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.

Aghhhh just lost a long post.

Kinky - my thoughts are with you and with the family that lost their little one. So sad xxxx

Sorry I have not been back to write - I find it hard to belong to a thread about children with cancer - my son has cancer, its been diagnosed for nearly 6 months and yet at times I still find it hard to believe.

My DS has had a rough few weeks with sickness and exhaustion meaning various trips to local hospital for rehydration, platelet and blood transfusions. The exhaustion is just overwhelming for him - we were told to expect this after radiotherapy - but it is shocking to see him wiped out completely.

GFR results were not good, kidneys are not repairing very quickly so it means one extra chemo is out. Maintenance chemo starts Monday and I am dreading it for him - obviously it wont be as harsh as previous chemos but really just want to let him rest before it all starts again.

Good news is that for the last 3 days he has only been sick twice a day and managed to eat a little something in the evening.

Bad news is that he has had some tingling and numbness in his cheek. Consultant says this could be side effect of radiotherapy but also could be something not good. MRI is on Monday as well, first one after radiotherapy. Consultant has said we may still not see much progress from last MRI and that the one in 6 months will be more important. It all seems to be never ending. I just want to be able to say to my son - there, we've done it, we've beaten it, all the shit stuff you have been through has been worth it.

Bad news on the husband front - he has admitted to not being able to offer me emotional support, hating the financial implications and says he does not love me. Nice. House is going on the market on Monday, solicitor has been instructed. Divorce on top of this is not going to be easy but I dont want my boys to live in a home where husband is not supportive nor loving nor very kind.

Last weekend the boys went to stay with their dad for 2 nights. When I went to pick them up it was like I was struck in the face by how ill my DS looks. I suppose being with him daily I get used to it - then a 2 day break made me see the reality all over again.

Its all so fucking heartbreaking and my thoughts are with each and everyone of us going through this with our children.

We started maintenance chemo on Monday and had MRI scan. One chemo given at hospital, other tablets taken at home. DS was complaining of terrible tummy ache close to midnight and when I got him up to go to the loo he fainted. Luckily I was supporting him so was able to gently lower him down bit very frightening as he is over 6 ft tall. He seemed fine the next day but temp hovering a little high all day then went over the magic 38 :-(. So we have been in local hospital since. I am very tearful and want to weep every time I look at him. It's so fucki g unfair - he's only 16 and I want to scream and shout and rant and rave for him - but I am too exhausted. If only I could swap places and do it all for him. I would change places in a heartbeat if it meant he could have a normal childhood and life. Aaaarrrrgggghhhh.

Shit, minmooch, I'm so sorry about all of the additional stuff you are having to deal with. I've witnessed a couple of husbands being absolute gits since we started this journey in January and it never fails to amaze me how heartless they can be. I'm wishing you lots of strength and love through this xx

We are doing ok at the moment frantically touches wood DS finished his consolidation block of treatment and we are now into interim maintenance and have regained a bit of normality. Last night was our 9th night in a row at home and it was amazing! Consolidation knocked him for six and until last week he had had an ANC of 0.00/0.01 since the start of March. This meant we were in and out of hospital constantly with high temps which - as you all know - is very draining.

I'm so so angry that we are all having to go through this.

Hi everyone. Just wanted to check in and say I'm really sorry to hear of all the problems so many of you are having right now. Minmooch I am staggered at your husband's behaviour at a time like this. I hope your DS got good results from his MRI and is home by now.

(waves to Hammy, really lovely to hear your update)

Kinky I hope you are feeling better and your DD is having a smooth run of things for a change.

DD loved her holiday so much that I kept finding tears in my eyes to see her looking so happy. Poor pet managed to run into a door handle at after school club the other day and is now sporting a very impressive black eye! Talk about coming back to earth with an all too literal bump! Luckily she sees the funny side of her panda impression .

Minmooch I hope he's back out now. I know how you feel when you look at him. It is so incredibly unfair. You know I think your H should be bloody ashamed of himself. I sometimes wonder what karma is playing at.

DD has bug at moment and now I have it too . They've made her regular chemo dose smaller because her counts keep dropping. I'm not sure how I feel about that.

We've lost another child; another with ALL who relapsed and had bone marrow has just been given 6 months; another has relapsed. It's endless shite, combined with trying to balance 'normal' life. Sometimes I worry I'm going a bit mad. I was always someone who over-thought everything, so being put into this situation has made me a million times worse.

I've updated blog (shameless plug). Check out the guardian article I put on yesterday about GPs missing cancer in teens. Nearly every parent that I've met had to fight against the neurotic accusations to get their child referred by a GP. I took her to hospital myself after 4 fruitless visit to mine, even then they still took 2 more months. It's simply not good enough. I know many times it won't be, but for the few times it is cancer, it should be caught quickly.

Link here to blog: theacutelymphoblasticleukaemiadiary.blogspot.co.uk/

I hope the fact it is quiet on here is good news.

I'm having shitty time with life again, though DD is doing okay for a change.

So, I have written a more positive blog post now about how I think the internet has helped her. I'm sure other parents of cancer patients will probably find this is the case too.

It's nice to enjoy her being on the internet rather than telling her to step away and go outside for some air!

theacutelymphoblasticleukaemiadiary.blogspot.co.uk/2012/05/internet-empowers-daughter.html

At the moment things are fairly positive for DS (diagnosed with CML in November). At that time it was touch and go whether he could go back to university and continue his course or would have to take time out and return the next year.
So far he has responded to treatment as hoped and feels much better generally. Before diagnosis he hadn't realised that the tiredness he had felt for the previous year/two years was anything worse than normal. Now he is better he appreciates how bad he was feeling.
He's hoping to still be able to go on a year abroad, next academic year, as part of his course and at the moment, that seems completely possible.
Thinking of all of you with DCs who are having to go through really difficult times at the moment.

That's good news Lily. I wish him all the best for his studies; I'll bet he can't wait for a year abroard .

Bump - logging in to check everyone's OK (ish) and to let you know I'm thinking and praying

All good here.

Just wanted to remind that the Great Ormond St doc is on BBC2 at 9 tonight, focusing on the oncology dept. I know it'll be a bit close to home for some, but interesting nevertheless.

Watched that doc last night (taped it), and it reminded me of so many of the children we know.

Life is truly shitty here at the moment. I can't talk about it here for legal reasons, which should give you an indication of how crap it is.

DD is not too bad, but on lower chemo dose. So, now her counts are higher and doctor is worried it might now be working. Before, her counts were so low she had to be taken off it.

Car has died; waiting for the dreaded phone call with the cost.

I'm such a misery. On a plus, we did race for life yesterday. DD walked a bit and I wheeled her around the rest. I think we raised around £800, which is good going.

I hope you are all okay .

bump

How are we all?

No news is good news?

DD perky at the moment, due to lower chemo. Hopefully she will be at school tomorrow.

Hi Kinky, so glad to hear dd is feeling better now . How are you? Have you been able to get to work much?

All good here. Ds goes in for chemo on Wed - his 4th cycle of the 8, so we're whizzing through! Bloods all fine. He's been going back to cubs and is even going out in the playground at break at school. Exercise and fresh air definitely doing him good!

I'm sure he's put more weight back on as well - we'll find out on Wed.

Hope everyone else is OK and all the children are staying well.

That's great Stinky; he sounds like he's doing fab!

There's some stress with work that I can't talk about on here. Suffice to say, that has made me much more anxious.

Sigh.

I must be due some good luck soon .

Hi Kinky, how are you doing?
I am a little better, getting some help from an unexpected source psychologically but I have slept a whole night this week! Feel like a new woman! :-)

A full night's sleep? I have no idea what that is...

I could do with an unexpected source to help me!

I'm pleased you're feeling a bit better though Queen .

Hi, all!

Just dipping in and out.

DD is Day 17 post cord-blood stem cell transplant for AML (translocation 6,9; mutated FLT3).

Results of chimerism test won't be back to Wed. so we'll then know if and how much the graft is working.

The conditioning chemo, being her 5th round of 7-10 day blocks of intensive chemo since 30 Nov., hit her VERY hard. She got a viral infection in her throat, typhilitis in her small bowel, fungal infection, mucositis and her entire gut is very very inflamed.

She has been having sips of water, about 200mL, for a couple of days now and so of course, the lazy arses tries to put all her drugs back to oral.

Cue cramps and vomitting. So consultant changed them all back except the one to stave of VOD, which has to be oral.

She did NOT sleep for over a week. Why? Morphine. She's now resistant to it. But they kept her on it for days until introducing ketamine and several more before ramping up the ketamine.

She itched all over, she hallucinated and she got zero pain relief.

Oh, I had to tell them NO STUDENT NURSES, either, after I got a) one unsupervised who diddled with her syringe driver b) one who offered her juice when she was nil by mouth c) one in to read her 8 drips.

She's also in strict isolation due to infection risk so that means they can't come in, either.

Hi expat It's so hard in hospital when you are under the 'care' of others who don't seem to know what they are doing/give conflicting messages all the time. That was the hardest thing for me when she was in - trying to be there all the time because if I leave, and someone else is there to give me a rest, they seem to change everything.

One time, she was really ill. I came home for a break and left her with her dad's parents. They discharged her! When she arrived home she couldn't walk and had a fever temperature. Needless to say, we were back an hour later . Because DD is on autistic spectrum, she doesn't communicate clearly how she feels. The consultant on rounds (not ours) asked if she was okay. She said, 'I'm fine', which is what she always says, and so they sent her home. Jeez.

We have had many great doctors and nurses, but we've also had some real issues.

Good advice for recently diagnosed is to keep a notebook of what you are told each time you speak to someone. This helps you to keep track, pass over to others should you need a break, and, unfortunately, formulate a complaint or report to PALS should you need to.

Happy half term .

And , just because we can.

Hi everyone, hope you are all had a lovely weekend. DD got the all clear in her last scan so that takes us to a year post treatment. I was so anxious and I don't see how it will ever get any easier coming up to scan time.

kinky hope that things are going a bit better now

tough I'm so pleased the scan was clear, one year OT, that's fantastic!

expat I'm so sorry to hear about your DD's troubles with infection and pain control. We struggled to convince them to give our DD pain relief too and it's completely unacceptable.

I hope things are going well for everyone else and your kids enjoyed the weekend.

Hi all, I hope you are all doing ok.

We have just enjoyed a lovely few weeks at home on interim maintenance and were due to start the delayed intensification block on Monday, but DS has randomly acquired chickenpox so that is on hold and we are in hospital on IV aciclovir for the next few days

We also had a massive cock up which saw him receiving a half dose of his mercaptopurine for about 4 weeks. Fortunately he is ok, but Im pretty angry about it and it hasn't helped with the anxiety levels.

We also had a very good review with the main consultant so are feeling a bit calmer now. For a few days anyway!

Lots of love to you all x

I am very late to this thread but wanted to say I have a son with ALL (Acute Lymphoblastic Leukaemia). We are 2.5 months away from completing treatment.

He has a form of albinism, is partially sighted, learning difficulties and has autism.

The good thing is he has never really understood that he has cancer and I'm pretty grateful about that to be honest.

I'll have a good and proper read of this thread tomorrow. Just wanted to say hugs to all.