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Children's health

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Original poster

Children with cancer

997 replies

KinkyDoritoWithFairyLightsOn · 22/12/2011 09:31

Hi all

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

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

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

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

Best wishes to all.

OP posts:

Nocakeformeplease · 05/08/2013 08:19

Thank you, thank you tabitha. I desperately need to hear stories like that at the moment. It's made me feel much better x

Twunk · 05/08/2013 09:49

(((((Nocake)))))

I too am plagued with "thoughts of the worst" and I also feel a weird mix of panic and guilt. At night I have to distract myself until I am so tired that I can't keep my eyes open, so I don't lie there thinking.

DH gets annoyed with me, but it's protection I think. Once you get through the operation I think you'll feel a bit more positive, just as I will on days 8 (tomorrow), 33 and 79 when there are important tests.

Twunk · 05/08/2013 09:52

Also ((((hazlinh)))) what a lot you are going through. It's great there are so many matches, though I have no idea about the age of the doners. Logically speaking a stem cell is a stem cell but I can imagine you want the youthful stuff in preference. I'm sure the doctors will discuss it with you xx

Thank you for your kind words.

Twunk · 05/08/2013 09:54

I've been googling a bit too. I've decided I need a course in genetics. It's impenetrable! But I prefer the doctor sites to the patient ones. I know I must stop, but I'm the sort of person who, if I have to know something, I want to know everything!

Nocakeformeplease · 06/08/2013 22:06

DS's dad gets annoyed at me at times too as he is very different in his way of thinking. To be fair he was very good at the weekend though when I was particularly low.

Most the time we all cope better than I could ever of imagined. The fear never completely goes away but somehow we manage to push aside and get on with things. We still have fun and laugh lots - something I would of imagined impossible in the first few days. It's just every now and then, it starts to overwhelm me and I feel almost paralysed by it. I'm sure you're absolutely right that I'll feel better once the operation is out the way (please god don't let there be any complications or anything unexpected discovered).

I have decided for my own sanity that I must force myself not to google and instead am focussing on what it says on the Royal Marsden hospital site (where DS is being treated) about Wilms - "the prognosis is good for all children whatever their tumour stage, and most children are cured". When i feel panicky or wake up in the night, I literally repeat it over and over in my head until I calm down. Ridiculous I know, but it actually seems to work a little.

I really hope day 8 went as well as could be expected. Have just posted on your other thread, but I'm so happy you are all home now.

Hope everyone else is okay x

unbuckle · 07/08/2013 22:33

My baby son was diagnosed with a wilms a month ago. I wish no-one else had to go through this but equally i am so glad to have found you all. He's also being treated at the Marsden.

Nocakeformeplease · 07/08/2013 22:42

Hi unbuckle - I'm so sorry you have to join us, but hopefully we can all help each other through this.

How old is your DS? FRom what I've read, younger children (esp under 2's) seem to respond very well to treatment for Wilms. Do you know what stage it is at? How is he coping with the chemo?

We will be at the Marsden this Friday for chemo 6 - it was supposed o be the last one pre op but as his op is now not until 2nd Sept they are most likely king to give him one or two Vincristines in between.

unbuckle · 07/08/2013 22:44

He is 13 months. His cancer is bilateral so stage 5, although today on the ultrasound they couldn't really see the left tumour. He's had 4 weeks of chemo, normally on Fridays too.

unbuckle · 07/08/2013 22:46

Forgot to say, he is coping amazingly, you would never know he is ill. Thank you for asking.

Nocakeformeplease · 07/08/2013 22:57

I'm really pleased he is tolerating it well. DS reacted quite badly to the first two sessions ands we ended up in hospital for 15 days. Touch wood he's been fine since then and bar his gorgeous bald little head, you wouldn't know he was ill either.

I might see you in Friday then!

unbuckle · 07/08/2013 23:15

Yes, i'll let you know! My son still has lovely curly hair, but not for much longer.

unbuckle · 07/08/2013 23:15

Yes, i'll let you know! My son still has lovely curly hair, but not for much longer.

Twunk · 08/08/2013 13:08

So sorry you have to join us unbuckle

Alex has lovely hair, I wish it wasn't going

Just read "Why, Charlie Brown, Why?" and felt the need to cry.

unbuckle · 08/08/2013 19:42

Hope you are feeling ok now. I tend to feel like I'm being squashed when things get to me.

Twunk · 08/08/2013 20:02

Yes it can be very claustrophobic for me. When we got the "formal diagnosis" I just desperately wanted to get outside so I could breathe. We were all crowded (me, DH, consultant, junior drs, nurse) into a tiny room and I just couldn't cope. Should probably have said I always need a clear route to a door. My fault I sat in the corner.

unbuckle · 09/08/2013 08:23

I think you'd probably have felt like that wherever you were, it's such an awful thing to hear - beyond even my worst imaginings. We didn't have a diagnosis meeting, it was obviously cancer from the second i took him to the gp and they'd given us all the information before the biopsy results. We had a tough night as Isaac sleeps so badly now, but maybe we'll all have a better day today.

Twunk · 09/08/2013 11:55

Probably. I knew already he had cancer too - had known for 4 days.

I hope you have a better day and that Isaac sleeps a little better tonight xxx

unbuckle · 10/08/2013 13:33

Yes, things are better today. The marsden confirmed his tumour is shrinking, so he's staying on the same chemo, which is great as he's tolerating it so well. Strange how your idea of what is great changes! How about you today?

Twunk · 10/08/2013 15:52

Yes it has changed a lot! An ordinary day is a good one. Spent all of yesterday at hospital having expected a 2 hour visit. Alex needed a blood transfusion - and now he is so much better!

That's brilliant the tumour is shrinking. We also heard that his prednisone response was excellent and we're chuffed about that.

unbuckle · 10/08/2013 17:20

Blood transfusions sound really alarming, don't they- i was amazed at how straightforward they are. Sounds like good news all round!x

Twunk · 11/08/2013 19:38

Yes I'm sure I was expecting more from a blood transfusion.

I've been encouraging people all around the world to give blood, and join the bone marrow register. It's the least I can do.

unbuckle · 14/08/2013 20:46

It's taken 5 weeks but his hair is thinning now. Don't know why but i'm not feeling great about it. I guess it is the constant reminder.

Nocakeformeplease · 14/08/2013 22:17

I think it makes it more real when they start losing their hair doesn't it

I'm glad it is good news so far for both of you though.

DS was there for a CT scan today ahead of his surgery in a few weeks. He was like a boy possessed when he came round from the GA - yelling and lashing out at everyone - the poor nurses will probably run a mile when we arrive on Friday! We should find out the results on then - I'm terrified

Twunk · 14/08/2013 23:03

The no hair - it screams cancer doesn't it? Apart from the fact that Alex needs a pram sometimes he looks fine (well he also has a HUGE belly from the steroids and the food baby he's making).

Everyone will know. Even strangers. That I find hard.

Oh nocake that's exactly how Alex was yesterday. He was simply furious when he woke up. I had to climb into bed with him, and stay there for three hours until his heartbeat stabilized.

Fucking scary time this is. Stepping off a cliff. You think "he's probably alright but some children aren't and what if he is one of those?" And round and round and round it goes.

The treatment for Leukaemia is chemistry. How strong he is doesn't matter - how strong I am doesn't matter - even the doctor's cleverness isn't as important as factors over which we have no control. Cytogenetics and response are the prognostic factors.

It does my head in

Twunk · 14/08/2013 23:05

I will very much be thinking of you on Friday Nocake (((((un-MN)))))

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