Children with Cancer

[Twunk]

The thread you neither want to join, nor leave.

We send our love to Minmooch whose son Will sadly died this week. Min, we hope you feel able to contribute to this or future threads when you feel able.

My son Alex, 4, was diagnosed with Acute Lymphoblastic Leukaemia on 26 July last year. I don't think anything can describe that moment when your world falls apart. You think of suffering, pain, and the very real possibility you may lose your child. Mumsnet has been a wonderful source of support and I have "met" some lovely people through these threads.

If you are in the same situation as us, or wish to show support please do join us. Sometimes people have questions on how to support a family who have just received a diagnosis - we are very happy to help.

Much love to all xxx

I hope everything went smoothly today Brave. Thinking of you xx

I hope you got a few answers today missmargot and that you are bearing up x

D is in next thurs to have his port out. Although the op itself is minor, it feels to me a very significant moment. Please god let it be the end of treatment forever for both our gorgeous brave boys unbuckle

Hi to everyone else x

Brave I was thinking of you today, how did it go?

Nocake that is a milestone, I hope this is the end of treatment for both of you.

Our diagnosis was confirmed today, the good news is they are confident it can be successfully treated and it is only in his right eye. Unfortunately he has no vision in that eye and won't have again. His left eye is good and his overall vision is good.

We have a difficult decision to make. His tumour is very large and usually they would remove the eye rather than treat with chemo, however they feel we would have a shot with chemo. Chemo would have an 80% chance of successful treatment with a 20% chance of chemo failing and the eye being removed.

If we had surgery to remove the eye next week there is a 90% chance no chemo would be needed. The artificial eyes are amazing and so realistic, they even move with the other eye.

My gut feel is not to put my baby through chemo unless we have to and that an artificial eye is very manageable. But would I still feel this way in 10 years time or would I regret that we didn't try? But then he will never have vision in that eye even if he does keep it.

Very hard one. What's the chemo course like? Alex wasn't hit especially hard by the intense chemo (he will be on oral chemo for another 11 months) in terms of direct side effects. He did get very poorly from being neutropenic.

So really it depends on the length and intensity of the course I think.

((((((Hugs)))))))

Missmargot - what a hard choice. I'd second asking about the nature of the proposed chemo. I's preop chemo had no side effects at all. But the high intensity chemo took over our family life and left him profoundly neutropenic half of the time - i'd think carefully before going through that again if there's an alternative.

Nocake - hope the port removal goes well and is d's last general! Obv i's came out early due to infection - but I have found it very emotional and not in the positive way i'd hoped. I don't think i'm ready for his chemotherapy to end.

The course has been described as 'moderate' with a high risk of being neutropenic and realistically one of us needing to give up work for six months. On the plus side he is systemically well which is an advantage and the chemo wouldn't be as aggressive as some, but it would be six cycles of intravenous chemo.

The oncologist spent nearly two hours talking through the chemo with us, overall it would be more intensive than I had expected it to be.

DS had pneumonia at birth, is asthmatic and very prone to chest infections. This wouldn't stop them going ahead with the chemo but realistically he would be even more vulnerable to chest infections which make him so poorly already.

What I keep coming back to is that with surgery there is only a 10% chance of needing two different types of treatment (I.e surgery and chemo) but with chemo that chance doubles.

Can I put my baby through chemo knowing there was another option? Also, with surgery they will be able to analyse the tumour and identify whether he would pass the risk of retinoblastoma on to any future children and also whether he is likely to be more susceptible to other cancers in the future, so overall we will have more information.

You can see which way I am leaning but DH is leaning towards chemo and neither of us wants to persuade the other. But we need to make a decision this morning. I actually wish we didn't have a choice as we will forever second guess ourselves and wonder 'what if'.

Thanks all, sorry just realised that I was probably a bit misleading in my last post. He's actually going through high dose chemo this week in preparation for transplant on Monday. I tend to refer to the whole process as "transplant". So we're on day -6 now and he's quite miserable. Feels like we're on the countdown to something awful....praying it can't be as bad as I imagine .

That sounds like such a difficult decision missmargot. Not sure if it helps but DS coped reasonably OK with chemo in the last phase. He has neuroblastoma and the first phase is pretty intense-2/3days chemo every ten days for eighty days. He rarely vomited and only had a few admissions for febrile neutrapenia. On the other hand, another aspect of opting for chemo worth considering would be whether he will require a Hickman line to administer the chemo. That would be an additional (relatively small) surgery with an ongoing risk for infection and it makes things like bathing pretty stressful. Not sure if that helps at all or confuses you more. My heart goes out to you though, x

Unbuckle, that must have been such a momentous day. I can imagine it must feel quite anxiety provoking though too. I do love the ideas of stress free baths and swimming though. Best of luck on Thursday Nocake.

Twunk is your DS getting regular SLT sessions? DS1 also had a speech delay and we also have two languages at home) but is doing so well now after some intervention. Hope it all settles down, x

What a difficult choice missmargot, especially if you and DH are on different pages about it. FWIW (not much really ), my gut feeling when I read your post last night is that in the same situation I would plump for surgery, and I think that even more so reading about his asthma/chest infections. DS coped quite well with chemo but he had numerous infections, some of which were quite scary....and then there is the long term implication of chemo. I would possibly feel different if DS was older and likely to be upset by the artificial eye, but your little man is so young, hopefully by the time he's old enough to understand he will just be used to it and wont be phased by it.

I felt exactly the same unbuckle when D finished chemo. Everyone was saying how fantastic it was (and it was/is for D) but it felt to me like the safety net has been pulled from under us. Having said that it is wonderful to see him leading a relatively normal life. Big hugs xx

So sorry your little man is so miserable Brave . I really hope it all goes smoothly next week - will be thinking of you.

I'm having a bit of a wobbly day - probably just because I've just had the next scan dates through. Most the time I manage to reasonably successfully bury my head in the sand, but sometimes I just don't know how its possible to exist being this scared....

Hugs and doughnuts all round (((())))

Brave it sounds like a very difficult week, to say the least.

MissMargot I hope you came to a decision you are both reconciled to.

Unbuckle and Nocake can totally empathize with end of treatment and mixed emotions. I am panicking already about Alex finishing treatment and we have over 10 months to go.

DS1 gets weekly speech therapy (in Dutch) and additional help at school. Tbh I was relieved when he was diagnosed as so many of the teachers etc thought it was his bilingualism causing the problem. I have many expat friends with children in Dutch schools (and 2 English-speaking parents) and their children have none of these problems. I've been worried about his speech since he was 18 months old - that's nearly 5 years now!

Just reread your comment unbuckle that it was just the start of a different tunnel. How true that is ((((((()))))))

What we've all lived through...

Tough weeks for everyone, I suppose the worry will never stop, just worrying about different things.

I really appreciate everyone's thoughts and it reinforces that I'm sure we have done the right thing. DS will have surgery towards the end of next week then we will have a 2-3 week wait before we know whether that is it or or whether 4 cycles of chemo are required. I image the waiting will be the hardest part.

His eye implant will put in during the surgery with a temporary lens in front of it. Then six weeks later he will get his proper, hand painted and custom shaped lens. This will be normal for him and whilst I hate the fact that my son is losing an eye I need to remind myself that the eye is already lost, he will never see through it again and what is important is that is here and as well as he can be.

Missmargot, glad you have come to a decision you can be confident in. I don't know what surgery will be like but my experience was that as recovery is quite intense, i actually didn't spend any time worrying about the biopsy result, so the wait didn't torture me.

Nocake - i wish there was a way not to feel so terrible about scans and so fearful about recurrence. I don't think you can ever go back to how you thought of things before diagnosis or to having that basic confidence that your children were going to be ok. Can you take any comfort from the way that scans are so routine for the staff administering them - although it means they don't quite get why you're a blubbering wreck (if you're anything like me)!

Twunk - i think it took me so long to get used to having a child with cancer, i'm somehow not ready for the idea of having a child without cancer.... Hopefully the maintenance phase eases you in to the idea of end of treatment as life is more normal?

Brave - ((()))). Remember we're here for you, even if the thread's quiet. I hope the transplant isn't as scary as it sounds.

Xxx

Thanks unbuckle, that does help a bit actually. I'm really struggling at the moment, I really need to snap out of it and make the most of it before the next scan. Hope you and I are doing okay?

Thinking of you brave and have everything crossed for tomorrow xx

And yes, always a blubbering wreck too - in fact Eddie used to hand before they started as I good or bad news I always cry!

When Alex was in NICU (for a week 2 days after he was born) I cried at all news - good and bad. I remember hearing him cry and bursting into tears (he'd been on a ventilator).

I was always a crier up until this past week, now I think I'm numb with shock and I'm scared that when I do start to cry I won't be able to stop.

Everything happened must faster than we expected, DS had his right eye removed on Friday. He is home now and doing really well, except he now refuses to take medicine which he used to be great at. I'm going to try and find one of the medicine dummies in Boots today and see if that works. He also doesn't have much appetite but still has wet nappies so we aren't too concerned.

His eye looks terrible. We knew it would for a while with the swelling, bruising and temporary lens that doesn't fit properly or match his seeing eye. The other issue is the size of the implant they used, in order for it not to be too small in the future and make his eye look sunken they've had to use one which is too big for now. It's the right thing to do and he will grow into it in 6-9 months but right now it looks like a golf ball under his eye. I hate looking at it and then I hate feeling that way about my baby. His dressing only came off yesterday though so I am hoping I will feel better about it very quickly.

2-4 week wait now to hear whether he needs chemo also.

How is everyone else? Brave how are things?

Wow Missmargot, that was fast and sounds like a very tough time. I remember feeling like I had been punched in the stomach in the early days of his diagnosis. It's amazing the things you get used to when you have to. I bet he's still a gorgeous little boy. But what a difficult week for you all. I also remember feeling so scared that the panic and sadness would overwhelm me -I still do. But nobody ever died from crying and it might help you to let it out. I'm sorry I'm rambling due to lack of sleep so probably not making much sense . What I'm trying to say is don't be too hard on yourself, what's happened to you and your baby is unbelievably awful, all your feelings are totally understandable and before you know it, you'll be managing dressings and medicines like a medic and when you look at your little boy all you will think is how sweet he is.

Transplant went okish-he has been vomiting and miserable since and I wasn't too far behind him. The smell of the preservative for stem cells is beyond vile!

Sneaking onto the thread to say glad the stem cells went in ok brave. Lots of love to your little soldier and heres to a good engraftment

Thanks Biscuits .

Missmargot ((())). I'm sure it is hard looking at your little boy, but you've done the right thing and you're coping amazingly with hideous times.

Nocake - did d have his port out? How did it go? How are you feeling?

How is everyone?

Brave I hope SCT is still going well.
MissMargot I hope the healing is going well
Nocake hope the Op went well
unbuckle yes indeed maintenance (especially as we have no vinc and dex pulses) is a gradual introduction into normality, and I hope things are also well with I.

Things are all well in cloggieland. We just keep on swimming on.

The healing is going really well thank you, DS was back to his normal self very quickly. His eye looks a lot better although the artificial eye is still very obviously artificial. We have our first appointment for his custom eye at the end of October which will hopefully come around quickly.

DS can't go back to nursery until we know about the chemo but thankfully my family is helping out with childcare for the moment. Just desperate to know about the chemo one way or another now.

I'll bet you are. It's good to know what you're expecting - we had to wait until Alex had been in treatment 4 months before we knew what the final 18 months would be like and it was torture.

Glad the healing is going ok!

4 months must have been so terrible for you all. I know no course of treatment is easy but knowing what you're facing is definitely preferable to the uncertainty.

First check up since the surgery at the hospital tomorrow, not too nervous as everything seems to be healing well and if there were any issues they should be very visible by now.

How are things with everyone else this week?

Could I jump in on this wonderful thread for a bit of advice? You all seem very knowledgable and there is something that is bugging me and DH. Our daughter at 1 had a blood test which screened for literally everything as the consultants didn't know what was wrong with her, we got a print out of the results and we noticed the AFP (I think it was) tumour markers safe range was 1-7 and hers was an 8. They said not to worry but is this true? As a parent seeing that it worrying as you all would know. I hope you and your littlens are all doing well xx

I think you're feelings are completely normal missmargot. Its still very early days. Glad to hear the healing is going well. Will keep everything crossed for no chemo xx

Glad to hear the transplant went ok, how is your little man doing now Brave? How are you bearing up?

Hi unbuckle. He was due to have it out Thursday but we got a call just as we were leaving to say it had been cancelled as they had an emergency. Very frustrating but cant be helped. We're off to see a dermatologist this afternoon as D has a odd looking (well darker than the rest) mole on his back in the area he had radiotherapy. Two doctors have seen it and thought it was fine so please god just a precaution but I'm not taking any chances. How is I doing? I'm thinking of going to the Coming off Treatment day at the Marsden on 16th Oct - are you going?

Hi Twunk. Hope things are all good with you?