ds aged 11 not child no 11!

Trazzletoes Sun 29-Sep-13 21:45:48

P4B can your Macmillan nurse suggest anything? At our hospital they run a support group for siblings.

Nocakeformeplease Sun 29-Sep-13 21:50:07

Hi P4B, sp glad to hear all is well with Beatrice but sorry to hear that your DS is suffering so badly. My DD is only 17 months so oblivious to everything but I hope someone with older siblings will be along soon.

Hazlinh - thinking of you and praying that everything went smoothly

Twunk - I know Alex's 2nd MRD is coming up. I wish to god I could take away the anxiety but will be keeping everything crossed for a good result.

Minmooch - how are you doing? And how is DS? Did you manage to persuade him back to school? I hope the chemo has not been to harsh on him.

Unbuckle - lovely to hear that I is doing so well. Is he still tolerating the doxorubicin okay? I really hope it is doing its stuff on the tumour. When do you next have a scan?

Trazzle - I was so glad to read about Joe eating and playing on the slide smile. And very relieved that the lump was nothing to worry about.

We received D's histology results on 13th, which thankfully showed that the tumour was favourable which was a great relief. Apparently it was about 80% dead which the consultant said is normal. D will now undergo 6 months of chemo and an 8 day course of radiotherapy to his stomach. As the pre op chemo had cleared the lung mets he won't have r/t to the lungs which is a relief but also quite scary, as I am now obsessed that it will mean he will relapse there. It was horrible hearing about the side effects from the r/t but I guess there is not much point worrying about them at this time as he has to have it.

In himself he is great - he even managed to start school 2 weeks after his op so was only a week behind everyone else. He did mornings to start but managed a full day Friday and appears to be enjoying it so far. It was very emotional taking him for the first time. And stressful too as already they have had 4 cases of chicken pox in the other reception class.

I am a bit up and down at the moment. He seems rally well in himself but I am terrified what is going on inside, especially as he had just under 4 weeks without chemo whilst he had the op and recovered. It doesn't help my paranoia that his hair has started to grow back, although they assure me that this doesn't mean the cancer is growing back too. Its just exhausting worrying about every twinge. This week alone I have convinced myself that he has already relapsed (on the basis of his frequent hiccups no less) and that it has spread to his bones because he complained once of a sore leg confused. He is having CT scan tomorrow to plan to his r/t so I am assuming anything untoward would show up on that but trying very hard not to think about it.

On Friday I went to a local support group for parents with children with cancer. It was so lovely to talk to people who just got it. There were only 3 other ladies but coincidently one of them had a DD who had finished treatment in Dec for a stage 4 Wilms, so it was very useful to chat to her. I will definitely try to go again next month.

Sorry for the essay! Thinking of you all xx

unbuckle Sun 29-Sep-13 23:41:06

Great to hear from you nocake and fantastic news on the histology. Amazing he is well enough to start school, especially after the second op. Isaac is having a scan too tomorrow- an MRI. They have again said it is likely they'll go to surgery as a result but i have learned from bitter experience to take that with a massive pinch of salt and to assume i have in fact misinterpreted what they've said....

P4B, my sick son has 3 older siblings, but we are much less far down the road for treatment. I was actually going to ask the hospital if they had family support as the more time goes by, the more trauma i see in the older kids.

Twunk Mon 30-Sep-13 17:46:22

P4B I am pleased to hear your DD is doing so well! I did read her story at the time, I think because I was following Lou's Chunt threads.

I have 2 boys but Alex's older brother is 5 and not excessively bothered by it all. There are charities that provide counseling, or is there someone in the family (GP?) who could have a no-pressure chat?

Nocake! Good news re histology! Yes we are waiting for 2nd MRD test, though it's a longer wait than I'd hoped as today his cyclophosphamide didn't go ahead (platelets too low - they were 10!) - so they'll try again Thursday.

Unbuckle I hope the scan went well?

Hazlinh you are very much in my thoughts - I hope the transplant went well.

Minmooch sending a hug to you and your DSs

Trazzletoes I am pleased to hear DS is doing well.

unbuckle Wed 02-Oct-13 20:03:27

So, the tumours are 'slightly' smaller. After 3 months of treatment, we are on slightly. It was the size of a fucking mango before so perhaps it is the size of a slightly smaller mango now.

Bastard tumours.

Trazzletoes Wed 02-Oct-13 20:14:49

Oh unbuckle sad

Does the tumour automatically shrink as it dies? I only ask because with neuroblastoma it can stay exactly the same size but change to something pretty much benign. Obviously better if it shrinks, but we were told that for Joe, not shrinking much wasnt an indicator of anything. Just wondered if it could be the same in your situation?

Great news nocake

Today is exactly a year since we were told Joseph had cancer. It's so weird looking back at the past year and everything that's happened and how our lives have changed.

Nocakeformeplease Wed 02-Oct-13 20:27:35

Oh Unbuckle I'm so sorry it wasn't the news you were hoping for. Trazzles makes a good point though. We were told at the beginning that sometimes the tumour doesn't shrink but changes consistency which makes it easier to remove. I was worried about this before D's scan but his key worker assured me its not necessarily bad news if they haven't shrunk. I realise though it must be very disappointing though sad. What is the plan? Are they going ahead with surgery?

Twunk - how frustrating. As if the wait isn't torturous enough. Wishing you lots of luck for tomorrow.

Trazzle - it must be so hard thinking of this time last year. I'm so pleased Jo is doing well at the moment though. Hope the bump on his head has gone down!

Thinking of you Hazlinh, Minmooch, Carebear, Stinkyfeet and everyone else xx

unbuckle Wed 02-Oct-13 20:31:21

I don't know - they did say that the appearance has changed which is apparently good- it is more cystic. I can't find what this means via Dr Google!

I find the consultant pretty hard to understand, and so although i think she did say that often the tumours filled with blood as they died and so didn't shrink, if I go back and ask her i'll probably find it wasn't that she said at all.

His abdomen is very considerably smaller and softer. And he is an amazingly beautiful baby. smile

How is J?

unbuckle Thu 03-Oct-13 09:21:44

Feeling a bit more positive this morning despite i howling and wriggling for what felt like most of the night. Wishing everyone a positive day and thanks nocake and trazzle for the support yesterday.

Twunk Thu 03-Oct-13 10:57:00

Hi Unbuckle! Glad to hear you're feeling a bit more positive. It does sound promising that the consistency has changed grin

Hazlinh I hope things are going well.

I'm having a bit of a hard time - Alex is doing really well but I've been struggling for a few days. I need to get a few things sorted and I keep not doing it, so must get on today. Possibly...

Stinkyfeet Thu 03-Oct-13 13:44:38

Sorry to hear your news, unbukle, but glad you're feeling better today.

I've just been to the hospital to sign a consent form for ds1's original tumour to be screened to see if he is suitable to take part in a phase 3 clinical trial of a new drug. We'll know in a couple of weeks.

Sorry you're struggling Twunk, sometimes it's so hard to accept that real life is carrying on and other stuff still needs to be sorted. Hope you feel a bit more motivated soon.

Best wishes to everyone.

hazlinh Fri 04-Oct-13 05:20:02

Thanks for the well wishes everyone...the transplant went well, it only lasted five minutes or so. the preparation took much longer! the first few days were really good, she was in such good spirits, she had excellent appetite but now she has started to develop ulcers, throat pain when swallowing, loss of appetite, stomach cramps, severe diarrhea 10x a day, bum pain. and she had a fever for the past two days. so she hasn't eaten for several days. but the doctors say it is expected and is a side effect from the chemo. and she should improve when her counts go up around Day 13 or so, when hopefully the cord blood will start to engraft. I really hope so! docs say they can give her morphine for the pain. I am hoping she won't need it sad

Trazzletoes, wow two months?! That must have been scary at the time. I thought I would faint that day. In fact I am amazed I didn't.

Unbuckle, I really know what you mean when you say you find your consultant hard to understand. sometimes I feel the same way! sometimes I feel like I know what she is saying and then the next day I feel like I don't. it can be frustrating.

Twunk hope everything went well yesterday. keep us updated...Hope Alex's MRD is negative...

Hugs to everyone xx

hazlinh Fri 04-Oct-13 05:37:06

Something that might make you all laff though. Silly story of the day. Woke up and inserted contact lenses into eyes. after one minute I realised my left eye was still blurry. Checked my eyeball in case it had slid up. Couldn't find it. Dug around again til my eye went red. Still couldn't find it. Inserted another lens. So either it went to the back of my eyeball or went down the sink without me realising. Should I be worried? Go to an eye doctor???? I'm certainly in the right place for it haha. My eye is ok now. No discomfort. Not so red anymore. I can't feel a thing. Is it likely to still be in my eye???? Hellpppp

KinkyDorito Fri 04-Oct-13 06:25:09

Stinky so sorry to hear that you are back sad sad.

Trazzles I know those late night arguments in the ward. I had several. They were what made me bone-tired, like nobody was listening to me. I remember the only time I got a decent reaction was when I cried out of sheer frustration. There is a lot of contradiction on there and it is exhausting. Sending you much love.

Min still keeping on?

We're 5 months off treatment but DD still isn't right. I don't think it's leukaemia; I think she has other things. Her immunity is still shocking.

I just wanted to say hello and I'm sad we are onto thread 2.

unbuckle Fri 04-Oct-13 19:58:34

So, they have decided to schedule surgery for Isaac. Onwards and upwards.

unbuckle Sat 05-Oct-13 00:27:10

How are your eyes Hazel? I have put two in one eye before and gone all the way to the opticians for a replacement before finding out!

hazlinh Sat 05-Oct-13 05:39:16

unbuckle, wishing Isaac all the best, when will the surgery be? yikes...I am not feeling any discomfot so I assumed it went down the sink...should I check?? arggg

unbuckle Sat 05-Oct-13 21:08:36

We're meeting the surgeon this weej, and he's going to have another doxy on Tues so it will be at least 2 weeks

Hazlinh, if your eye doesn't hurt and isn't stuck together i reckon you're ok!

hazlinh Sun 06-Oct-13 00:56:13

oohh ok unbuckle hang in there, both of you....x
Heh ya my eye seems fine, fingers crossed!

dd is on morphine now for the pain..they have upped the morphine gradually as it didn't seem to take effect at first. she can't swallow her saliva now, she is spitting in a cup. she vomited twice yesterday with some blood, apparently it's her stomach lining and it is normal for it to come out that way sad. she has some bug in her poo, so she is on three antibiotics.

unbuckle Sun 06-Oct-13 08:48:04

Even if it's normal, it must be very hard to see. Hope the morphine is having its effect now.

Trazzletoes Sun 06-Oct-13 09:36:12

Oh hazlinh I wish I could help. Joe had a transplant of his own stem cells in February so I know it's not quite the same but the side effects sound similar. This was the time when his heart rate was so high because of all the infections. It is such a horrible thing for these children to go through and such an awful thing to watch.

You are very brave. I screamed when Joe's bowel lining came out ( the other end) despite expecting it.

I was looking back through the pages and you said you hoped you were doing the right thing. As awful as it all is, and as awful as the risks are, I'm certain you are doing the right thing. What other choice do we have?

For those in the UK, just wanted to say that this week we have nets with a CLIC Sargent volunteer who is coming for a couple of hours a week to play with the kids or do some cleaning... Basically help out. I can't wait. It might be worth speaking to your local team about it. I ended up being referred through Joe's social worker although I had spoken to them about it before directly.

Twunk Tue 08-Oct-13 12:09:00

I wish we had Clic Sargent! Though the hospital care is amazing, no one ever comes to our house.

Hazlinh I hope your DD is doing okay. It all sounds bloody awful, so much strength to you.

Pleased to hear surgery is being scheduled Unbuckle.

I'm currently at the hospital waiting for Alex to be seen. He's poorly for the first time (that's not been chemo-related) - can't hold anything down and has a cold and a fever. His platelets were down to 3 last week, back up to 10 yesterday but everything else was down sad

hazlinh Tue 08-Oct-13 16:46:50

Thanks unbuckle. The morphine finally taking effect today after a horrible few days...dd seemed much better and happier today..smiled and laughed a bit...played computer games...and even sang a bit!! haven't heard her sing in ages!

Trazzletoes, oh dear. Hope his transplant was a great success. I tried very hard to stay calm when I saw blood even though dd was in a right state and panicking. I didn't want her to panic further. So I just said I would ask the nurse/doc if it was normal. Thankfully they reassured us and said it was. Wow I wish we had clic sargent too! We get social workers in the wards and outpatients here with the Childrens Cancer Foundation, they are amazing and they come for a chat every weekday and play with the kids or loan them dvds or games or computer games. but no cleaning!! I want that!!!

Twunk, thanks so much. hope Alex gets better quickly. Are they giving him platelets infusions? Dd's platelets were down to 15 and they gave her two infusions this week. Especially since she was vomiting blood, and then on sunday she had some blood in her diapers. Yesterday her lips were bleeding too.

Twunk Tue 08-Oct-13 20:34:55

Poor little love! But so pleased to hear she has been singing! I'm not good with blood either. Or poo. Or vomit. I'd be a rubbish nurse!

We've been admitted as he has a bacterial infection. Am here until the weekend - he's already a bit brighter but I was bloody terrified this morning. Funnily enough his platelets have gone up to 25 on their own! Everything else is low though, I think mostly owing to this infection.

I don't think he will end up having his second cyclophosphamide. Oh well.

Nocakeformeplease Tue 08-Oct-13 21:51:09

Im so pleased the transplant went well hazlinh and your DD is feeling a bit better - it must have been amazing to see her laughing and singing smile

Unbuckle - do you have a date for surgery yet? i know it is terrifying but it is huge step to get out the way. Obviously D had the same very recently so if there is anything you want to know about his stay/the op just shout.

Twunk - I'm sorry to hear Alex has an infection. Glad he is feeling a bit brighter though. I always find it it so much harder to cope when D is not well, it just seems to bring home to me that's he actually ill if that makes sense. Sorry you are having a tough time of it at the moment. I know all too well that feeling of things that need done, but neither the energy or motivation to tackle them....

Great news about the Clic Sargent volunteer Trazzles smile. I hope Jo is doing okay? How is your DD? Mine is a similar age and is into absolutely everything, climbing particularly - it's exhausting!

How is your DS Minmooch?

Hi Kinky and thanks for starting the original thread. I'm sorry to hear your DD is not right. It never ends does it sad

Hope your DS us still doing okay Stinky

D started radiotherapy today. He was an absolute little star and stayed perfectly still - I never thought he'd manage it. I found it quite upsetting but as the lovely radiographer said to me, I need to think of it as another step to getting him better. He has to have it done so there is not much point me worrying about the side effects that may or may not happen in years to come.

He has a stinking cold though so am keeping a close eye on him - I'm so worried he will get a chest infection as his neutrophils are so low at the moment. He's at the hospital for vincristine tomorrow so will get them to check him over properly.

Ad I finally got my DLA form in - I had a text to stay they have received it but that it may take 8 weeks for them to make a decision.

hazlinh Wed 09-Oct-13 06:32:04

Twunk, oh sorry dd's platelets were actually down to 6 not 15!
Anyway, good news, it's Day +12 and her total white cells and ANC are slowly going up, everyone here says they are really excited for dd. I am just nerve-wracked with anxiety and worry...am hoping this is it....
Hope Alex gets better soon and you get to go home.

Thanks nocake! She was so happy yesterday, I was really taken aback! Good luck with the radiotherapy. It's exactly how I felt re side effects. when I read that the pre-transplant chemo could cause permanent ovarian damage and girls would not achieve puberty. It was hard to stomach but being alive and infertile is definitely better than being dead. Periods are quite a hassle anyway. And I figured that the silver lining is that I needn't worry about her getting pg as a teen??? I couldn't decide whether to tell her at first, I was really worried she would be very upset but in the end I decided to break it to her gently, and she seemed ok. sad

Reenypip Wed 09-Oct-13 16:59:35

Hello, I know a great charity that has help put smiles on children's faces, whether its the child affected by a life limiting condition or their siblings,by sending cheerful post.
This is their email and website-
info@postpals.co.uk and the site is www.postpals.co.uk
I think it's been mentioned in the past, but thought I'd say just in case some of you don't know about it.

Naoko Wed 09-Oct-13 17:36:39

I hope you all don't mind me posting here - I came to this thread one late insomniac night via active convos and have been keeping everything crossed for your children but have not posted as I had nothing to add.

I'm originally from the Netherlands and just wanted to ask Twunk - you say you wished there was something like DLA to help with the increased cost; have you tried talking to the gemeente where you live? In many cases gemeentes have local funding for specific cases in which residents need help and it is very possible that there is something available for the families of children who are ill. If not, they may well be able to signpost you elsewhere, you may well qualify for various benefits or schemes available for 'mantelzorgers' (carers from the community) which I know exist, although I don't know which ones would apply to your circumstances of course. There is a website here, or you could try the UWV who should also know what is available.

Twunk Thu 10-Oct-13 13:32:05

I wrote a long message thanking you last night Naoko but I got chucked out as i posted it (probably thanks to the penis beaker. There's a sentence I never thought I'd write).

I will have a proper look when I get home but no I've not heard of them so thank you!! Very kind of you to look that up for me. The only thing is we're on a relatively high income. Well a middle-level income I guess. I just think they'll say we're too well off for help (though we're not well off).

We're going to be here until the weekend at least. Alex is loads better but they want to see his neuts up before we can go. They think he's been brewing this for a while since his bloods have crashed whereas they were holding up before.

Hugs to all.

Twunk Thu 10-Oct-13 13:33:14

Oh and Alex's doctor this time is gorgeous. I'm not usually one to notice or care blush but he is lovely too. <sigh>

Twunk Thu 10-Oct-13 13:35:21

Hazlinh - every cloud wink

You never know what will happen. As we keep being told take every day as it comes. It gets boring...but I suppose it's true. I hope she continues to do well. You have a real fighter there xxx

hazlinh Fri 11-Oct-13 12:00:09

Twunk so true. That is my mantra now. Taking it one day at a time. I used to be the type that buys plane tickets a year in advance to save money. Not anymore. I no longer know what we will be doing tomorrow...or two weeks from now..let alone a year.
They took bloods today for a dna test to see if her cells are the donor's. Am so nervous...

Twunk Fri 11-Oct-13 13:02:29

Got everything crossed for you. Legs, fingers, even my eyes. Hugs to you xx

How is everyone? I'm still lusting after the doctor (I think I must be ovulating - this isn't like me at all!)

We're in at least until tomorrow. I'm in this room 24 hours a day near enough. Prisoners get treated better!

I love my son but my god I need some time alone.

hazlinh Sat 12-Oct-13 13:23:06

Thanks! xx
Yes tell me about it!! I am going crazy!!!!! Prisoners have it so much better. I am lucky if i get to go down for a cuppa tea or a bite to eat. Was exciting last week as starbucks just opened in the new building nextdoor!!! I have a bit of a break now as my darling mum came. to stay in the ward til wed while i go home to rest a bit (we have been in for nearly four weeks!!!) but during the day i still go to the hospital and give dd a shower and all her meds (she is on so many! Glutamate, potassium,paracetamol and now tamiflu as she suddenly has a blocked nose and a bit of sneezing!!)

hazlinh Sat 12-Oct-13 13:25:39

Gee i wish we had a gorgeous doctor lol

Andro Sat 12-Oct-13 22:12:23

I am just nerve-wracked with anxiety and worry...am hoping this is it....

From what I remember of my friend's parents when their younger daughter had a BM transplant, it took about 3 months for them to settle (and about 5 years for them to believe it had actually worked), their daughter settled much faster and just sort of got on with things.

Wishing your family, and especially your DD, well.

unbuckle Sun 13-Oct-13 21:06:10

We're still waiting for a surgery date. Saw one of the surgical team last week and mentioned how hard it is to be in hospital 24-7 with a baby. He looked pretty aghast and said surely most people wanted to be there all the time.... I guess he is lucky and has never been on the other side . Hope you don't have too much cabin fever hazlinh. I tend to go over the edge after about a week and get stressed about being institutionalised and row with everyone. But perhaps i wouldn't if we also had a gorgeous doctor like twunk!

Twunk Sun 13-Oct-13 22:54:12

We're home now so will have to just have to be happy with my gorgeous husband wink

My god you'd have to be some sort of masochist to enjoy being in the hospital for days/weeks on end. I don't leave because my son is there and I will be where he is, but it's soul destroying at times.

Bugger know what we did before the internet.

Twunk Wed 16-Oct-13 09:44:48

Hello everyone.

Actually things are going quite well here - Alex is really well and happy at the moment. We have a bone marrow biopsy/lumbar puncture tomorrow sad then interim maintenance starts next week. That sounds calmer than we've had but actually we will be in hospital for 4 or 5 days every 2 weeks for high dose methotrexate.

How is everyone? You're all in my thoughts xx

Nocakeformeplease Thu 17-Oct-13 13:10:49

Hazlinh - I hope your lovely DD is still doing well. That must have been a very hard conversation but it sounds like you handled I brilliantly. FWIW I think it wil be a lot easier for her to accept having known from a young age, rather than finding out out of the blue when she is older. I hAve everything crossed for the blood tests x

Reenypip - thanks for that, DS wold love it so will tae a proper look later

Unbuckle how is little I doing? Any news on the surgery date? I think we can safely say the surgeon hasn't been on the other side. D had his last radiotherapy session this morning - while we were waiting we met another couple with a young baby with stage 4 Wilms. He was having his first session today.

Twunk lovely to hear Alex is doing well. I didn't realise th maintenance stage meant staying in so much. Will you be on a ward or in isolation?

So D had his last radiotherapy session today. I have to admit I'm very glad it is over. The process itself is quite quick and painless but I found it very hard, laughing and joking with him (to keep him calm), and all the time knowing the horrific side effects it might cause in years to come. He's doing very well in himself though and is really enjoying school. His hair has come back too - I have been assured several times that this is fine, but it still makes me a little anxious. I spoke to his key worker yesterday and his next scan wil be in about 4-6 weeks, so I'm trying to enjoy and make the most of the next few weeks befo i start stressing about that.

Hi to Minmooch, Carebear, Stinkyfeet and Trazzles xx

Nocakeformeplease Fri 18-Oct-13 09:33:45

Spoke too soon! D was admitted last night with a temp. Anti biotics started so will be here until at least Sunday. We're at our lovely local hospital - obviously I'd rather be at home but if we have to be in hospital there is no other hospital or ward I'd rather be on, the nurses are fantastic.

Hope everyone else is okay x

Twunk Fri 18-Oct-13 13:23:46

Oh no! Same as me last week! It's boring but necessary. thanks Glad you like the hospital!

Hope he feels much better soon.

Alex's bone marrow biopsy didn't go ahead yesterday as it has been rescheduled (no one told me though...). The delays have meant that we will be in hospital for Alex's first high dose methotrexate on my husbands 40th birthday sad

And possibly for Sinterklaas too. Sinterklaas is where Christmas comes from - it means St Niklaas. Similar idea only it's more for kids and you don't get a bank holiday!

unbuckle Fri 18-Oct-13 20:59:36

Still no progress for us, we are waiting for a date and also a location as we had a pretty terrible experience at the hospital they normally use and don't want to go back. Not sure we will have any choice tho given the risk of the operation as he is having surgery on both kidneys. Thinking of all of you in hospital. X

Nocakeformeplease Sun 20-Oct-13 21:55:35

How annoying Twunk - what did you have planned for his birthday?

It must be very frustrating waiting to find out when/where Unbuckle. I'm assuming the hospital you are talking about is the one Daniel had his ops. I have to admit I felt the same after his biopsy - the nursing care wasn't great on that occasion. In the main I was better when he had his actual op, but it did vary depending on who was on.

Well we're on home leave now, which means we get to go home but they keep his room and we have to go back once a day of the antibiotics. It's only 5 mins away so its not too bad really. The blood culture confirmed it was a staphylococcal infection. Hopefully the antibiotics should sort it out - he certainly seems much better now so fings crossed.

I am really stressing about his hair growing back. At first I put it down to the fact that he had almost 4 weeks without treatment during his surgery/recovery and then only had vinc, but 3.5 weeks ago he had doxorubicin (which last time caused his hair to fall out within a couple of weeks). This time nothing and everything I have googled suggests that hair always falls out on this drug. His key worker said it is fine and doesn't mean anything but of course i am panicking that if it isn't stopping the hair cells dividing, maybe it's not stopping the cancer ones either? On the other hand his neutrophils went down as expected so I don't know. Can't believe I was so upset when it fell out the last time and now I'm willing it to fall out...

Twunk Sun 20-Oct-13 22:06:36

Nice you are on home leave!

Alex still hasn't lost quite all his hair nearly 3 months in and I know he was an early responder. He still has a fluffy head and a tiny bit if fringe. He has humongous amounts of chemo because that's pretty much the only treatment for his type of leukaemia.

Twunk Sun 20-Oct-13 22:10:30

My parent(s) are coming so one or other or both are going to come to the hospital to look after Alex and DH and I will go for lunch! Thankfully our previous plans hadn't got far - we were going to stay in a hotel in Utrecht and go out for dinner. The original original plans involved a weekend in London sad. I've decided we will celebrate next year, as we will also have been married for 12.5 years in May, which is a mile stone here as it is half of 25.

unbuckle Sun 20-Oct-13 23:41:08

Isaac still has almost a full head of hair 3 months in and has not been neutropenic yet so i understand what you mean about worrying the drug isn't working. It is a teaching hospital in london i am concerned about having a) been there and b) spoken to other nhs staff. And yes it is the nursing not the surgery. And the cleaning inspection. And the man who came to grout the tiles. And the 30 other interruptions and interventions a day that left him sleeping only about 5-6 hours a day and not eating at all. But i think it's inevitable we will end up there.

unbuckle Sun 20-Oct-13 23:42:55

Oh, forgot to wish you a good night off twunk!

Trazzletoes Mon 21-Oct-13 14:32:14

Sorry I fell off the thread again - have just caught up.

Apologies but have been thoroughly caught up in the real life stresses of having to deal with this. My family is exploding apart.

Joe is in this week for his 4th round of antibodies out of 5. Strange to think there's a reasonable chance he could be finished treatment in 7 weeks - 49 days!

Or of course, that could just be when we get conformation he's relapsed and our worlds fall apart again.

I was due to look round a school for him tomorrow but DM's just called to say DD is unwell at home so that's unlikely now - I don't want to risk passing the germs around plus one of us needs to be here with Joe, so the other can't take a sick dd to look round a school <sigh>.

I hope you and your DCs are all doing well.

hazlinh Mon 21-Oct-13 16:46:21

Thank you Andro.

Unbuckle yes it is pretty obvious he has been very lucky and never needed to stay in for as long as we do. DD spent exactly 33 days in hospital this time for her bmt. I have no idea how we both made it through without going on a murderous rampage throughout the hospital. Actually I know how I survived, my mum came and took over half the time...plus the nurses and social workers have been pretty amazing...

Nocakeforme hugs to you and DS.

Twunk when DD had ALL, we spent every single holiday and festive season and birthday in the ward for the two years that she was on treatment. It became a bit of a joke after a while. In fact she was first diagnosed with ALL on Christmas Eve. On her birthday, my very kind sil paid for a clown to come and entertain her in hospital. One of the best birthday presents ever.

Trazzletoes so sorry...I guess we all have our own family explosions when we have to go through this shit sad

Anyway, the latest from us: dd was discharged on Friday!!!! with a big bag of new meds!!! antivirals, antifungals, anti graft rejection drugs, steroid cream, bum cream, nasal spray etc etc. docs practically shooed us out of the ward despite us insisting that dd wd be safer in the infection-controlled environment! i was so nervous about her being sent home!! she still had some fever and mild diarrhea (3-4x a day of watery or mushy stools) and watery eyes and rashes all over but they insisted she was fine. Her neutrophils were good and her ANC even hit 1.65 so they said she was engrafting and she had engraftment syndrome (with the rashes and fever) so I had to quickly disinfect and prepare the house, wash the curtains and send the carpets for cleaning (don't plan to unroll them once they get sent back to us). dd's dna test results are out today. it's really good news, her cells are 100% donor cells which was what we were hoping for. so hopefully it will stay that way...they will test again on Day 100, Day 200 and so on. She did a bone marrow on fri, and the results aren't out yet. she had her first post-bmt check up today. unfortunately her bp was a bit high, and combined with low platelets, the doc decided to admit her. so we are warded for one night....blerghhh. the anti graft rejection meds can cause high bp so they have stopped it until tomorrow morning.

Hugs to everyone xxxxxx

Twunk Mon 21-Oct-13 22:23:51

Hazlinh!!! I am cautiously very optimistic for you!!

Twunk Mon 21-Oct-13 22:45:26

Trazzletoes you must be terrified after the relapse/unrelapse thing before. I have every hope and wish Joe will continue to be a medical marvel (in the good sense).

Twunk Mon 21-Oct-13 22:48:34

Sorry so many individual messages - my brain cell is having a night off. Hospital sounds like a nightmare. I hope it will be better than last time x

Twunk Mon 21-Oct-13 22:49:11

That was to unbuckle. I give up blush

hazlinh Tue 22-Oct-13 05:53:38

Thank you Twunk!

minmooch Tue 22-Oct-13 09:01:07

Haz that's great news about the DNA tests. Long may it continue and that you get back out if hospital soon.

Waving hello at everyone.

Sorry for my absence. I read every day. I just can't seem to post here - I seem to be able to pretend elsewhere and post on other threads. I'm angry that I (and all of us) need to be here. I'm so tired of living life like this - yet the alternative is horrid. If my son beats cancer he is left with lifelong disabilities that make an independent life difficult for him. I'm so sad for him

I'm tired if being tired, sad, fearful, angry, desperate, but mostly tired.

My DS was showing very slight symptoms this time two years ago. We were away at half term walking in Somerset. He was a bit wobbly and very tired but that's all. A week later he had been having mild but frequent headaches. Not bad enough to stop him going back to school on the Monday (involving a train ride, 15 min walk, full day at school, 15 walk to train). On the Tuesday morning (1st November 2011) he was being sick, but it didn't smell of sick. My mum came over and after a brief chat with my GP we took him up to A&E where my GP had warned the neuro team we were coming in. An hour after being admitted he was having a Ct or MRI (can't remember) and at lunchtime I was told he had a large brain tumour :-(. We were transferred that evening to Addenbrookes where we stayed for 5 and a half months before DS was discharged to go home.

I'm having flashbacks to that day. What ifs - what if I had taken him earlier although he had been seen by a different GP on the Thursday before.

We've lived this journey for nearly two years and still don't know what the outcome will be. Tumour is still there. Disabities are permanent. We live from MRI to MRI thinking we might have some answers. Next MRI was booked on the day if my DS's 18th birthday - I have requested they change it.

There is nothing my friends can say or do to help - cancer is cancer whether I'm at home looking after my son or in a day spa treatment where I pretend everything is ok. I'm finding it more and more difficult with friends and family as all their lives have continued to move forward over the last two years ( as they are entitled to) but we are still stuck in this nightmare.

My other DS is fit and healthy and enjoying 6th form at school and moving forward with his life. I work very hard to ensure he has a normal a life as possible with a sick older brother.

I'm tired of being strong. I'm tired of people saying 'I don't know how you do it'. I'm tired of the battle. I'm tired of doing it all alone - and that means doing everything else - the house still has to run, shopping and cooking has to be done, grass cut, bins emptied, floors mopped etc etc etc.

I'm thinking of having a downstairs toilet and shower room put in incase there comes a time that my DS cannot make it up the stairs. I'm too tired to ring builders and depressed about the reason for it.

I'm tired, tired, tired, cross, cross, cross and I just want to cry.

And that's why I don't post often because it all comes pouring out <weak smile and small sob>.

Twunk Tue 22-Oct-13 11:23:41

Oh ((((((Min)))))))

You never know what any chain of events could have brought about. No one would think "oh it's cancer" - I'm slightly amazed your doc even suspected it at that point. So many are sent home. Alex was almost diagnosed with cancer 3 or 4 weeks before the diagnosis. But then it disappeared from his blood and they thought it was a virus!

It is beyond cruelty what you must go through. I wish I was down the road and could just have a cuppa with you.

Why don't you try one of the things on your list? I too have a growing list of things I Have Not Done. Yesterday I started one of them. I can't do my normal things - can't sew, find it hard to cook, can't read, etc so I know exactly where you are coming from. But just make one phonecall? Or send one email? Do a little bit every day.

Your son is amazing. You don't know it right now but honestly you are amazing. You're allowed to lick your wounds. But maybe another visit to your GP is in order?

Have a hug from me. My hugs are great thanksthanksthanks

min. You dear, lovely lady. What an unbelievably shit couple of years you've had. I can imagine how reliving the time of diagnosis is just horrible. Not least because you don't know what the future holds, and all the time you have the horrible, gnawing presence of cancer in your mind.

All you can do is keep taking one day, one moment at a time. You are doing astoundingly well in looking after both your boys single-handed.

Big hugs from here too.

unbuckle Tue 22-Oct-13 21:58:30

((Min)). It is hard not to look back at the time before cancer. But I think all that happens is that you torture yourself with what ifs and with remembering what life was like without this intolerable burden.

Even if you can't post, we are here.

minmooch Wed 23-Oct-13 00:32:56

Thank you everyone. Trying not to have a pity party but today had been a tearful one.

Tomorrow will be better xx

Nocakeformeplease Wed 23-Oct-13 12:30:33

Oh min - I'm so so sorry. What you are being asked to endure is just beyond comprehension. I wish from the bottom of my heart there was something I could do or say to bring you comfort. But we are here to listen, always xx

Unbuckle - omg, I know what you mean about the interruptions. I know some are inevitable but it was unreal. Everyone who visited said they wouldn't have believed it if they hadn't been there. The machine to administer the drugs went off every 5 minutes... 20 minutes later they would answer it and put the flush in which of course finish the second they stepped out the door.... Often there would be several alarms going off at once. It sounds like a silly thing to moan about it but D was in so much pain, it broke my hear when he would finally get to sleep only to get woken straight away. We also had a bad experience with one particular nurse, fortunately she wasn't on when he had the actual op.

Hazlinh - your DD sounds like she is doing really well and like Twunk, I am cautiously very optimistic for he too. I completely understand what you mean about leaving the safety of the hospital. I hope you are all enjoying being home now.

Oh Trazzles - it all sounds very stressful. I really hope DD is feeling better soon. I can't believe you could be near the end of treatment. It goes without saying that I have everything crossed that everything goes to plan. It's such a scary mix of emotions isn't it - wishing the treatment to be over but the fear of what happens next xx

Twunk - I hope you have a nice lunch and a trip to London next year sounds like a good plan.

Well we're still at home yay! D is back at school today although he was a bit tearful when I dropped him off sad. We're at the Marsden later for antibiotics and vinc. And I spoke too soon about his hair.... It's definitely falling out now. Funny to think when it first happened I cried, this time I was over the moon - which is ridiculous as I have been told several times it doesn't mean anything bad even f he doesn't lose it.

Twunk Wed 23-Oct-13 12:41:26

When I was last back from hospital I think I slept more than 18 hours I was so exhausted. Was only in 4 nights! But the constant I interruptions would drive anyone to drink.

unbuckle Wed 23-Oct-13 19:06:39

In a way i am relieved you agree on the interruptions and sleep, twunk and nocake, as i was coming round to thinking i was being totally unreasonable. But yes, the beeping. And the flush. And the stepping out even though they've put it on for 10 mins and it beeps when there are 5 mins to go. They gave the same meds at the marsden with , as far as i could tell, no beeping whatsoever, and isaac slept for 14 hours straight when we got there.

I am stressed just thinking about it, and feel it will be so much worse when he is in pain from the op. It seems so cruel to wake them up just as soon as they are sleeping because of a potential occlusion or the end of infusion warning.

I turn the beeping off and press the call button. But that relies on the beeping waking me before it wakes him.

Seeing the surgeon tomorrow. Will try not to go on a rant about the beeping or the fact they call me mum when there is no need to call me anything if they can't remember my name as isaac can't actually talk, and i am not their fucking mother.

Best to get that out here rather than during the appointment!

FuckerTwunk Thu 24-Oct-13 13:40:03

Please excuse namechange!

I don't think the nurses actually call me anything! My actual name I think, should it come up. Yes we get the pre-alarm-alarm. Then the alarm. Then the alarm with extra alarming noises. Oh yes.

Let us know how it went with the surgeon.

Trazzletoes Thu 24-Oct-13 13:56:02

I mostly get "Mum" which I hate. One Dr and a couple of Nurses call me "Trazzle". Just this week I've had a couple of: "Hello Mrs Toes" which took me by surprise.

I like to play a little game and try to get the Health Professional to address me by name to see whether they know it.

I appreciate they are busy and there are an awful lot of names, and to be fair, EVERYONE knows Joseph's name so I can't complain really, but it does make a difference to me if someone has remembered my name. It is on the front of his notes after all.

Trazzletoes Thu 24-Oct-13 13:56:54

Talking of alarms: my personal fave is the morphine scream. Particularly at, say, 2.37am.

unbuckle Thu 24-Oct-13 14:00:56

I tried repeating 'my name is unbuckle' after every sentence they said but with 0 success. What really bugged me is i was in with Isaac and his twin and everyone remembered his twin's name.
Next time i might try 'did you mean to be so rude'.

So, the good news is we have a date, in 2 weeks. The bad news being he needs two ops, one on each side, and is likely to need a kidney transplant in the long term.

Have slightly itchy eyes but managed not to burst into tears at that point.

Twunk Fri 25-Oct-13 16:12:04

I think if they actually called you unbuckle you'd be completely freaked out! wink

Goodness what a lot little Isaac must go through! I hope the transplant proves unnecessary but you will cross that bridge when you come to it. Well done for not crying, I try not to as I then find it impossible to ask questions.

Hugs to you.

minmooch I hope you are getting through the days with some joy to find in them. Hazlinh I hope DD is continuing to do well.

Twunk Fri 25-Oct-13 16:14:00

Trazzletoes I am also particularly fond of alarms around 2.30am. They are usually just at the very point I've finally dropped off.

unbuckle Fri 25-Oct-13 20:52:54

Just had my last day at work for 5 weeks. Less successful than yesterday on the not crying. Hard to deal with needing to tell loads of people as i hand over work. 'Nothing serious i hope'....

Twunk Fri 25-Oct-13 21:16:09

Oh god no anything but that sad

"My son has cancer" being something I can type okay, but saying it still has me dissolving.

Courage, mon ami x

Nocakeformeplease Fri 25-Oct-13 21:54:34

Oh Unbuckle - im glad you have a date but I know how scary this bit is. Will they do both ops during the same stay? I too really hope the transplant proves unnecessary. I think you did amazing not to cry, I seem to blub at the drop of a hat these days. I hate, hate, hate the cancer word and normally say kidney tumour as I can't bring myself cancer out loud.

I must be a bit strange as I always get called mum, but it doesn't bothered me. In fact I've never thought until now!

I'm also very dim too as when you said Trazzles that they called you Trazzles or Mrs Toes, for a moment I thought you meant they literally called you that. I was wondering how they knew your MN name blush

How is Alex Twunk? Are you at home at the moment?

Hope DD is still doing well Hazlinh.

Thinking of you min xx

D has managed three full days at school this week smile. The doctors don't really understand it as the blood cultures are still showing positive for infection but he is very well in himself, so he had to have blood taken from his hand yesterday to see if the infection is in the line. Poor little thing was distraught as you can imagine - it broke my heart because he was sobbing but asking so politely for them not to put the needle in again sad. They are talking about awaiting his anti-b's but is me really hoping they don't have to as the other ones are four times a day so would mean being re-admitted.

Stinkyfeet Sat 26-Oct-13 22:12:46

Just thought I'd check in to say that ds1 had his scan on Monday; we had the result on Weds that the tumours in his spine have shrunk grin So he's continuing on the same chemo until we find out if he's eligible for a phase 3 clinical trial. Consultant wouldn't be drawn on how much the tumours have shrunk, but she did say "visibly". Not out of the woods obv, but right here, right now , ds1 I well and life is good, so that's our focus.

Will try to catch up with the thread, but am half way down a bottle of wine, so I may lose track! I do think of you all a lot and often wonder if I've crossed paths with you, cake, at hospital wink

Nocakeformeplease Sat 26-Oct-13 23:11:18

Brilliant news that the tumours have shrunk Stinky (doesn't feel right calling you that grin). And I'm so glad that DS is doing well at the moment and that you are managing to focus on that.

I didn't realise you're at the Marsden too. We were there Wednesday - If you saw a little boy clutching a black spotty pyjama top (don't ask!) that was us smile

Twunk Sun 27-Oct-13 12:29:46

Hey stinky I hope he gets on the trial. Glad to hear all is well at the moment.

We're just battening down the hatches for this expected storm. It says coastal areas but A) the Netherlands really aren't very big and nowhere is that far from the coast and B) it being flat, there isn't much to stop a wind. It's been pretty breezy today.

I've been catching up on stuff I've been ignoring. I did make children's clothes before all this happened - had a little FB business, but have abandoned it. I still had one order outstanding so I'm just about to finish that. It's a load off.

Twunk Tue 29-Oct-13 17:33:57

Well just back from bone marrow test. We get the results 18 November. Had a meeting at the school with his teacher and the education liaison from the hospital - about when he starts school (he should have started in September though isn't legally obliged until next year when he's 5, however he gets no Dutch at home so it's important we try and keep it up). We can get a few hours home tutoring until he can start going, then he will also have some extra help in the class when he does start.

Hope all are ok x

unbuckle Wed 30-Oct-13 10:50:53

Back at marsden for the second day in a row for i. Ct scan under general. Amazing to think how anxious i used to be about generals.

This week has been really hard so far. Feel like things will never be normal again or even the new cancer normal again.

Hope you are all ok.

Twunk Thu 31-Oct-13 13:13:06

Oh ((unbuckle)) it's all so grotty sad. I don't think we will ever be the same again - you can't come through this experience without change. It's just too fundamental. We will do anything to protect our children and with cancer...well a lot of it is taken out of our hands. The stress of all this is enough on its own.

I'm so like "whatever" about GAs now. wink

AuntieMaggie Thu 31-Oct-13 19:08:32

I'm really sorry to intrude and even sorrier for what you all are going through. A child relative of mine has just been diagnosed with ALL and I'm struggling to know how to support them as they live in a different country - do you have any advice? Perhaps useful stuff I can post?

Twunk Thu 31-Oct-13 19:54:40

Hi Auntie Maggie. It's a horrible time - we are 3 months down the road and believe it or not things do get easier.

What people sent me that helped:

Pyjamas and dressing gowns for hospital (for me and Alex)
Fleecy blankets (also for us both)
Fluffy slippers
Toiletries for an overnight bag - don't forget toothbrush/toothpaste (because it's easier to have a bag packed so you can just walk out the door)
Biros - you can never have enough!
Stuff for child to do (crafts, toys etc)

I'll think about anything else. What a lovely friend you are x

Twunk Thu 31-Oct-13 19:55:39

Sorry just saw - relative. Same applies!

unbuckle Thu 31-Oct-13 22:59:00

Proper coffee and a cafetiere!

Hospitals can have shocking mobile reception- so a sim that works on the ward can help.

Gin

Twunk Fri 01-Nov-13 06:46:04

Can't believe I forgot gin...

Twunk Fri 01-Nov-13 09:45:51

Oh and something as crass as actual money - it's surprisingly expensive having a child with cancer. Until they have it all sorted there are a lot of out-of-pocket expenses. In the Netherlands we get no extra money and it's hard to get a blue badge so we pay for a lot of parking. In hospital I don't get meals so until we were a bit more organised I was buying food in the canteen 3 times a day. If they aren't especially flush it can have quite an impact on the finances.

Trazzletoes Fri 01-Nov-13 10:24:43

I second what everyone else has said! I couldn't work and care for DS til recently so we've lost a wage for 8 months. We can't take home cooked food to hospital to reheat so get through a lot of ready meals - perhaps there's a supermarket near the hospital and you could get a gift card?

Stuff to entertain the children - DVDs? Or craft stuff?

Books for the parents? There's a LOT of down time in hospital.

Trazzletoes Fri 01-Nov-13 10:26:21

Spare bedding? Or blankets? DS can get through several changes of bedding in a night.

AuntieMaggie Fri 01-Nov-13 10:29:12

Thank you. I don't think Gin will travel well wink and I think the meals and stuff will be covered by other relatives who are in the same country (and they have let homecooked food in...)

minmooch Fri 01-Nov-13 17:22:11

Ooh somebody gave me a mattress topper. The pull down hospital beds are slippery and cold/sweaty. Once I had a mattress topper on the bed it made it much more comfortable.

Hi everyone. I'm struggling on - two years ago today my DS was diagnosed. It's been a very long two years. Very hard to remember a time when life was normal. I'm very grateful to all the Drs and nurses who fought to save Will and given him a chance to fight this. I'm cross that Fter two years of pumping his body full of poison he still has a tumour. I feel guilty for putting him through this but I know there was no choice.

Love and strength all round. Xxxx

hazlinh Sat 02-Nov-13 06:51:57

hi everyone...have not been on for a while as everything's been a bit hectic. dd was discharged after 4 days (she was admitted for a high bp and then a fever) but the morning after we got home, she suddenly had a fever again and was admitted again! we are back home now, and hopefully will be for a while!! i am still adjusting to her new meds schedule, it is crazy, it starts a 6am with an antifungal that must be taken at least 1-2 hrs apart fr food and other drugs esp her anti graft rejection meds. then followed by penicillin half an hour later as a prophylaxis against strep etc, then followed by prednisolone steroid and an antiviral and magnesium supplement an hour later. and if its mon and tue, woohoo it's bonus bactrim day to prevent pneumonia. then she gets to eat breakfast and then 2 hrs later, the antigraft rejection meds. she also needs calcium and potassium supplements. 6pm the whole cycle repeats itself with antifungal, penicillin bla bla bla and ends at 10pm. i'm really exhausted and i woke up the other day with vertigo and could not get out of bed until around noon so her meds schedule was disrupted a bit. vaguely heard her coming in to say she was hungry and i told her to just get cornflakes from the cabinet....am still feeling a bit under the weather two days later.
other than that she is fine, her skin is changing (her skin turned very dark after the transplant and is now peeling away in places, revealing new fairer skin). apparently it is normal. her bone marrow result came out, it is good, negative for disease thank god. she is doing so well that the transplant doctor told us she can now drink yoghurt drinks, eat out (thank god! i was so exhausted the day before cooking and cleaning from 7am to 7pm and not being able to sit down the whole day! i hate steroids!!!) and even go out! as long as it is not too crowded so she suggested high end malls with designer shops. i was like err..theres not much she can look at there..and she laughed and said she could windowshop at Tiffany's! ha.ha.ha.
am having issues with dh, he says he is fed up and i have not been giving him enough attention. he is away for the weekend as he says he needs a break, from work and stuff.

unbuckle i completely understand about all the interruptions! here it starts at 5am when the nurses ask dd to pee, and then at 6am when they measure her girth and take her weight. and then start her med sched...jr doc comes in ard 7.30am to check on her...8.30am the registrar...10.30-11.30am the sr consultant and consultant...12pm it's lunch...2pm the jr doc...then i get a teeny bit of a break but then she gets bored and then i have to help her shower...6pm it's her meds all over again.7pm dinner and in between of course it's all the beeping and checking of bp and temp!!!!! i wish someone would invent a drip that would actually automatically call the nurse when the drip or flushing finishes!!!!!!!!!!!!!!!!!!! surely someone would have thought of that by now!!!! and re names, i never expected them to know my name haha, there are so many parents...but the other day, one of our favourite nurses asked me what my name was and i said will you remember it?? and she said yes! i was so surprised. one or two of the nurses here are really lovely, there is one that likes to go out and buy toys for the kids. she also gave me some Victoria's Secret hand lotion after i showed her my hands were covered in cuts and scaly skin thanks to all the constant alcohol rubbing!

hope that everyone else is ok despite it all...minmooch i know what you mean...i wish i could turn back to a time when dd was healthy...i wish our lives were normal...but that will never happen...even if dd is cured our lives will never ever be the same....xoxoxoxo to everyone on here....

Aunty Maggie, dd and I are also in a different country from our family and friends and they are always asking how they can help. Twunk's suggestion re money is practical and really useful. Our medical bills are really quite horrendous. My dd has had a bone marrow transplant in September and blood tests on donors and donor searches on the worldwide registry were not covered by insurance. The cost to procure the donor cord blood which was eventually used in her transplant was also not covered by insurance and cost us something like 12,000 british pounds. all in all, we spent quite a lot of money on this, and this does not include our daily expenses such as my meals (if i have time, i go down to have 3 meals a day at the cafeteria), extra snacks for dd (as she hates the hospital meals which are really bland and overcooked), taxis (we don't have a car here), and things to occupy her time with such as books, toys, arts and craftsy things. We are very fortunate that they have a charity that runs a library here in the ward which is very well-stocked with all sorts of board games and books and electronic gadgets such as dvd players, psp, nintendo, xbox etc. They are such a godsend. When dd was warded for over a month during the transplant, the social workers came and lent her an xbox and a basketball net! as the doctor said she needed to exercise a bit, and she also borrowed their psp and nintendo, and a dozen games! they also came in every day with lots of new arts and craftsy things to occupy her with. if it is tricky for you to send actual things, maybe you could send over virtual stuff? I got dd a kindle after a while, and told friends and relatives that they could send over amazon e-vouchers for dd to buy e-books with on her kindle....unfortunately we are in asia and we are unable to buy online games and videos but perhaps your relative is able to if they are in europe or the US. that would be really useful.

also a sim is useful, as unbuckle mentioned....

surprisingly enough trazzletoes, i always pack lots of books and dvds for myself and NEVER get to read or see any!!!!!!!! I also ambitiously borrow lots of magazines at the library and then have to return them unread when we are discharged!! I once borrowed a dvd boxed set on our social worker's recommendation and then the doctor said dd could go home in a couple of days and i frantically had a two-day marathon to watch the damn thing!! Way too busy during the day what with all the nurses and doctors and housekeeper coming in every minute and then at night I just collapse into bed!

One of the best things we ever got (which was in a gift pack from the charity, they keep giving us stuff!) was a hot water bottle! even though we are in a hot tropical climate, the aircon in the wards are really fierce! and even dd can't tolerate it, and she usually loves it cold. so that might come in handy. she gets very upset if i forget to pack it!

twunk's suggestions re fleecy blankets, dressing gowns and pyjamas are very good too. if the child has a hickman line or chemoport in the chest, it will need to be button-up pyjamas, i used to ask everyone to buy these for dd. not easy to find these esp warm fleecy ones in this part of the world.

sorry if that was a bit rambly, i am still feeling a bit out of it!
in a nutshell, these are useful:

dvds/movies
computer games, ipad, psp, nintendo etc
board games eg Pictureka
card games eg Uno
arts and craftsy projects: beads, paint by numbers kits, blow paints (helps to exercise the lungs which can be impaired by chemo), scrapbooking etc
e-books if they have a kindle, otherwise, books and magazines (if they are in the mood to read)
toiletries for both parent and child! I go through tubs of lotion in the ward as my hands and feet become very dry especially the hands due to all the alcohol rub.
maybe vitamins for the parent?? i need these to survive.
sim card
money

hth.

hazlinh Sat 02-Nov-13 07:00:12

also thought of something else, dd is into scrapbooking after the social workers introduced it to her, and they sometimes lend her a photo printer so she could print photos from my phone or laptop (you need a usb thing to save the pics on if the printer isn't wifi enabled) to stick into a scrapbook. she really enjoyed printing out all the pics of our cats (my mum has a dozen or more cats, and dd also likes to rescue stray street cats) and making a scrapbook out of them. she really misses the cats....

Trazzletoes Sat 02-Nov-13 08:52:44

hazlinh perhaps it's because DS is only 4 - he sleeps loads still! He doesn't like me watching tv at night so I either use a portable DVD player or read books. He's in bed long before me! And his meds make him sleep a lot during the day when he's in too.

He has a Hickman line but we've always been fine with t-shirt style pjs. Again, perhaps it's because he is smaller so his line is correspondingly longer!

Glad your DD is doing so well. The meds schedule sounds punishing. And hmm for her Dad. I hope you manage some down time. It took about 6 months for Joe's skin to get back to normal colour but he is very resistant to baths!

min big hugs. Sorry I can't be of practical help. But you're on my mind more than ever at the moment. Hope you are getting through this week ok.

hazlinh Sat 02-Nov-13 09:41:51

ahhh lucky you trazzles!!! dd has always been independent-minded and has always hated to sleep from the day she was born!!!!!!!!!!!! she never took naps until she got ALL and was anaemic, and now post-transplant she occasionally takes the odd post-lunch nap if she is feeling tired. but still rather rare!! dd hates me watching tv too!! so i usually have to use a laptop and i find it too much of a hassle.
oo Joe's skin changed too? gosh 6 mths sounds like a long time. here they make her shower everyday, it is compulsory for transplant patients because they say they are at risk of infection from microbial flora on your skin. but dd hates showering/bathing too!! what is it with kids and baths?? and it takes an age to get her in the bathroom! plus all the faff with wrapping the hickman line etc etc. I guess dd's line is a bit short, plus when they need to change the dressing every few days, a button style is easier, plus her dressing tends to come off quite a bit. she developed allergies to two of the plasters and came out in hives and kept scratching so they have changed it now.

hazlinh Sat 02-Nov-13 12:33:27

Great. I don't know how but I have run out of dd's steroid. It is saturday night and i don't have enough for tomorrow's morning dose and the hospital pharmacy is closed. called the paed onco helpline and i somehow have to go to hospital, with dd as there is nobody else at home, and get an on-call doc to write me a prescription and get the drug from a pharmacy outside. am so annoyed.

Twunk Sat 02-Nov-13 18:22:32

Bloody hell Hazlinh that's quite a schedule! Not surprising you ran out of something without noticing. Pleased you're home. I'm gobsmacked about your medical bills. There was me complaining that one of the drugs he is on is only half covered and that costs €75 a month. I don't know I'm born.

As for DH...words fail me. I know this time can be hard on marriages, but FFS it's been a shitty time and you need to pull together! Funnily enough my DH has been a bit moody lately, for more or less the same reason. Erm yeah...it's been a walk in the park for me. So...when do you get to bugger off for a weekend?

<walks off, muttering>

I can't remember everything that's been said, but I am taking a mattress topper into the hospital next week. Great idea!

Trazzle my son is also 4 but can push his sleep time to 11pm in hospital. Doesn't do it at home! Drives me mental. I saw on your other thread his stomach is settling down. Good to hear. How many weeks to go?

I found out that Alex has a genetic subtype of ALL which has a very high cure rate and a OS of pretty much 100% at 5 years. It's amazing news for us, though I remain cautious.

Hugs to everyone.

minmooch Sun 03-Nov-13 09:10:56

Haz god that regime sounds exhausting. I'm sorry too that your DH is not being terribly supportive. So he's gone away for a rest and you are having to take your dd with you to hospital to pick up a prescription - words fail me. My ex-h (boys step dad) just said to me one day he could not support me emotionally nor physically and resented the financial implications of me not working. He graciously said I could stay in the house whilst my DS was ill but he couldn't be there for me/us - he expressed much surprise when I didn't take him up on his offer, divorced him and set up a lovely warm cosy home for my boys and I. I know my ex-h was extreme but men's selfishness at times is staggering.

Twunk that is fantastic news but I understand your caution.

My eldest DS went to his Dad's last night. Youngest decided to stay here as he had a local party to go to. He rolls in at 2 am and manages to spend the next few hours throwing up. No rest from vomiting for me - instead of medically induced voms last night I had to deal with alcohol induced ones. Not a happy bunny this morning! Not sure if it's normal teenage getting used to his limits type of drinking or whether he is just letting go of the worries when he is out with friends. I'm torn between telling him off and hugging him tight. Will have a talk when he wakes up.

Women with a stinking cold as well which puts me in a panic incase my DS catches it. We all had our flu jabs last week but doesn't protect against colds.

Keep on keeping on everyone xxxxx

minmooch Sun 03-Nov-13 09:12:06

Women = woken!

Twunk Sun 03-Nov-13 18:40:25

Oh grim Min! I think it's something we've all done (well most people I know, including me!). It's a lesson learned.

Your ex sounds...lovely. Where do all these fuckwits come from? Do they have lessons in school that the rest of us missed?

unbuckle Sun 03-Nov-13 19:52:45

Going into hospital tomorrow for isaac's ops. His belly is so huge today he looks heavily pregnant and suddenly he's nearly bald.

Nocakeformeplease Sun 03-Nov-13 20:29:40

Oh my god Hazlinh what a regime - hardly surprising that you ran out of something given the list of medicines your DD is on. I hope you manage to get to the hospital without too much inconvenience. I am over the moon that the bone marrow results were good . Very cross with your DH - is he for real? Without going into detail on here, my situation with DS dad is very complicated/difficult - I just can't deal with it at the moment. I really don't have any spare energy, so am concentrating on my little man.

Trazzles I'm so glad to read on the other thread that Joe has turned a corner. Am keeping everything crossed for a smooth few weeks for your gorgeous boy.

Twunk - that is amazing smile. I am so sooo happy for you. I understand the caution but am delighted that the news is as good as you could have hoped for at this stage.

Minmooch - is your youngest still suffering?! I'm not surprised you were not amused. Hope you managed to have a good chat today and that yor eldest DS had a good time at his dads. As for your ex-h - I'm just disgusted on your behalf angry. It must have been incredibly difficult for you dealing with that on top of everything else, but you deserve a million times better than a spineless creep like that.

Unbuckle - oh my lovely. I know how incredibly hard this bit is. I am thinking of you and your lovely boy and hope it all goes smoothly. It's a huge step to get out of the way. if there is anything at all i can do, just drop me a PM xxx

D has has a lovely time with his cousin who's been staying for the week. He's back to school tomorrow. He had a heart scan on Friday - surprisingly his heart function is better than the previous one so that is great news. His key worker came to let me know that his scan will be in a couple of weeks. I burst into tears as soon as she mentioned it - god knows what I'll be like on the day. She said it is very rare for it to show any problems at this stage and not to worry, but of course I am. And the worst thing is we will have to go through this nightmare every 3 months for years sad.

minmooch Sun 03-Nov-13 21:42:30

Unbuckle I will be thinking of you and Isaac tomorrow. I hope everything goes as smoothly as possible. Xx

Nocake so glad D's heart scan was good news. I used to cry when anybody said anything to me! We are on 3 monthly scans at the moment. It's tough having scans, it's tough not having scans. Xx

My youngest DS seems not to have been too hungover today. We had a chat - he seems to be ok, teenage overindulgence. Back to school tomorrow - I'm tired thinking of it.

Twunk Mon 04-Nov-13 17:27:39

Oh I hate writing replies and they disappear!

So i will keep this short.

Hope today went okay unbuckle and hugs to everyone.

minmooch Mon 04-Nov-13 20:16:51

Unbuckle thinking of you and hope all went soothly. Xx

Nocakeformeplease Mon 04-Nov-13 22:10:29

Thinking of you too Unbuckle. Hope it all went smoothly and Issac is comfortable now.

That's a very good point Min - as much as I dread the scans, I'm sure if/when they suggest lengthening the gap in between them ill hate that too.

unbuckle Mon 04-Nov-13 22:12:08

Thank you min and twunk. The first op is tomorrow am but he was admitted today. Surgical registrar more optimistic about saving kidney today, apparently the latest scan was more positive on the less affected kidney. The worse tumour isn't shrinking, is maybe growing, but hopefully will soon be out too.

Just to have our first interruption of the night, meds and obs. Did convince them to do it together. Took an hour to get i to sleep - and he has been asleep for 45 mins..... But hard as the hospital routine is, it doesn't compare to the schedule you have hazlinh.

Min - infuriating isn't it that teenagers don't get hungover! But it sounds like a lesson we all have to learn. Must be hard on your older son though.

Great news on Alex's type of ALL!

Thank you all for thinking of us, I keep thinking of questions to ask you, nocake, but on balance as i overplan i think i am better not knowing or else i will try to deal with every eventuality in advance.

unbuckle Mon 04-Nov-13 22:13:13

Oh and x post with nocake!

It means so much to have you all thinking of us. I am thinking of you all too. X

Twunk Tue 05-Nov-13 08:47:01

Still thinking of you and Isaac unbuckle. I hope the day goes as smoothly as possible!

Stinkyfeet Tue 05-Nov-13 10:14:38

Thinking of you today unbuckle. Hope the op goes well.

unbuckle Tue 05-Nov-13 21:11:43

He's in the picu, sleeping not-very-peacefully. The op went well, they still hope to take the large tumour out next week. All your support means a lot to me; hope you are all having as good a week as you can! X

minmooch Tue 05-Nov-13 22:09:27

Good news that the first op is over. It must be a huge relief. I hope I settles down and you both get a peaceful night.

Twunk Wed 06-Nov-13 13:01:50

Hope the little man is recovering well. We're in this week for some drug treatment. The ward is full so we've been put in a special isolation room and it's lovely - nicer than the normal rooms! Alex had a lumbar puncture yesterday under sedation - the sedation they give is ketamine! So he was pretty out of it for a while wink.

The methotrexate has gone in fine. Might be out tomorrow, might be Friday. Tomorrow is my DH's 40th so we're hoping! I've bought bunting and balloons though just in case.

Velvetbee Wed 06-Nov-13 18:01:26

Hello all,

I don't know how I haven't found you before, we've been through some very bleak times and it would have been so reassuring to have others to chat to. I'm sorry to read the pain of other families on here, it's crap that it goes on and on.

DC3 was diagnosed with an optic pathway glioma in 2008 when he was 3. We've done Vinc and Carbo, Vinblastine, de-bulking surgery, temozolomide and 36 sessions of radiotherapy.

We've had 18 months of stability but his last scan shows 3 percent growth. They hope this is cyst activity as the tumour implodes.

He is registered blind but has some sight, is on hydrocortisone and desmopressin as surgery and radiotherapy have destroyed his pituitary. He needs growth hormone but they can't give till he's had 2 years of stability and he needs injections to stop puberty. He has a learning disability from the rt.
And I love him.

minmooch Wed 06-Nov-13 22:09:33

Hi Velvetbee I'm sorry you have had to join us but glad you have found us. I'm sorry to hear about your son's diagnosis - all of us on here know how harrowing it is watching one of our children seriously ill. I'm sorry that there appears to have been some growth but I hope that it is in fact cyst activity.

My DS was diagnosed with medullablastoma, aggressive malignant tumour. He has been through surgery, 6 months of high dose chemo, 6 weeks of twice daily radiotherapy and 54 weeks of maintenance chemo. Tumour still present and active he has now been on 5 months of Temozolomide but this last cycle has been very hard on him, no appetite, lots of sickness, no energy, so his consultant decided not to give him yesterday's (and 4 further days) chemo. Hopefully he will get a chance to eat a bit and gain some weight. MRI due two weeks today (on his 18th birthday) to see what's happening.

We've been on this journey for two years now and we are all tired beyond belief.

I hope you find some support here to help you get through.

unbuckle Wed 06-Nov-13 23:31:35

Hi velvetbee, just to echo minmooch i am sorry for what you're going through but glad you've found us. My baby son is in the icu at the moment recovering from an op to remove most of one of his kidneys; he's having the other one out next week.

Hope the drs are right about the cyst.

X

Twunk Thu 07-Nov-13 11:30:50

What a long journey Velvetbee - I've just looked it up as not heard of a gioma before (it's amazing how much you learn about childhood cancer once your child has it!). I also have everything crossed it's a cyst.

We are three and a half months into our journey. Knowing that even once the 2 years is over we have years of tests and the constant thought of it coming back is...depressing. But I'm trying to do that living one day at a time thing.

Hello Min I hope DS has a comfortable few days without medicine and gets some appetite back. I assume you didn't manage to move his appointment from his birthday? sad

Unbuckle how's the wee chap doing? Hope you're managing some rest. Thinking of you.

It's DH's 40th today grin. I remember his 20th birthday! It was just after we met blush. It's making ME feel old, though I am a smidgen younger...(1 year, 4 months).

Twunk Thu 07-Nov-13 11:31:52

Glioma sorry! I knew what I meant

Velvetbee Thu 07-Nov-13 23:20:44

Hello all, I relate to the 'living each day as it comes', thing. Sometimes it seems such a wearisome slog.
Will be thinking of your special people, big and small.
x

unbuckle Fri 08-Nov-13 14:47:35

You're right, velvetbee, but it's hard to live each day when some are so manifestly shite! We are on the ward now, it is just how i remembered. Have been waiting all day for the nurses to arrange an ultrasound as i's belly is v swollen and he is doing the green bile vomiting that sounds similar but much less severe than what happened to nocake's son.

justmuddlingalongsomehow Fri 08-Nov-13 19:42:49

Hope you don't mind me posting. There is a mnetter needing some advice here. She doesn't feel ready to join you on this thread yet. Thank you. x

Twunk Fri 08-Nov-13 21:41:34

Has he had the scan yet Unbuckle?

Thinking of you xx

unbuckle Fri 08-Nov-13 22:01:15

Yes, scan was clear which is good, they are likely to repeat it tomorrow though as he is so painfully swollen. His bile is less vile now grin although i would never have guessed at just how horrible it can be!

unbuckle Fri 08-Nov-13 22:02:45

Yes, scan was clear which is good, they are likely to repeat it tomorrow though as he is so painfully swollen. His bile is less vile now grin although i would never have guessed at just how horrible it can be!

unbuckle Fri 08-Nov-13 22:07:05

Oops my observations on bile were so interesting they appeared twice! Who would have thought it!

Would be good to hear how everyone else is doing, I'm in a hospital bubble but i know you're all still out there!

Nocakeformeplease Fri 08-Nov-13 22:41:25

Unbuckle - that is great news that the surgeon was more optimistic about saving the other kidney. I'm glad too that the op went well. Sorry to hear he has been uncomfortable today, I hope the swelling goes down soon. I sill remember the green bile vividly.....

Hi Velvetbee so sorry to hear what you have been through, it must have been very difficult. Will be keeping everything crossed it is just cyst activity.

Minmooch - I hope the break from chemo gives your DS a charge to recharge a bit. I hope the next couple of weeks passes quickly for you and am hoping desperately for good news from your scan. Your poor DS to have it on his 18th though sad

Twunk - I hope your DH had a good birthday. Did you get to go out to celebrate?

Hi to **Trazzles, Hazlinh, Stinkyfeet, carebear13, and anyone I've missed. Hope you are all having uneventful weeks.

All fine our end, although DD is coming down with something. And the scan has been brought forward to next week as the consultant is away the following week. I can hardly bear to think about it - please god dont let it show anything bad....

minmooch Fri 08-Nov-13 23:07:30

Unbuckle glad you are back on the ward but sorry that I's tummy is so bloated and he is vomitting. I hope both settle over night and you both get some rest.

Nocake glad all fine with you. I feel your anxiety. My DS' s MRI is in 11 days. The build up is horrid and then the wait for results. I get by only on wine and chocolate. Read in the Daily Express today that chocolate I fact helps you to lose weight - surely not the amount I put away each day!

Emotions running very high here, tears very close to the surface. We all deserve good news. Xxxx

Stinkyfeet Fri 08-Nov-13 23:12:37

What's up min?

Stinkyfeet Fri 08-Nov-13 23:25:36

Sorry, just reread your post and see it's coming up to scan time. I know how unsettling it is. Sending you strength xx.

Twunk Fri 08-Nov-13 23:57:12

Waves at all

Thanks Nocake. We didn't get out for DH's birthday - levels of mtx were too high. We're home now though and I fell asleep and slept all afternoon. I had bought DH a really fantastic camera which was a total surprise for him - got people to contribute then asked his bods to actually buy it (as we share a bank account). My friend made him a cake in the shape of the camera! And loads of people sent cards and gifts. He was very touched.

I hope DD is okay too.

Scans/results/etc are awful. Our next lot is a week Monday, when we're next in hospital. I shake when I think about it as these are critical to the next 20 months, and the years after too as they reflect his likelihood of relapse and survival. I think it's a special kind of torture.

Unbuckle pleased to hear scan was okay. I hope the swelling, vomiting etc all stop soon.

Twunk Fri 08-Nov-13 23:58:02

Hazlinh hope DD is still doing well after her SCT. xxx

Trazzletoes Sat 09-Nov-13 00:07:01

Hi I'm here and just catching up with the thread. Huge hugs all round.

Green bile - I won't be sorry to never see that again! Joe gets it every month at the moment, for a fortnight at a time... I spend the whole time terrified his gut is stopping again... And then it scrapes through. And then a fortnight later here we go again...

On Monday his (hopefully please God) last fortnight stint in hospital begins. It will be 4 weeks left of initial treatment. I feel elated and also sick with terror. After that comes scans. He hasn't had any since May. He's never been NED. What if it's still there? What if it's come back? We know now that we're never safe.

I looked at a school for him today. Very odd feeling and again, mixed emotions, and having to ask questions about his care and acknowledge in front of strangers what difficulties he has and what's "wrong" with him. Spoke to his Macmillan nurse today though and he's going to speak to Joe's nursery about getting him statemented.

I keep remembering how close we are to the end. And then I remember it may not be the end. And the I wonder how I can live another day like this. It is a special kind of torture, indeed.

min I wish I could do something to help. Is there anything I can do?

Great news about the kidney and glad the initial OP went well.

I'm so tired.

minmooch Sun 10-Nov-13 23:02:06

Trazzles good luck for the hopefully last 4 weeks of treatment and 2 week hospital stint. I understand the elation and terror all in one go. Sometimes saying out loud to someone new how ill your child is is very difficult. Well done for looking at schools. Xxxx

As for us my DS has had two whole days of no vomitting! And no anti sickness meds! Hopefully he can put on a little weight if he can keep stuff in and down.

My boys have been with their Dad this weekend and since Friday I have only spoken to the cashier at Sainbury's this afternoon. I ignored all phone calls and only replied to text messages. I ate my body weight in chocolate but did offset this with two long walks with the dog and a couple of hours on my allotment.

Just feel like I am passing time until scan and results. Can't put my mind to anything.

Love to all xxxxx

minmooch Tue 12-Nov-13 08:00:09

Aaaaarrrrrgggghhhhhhhhh fucking bastard cancer. I hate what it is doing to my child, all our children, our families. I want to do it for my child, not watch him suffer. I'm not sure I would be as brave but I'd suffer anything for him to just be having a normal life.

An MRI scan on your 18th birthday - it's so not fucking fair. And yet he seems to be ok with it - let's just get it over with mum, it's ok. I want to weep with admiration for him, weep with sadness for all that he has lost, weep with fear of the unknown future.

I feel like I am having to control every breath, in and out, concentrate on that otherwise the anxiety takes over.

On taking him home after school yesterday his head dropped forward - I panic inwardly - has he had a stroke, has he died just there in front of me, has he just fallen asleep? It's not normal to think like that I know but my son has a brain tumour and I don't know what will happen.

If you met me though you wouldn't know that there is this anxiety, panic going on. I'm all calm and jolly on the outside, I do my hair and make up, look presentable, pass the time if day with anyone. All the while there is this voice inside me, crying, screaming. I have gone very grey over the last two years and for every lb that my son has lost I have gained (plus some).

Rant and self pitying over. Mask on, paint a smile and get on with the day.

Twunk Tue 12-Nov-13 11:15:10

Minmooch it's okay. You're allowed to rant. You're allowed to do what the fuck you want. It's a fucking bastard disease that has put your family through so much. It's okay to feel all these things. It's very frightening.

Big, fat (but of course un-MN) hug ((((()))))

unbuckle Tue 12-Nov-13 18:09:51

Rant away, minmooch, cancer is totally shit, and you must be sick of putting your game face on for everyone else's benefit. More hugs coming your way.

Today Isaac had a sixth of his body weight removed. His abdomen feels amazing.

minmooch Wed 13-Nov-13 07:57:32

Wow Unbuckle that is, actually I'm not sure what the right words are. I presume second operation is done. It's frightening to think of it as a 1/6th of his body weight but that's great about his abdomen. Much love coming your way xxxx

Twunk Wed 13-Nov-13 09:25:27

Oh bless him! I hope he's doing OK and you're holding up. xxx

Nocakeformeplease Wed 13-Nov-13 20:36:50

Hi everyone. D had an abdomen ultrasound and chest x-ray today and thank god they were both clear smile smile smile. I can't put into words how relieved I am - I think I almost lost the plot in the run up to the scans. Still a long way to go and another scan in 3 months, but I am very grateful that so far so good.....

Unbuckle - it's incredible when you think of it like that. I'm so glad both ops are out the way now, and I hope I is comfortable.

Oh Minmooch - it's just so utterly unfair. I feel so useless, I just wish there was something, anything I could do. It's just beyond belief what you and your DS are having to endure. Big hugs, and much love to you both. I am hoping me praying desperately for good news next week.

Twunk - a special kind of torture sums it up perfectly. I have everything crossed for you too for Monday. I'm glad DH liked his camera.

Trazzles - so sorry about your night from hell the other night. I hope things have calmed down now and that you've managed to stay at home. I can only begin to imagine the mix of emotions as you get near the end of treatment. I'm praying for an uneventful run in for Joe.

unbuckle Wed 13-Nov-13 22:38:04

Wow that is amazing news, nocake! With the good histology he had, let's hope it stays like that.

Thank you all for your thoughts and wishes. Isaac is still asleep but i can't get over how his tummy feels. He's off oxygen, back on the ward and i am having a night at home with my other kids. It sounds awful, but it has made me realise how much easier it is without caring for someone with cancer - no dinner to fortify, no screaming at the sight of food, no meds to administer, no hickman line to hold in the bath, no tears at bedtime. My older kids have told me that all they want for their birthdays is for isaac not to have cancer.

I hope your ds comes through his horribly-timed scan as well as possible, minmooch. It is time for us all to have good news!

Twunk Thu 14-Nov-13 08:44:14

Yippee to the scan nocake. I am becoming increasingly agitated waiting for Monday, though a touch of PMT doesn't help! I am trying to stay positive, it's hard though isn't it? And I do get a bit fed up of (well meaning and generally kind) people saying you must stay positive - the thing is I know it's a pointless thing I would say. But the implication is that somehow my attitude to the cancer will strongly affect the outcome.

It's a whole bunch of conflicting emotions. It's a confusing world we all inhabit at the moment.

Minmooch I have everything crossed for next week. Fingers, toes, legs, and eyes xx

We have a shiny new car! It's lovely (and blue so the boys are pleased). Also I've been "awarded" 5 hours of homecare for Alex each week. The woman who applied for me said I might get an hour or 2. Tbh I'm pleased to get anything! It will help with Alex's Dutch too. We will also get homeschooling for next term too.

I actually went out last night! Not a mad night out just a committee meeting type thing. It felt bizarre leaving the house on my own wink

Twunk Sat 16-Nov-13 09:20:56

Hope everyone is doing okay this weekend.

We have the start of Sinterklaas. It's the festival the modern Christmas is based on. Saint Nicholas (Sint Niklaas - hence sinterklaas) arrives in a steamboat from Spain with all his "helpers" called (I shit you not) Black Petes (Zwarte Pieten).

He hangs around for 2 and a half week then leaves on 5 December, having deposited a sack of presents by the front door for the children.

There's been more discussion than usual about the black Petes this year.

Can't so links on my phone but google "Zwarte Pieten" and you will see....

Quickquestion2013 Sun 17-Nov-13 17:41:55

Message withdrawn at poster's request.

Twunk Sun 17-Nov-13 18:41:16

I feel sick just thinking about it so I am trying not to. sad

unbuckle Sun 17-Nov-13 19:26:10

Keeping everything crossed for scans and mascots. Thinking of hazlinh too, hope things are going ok.

I is doing well in terms of kidney function but keeps being sick and is so skinny it breaks my heart.

Twunk Sun 17-Nov-13 20:50:09

Oh bless him unbuckle that must be hard to see. I hope he's feeling much better soon xx

Nocakeformeplease Sun 17-Nov-13 21:00:52

Sorry, ignore above I forgot to name change back.

It's awful isn't it Twunk - I nearly want to pieces in the run up to D's scan. I literally couldn't find the energy or motivation to do anything last week, I was I was on the verge of tears the whole time.

Still thinking of you Min <<hugs>>

Oh Unbuckle - poor little thing, I hope the sickness stops soon. D was sooo skinny when he got out of hospital too.

Hope everyone else is doing okay this week xx

Trazzletoes Sun 17-Nov-13 21:39:41

My fingers are tightly crossed for all upcoming scans too.

Twunk does he have an NG tube? Joe went from 17 to 14kg when he was first diagnosed. Even now looking back at the photos I feel ill seeing how thin he was. It's so hard to see your child so thin on top of everything else.

We 're due in tomorrow for hopefully the last week in hospital... Except I called today and there's no beds sad. There's a lot of poorly children around. Bit of a novel situation for us as neuroblastoma usually gets shoved to the front of the queue and you get treated whether you're ready for it or not. I really hope they can find a bed tomorrow morning.

Mega-hugs min

Trazzletoes Sun 17-Nov-13 21:40:18

Sorry, I meant unbuckle not * twunk*. Apologies.

Twunk Sun 17-Nov-13 22:57:30

We had the same last week Trazzle - we're put into a neurological ward for the first night (as he was just getting hyper hydration and not getting the drugs until the next day). It was weird because it was really loud and full of people. Haematology is all separate rooms and on the whole the children can't leave them - so it's really really quiet. Also half the ward has additional isolation (ante-chambers etc) so even more quiet.

Hope he gets a room okay! You don't want a delay for that reason! Especially not for the last stay.

minmooch Mon 18-Nov-13 07:50:53

Nocake fantastic news about the scan xxxx

Twunk thinking of you today and hoping you get good results xxxx

Trazzles hope they find a bed for Joe and you can start this last week of treatment xxxx

Unbuckle hope little I stops being sick soon and gains weight. My DS was painfully thin during his long hospital stay. He went in at 63 kgs and went down to 40 kgs - he was skeletal and frightening. He's losing weight at the moment due to tiny appetite and sick every day :-(

Scan and birthday on Wednesday. Finding it very hard but having to be jolly because if his 18th. Can barely find the energy to put one foot in front if the other and my bedtime is getting earlier and earlier.

Love to everyone xxxxx.

Twunk Mon 18-Nov-13 18:19:39

He was MRD negative at both day 33 and day 79 which means he is standard (low) risk!!!!

Next year is looking a whole load easier. No walk in the park, but not a trek through thick jungle either.

gringringringringringringrin

minmooch Mon 18-Nov-13 19:31:16

That's fab news Twunk. Xxxxx

Trazzletoes Mon 18-Nov-13 19:53:47

Great news twunk.

Still thinking of you min and I hope this week goes ok.

They managed to find a bed for us and Joe is actually coping ok so far which is great. Usually by now he is yelping in pain and can't get comfortable.

Nocakeformeplease Mon 18-Nov-13 20:30:07

Wonderful news Twunk, I'm over the moon for you smile

I'm glad they found a bed and that Joe is doing okay Trazzles

Thinking of you Min. It must be impossibly hard for you both <<hugs>>

Hope I is feeling better now Unbuckle. Are you home yet?

Twunk Mon 18-Nov-13 20:35:51

Thank you everyone! It's great but we can't be complacent. I knew things were good when I saw the Dr smiling.

I have everything crossed for you Min. (((())))

Pleased to hear Joseph got a bed and is doing okay so far!

I hope our Wills boys are doing ok xxx

minmooch Tue 19-Nov-13 21:27:44

In for MRI tomorrow. Feeling scared :-( no results until Tuesday. The anxiety is horrendous.

unbuckle Tue 19-Nov-13 21:36:11

Hugs to you, min, and to everyone in hosp and/ or waiting for results - trazzles, hazlinh, velvetbee and anyone else still in!

Twunk Tue 19-Nov-13 21:38:31

I'm in hospital! Routine, but here for 3-4 nights.

Min I am holding your hand in a virtual manner. Xx

Twunk Tue 19-Nov-13 21:39:19

I'm in hospital! Routine, but here for 3-4 nights.

Min I am holding your hand in a virtual manner. Xx

Twunk Tue 19-Nov-13 21:39:42

So interesting I posted it twice blush

unbuckle Wed 20-Nov-13 00:04:09

smile. Hope you escape soon!

Stinkyfeet Wed 20-Nov-13 11:23:58

Happy birthday to your wonderful brave and inspiring son min smile

My thoughts are with you today x

Twunk Wed 20-Nov-13 11:24:23

Happy 18th birthday to your DS Min. I have everything crossed off the scan today xxx

Twunk Wed 20-Nov-13 11:24:50

for the scan

Trazzletoes Wed 20-Nov-13 11:48:59

Happy birthday mini though probably quite big actually min!!!

Everything tightly crossed for the scan x

minmooch Wed 20-Nov-13 11:59:32

Thank you all.

Ha ha Trazzles he is 6ft 1" so not very mini at all!

Very little sleep last night - annoying as we don't get results until Tuesday I suppose it's the knowing that someone else knows what's happening, and knows if it's good/bad/worst news.

Hey ho - I will eat lots of cake today.

Love to everyone xxxx

Allthebees Wed 20-Nov-13 15:20:57

De-lurking to say happy birthday to min's son. It was my grandad's birthday today and my friends little girl's too, so clearly a cool birthday to have.

Thinking of you as you wait for Tuesday. Hope you can enjoy some celebrations with your lovely adult baby boy.

unbuckle Wed 20-Nov-13 16:49:13

Happy birthday min junior, hope the scan is over now and you can enjoy part of the day. X

Nocakeformeplease Wed 20-Nov-13 21:49:43

Just wanted to wish your wonderful DS a happy birthday Min. It must have been an incredibly difficult day but I hope you both managed to enjoy some time together this evening. I hope the awful wait until Tues passes as quickly as poss xx

Trazzletoes Wed 20-Nov-13 21:55:04

Quick update because my day has been so ridiculous... Joe 'a treatment makes him retain fluid. Last time he ended up with fluid round his lungs which caused all sorts of problems so they've been really hot on it this time...

He has been quite positive on his fluid balance (700ml in total to this morning - he's been much worse previously...) but blood showed some signs of dehydration. He's had a hugely full bladder but seemed to lose the ability to empty it. So he's had a catheter in.

2 LITRES of fluid out later... 2 LITRES!!!! Where the heck did that all come from?!

Needless to say, he's negative today...

Twunk Thu 21-Nov-13 08:52:56

2 litres?! From a little boy?! Wow!

Trazzletoes Thu 21-Nov-13 08:59:20

I know!!!

On more frustrating news it looks like his stomach is stopping working again - proper green vomit last night and still 2 days if treatment left. I want to throw something and have a full on tantrum.

unbuckle Thu 21-Nov-13 09:21:13

No not the green bile.... So unpleasant. 'Luckily' Isaac has graduated to being properly sick now, not too much though and hopefully still going home soon.

Twunk Thu 21-Nov-13 13:40:37

Oh poor little Joseph - no wonder you feel like screaming Trazzletoes.

I'm surprised you're not digging an escape tunnel unbuckle!

We're out if here at 4.30. Relieved!

unbuckle Fri 22-Nov-13 22:22:51

Home! Hooray! He's clingy, but eating better than he has for months and is recovering his mischievous spirits fast.

Got very mixed news on histology. On the one hand, the smaller tumour turned out not to be cancer. On the other hand, the big one is 'blastemal'. The drs weren't keen to elucidate before we see our consultant next week but google tells me it means high risk as chemo was not effective.

Bastard disease.

Good to be out of sw17 though

Trazzletoes Fri 22-Nov-13 22:25:37

Oh unbuckle hooray and oh bugger. Hope the Drs have some more positive news for you next week.

Twunk Sat 23-Nov-13 17:21:23

((((((Unbuckle))))))

It's a lot to take in.

Hope you escape soon!

minmooch Sun 24-Nov-13 09:13:01

Unbuckle good news and bad in one moment. I hope the Drs have some better news next week with regards treatment. Xxx

Trazzles hope Joe is doing better now xxxx

Twunk hope you are enjoying some peaceful time at home cxxx

minmooch Mon 25-Nov-13 09:14:02

Aaarrrggghhhh just want to cry sad. Had a wonderful night on Saturday with 35 friends and family for DS's birthday. I wanted to cry with relief that DS actually made it (looked like we were heading to hospital on Thursday night with a temperature) he loved it but looked so frail. By god he's been through so much these last two years.

Yesterday dragged by, I feel like I was watching the second hand go around the clock. So tired but finding it hard to sleep but if I get in the car my eyes just want to close.

I'm so worried about his kidneys. One chemo cycle sent him into very near renal failure. His kidneys have not fully recovered and are part if the reason why he cannot have any more harsh chemo. The last few weeks he is down to one, max if 2 wees a day and his wee is so orange coloured. The last bloods done his urea and creatinine levels weren't too bad and yet I know it's not right.

Results tomorrow and I'm dreading bad news. I'm also dreading inconclusive results as living with this unknowing is very hard. I only want good news.

I have started the day with a bagel, two brioche and now I am starting on the quality street - and it's not quite 9:15 am.

Tired, tired. I'm so bloody tired.

unbuckle Mon 25-Nov-13 12:46:56

(((Min))). So glad he could celebratez Hoping against hope you get some good news, it is about time

I am eating chocolate mousse....

Nocakeformeplease Mon 25-Nov-13 14:23:33

Trazzles I'm so glad that you're home and the awful injections are finished. I really hope Joe feels better soon.

twunk glad you're home, hope Alex is doing well

Unbuckle it must be very hard to take in such mixed news. I hope the meeting with the consultant brings positive news with regard to the next step. In much bbc such a relief to be home, snd I'm so glad I is eating and feeling better

Min I'm so glad DS was well enough to celebrate his birthday with all your friends and family on Daturday. He has...well you both have been through hell these last two years and I am desperately hoping and praying for good news tomorrow.

D is neutropenic so has been off school last week and today. I didn't keep him off last time he was neutropenic but he ended up in hospital the following week - don't actually think the two things were related but I'm not taking any chances this time. We are both going stir crazy though, cooped up in the house! He's having bloods done again tomorrow so hopefully they will have picked up a bit by now.

MarnieMadden Mon 25-Nov-13 19:50:43

Minmooch just wanted to say 'good luck' for your sons test results tomorrow. Hope they are the best they can be for you all. X

upto11 Mon 25-Nov-13 21:27:42

Minmooch De-lurking to say I'm thinking of you and your DS, and crossing everything for good news tomorrow x

Sillybillybob Tue 26-Nov-13 07:13:58

min everything is massively crossed for you and DS today x

Trazzletoes Tue 26-Nov-13 07:14:36

Stupid name change fail...

Twunk Tue 26-Nov-13 07:32:43

I like the name change though, Bob wink

Adding to the army of people with everything crossed for today Min.

I'm glad you had a nice weekend, but completely understand the comedown from it.

Hugs from me xx

Stinkyfeet Tue 26-Nov-13 07:42:13

Thinking of you today min

minmooch Tue 26-Nov-13 17:59:40

We are back from the hospital. The scan results show his tumour is stable. I think we were all shocked, the consultant included, as he has been so poorly, vomitting, losing weight and little to no energy so we were all expecting the tumour to have grown. They are going to hold off giving him any more chemo (he has 3 more cycles worth left to him) until such time as it may be needed (if the tumour grows). Consultant said again that this is not curable but the aim is to keep him stable for as long as possible. They want to try to find out why he is still being so sick so different anti emetics given and referral to gastro team to see if he has a blockage.

I feel a bit numb really. I think it's the best news we could hope for in the circumstances but it does not feel like a celebration. Re scan in three months time.

I need a glass of wine.

Twunk Tue 26-Nov-13 18:07:47

I've been checking in all afternoon to see how it went Min. That is the best news you could hope for and I'm pleased it is stable.

I really hope they can find a drug regimen that has him feeling a bit better.

Hugs again xxx

unbuckle Tue 26-Nov-13 19:33:31

I'm sure it doesn't feel like great news, but I am so glad he's stable, and hope they can tweak his drugs to even out the side effects.

Is there an overall limit to how much chemo he can have?

Hope you are having the wine now!

Xxx

minmooch Tue 26-Nov-13 21:25:46

Yes Unbuckle there is only 3 more cycles he can have. It has not been an easy 6 months on this chemo for him and I think they are reluctant to give him the last few unless things deteriorate. To be honest I'm glad they haven't given it to him. I feel that his body has had enough and mentally it's too hard for him to continually feel ill, weak and tired. I can't watch him being poisoned any more - not if it is neither going to cure him nor give him any quality of life.

Nocakeformeplease Tue 26-Nov-13 21:53:53

Oh Min, it must have been an incredibly hard day. Im so glad your DS is stable but completely understand that it doesn't feel like a celebration.

I really hope that a break from the chemo gives him time to regain strength and that he is well enough to have done quality time with you over Xmas.

Much love to you all xx

Trazzletoes Wed 27-Nov-13 06:36:14

Oh min I am so pleased he is stable. Long may that continue. I really hope his meds can be sorted now so that he feels as well as possible.

Sending you huge hugs as always x

Obviously I have no practical experience but I sort of know what you mean about not being able to watch him be poisoned anymore... I was saying to DH the other day that if DS has relapsed I am not sure I can put him through such harsh treatment again seeing as it won't save his life. It is so hard to see our children like this, hey? But I really hope you can have a bit of downtime and enjoy Christmas together.

Trazzletoes Thu 28-Nov-13 20:21:27

Back in hospital tonight with a likely chest infection.

I'm having a little stampy tantrum on my own in the corner. Just so tired of all this.

unbuckle Thu 28-Nov-13 21:11:18

Boo hiss, sorry to hear you are back in so soon trazzle. I starts his new chemo on monday. No rt though, which is positive, and apparently the relatively dismal survival rates for kids with blastemal tumours arose from when they were treated as standard risk - so the high risk protocol should give him an excellent chance of recovery.

Hope you are out soon, you must be counting the days.

minmooch Thu 28-Nov-13 23:08:20

Trazzles hope you and Joe are home very soon. You're entitled to a stamps tantrum xxxx

Unbuckle good luck for I's new chemo on Monday. Positive news about rt. xxx

Keep on keeping strong xxxxxx

mmmmsleep Fri 29-Nov-13 00:01:46

hello ladies. I've decided to face facts and join you for some general hand holding if that's ok. after a month of waiting post first scan results we finally found out our 2 yr old ds has rhabdomyosarcoma. he has a big tumour in his skull. all rather grim and now it's turned out not to be what they thought it was he needs yet more procedures/staging before we can get cracking with chemo.
today I've done angry, gutted, google and exhausted. ...so tired of all the waiting and now more tests. bad day :-( I'm sorry you are all having bad times too. I truly wish there was no need for this thread :-(

minmooch Fri 29-Nov-13 07:21:48

mmmmsleep I am so sorry that you have had to join us but I am sure you will get much support from others going through similar. I had not heard of your DS cancer and looked it up - you must feel it is incredibly unfair when it is so rare. My 18 year old has a medullablastoma which is an aggressive brain tumour. Although it is one of the more common brain tumours it is rarely seen at the age my son's decided to activate itself.

You have a long hard road ahead of you but we will be here to hold your hand, answer questions if we can, listen to your fears, anger and hopefully sometime help you smile amongst the horror.

Waiting for a proper diagnosis and then treatment is agonising. Are you at home or in hospital?

I hope that when treatment starts it is not too harsh on your DS. Xx

Nocakeformeplease Fri 29-Nov-13 11:36:23

Oh mmmmsleep, have been thinking of you, I'm so sorry. This stage is is horrific and it must be incredibly upsetting to have to wait for the results of further test before you can start chemo. I hope you get the answers as soon as possible so that treatment can begin.

As Minmooch says, we are all here for you every step of the way xx

Twunk Fri 29-Nov-13 18:20:20

Adding my support mmmmsleep.

The waiting for test results is the hardest part.

Xxxx

mmmmsleep Fri 29-Nov-13 20:18:52

thank you for the support.
ct today showed slight extension of the lesion but no spread. bone scan, lp,bone marrow and his line all next week then chemotherapy starts Friday hopefully with results of all. He's getting more tired every day and just wants to "sleep on mummy" which is both lovely and exhausting. feeling guilty for my 9 month old too but I imagine I'll just have to get used to that :-(

Nocakeformeplease Sat 30-Nov-13 21:22:52

Good news about no spread. I hope the remaining test are not too uncomfortable for him.

My DD was just over a year when D was diagnosed. I felt terribly guilty in the beginning - not just that I was away from her but that even when I was with her, my mind was always with D and I would be counting the minutes until I could get back to him. She doesn't seem to have suffered any ill effects though and actually I'm grateful she was so young as I think if she was older she would have found it a lot harder.

Xx

mmmmsleep Sat 30-Nov-13 23:39:41

thanks no cake that's reassuring to know. x

Twunk Mon 02-Dec-13 08:54:21

Ah yes the guilt. DS1 is only a year older than Alex (they are 4 and 5) and are like twins. They sleep in the same bed and are very close. DS1 hates us going into hospital (we're on our way then again today) and I miss him horribly when I'm there. It's all very disruptive to family life, but you do get in a rhythm of sorts.

minmooch Mon 02-Dec-13 09:05:08

Mmmmsleep my youngest DS was 14 when I went from being there every day to only seeing him when I came home one night a week for 5 and a half months. It was easier in one respect as he was old enough to understand but but also old enough to understand the seriousness of it all. It is difficult whatever the age if your other children but there is no choice and guilt is yet another burden we carry on this journey.

Very pleased that the ct scan showed no further spread.

As for us we are nearly a week in the new anti sickness tablets. I think there is a little improvement and his wee is definitely a better colour. Fatigue levels still very low and exH was in tears last night about the whole situation. This morning though DS actually looks pink when I took him a cup of tea. Not yellow/grey/waxy looking but pink! But oh so skinny - he got up to go to the loo and there is nothing to him :-(.

Today feels like a bonus as youngest DS has an inset day and eldest wants to go in for last lesson of the day so I have both boys at home nearly all day! Yayyyy!

Hope everyone has a gentle day xxxx

minmooch Mon 02-Dec-13 09:08:43

Twunk crossed post. Hope your stay today is short and uneventful xxx

unbuckle Mon 02-Dec-13 14:22:20

Yes, the guilt. We were meant to be starting chemo today but isaac is too vomity. They want to admit him until he hasn't vomited for 48 hours.

It is my daughters' birthday on Wednesday.

Fingers crossed he will keep his meds down and they will change their minds.

Nocakeformeplease Mon 02-Dec-13 17:26:07

Will keep fingers crossed for I Unbuckle. Sorry, thought I'd already posted a message about this but good news about no rt and very pleased to read that old data out of date now and that the protocol gives I an excellent chance smile

Minmooch I'm glad DS is looking and feeling a bit better. Hopefully once the sickness is under control his appetite might pick up a bit. Hope you had a nice day with both your boys x

Twunk I forgot how close in age your boys are, they must miss each other a lot sad. Hope you're not in hospital too long.

mmmmsleep hope your little DS is coping okay with all the tests etc and that its still all on for chemo on Friday.

Hope everyone is doing okay x

mmmmsleep Tue 03-Dec-13 10:33:22

twunk I hope you have a quick stay in hospital and your ds does well. x
minmooch I do hope the new anti sickness tabs do the trick. I was 14 when my mum and brother had cancer. wasn't much fun but certainly made me stronger and gave me a sense that I can get through anything (which is coming in handy!). it also helped confirm my choice of career. hope that helps re your ds1. poor you though that must have been so hard to be in hospital for such a long time. I hope both your ds are ok today xx

we have bone scan today and 4 operations under 1 ga Thursday then straight to chemo Fri. busy week. steroids have kicked in and ds is much more himself. not much sleep at night but I'll trade that for a happier little boy any day!

Twunk Tue 03-Dec-13 12:13:39

That's one hell of a week mmmmsleep, I wish you much strength for it xx

Alex is poorly but not badly so - has croup. Woke up barking at 6am. Oh well at least we are here! His temperature was up but has settled down now. They're going ahead with this week's treatment but the lumbar puncture is delayed until tomorrow.

Unbuckle I am pleased to hear that I's prognosis is much better then you feared.

Hugs to Nocake, Min, Stinky et al xx

mmmmsleep Tue 03-Dec-13 18:45:55

so things just got more complicated. ..ds has to go to usa for part of his treatment for 3 months. Didn't see that coming!

twunk I hope alex gets better soon. ds had croup just before his last operation not fun! hugs for your hospital stay x

Twunk Tue 03-Dec-13 19:49:12

Wow! That must have come out of nowhere. 3 months is a long time to be away from home.

Trazzletoes Tue 03-Dec-13 20:50:21

Wow! That must be a shock. Whereabouts in America will he be treated?

mmmmsleep Tue 03-Dec-13 20:57:21

florida. hopefully we can swing getting dd and dh allowed to come too as she's too little to leave for 3 months. total spanner in the works re hiring a live in mothers help as we'd never get a visa for usa for her but not quite sure how I'll do it when dh goes back to work and need to do both dc alone including hospital trips/ inpatient chemo etc :-(

Stinkyfeet Tue 03-Dec-13 22:37:28

Wow, is it proton beam therapy he needs? That must be a lot to get your head around in these early days. Hopefully you've got a good team around you guiding you through it all. It's great that they are making the best treatment available even though it means you have to travel to get it.

Glad to hear things are stable min, hope ds is feeling ok.

Ds1 has a scan on Dec 23rd with result on 27th - hopefully Christmas will take our minds off the waiting fhmm.

Hope all the children are well enough to continue their treatment.

GreatExpectation Tue 03-Dec-13 23:01:05

Hi everyone- my son was diagnosed at birth with Stage 4s high risk neuroblastoma last November. He was extremely ill, in intensive care for 5 weeks and has endured the most horrendous treatment, the same as Trazzletoe's Joe. Right now I'm typing this message on my phone on the parent bed in the ward on our last week as inpatients. He's had a fantastic response and is in complete remission. We'll have a nervous time when we repeat the scans next month, but it's amazing how far we've come. He turned one last week, and is developing beautifully, if a little on the small side (understandably!)

He has had an NG tube since birth though- feeding completely messed up. Anyone on here have any experience with NG tube dependency?

Trazzletoes Wed 04-Dec-13 06:49:49

Lovely to see you again GE. Joe isn't eating still, maybe the odd baked bean here and there. But there is a mum I'm friends with whose DS is 2 I think and just had 3 month scans clear. He doesn't eat at all because of his tube to some extent. I think they're just waiting it out and encouraging him to try things in his mouth but I can see if she wouldn't mind having a chat with you if you want?

Really happy he's in remission too - desperately hoping to hear those words for ourselves in a few weeks though I think even if J has not relapsed, there will still be a pesky bit left in his leg.

minmooch Wed 04-Dec-13 16:52:30

mmmmsleep what a week for you. I hope the bone scan went ok and the next few procedures go smoothly. I know of two families who have been sent to Florida for their treatment. Both times they each went as a family but Dad and other child came home after a couple of weeks. That maybe difficult for you with a much younger child. I hope you can find a way of getting some help whilst you are out there. Xxx

Twunk hope Alex is ok and they are treating his croup. As if our children don't have enough to cope with xxxx

Trazzles I think I caught up on your other thread that Joe managed to get to the party - that's wonderful. The end of treatment nearly here - I bet you can't believe it. I so hope you get to hear those magic words 'complete remission' very soon. Hope you are all ok xxxx

Stinky the timings for scans always seem pretty shitty to me. I hope that you can hold it together and enjoy Christmas in between scan and results. Xxx

GE so glad to hear that your DS has responded so well to treatment. It's no wonder that he is a little on the small side after what he has been through. My DS had an ng tube followed by PEG (straight into his stomach). That has been out for a long time but at times I wish it was still there as he has no appetite and is losing so much weight. Hope you are able to get him eating soon - the paed dietician should be able to advise you xxxx

Hope you are ok nocake xxxx

GreatExpectation Wed 04-Dec-13 17:35:20

Yes Traz- would love to hear from her.

So does Joe get most of his calories from milk then?

Twunk Wed 04-Dec-13 20:29:40

Stinky that is indeed terrible timing for a scan! I have everything crossed for you.

GE that's brilliant DS is doing so well!

mmmmsleep I hope you manage to work out the logistics - I can see it's quite a spanner in the works but great he's getting the best treatment.

We're ok - lumbar puncture happened today as Alex is much better. Doctor was rubbish though and it took ages. Really stressful though thankfully Alex has no memory of it.

Hopefully out tomorrow as it's Sinterklaas and the boys get a sack of presents :-)

Love to trazzles, Nocake, min and anyone else xx

Twunk Wed 04-Dec-13 22:39:39

Hazlinh am still thinking of you and DD xx

Trazzletoes Wed 04-Dec-13 23:30:00

Cool GE I'll ask if I can pass on her email. Yes, Joe is fully tube fed. I think the last "proper" meal he are was in January. He will occasionally manage some roast chicken, or a couple of slices of apple. This week is the first week he has actually asked for "tea" every day. He'll just eat a mouthful of banana or some baked beans. We have the advantage though that a) he knows what it is like to eat and b) we can reason with him to some extent.

At the moment though he just doesn't like the sensation of having food in his mouth. We've been told just to take it slowly and constant encouragement for trying anything even if it comes straight out.

Twunk I really hope DS gets out tomorrow. I get irrationally greatly upset at the moment at Joe missing out on anything. I have proper toddler tantrums! I just hate him having to have illness carry on impacting on his life. I feel like he really missed out last Christmas as he was in the midst of chemo (it finished on Christmas Eve) and in and out of hospital with febrile neutropenia. He's very stoic about it all but I feel he needs to experience everything, to the point where I become a total crazy lady.

GreatExpectation Wed 04-Dec-13 23:36:43

I don't know about you Traz, but I'm well and truly sick of the tube feeding. Feel like I'm force feeding him all the time. Plus everyone has an opinion on it, and what you should be doing to get him off it.

Twunk Thu 05-Dec-13 05:47:05

Good luck with the operations today mmmmsleep - I hope it's not too arduous.

Twunk Thu 05-Dec-13 05:50:59

Trazzle funnily enough we finish this section of treatment on Christmas Eve! My husband doesn't understand but he doesn't have the same sense of "occasion" as me, and I also hate the idea of missing out on events because of this fecking illness. It's just so damn unfair on all of us.

mmmmsleep Thu 05-Dec-13 12:07:35

just to say thanks for the support. Can't do name calls as every time I go to write a post a different nurse or dr comes in to consent or poke our little man so I give up! i am thinking of you all though and sending best wishes for all the feeding problems, chemo and general rubbishness that you're all facing x

Trazzletoes Thu 05-Dec-13 15:05:58

Twunk we found last year that Christmas Day was the best day J had had in weeks because it was the end of treatment. I hope you find the same.

This year will be a different proposition. Hospital called to say one of J's scans (scheduled for next week) has been postponed by a week. It's his MIBG scan which is the biggie for finding out what is and isn't there.

Our results appointment is booked.

For 23rd December.

So we get either: it's no worse than it was or, amazingly, NED.

Or: your DS has relapsed and this will almost certainly be his last Christmas - merry Christmas!!!

I feel extremely sick.

minmooch Thu 05-Dec-13 18:13:51

Trazzles big big hugs. 23 Dec - fuck :-( I am so hoping for you that you get good news. Xxx

mmmmsleep hope everything has gone ok today xxxx

I'm struggling big time. This fucking disease has taken my child's life before it has taken him. I don't know how much more any of us can take. It's unbearable. And I'm not sure we have done the right thing putting him through all this but what fucking choice did we have sad sad

GreatExpectation Thu 05-Dec-13 20:32:01

Min- without knowing the ins and outs of what's going on with your dc I definitely empathise with how you're feeling and send hugs. There's just no way around it, having a child with cancer is unspeakably difficult and unfair. I think it's really hard at this time of year when everyone is scurrying around getting stressed about getting ready for Xmas (get a grip!) or out having a lovely time at parties with their healthy children.

I don't even want to be Pollyanna here and try and find some positives. I think we all have down days and sometimes you just need to let yourself feel sad, frustrated or whatever it is.

mmmmsleep Thu 05-Dec-13 20:33:56

oh minmooch massive hugs to you.

trazzle that's rubbish scan timing I wish you lots of good news for it.

ds 4 ops went well today. one new problem found and dealt with which meant we have to stay overnight in first hospital before moving to another early am for another test then chemo pm. ds is happily playing on the ipad having slept most of the day....shattered after 5am start and I have great hopes for sleep as we have a side room but hourly obs and late steroid dose for ds suggests otherwise..

GreatExpectation Thu 05-Dec-13 20:35:58

Traz- at least getting the scans done ASAP there's less time to get anxious. I have everything crossed for your Christmas NED xxxxx

unbuckle Fri 06-Dec-13 11:24:39

We're back in again. I's skin infection needs iv antibiotics. He's well in himself so we are both going stir crazy. We're in a bay for the first time and it is surprisingly noisy! Deep breaths.

Hope you got some sleep mmmm!

Nocakeformeplease Fri 06-Dec-13 13:29:51

OMG mmmmsleep, that is one hell of a week by anyone's standards. I imagine the US thing must be a logistical nightmare but I'm glad they are pulling out all the stops for your little DS. Are you under shared care? If so I assume your local hospital will be the same one D is under. If so we are only 5 mins away so please shout if you ever need anything.

Trazzlesi felt sick just reading that, can't even imagine what it feels like for you. A special kind of torture indeed. I am hoping and praying for god news on 23rd, I hope the lead up passes quickly.

unbuckle - sorry to hear you and I are in hospital again. I hope you get out soon

GE lively t hear how well your DS is doing smile

Min big hugs to you. It is unbearable, nobody should have endure what you and your family are going through. And you did the only thing you could, the same that we would all have done - I know it doesn't make it a jot easier knowing that sad

Stinky hope you manage to enjoy christmas and it takes your mind off the results a little

Twunk I hope everything goes to plan and this round of treatment is over just in time for Christmas

Not much to report at our end. D is enjoying all the fun bits they're doing at school in the run up to Xmas. He has a week off from chemo next week - yah! Still has to have bloods done though which is without doubt the worst bit for him (having his port accessed). Got lots planned in the next couple of weeks - just hoping desperately that he stays well so he can enjoy them. I thought he was getting a temp this morning but fingers crossed not.

Sillybillybob Sun 08-Dec-13 07:57:08

min exactly. It's no choice at all. It is constantly drummed in to me at the hospital that you cannot make the wrong choice for your child. I just want to reach out and give you a massive hug. It is just so bloody unfair xxx

To those in hospital I hope you're either out or doing well.

Today is the last day of Joe's treatment < gulp> i hope it's worked...

Trazzletoes Sun 08-Dec-13 07:57:52

And I am utterly shit at name changes.

unbuckle Sun 08-Dec-13 10:07:30

Fingers and everything crossed for you trazzle, and hope this year is the first of many amazing christmases.

Isaac's line infection isn't going, looks like it will have to come out and i will miss my kids birthday party. hmm

mmmmsleep Sun 08-Dec-13 13:09:36

unbuckle I'm so sorry that you're stuck in and have the prospect of a line change ahead :-(

we're stuck in hospital too. ds not taken well to his chemo. now on 3 anti sickness but still refusing to drink or take oral meds and very sleepy. can't see us escaping today. not a happy chap :-( this is so hard to watch isn't it.

unbuckle Sun 08-Dec-13 14:02:17

Isaac is actually really well in himself! Hard to accept he needs a ga. Probably going to be this evening. Chemo put back again now too....

Hope the antisickness meds kick in. I think sometimes the chemo is hard first time but they react better to subsequent doses.

Nocakeformeplease Sun 08-Dec-13 14:14:21

Oh Trazzles I can only imagine the range of emotions you must be feeling on Joe's last day of treatment. Thinking of you and desperately hoping for the best christmas ever of good news from the scans x

Unbuckle so sorry to hear Issac has to have his line changed - as if he isn't going through enough sad. When D had an infection in his line recently they thought he might have his changed but fortunately it didn't come to that

mmmmsleep its unbearable isn't it. If its any consolation D suffered terribly after his first chemo (was hospitalised for over 2 weeks) but touch wood has been much better since and apart from a little tiredness and sickness has been pretty much fine even after the triple doses.

Hi to Twunk, Min, Stinky and everyone else x

Twunk Sun 08-Dec-13 14:47:03

We had a quick trip to hospital yesterday (clearly Alex didn't want to feel left out) because he had a fever - but his CRP was near normal as were all his counts. He spiked a bit again today but they think he has enough white blood cells to fight whatever it is off by himself. His chemo at the moment (methotrexate) is boring but not too arduous.

WOW Trazzle - last day of treatment! I have everything crossed that it has all been successful.

Bummer re the line (and missing the birthday party) Unbuckle - big hug to you.

More hugs to you Min ((()))

And now I've forgotten what Nocake said so I shall post this and then post again when I've checked!

Twunk Sun 08-Dec-13 14:50:34

Oh yes I remember. Alex hasn't suffered from one dose of chemo - it's more cumulative. At the end of his first 2 months it was awful he looked so utterly exhausted from it all.

minmooch Mon 09-Dec-13 08:30:38

Lots of love to everyone in hospital and missing parties. It is so utterly unfair on our children and families.

Trazzles last day if treatment - what an achievement. We nearly lost DS somewhere in the middle of treatment so I couldn't believe he had actually made it to the end (and we lost two friends at the same time who did not make it through treatment). The mixture if emotions was very overwhelming and then a couple if weeks later he had to start again on another treatment. I am praying that you get fantastic results from the scans and that you can enjoy Christmas xxxx

As for us we made it to our family Christmas lunch yesterday - we try and get as many family members together before Christmas - 46 of us yesterday ranging from 9 weeks old to 89 years old! We managed to stay for 4 hours before Will got too tired but it was lovely to be there - at the moment I take each day at a time. My cousin was there who had a brain tumour 20 years ago. After all this time they have put him on growth hormones and he says he is feeling better than he has done in years - they are helping him with debilitating fatigue. We are off to the hospital (not to join in with the staying in hospital club) for an appointment with the endocrine unit. I'm hoping they can start him on growth hormones and anything else he is short of to help him. The fatigue is so hard to watch. He wants to do so many things but just has no energy.

Lots and lots of love to everyone xxxxxxxx

minmooch Mon 09-Dec-13 08:32:05

Missed out the word today - today we are off to hospital!

mmmmsleep Mon 09-Dec-13 15:32:44

we're escaping!!! He's managed an infection and an allergic reaction to one of the antisickness meds in the 11th hour but looks like we can finally go. yay!! back in a few days for next chemo but loking forward to a few nights in my own bed without machines that go beep.

sorry to those still in hospital. good luck for the escape and best of luck to all those with scans soon xx

Twunk Tue 10-Dec-13 19:33:05

Glad you're out mmmm cos we're back in! Flaming winter lurgy has laid us all low but Alex especially so. His temp was nearly 40C today.

He's on antibs but it's almost certainly a virus. I appear to have it too - the nurse just took my temperature and it's 38.4!

Probably here until Friday. Then back Monday for methotrexate. FFS.

Whinge whinge moan moan

Twunk Tue 10-Dec-13 19:34:28

How did it go with the endocrine unit Min?

Your huge Christmas lunch sounds lovely

mmmmsleep Tue 10-Dec-13 20:22:23

oh no twunk I'm so sorry. I hope you're both better and out soon. I had a conversation on the phone with our oncologist today and the phrase "perhaps we should review him here" was used. We'll see what tomorrow brings as to whether we're joining you back inside x

Twunk Tue 10-Dec-13 22:17:43

We had that too - 11pm yesterday sad

mmmmsleep Tue 10-Dec-13 22:36:53

sad sad

Twunk Tue 10-Dec-13 23:02:07

Hope you don't end up in the slammer too. We're scheduled to be here next week as well! Oh joy.

I'm thinking of redecorating...

mmmmsleep Tue 10-Dec-13 23:19:51

twunk...a little throw / some cushions pehaps then you can build up to a z bed that doesn't creak and machines that wirelessly link to the nurses' station rather than beeping when you've just got to sleep. just some ideas to run past mr lewellyn-bowen when you call him in ;-)

on another note does anyone have any tips on getting medicines into a 2 yr old. We're having battles. I manage to hide the lansoprazole fastab in 4ml of smoothy and dexamethasone in choc spread but he can't eat the amount of choc spread needed to conceal all the others and they are so nasty they're making his thrush and mouth ulcer ridden mouth hurt when he takes them. and don't even get me started on the nystatin or daktarin gel...tried both. I don't blame him it's the only bit he has control over and so much has been done to him.
all ideas gratefully received!

Twunk Tue 10-Dec-13 23:38:06

Mine is 4 so sticker charts (eventually) helped.

But when they didn't/don't we use a syringe and (listen carefully) you force place it into the corner of the mouth and empty contents into cheek. Almost impossible to spit out then.

Twunk Tue 10-Dec-13 23:40:10

Actually the bed isn't bad - solid with a semi-reasonable mattress. I bring pillows, sheet and duvet from home (packed ready in a big canvas bag).

It does creak when you get up though.

Twunk Tue 10-Dec-13 23:44:38

The pump is driving me proper nuts tonight. They tell you that you should sleep - WHEN?!

On that note I will sleep after the next one goes off in 5....4....3....

unbuckle Wed 11-Dec-13 00:24:39

We're still in too, waiting for the all clear for his new line. He is in better health than he has been for 5 months. I am going completely crazy with cabin fever and anxiety about relapse.

On the meds - force feeding - if you get the syringe between the teeth and at the back of the throat the liquid is hard to spit out. If you're in hospital, make the nurses do it rather than imagining they'll be more co-operative for a parent. NG tube.... if too viscous mix it with water. Hide it in milk.

The only one of these that works every time and is slightly less upsetting is the ng.

Only just got him to sleep so 1 hour 27 mins before obs at which point i invariably have to bring him in bed with me. Rest?

mmmmsleep Wed 11-Dec-13 00:29:53

damn I was hoping for a miracle answer. he had 8 syringes this morning for meds so force feeding would have just had us both in tears. bribery won in.the end. hope you escape soon ! x

Twunk Wed 11-Dec-13 00:48:55

Oh if bribery works stick with that! Or a combination of the 2.

I was asleep for about 30 seconds - then Alex yelled out, an alarm went off, his temp was taken (still has fever).

Oh no unbuckle I hope you get out soon! It's just such pants.

I will sleep.

minmooch Wed 11-Dec-13 17:36:10

I'm sending you all hugs. Being in hospital is just pants. We were in for 5 and a half months. It was awful and yet when we left it was just as frightening to be home. But I will never complain about the silence of my bedroom. And having my bathroom and washing machine. Even though we have been out of hospital much longer than we were in I don't think I have ever recovered from the lack of sleep. On top of everything else we have to face the lack of sleep is shite.

Now when my boys have a night at their dad's house I sometimes take a sleeping tablet which knocks me out for 13 hours. Not sure I feel any better for it but it must be good for me.

Endocrine appt was ok. DS is very deficient for growth hormone so they will start the process to get him on daily injections - can take up to 2 to 3 months to sort out. Wtf? If this will make him feel a little more energy I want him to have it now not in 2 to 3 months. Fucking beaurocracy and in all his treatment this is such a small cost.

Trazzletoes Wed 11-Dec-13 17:37:54

Sorry you are all in sad

If bribery works, go with that. I used to have to rugby tackle J and force it down his throat. Horrific all round. I was so grateful when he got his NG tube. Of course, now he won't even take Calpol orally...

mmmmsleep Wed 11-Dec-13 19:29:15

oh min that is truly rubbish! can you get PALS at the hospital involved to see if they can help speed things up? or local mp. If there is a clinical need it's ridiculous he has to wait months for such a common treatment. I'm with you on wtf!!

so sorry so many are in. we're staying out so far. He's saying his wiggly (he's hot hickmann) hurts today. Can't see any signs of infection. just hoping it's just that he doesn't like it. he had a 3 course meal with meds hidden in every course today...got them in yay! hopefully he'll improve once his mouth isn't full of ulcers.
hugs to you all

Nocakeformeplease Thu 12-Dec-13 10:27:55

Sorry to hear so many of you are in hospital - I hope your stays are short lived.

Your lunch sounds lovely Min. I think taking it a day at a time is all any of us can do - not always easy I know. Very frustrating about the 2-3 month wait - did they say why it takes that long?

mmmmsleep DS often complains that his wiggly hurts but we have watched him closely and are pretty sure he just says it when he's fed up (normally after its jus been accessed). Sorry to hear about your DS's ulcers - must be miserable or him poor thing

Trazzles thinking of you and Joe x

Twunk - hope Alex is feeling better and that you managed to get some sleep.

DS went on his first proper play date (without me) after school yesterday smile And we're off to see Father Christmas this afternoon, organised by a local charity. Like Min I am trying very hard to take it one day at a time and not obsess over what might happen in the future. I don't always succeed with this!

Twunk Fri 13-Dec-13 22:55:03

Yippee I'm home!!

Until Monday. Boo

unbuckle Sat 14-Dec-13 21:31:48

Enjoy it twunk! Every second at home counts.

We are still banged up. Plan is for line on Monday. Then tues- fri as outpatients at the marsden.

Ho ho ho.

X

Twunk Sat 14-Dec-13 22:37:29

Ho fecking ho fangry

Nocakeformeplease Sat 14-Dec-13 22:38:28

Sorry to hear your still in unbuckle sad. I thought you were just waiting in the all clear on the new line? It feels never ending at times doesn't it. I hate it too because there is too much time to think - at home at least there is the distraction of taking care of the DC. Thinking of you xx

Nocakeformeplease Sat 14-Dec-13 22:40:24

You're not your!

We're in all day wed for a long chemo do may see you then!

unbuckle Sat 14-Dec-13 23:55:03

Yes, that's likely. We had all clear on Weds, it's just that none of the hospitals fancy making room on their list for him.

mmmmsleep Sun 15-Dec-13 07:30:30

oh no unbuckle sorry you're still in :-( we had a 10d wait for a line to start chemo...was so frustrating. We're in Friday for chemo so will see you then. I'll be the one with the 2 year old strapped to me. ds just wants to cry and sleep on me at the moment. he even turned down opening some Christmas presents early yesterday and refused chocolate! I can't get any food in him which is a pain because that was how I got his meds in. been up most of the night with him in pain due to constipation and other pains sad

glad you're home twunk even if it is shortlived

nocake how did santa go? ds hasn't really got into santa yet and I think he'd just freak out thinking it was someone else trying to get to his wiggly like every new person he meets at the moment.

still sending hugs minmooch x

mmmmsleep Sun 15-Dec-13 07:45:03

and hugs to you too trazzles.

Trazzletoes Sun 15-Dec-13 09:28:03

Thanks. Sorry you are all having such a frustrating time.

J has had hearing test, heart echo and kidney function test this week plus an MRI of his head, chest and abdomen.

Next week is MIBG - which I think is just a neuroblastoma thing - they inject this MIBG radioactive dye and it sticks to most neuroblastoma tumours and lights up on the scan.

He gets a GA for most scans but just sedated for this one and it never quite works right! Plus the scanner is quite scary as the plate comes down to literally an inch above his nose! All fun and games...

Hope you're out soon unbuckle and hope Monday goes ok twunk. Keep on keeping on.

mmmmsleep Sun 15-Dec-13 18:56:41

I will call our nurse tomorrow but is this normal in your experience? had first chemo 2 fri ago (vinc / cyclophosphamide and adramycin) and vinc again last fri. all he's wanted to do pretty much since start is sleep on me. It's getting worse and now sleeping most of day with v few glimpses of his normal self if any and 6 spoons of food all day today.

I didn't expect him to be fighting fit but just wondering what your experiences are. he hasn't got a temp and counts were ok thurs.

Nocakeformeplease Sun 15-Dec-13 20:57:00

It's so hard to know what is a 'normal' reaction isn't it.

DS becam very lethargic two days aft his initial chemo, but then he went on to develop a temperature later that day so it may have been because of that. He hasn't been particularly sleepy after subsequent chemos but then he is on a different chemo (vinc, actinomycin & doxorubicin).

I would give the marsden a quick call tonight if you are concerned. They have been great at putting my mind at rest over the phone on a couple of occassions.

Twunk Sun 15-Dec-13 23:32:16

I call if I have any concerns.

Tonight Alex fell off the cabin bed and hit his head on a drawer unit. He cried immediately, eventually calmed done, stopped bleeding and seemed fine but I knew I had to call. We were told to take him to our local hospital to check his platelets as if they were too low he'd need a CAT scan. Thankfully they were high enough and he could go home.

I think my point is that quite often if it's something you're worried about, they may want to check it out.

mmmmsleep Sun 15-Dec-13 23:54:42

thanks ladies. he spiked a temperature and we're in. he has an infection in his hickmann line...pus coming out of it since I last looked :-(
now on the full monty of heavy duty antibiotics and in for the forseable :-( bugger

mmmmsleep Mon 16-Dec-13 00:40:10

sorry twunk....I'm so glad alex is ok!! x

minmooch Mon 16-Dec-13 08:58:42

Bless him mmmmsleep. It's so hard to know when to worry or not. DS spent most of his first lot of treatment sleeping through it and after radiotherapy slept for most days for weeks and weeks. Always call and get advice. Our children are vulnerable and need more care. Sorry he has an infection in his line. Hopefully it will pass soon xxx

Twunk. So glad Alex is ok and platelets high. The extra worries we have to go through are so hard as well as everything else.

One of the babies at our family party came out in chicken pox the next day. Will hadn't been close but I had been kissing and cuddling the baby. Consultant wasn't too worried as he has had chicken pox but I feel on high alert.

My dog can't walk on his paw this morning. Pads are all swollen on one paw. No blood. Obviously my immediate thought is that he has a tumour and I will have to put him down and how will I tell the kids etc. I see disaster at every step now in my life! Vet appt at 10 so hopefully it's nothing more than a splinter!

Love to all xxxxx

unbuckle Mon 16-Dec-13 11:25:29

Oh no mmmmsleep, not you as well for the line. Have they told you how long the course of antibiotics is or do you not dare ask?

I is meant to be having his line in shortly. I'm at home, as he's better with his dad when he's nil by mouth. Couldn't really sleep last night without him next to me.

And we have a mouse in our house. Read a thread the other day that advocated burning the house down to get rid of them!

Nocakeformeplease Mon 16-Dec-13 14:13:16

So sorry to hear DS has an infraction in his line mmmmsleep - I hope the ab's kick in soon and you don't have to stay in for long.

Will keep fingers crossed nothing serious for your dog Min. Understandable that you feel on high alert about the CP - it's so unfair that everything is tainted with worry and stress isn't it sad

Hope everything goes well for I unbuckle

Glad Alex was okay Twunk and it didn't mean another admission.

Hi to Trazzles and everyone else x

I'm so fed up today. We had planned a really special day to Lapland UK on Monday, my mum, sis and niece were coming and it sounded wonderful (should do for £400 between us!). Just got D's bloods back though and although he didn't have chemo last week and only vinc the week before, they have dropped quite a bit which means with the triple chemo tomorrow he is very likely to be neutropenic Mon. I know it's only a small thing in the scheme of things, especially given what some of you are going through, but he's been so brave this year I just so wanted to give him a really special day sad.

mmmmsleep Mon 16-Dec-13 16:02:48

oh that's so disappointing nocake.i totally understand and you're allowed to be annoyed :-(

unbuckle. we're waiting for culture results Wednesday then will see where we go from then but it's looking like a while so I guess friday chemo is up in the air. hope your ds' line went well

Twunk Mon 16-Dec-13 22:34:21

unbuckle we've had 2 mice in our house. Margaret died in an empty trap (after having carefully removed the tasty treats without setting them off for several days) and Gary got stuck in a bag of dog food. He was humanely released a long way from our house! We've not had any since.

Alex has a Portacath, not a Hickman, and it's not got infected...so far. Although treatment for ALL is 2 years, after January all his chemo is oral so it can come out! I am pretty happy about that. So I hope all line problems are resolved soon.

Oh nocake what a fucker. Fecking cancer and fecking chemo sad angry

hazlinh Tue 17-Dec-13 05:04:19

Hi everyone, have not been on for a long time. Hope everyone is ok. DD has been well most of the time but she has been having a cough for the last week and we are not sure what it is. Doc reckons it is a mild virus. Lots of viruses going around with quite a number of chemo kids being warded apparently. She doesn't have any fever or anything. But she does have watery poos, although we also have no idea what it could be. She is not having any stomach cramps. Doc says it could be the phosphate supplements she has to take so she has stopped it for now. Her platelets and neutrophils are also dropping a bit, but not so much that the doctors are worried. Thankfully we are not warded. She still needs weekly checkups and yesterday her calcium and magnesium levels were low so we had to stay in for a 3-hour infusion. Apparently it is common for cord blood recipients to have their blood counts start dipping a bit around this time, she will be Day +100 on Jan 5. Apart from that I have been struggling with major domestic issues.
In other news, am also finally feeling ready ttc (is that the correct acronym??? have not ttc since we had dd 9 years ago.) Have an appointment for a checkup tomorrow. As I mentioned, I have been out of it for 9 years...Just out of curiousity, and bearing in mind that dd is an extremely rare case of having developed two different types of leukaemias within a short space of time (and she was expected to have been cured the first time she had leukaemia as it was a low-risk type, well they were wrong as it turned out), is there some sort of prenatal genetic screening which I should undergo? Or something? I just want to make sure I am doing all the right things and covering all the bases before I begin so to speak.

Hi Mmmmmsleep, sorry you had to join us...but as minmooch says this is a great place to get support from others going through similar situations. Wow treatment in the US! That is indeed great news that they are offering you the best treatment available. We are also away from home, and I struggle a lot of the time with no family support, especially since I can't go out and get groceries (prepare for meltdowns when we run out of eggs!), and with dd on steroids she was constantly hungry and I was basically cooking her meals and disinfecting the house 24/7. She has just been taken off her steroids thank god, so her appetite has been decreasing although now I am worried she is not getting enough nutrition into her body!! sorry to hear that your ds has an infection in his hickman, dd had that in her chemoport twice previously. Luckily she didn't need to have her port removed or changed. Hope your ds gets out in time for christmas. And you have probably mastered the art of giving him his meds by now, but when dd first started treatment, we mixed hers with juice or yoghurt drinks. Bizarre now that I think of it, cos the hospital we are in now, does not allow yoghurt drinks while they are having chemo haha.

Yikes Twunk, hope Alex's head is better! Fantastic news re MRD!! Wow you have a new car! (Well not so new by now! Wish we had a car too. I very stupidly told dh we didn't need one when he offered to get one before dd had her sct, but i was only saying that in order to save money. Am beginning to realise that was very stupid of me and I desperately want a car now! It would be nice to be able to pop in and out of places quickly with a car, and not to have to wait ages for a cab during peak hours and also to be able to take dd for a drive around to see the xmas lights or whatever, when she gets bored at home!!

Unbuckle, hope Isaac gets his line and you get to go home soon too!

Trazzles, hope the MIBG goes well. You talk about feeling greatly upset about Joe missing out, I feel exactly the same way. I look at dd and I just feel so sad for the 'normal' childhood she has been robbed of. Playtime with her friends that she has missed out on. Holidays. Even daily trips to the shops or just going swimming. When I hear other people complain about their 'miserable' lives, I have no patience or sympathy at all. When dd was one year off her ALL chemo, I took her on a holiday to celebrate and we went to Disneyland Paris (we celebrated her birthday there and had a cake although I was a bit disappointed that I couldnt get a character to bring it out! lol) and then we went sightseeing in Paris, and we went skiing (our first time on a ski holiday! haha) and then we went to Dubai to stay with sil (she was working there at the time). We had such a lovely time, and I am so glad I went because at least we have that now. Having said that, now is an extremely difficult time for me right now cos I keep seeing photos of all my friends and their kids going on holiday and it's making me desperately sad and upset and frustrated and angry because me and dd are stuck in this shitty time. Even though I have no right to be. And dd is doing so well so I should probably be more positive and think that never mind, we can do whatever we want once she gets the A-OK from her docs. Bah.

Nocake, ooh hope he enjoyed meeting Father Christmas! Last week we had a surprise at the hospital. There was a Disney Musical show in town and Mickey Mouse and Goofy dropped by the hospital to meet the kids! A bit babyish for 9yo DD but she was still entertained haha. Apparently Beyonce also dropped by a couple of years ago and sang to the kids! Justin Bieber was in town a while ago, pity he didn't drop by also hehe.

Hi to Velvetbee, so sorry you have had to come here too. My dad had a high grade glioma in his brain. I was told that the prognosis is better with children, hope that your ds' is indeed just cyst activity.

Really really hope everyone gets to go home for christmas. Much love to everyone else I may have accidentally missed x

God I can't wait for all this to be over. Although it never really will be over will it.

hazlinh Tue 17-Dec-13 05:10:27

Sorry missed a few things I see!

Nocake!!! That's horrible!!!!! Hopefully his counts will go up soon and you can go another day.

Minmooch, dd got exposed to chickenpox twice while she was on chemo for ALL, and the doc gave her immunoglobulin shots each time.

Unbuckle, I had a mouse in the house last year and first I tried to get the cat to catch it, well that plan didn't work. In the end, I spotted it one day and I don't know what came over me, well I guess it was a case of 'NO WAY IN HELL ARE YOU COMING ANYWHERE NEAR MY DD' and I threw the catcage over it and ermm stomped on it til it died. Eeek.

Twunk, dd decided to keep her chemoport even after her 2 yr treatment ended. Which turned out to be a good thing in the end. sad

hazlinh Tue 17-Dec-13 05:57:24

Oh and meant to add Twunk, hope your dh is less moody now biscuit

Sillybillybob Tue 17-Dec-13 06:51:32

We get mice all the time due to one of the cats, but they're usually half dead sad. We had a very lovely one once and it took several days to get it to freedom but it managed to find the door in the end just as I was trying to pick it up with a towel!

Had one living in the roof once which was dealt with by Rentokil.

Other cat brings in worms(!!!!!!!!!) - garden, not intestinal.

Trazzletoes Tue 17-Dec-13 07:06:45

hazlinh I hope DD's feeling better soon.

Nocake so sorry about the failed plans. I hate it (as you well know!) obviously your child's health comes first but it just SUCKS! I hope you are able to get your money back. I don't usually play the cancer card, but for £400 I would! You never know, they may even allow you to go back another day instead if that's possible to fit with his treatment.

Re: lines, J has a Hickman line (thank goodness as it turns out he's scared of needles...) but even if he gets NED I think it stays in til he's 3 months clear. I long to see his little chest without it in. I don't see his NG tube now because it's always there and so visible but the line is, to me, a very visible sign of his illness.

min any update on the dog?

Ps. Yes I know I'm crap at name-changing!

hazlinh Tue 17-Dec-13 09:58:27

Nocake, actually Trazzles idea is a great idea. I would try and do that. When dd first had ALL, it was just days before our flight to London so I had to cancel it, and had to move hell and high water to get a refund for three tickets. Managed to in the end but it took a year and countless hassling on my part to the airline. They were cheap tickets on a budget airline so technically no refund was possible but I played the cancer card hard. Well it wasn't my fault we couldn't fly and there was no way we could have used the tickets in two years. When dd was diagnosed with AML, again unfortunately it was just a few days before our big holiday to Italy (God likes to laugh when I make plans). This time (thanks to the previous experience!) I had booked normal price tickets on a full-service airline so refunds were a lot easier.

hazlinh Tue 17-Dec-13 09:59:49

Thanks trazzles! she looks well at the moment, dont know if that is worse or better! no idea why she is having watery poos. the cough is better today though smile

Andro Tue 17-Dec-13 14:47:21

is there some sort of prenatal genetic screening which I should undergo?

I know there is mutated gene which has been associated with familial AML but it's pretty rare I think and unless there is a history of AML in your/your DH's family screening would be pretty pointless (I believe there is a pre natal screening available for at risk pregnancies but I don't know how wide spread/available it is), I don't think there is screening of any kind for other forms of leukemia.

Andro Tue 17-Dec-13 14:52:50

^^the best people to check with would be your DD's oncologist to find out if it's possible that there's a genetic component and/or try and find a medical geneticist and get their opinion.

Twunk Tue 17-Dec-13 19:34:01

I'm going to be ttc too Hazlinh! It's been 5 years just about, we were meant to be trying in the summer but...well that didn't work out.

I don't think there's any screening. I will be having every test going (I've only done the routine scans in the past). The hospital we're in now tends to cover a lot of those - it has high-risk birthing unit too. Hope not to end up here!

Final lumbar puncture under sedation done today! And final high dose MTX started so yay! Only 2 LPs to go - and both are under a GA. I won't miss them - it's quite the hardest bit of this sad as Alex looks completely out of it and then does cry in pain. He never remembers though thank goodness.

hazlinh Tue 17-Dec-13 23:32:26

Andro, Ah I see. Thanks. Hmm not sure if it was AML but one of my cousin's dc had leukaemia. and one of dh's uncles also had leukaemia. I did sort of raise the issue with dd's transplant doctor and she suggested I see this gynae, so am seeing him today. Googled him however and he seems to be an expert in infertility and ivf so not sure if the transplant doc understood me correctly. Although she did say that the gynae will have to see what dd has and then see whether there is anything he can do. Not sure if there is a geneticist at the hospital we are at now. There was a paed geneticist at the previous hospital and he did work with dd's previous onco closely.

Ooh Twunk, good luck. How exciting! Ooh yay re final LP and final high dose MTX! Time flies eh.

mmmmsleep Wed 18-Dec-13 09:38:28

hi hazlinh. .where are you? in uk you'd see a clinical geneticist usually first. good luck with it all.

hazlinh Wed 18-Dec-13 10:19:12

Hi mmmsleep, we are in singapore. Ok went to see him, he said there is no screening for leukaemia. He did a whole bunch of other prenatal blood tests...should i try and see a geneticist??

mmmmsleep Wed 18-Dec-13 10:24:57

you might want to see one if there is a strong history of cancer in your family as there are tests for some genetic problems but mostly just to tell you if you have it then you can use that information to see if you want to ttc. this is the route we're going down at the moment as for the genetic problem my family may have for me I could not ttc again as the chances of my next child getting cancer too would be too high to accept the risk. but that's a very personal decision. most leukaemias are not familial but you are obviously concerned so yes I think it would be useful for you to see a getetics consultant so you feel you have all the information you need to make choices. once you know you can never un-know. genetic testing is such a tricky area :-(

hazlinh Wed 18-Dec-13 10:49:53

Oh dear... sorry to hear that mmmmsleep sad yes i agree. It is tricky...sad

Twunk Wed 18-Dec-13 20:50:51

Alex was very poorly when he was born (infant respiratory distress syndrome followed by some seizures) and it took me a while to recover mentally from that. Having a child is a risk - it does open you up to potential heartbreaks - miscarriages, scans, scary shit - though obviously I still think it's worth it. Because the chances are everything will be fine, and if it's not we can deal with it.

Nocakeformeplease Wed 18-Dec-13 22:01:51

Well we're back in hospital too now. We spent the day at the Marsden for a long chemo and then half an hour after getting home, D spiked a temperature so we had to head straight up to our local hospital. Poor things little face just crumpled when I told him we had to go in - he was begging me to let him stay at home sad. He missed his first nativity today and will miss the school christmas party to tomorrow too, so gutted for him.

He's fine now he's here though, he just gets on with it bless him and I bribe him a lot! His temp has gone but he's started on the ab's and we will be in until they get the cultures back at least.

On the plus side I had some lovely company - by bizarre coincidence I was in the cubicle next to mmmmsleep! Thanks for the chat last night - was great to meet you and your lovely DS.

Lovely to hear from you Hazlinh. How is DD today? I don't know anything about genetics I'm afraid but I hope someone is able to put your mind at ease.

I hope I's new line is in and he's doing okay Unbuckle

Hope all okay with you twunk. Very glad to hear the last LP under sedation is out of the way now

I hope Trazzles and Min that you are both bearing up.

Love to anyone I have missed x

Twunk Wed 18-Dec-13 23:19:19

Oh sorry to hear that nocake - what a complete arse. I'm sure lovely to meet mmmmsleep though! I miss the opportunity to meet other cancer mums here - not knowing the language it's hard. Plus also we are all in very separate rooms and the family room is tiny.

I hope you are out ASAP. But it will probably be the usual 4 night stay....

mmmmsleep Wed 18-Dec-13 23:44:35

so glad we're out again. was lovely to meet nocake though :-) I should have left you the choc cake sorry! when they said we could go I packed so quickly it looked like they'd told us they were releasing a lion into the room in 5 mins ;-)

twunk where are you? that's tough not to be able to chat with other mums on the ward. mumsnet wins again I guess. I agree with your approach re having kids and accepting what happens and we've been pretty chilled out parents but I just can't get over a 90% chance of my next child having to go through all this if they inherit the gene but the whole having babies and genetic tests things are both v personal choices. and ours is v rare situation.just rubbish anyone has to deal with cancer at all.

I feel terribly ungrateful as I should be happy we're home but having a down day. ds' hair started falling out mon night so yesterday we shaved it and then today we found out he's lost some vision in his eye and we need to start the battle of getting him to wear a patch (neuro problems due to his tumour). they're such small things but just looking at my little boy whose lost weight with his line in his chest, shaven head and patch feeling angry at what this cancer has done to him and I know there's more to come. I do know we're lucky, I've already met people in much worse positions and a dodgy eye isn't a biggy in the grand scale of things it's just one more thing and I'm sure a good night's sleep will get me some perspective back!

Twunk Thu 19-Dec-13 08:39:16

Oh mmmmsleep it's not a stupid thing to worry about at all! In the first month of treatment Alex put on 3.5kg (from 16.2 to 19.7), had a huge face, started losing his hair and became utterly miserable - I knew it was the steroids and chemo but it was hard because he didn't look like him any more. It's a lot to take in.

And it's funny how our parameters change - 'normally' losing some sight would be a massive thing in itself. Have a Thursday hug ((((())))).

We also always leave the hospital as if a lion is going to be released. I think I am always slightly scared they will change their minds wink.

mmmmsleep Thu 19-Dec-13 08:44:36

wish there was a like button twunk. thanks x

minmooch Thu 19-Dec-13 09:48:33

nocake sorry that you are back in hospital but how nice to meet mmmmsleep. Hope you are back home soon. Xxxx

I still find it hard 2 years on that my son has to miss so many things, even things like the carol concert because he is too tired/disable/sick/in hospital/someone else is ill. Watching his friends take their driving tests, drive to school etc. every little thing is a reminder of what my son has missed out on, is missing out on and will continue to miss out on. One of my major fears is that he will die before he has had a chance to take a girl out, share a first kiss etc. it makes me incredibly sad that he can't do these normal things.

And mmmmsleep it is a big thing, sight problems. It's yet another thing our children have to put up with. I feel so utterly fucked off with people saying to me to be grateful he is still here. Of course I'm grateful he is still here but what a price he has had to pay, two years of surgery, treatment, sickness, disabilities, having to be in a wheelchair, not being able to do things on his own, not being able to get anywhere on his own. Having to have his mum help him get dressed. Even using the disabled toilets at school is something I can't get used to for him. Getting the wheelchair out of the car, fixing it together everyday, doing it in the rain so the seat doesn't get wet, getting soaked through myself so I keep my son as dry as possible. Pushing the wheelchair up hills because my son can't walk up them. Seeing my son crawl up the stairs because he is too tired to walk safely up them and at 6ft 1 I can't carry him. And the thought of a stena stair lift filling us all with horror. Wiping my 18 year old's bottom after he's done a poo as he's frightened of there being blood. The fact that we can't go out walking the dog together as easily. My son feeling the cold so much and wrapping him up in blankets, scarves, hats and gloves. Having to help in in and out of the bath and shower, and not leaving the room if he's in the shower in case he falls. Constant worrying the whole time.

His friends have gone off on the CCF winter camp. The thing my DS loves to do and he can't. He has barely spoken the last four days and I know it is because he is struggling with everything. How his life is not his life anymore. And I can't make it any better for him all I can do is help him through it.

On a positive note my son has just gone 9 days without being sick. 8 whole days in a row - this is the longest in 2 years. And it posses me off that the things that are positives are still pretty shit anyway - most people don't have to worry about their child being sick every day.

Still trying to be positive (not sure it's working) is that the dog does not have a tumour in his foot - just an infection between his pads. I'm tired always thinking if the worst case scenario. God this is all so interminably tiring.

Ok, kick up the backside time and time to get in the shower, walk the dog, find my Positive Mental Attitude and face another day.

This was meant to be a supportive post but had turned into a bit of a rant. Let's hope nobody wishes me a Happy Christmas or says cheer up it might not happen might just get a mouthful from me!

mmmmsleep Thu 19-Dec-13 23:12:21

oh minmooch thank you for your support and I wish I could give you a massive hug. it just isn't fair. I'm totally with you on the people that try the "smile it might not happen" line. last week a bloke signed through his car window for me to smile....he was lucky he was in a car! I was on my way back from ds chemo with him crying in pain in the car but then jolly jimmy didn't know that did he :-/

amazon man today very sweetly offered to carry the heavy parcel in for me as he didn't want me carrying it "in my condition". I just laughed as I took it off him and reassured him it was just my stubborn baby fat. there was a time it would have bothered me. now it truly doesn't matter. bigger fish to fry than my belly. I had thought the stress might shed a few pounds but it appears the cake and chocolate diet is a fair match ;-)

onwards and upwards. ... and have a blanket of mumsnet love to wrap yourself in minmooch xxxx

minmooch Fri 20-Dec-13 09:17:23

Thank you mmmmsleep. Xxxx

I had a little smile from DS last night just before he went to sleep - he hasn't smiled in a few days :-( - and he said 'maybe I'll feel a bit better tomorrow'. It makes my heart break. He was meant to go to his Dad's house last night and decorate their Christmas tree there but he just wasn't up to it. My other son went but I don't think he was interested in the tree!

Hope everyone is holding up ok. I think Christmas is particularly hard as everyone is celebrating and there is this pressure to make everything lovely and exciting. And I can't let myself enjoy any of it (not that anyone else would know, especially the kids). I suppose it's a form of punishment to myself for being healthy whilst my child is so ill.

Thank you for providing a place where I can let out my thoughts and fears. Being on my own through this means every night I am left to my own thoughts.

On a lovely note though I hope that those of you TTC are showered by fairy baby dust and are able to add to your precious families soon. It is a daunting prospect but we've all faced daunting with our ill children and a new baby is like a little light of hope and happiness. Xxxxx

Nocakeformeplease Fri 20-Dec-13 22:59:48

We got out last night about 7, so a relatively short stay - yah! Seems as though it may just have been a reaction to the chemo this time. DS is still a bit sicky but otherwise fine and has been hindering helping me clean today grin

mmmmsleep we all understand what you're saying. They are not stupid things to get upset about at all. Of course none of them individually are a big deal in the scheme of things, but its what all these little things represent. I think we've all struggled over the hair thing - it's the one thing that screams 'cancer'. I hope you managed to get some sleep and lots of cuddles with your babies.

Hazlinh how is your DD?

Oh min rant away. We're always here to listen, I just wish there was something practical we could actually do. What you and your family are having to endure is simply beyond reason. The one thing I am grateful is that DS is still young and so doesn't really realise the seriousness of his condition or when he is missing out on things - he still at an age where a new car or dinosaur fixes most things. I know it's not that simple for teenagers. My heart aches for your poor boy, its all just so bloody wrong and unfair. I hope with all my heart that he does feel better tomorrow and every day after. And I think you are just amazing - you really couldn't do any more than you already are for both your sons and despite everything I am sure that they both know they are surrounded by love. I hope the all come across the way it was meant, I'm rubbish with words x

Hello to Twunk, Unbuckle, Trazzles, Stinkyfeet and anyone I have missed.

mmmmsleep Sat 21-Dec-13 00:05:05

yay glad you're out nocake :-) xx

Trazzletoes Sat 21-Dec-13 06:46:50

My post is about to be extremely Trazzle-centric: apologies...

J's consultant called last night - no evidence of cancer on his scans!!!!! I know it can change in a heartbeat but right now, he's ok. We've waited so long for this day. All the other families we know have had NED much much earlier in the treatment and we were so scared but, for the moment, it's gone. wine cake

Trumpton Sat 21-Dec-13 07:03:23

Oh Trazzletoes I have followed Joe's journey and your wonderful writing.
There are no words to describe the joy in my heart for you. The best ever gift.

Nocakeformeplease Sat 21-Dec-13 07:52:53

Oh Trazzles, that is absolutely wonderful news smile smile smile

This has made my day. Much love to all the Trazzles, hope you have the best Christmas ever xxx

mmmmsleep Sat 21-Dec-13 13:46:04

congratulations trazzles that's wonderful news! what a fab Christmas present!!! x

minmooch Sat 21-Dec-13 17:54:20

Oh Trazzles what wonderful, wonderful news! I have shed some happy tears for you and your whole family. That truly is wonderful news and hopefully you can all celebrate Christmas properly xxxxxxxx

Twunk Sat 21-Dec-13 22:58:47

smilegrinsmilegrinsmilegrinsmilegrinsmilegrinsmilegrinsmilegrinsmilegrinsmilegrinsmilegrinsmilegrin

Trazzletoes ... There are no words. Just the best of gifts. So very happy for you.

Love to all of you on this thread.

Xxxxxxxxxx

unbuckle Sun 22-Dec-13 13:14:10

Tried to post earlier but it disappeared. Wonderful news and a perfect gift. smilesmilesmilesmilesmile

Andro Sun 22-Dec-13 21:16:54

Trazzletoes - what a lovely Christmas present for you and your family!

Twunk Mon 23-Dec-13 16:48:56

Guess where we are?

24 hours only I hope - Alex has a very painful mouth and is a bit out of sorts so he's getting a drip and some intravenous paracetamol. Haven't wrapped a single present as mum and dad had just arrived with most of them!

unbuckle Mon 23-Dec-13 21:00:52

noooo!

I am sure the staff will be as keen for you to go home as you are, almost.

Twunk Mon 23-Dec-13 21:36:38

I dunno Unbuckle we are so fabulous I cannot imagine they would let us go unless they had to wink

Just given him tramadol hoping that does the trick with the pain. He wakes up crying out it's horrid sad

Trazzletoes Tue 24-Dec-13 07:28:42

Joe's just got a fever sad someone please cheer me up by telling me how much better Christmas will be in hospital rather than at home.

unbuckle Tue 24-Dec-13 08:38:13

Oh trazzles, how disappointing. Fingers crossed the fever has gone by now, do you have the one hour rule?

Isaac is howling downstairs, will be too scared to touch his forehead today.

Trazzletoes Tue 24-Dec-13 09:20:33

No 1 hour rule here. If he gets a temp above 38 it's straight in for cultures etc and antibiotics. I'm desperately trying not to get upset. I know it's 1 day. I know it's 1 day that can be postponed. But I don't want to spend Christmas in hospital.

Twunk Tue 24-Dec-13 12:36:21

Trazzletoes I will be there with you in spirit - Alex has mucositis and looks like we will be there tomorrow, though there's a small chance we can go home in the afternoon.

Everyone will make the day special Trazzle - sending you much love xxxx

minmooch Tue 24-Dec-13 14:24:51

Twunk and Trazzles I hope you both manage to get home for Christmas but if you don't then it will be made very special, especially on the children's ward.

When we were in with Will there were so many visitors, celebrities popping in. The one all the mum's liked was the on call firemen. Nice bit of eye candy for us!

Twunk I hope Alex's mucositus clears up quickly. My Will was very, very poorly with it. Xxxx

Wishing everyone a peaceful Christmas. Let's hope we can all find a little joy during the day xxxxxxx

Twunk Tue 24-Dec-13 15:30:22

Doc is saying it isn't too severe and he's seen much worse - I hope that's true (though my god the poor children who have it much worse - poor Will).

I've just finished wrapping the presents and about to head back to the hospital (DH is there at the moment). DS1 is hyper. I so wish we were all together, but it is what it is.

Nocakeformeplease Tue 24-Dec-13 21:50:57

Oh Twunk and Trazzles, so sorry to hear you're in for Christmas. Hope you still manage to enjoy the day.

D's temp has gone up to 37.7 - he's normally around 36 so high for him. Have a horrible feeling we may be in soon too sad

Trazzletoes Tue 24-Dec-13 22:53:37

Oh no nocake the waiting to tip over 38 is awful sad

Twunk so sorry you are in.

By some miracle, Joe wasn't admitted! That never happens... We were sent home with a suspected virus. He's on regular paracetamol but 6 hours after a dose his temp is still low 36s so might skip the dose in the morning and see where that leaves us. Obviously waiting for any cultures to grow but for the moment he's tucked up tight in bed, scared that Santa might not come because he threw a massive paddy this afternoon sad. I've tried to explain that he's been such a good boy all year and Santa doesn't just look at one day... Hopefully next year there will be excitement. Today he just seems to be over-excited, knackered and a little under the weather.

Trazzletoes Tue 24-Dec-13 22:56:01

Twunk have I told you how bad Joe's got? He couldn't speak because of a giant scab that totally filled the roof of his mouth and then his mouth sealed shut apart from a tiny hole to breathe through <gruesome>

I can talk about it flippantly now...

Hope DS is getting through it ok. It's a nasty nasty nasty complication.

Twunk Wed 25-Dec-13 08:31:28

Oh that was bad! shock Poor joe.

Alex is much better than that. He can talk and drink, just not eat really.

Good news is that it's improving. Fingers crossed we can go home.

MERRY CHRISTMAS!

I'm sorry we all need to post on this thread, but not sorry I've got to know you this year. If that makes sense. Big hugs to you and yours everyone xxx

unbuckle Wed 25-Dec-13 10:32:59

Merry Christmas to everyone. We're at home - Isaac had a bit of a vomit this morning and is snotty, but is holding back temperature-wise. Glad you are at home trazzle, hope you are released later twunk, and hope the temp stays below the magic 38, nocake. Thinking of you all, and hazlinh, stinkyfeet, mmmmsleep, minmooch, velvetbee, p4b and anyone else! Xxxx

Twunk Wed 25-Dec-13 15:13:26

We're home. Having Christmas dinner in a minute. Hope you are all home too.