Children with Cancer

[Twunk]

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.

[Twunk]

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]

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]

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]

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 :( 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 :(

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

[hazlinh]

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 :(

[Twunk]

Oh heartbreaking she thought she'd done something wrong

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]

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]

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]

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

[hazlinh]

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]

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]

unbuckle

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]

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]

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

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 . 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]

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]

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

[Trazzletoes]

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]

Thinking of you today hazlinh.

[Twunk]

Yes Hazlinh I will be thinking of you. xxx

[minmooch]

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

[Trazzletoes]

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

[Nocakeformeplease]

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 . 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 . 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]

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.