Children with cancer

[KinkyDoritoWithFairyLightsOn]

Hi all

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

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

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

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

Best wishes to all.

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

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

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

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

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

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

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

DD is once again neutropenic. Pffftttt.

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

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

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

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

SHE WILL STAY WELL.

That is all .

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

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

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

Great news Hammy

Busters great all was well with check up.

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

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

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

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

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

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

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

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

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

Wishing you all a good week!

ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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

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

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

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

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

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

Toughday - any news yet?

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

Thanks all.

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

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

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

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

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

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

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

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

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

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

We still haven't heard anything from dd's scan, so i'm relying on the no news is good news, last year when her tumour recurred we heard within a week so it should be fine.

A few weeks ago we had her hearing tested and they thought that dd may be partially deaf in one ear. I wasn't too worried as a one stage during her chemo they told us she was completely deaf in that ear and the next appointment her hearing was back again . We had another appointment last week which concurs that she has lost a lot of hearing in that ear. The consultant said that it was probably the radiotherapy that caused it but as it was needed to save her life its a small price to pay. They are just going to review her every few months and then maybe a hearing aid when she get older. Don't know how I feel about it, I agree with the consultant and I know we are very lucky to have her here with us but it'll just take me a couple of days to accept it.

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

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

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

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

Also Clic Sargent who are great.

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

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

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