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

Hello Min my lovely. I think of you and Will often. Saw you on a thread recently when I got a bit heated about it, I hope you weren't upset by it.

I never got to know any other blood cancer parents on our ward - all individual rooms and no real place to "associate" with eachother. Coupled with my dreadful Dutch I just kept myself to myself. Online communities have been my lifeline, though it's easy to get terrified if you read too many posts early on.

Oh dear.. I wrote a lengthy msg last night it has disappeared :-(
rushing now but just wanted to said thanks, I have taken on board what you all said about pratical help etc…
There are some news will post later from home
gracias !

I'm in the UK!

So happy to be here at my mum and dad's. I didn't even dare think about it or imagine it. The last time I saw this place Alex developed a fever on the day we returned home to NL and the next day we got his diagnosis.

Journey went well, and the boys are so happy to be here. DH is at home, with the dog, as he has to work and do some work on the house. It's a shame as he loves it here.

Boxing I hope the wee man is doing better now xx

Twunk thanks. He is much better, he had a terrible few days but they did find the right antiB. and his fever is under control. He lost his hair but his smile is back. The TC scan was negative. Now waiting for more tests in view of the marrow bone thingy.
Glad your journey went well. Have a fantastic time back home. It is not only the place you had the bad news, I am sure the good memories and the good time you had its all going to make it a special time
How is Alex at the mo?

Lovely to see you min. I hope the days are as kind to you as they can be. Xxx

I feel really bad I entered this tread feet first worrying sick about my friend child without even realising how many poorly children are fighting at the moment.
Last night I read pages and pages following mainly expat story because of related illness. My heart sunk. Nothing much to add apart from saying how sorry I am in front of all this pain and how much admiration one feels for all of you.
Little boy blood check was reassuring but marrow bone tests not back yet. Friend really worried as his petechiae rush is back…worse than when he got admitted 3 weeks ago

Don't be silly Boxing - it's useful to talk about it and it's lovely that you care.

Chemo will reduce all blood counts, including platelets. And an infection makes that even worse. Alex's platelets were effectively zero for 2 weeks at one point. I was terrified he'd fall or hit his head. In the Netherlands they don't give a platelets transfusion unless a child starts bleeding, I think in the uk it's automatic if it goes under...12 I think.

Below 20 is very low, below 50 is low.

The thing with leukaemia is that it's in the bone marrow, so production of all types of blood cells are affected and that is effectively the aim of the treatment (well it's to stop production of the blasts but the rest is a necessary side-effect of that). So the patient becomes anaemic, neutropenic and occasionally lacks platelets. They will give him red blood cells, possibly platelets, and may delay treatment if things get too hairy (but they prefer to continue if possible). In the protocol it states the conditions for going ahead with the next chemo. For example, Alex usually had to have platelets over 50 and Hb over a certain level, as well as no other issues with liver etc.

thanx Twunk. How is Alex/you doing? Are you still in the uk?
His bone marrow results are back. Doctors are complete shocked how good they are, its not what they expected based on illness. They said its the worst type (but parents don't talk about any medical data, they don't ask, they are not able to) Doctors send him home for 3 days that BM test again. They told my friend "don't kid yourself it will come back" Still not sure he will get a second course of chemo, they were planning transplant already, but after what I read (expat) I am very scared of the transplant. Did not mention anything to my friend, they don't seem to want to accept reality.. and who knows it may even be a good thing at this stage?

We're on our way in to RMH for i to start his last cycle of chemo. I don't really know what to think, except that i could never imagine getting to today. One of my colleagues asked if it meant there was light at the end of the tunnel. I said i thought it was just the start of a different tunnel.

Much love to you all, whether you're in the thick of it or at the end of treatment.

Oh Unbuckle, it's the strangest feeling isn't it. It's wonderful not to have life dominated by appointments and to watch them grow stronger everyday... but absolutely terrifying too.

One of the hardest things is to the outside world it's all over now - sadly we know it's never really over. Still like you, I am very grateful to have got to this point and am just trying to live day by day and not think too far ahead. I find the run up to (and immediately after) scans horrific as it brings the fear flooding back, but in the weeks I between we're starting to return to some normality now which is lovely for both DC.

I hope today went smoothly. If you ever want to chat just drop me a PM x

I'm so sorry about your friends DS Boxing. I think not wanting to accept reality is prob quite normal and as you suggest, maybe not a bad thing at the moment. I've always been someone who hopes for the best but prepares for the worst.... but you can't prepare for something like this. I simply couldn't function if I let myself dwell too much on what the outcome could still be. A lot of the time, particularly in the run up to scans it is inevitable, but the rest of the time I try very head to bury my head in the sand!

Hope you had a fab time in the UK Twunk. Did the boys enjoy it?

Thanks Nocake. It didn't go so well - he's got a raging infection. He really isn't well, I am very worried about him.

Oh dear, poor little thing. And poor you, it's so worrying isn't it. Did it just come on very suddenly after chemo? Hope the ab's kick in soon xx

how is your boy doing UnBuckle? Has the infection calmed down?
Friend boy back in Hosp for second round of chemo, so far so good, he is much better this time around, also parents are prepared for the worse so are trying to take things in there stroll… Waiting for BM results tomorrow

May I join you?

We will have an official diagnosis on Monday but it is fairly certain that DS has retinoblastoma. He will be 8 months old next week. Obviously we won't know much until Monday when he will be examined under anaesthetic to establish whether the tumour is in just his right eye or both and whether it has spread. Then the treatment plan can be discussed and we will know the prognosis, although the overall survival rate for this type of cancer is very high which I keep focussing on.

There is a tiny chance we might hear on Monday that they are mistaken but I know deep down that they aren't. He has a detached retina and a discoloured pupil which are major symptoms and in all likelihood he was born with this.

Luckily we live relatively close to Birmingham Children's Hospital who are one of the two hospitals in the UK who treat this so at least we won't have to travel too far.

Hi missmargot
So sorry to hear you've had to join us. Are you in hospital at the moment? I found the early days bewildering and terrifying - i hope you've got some support from family and friends and you're able to get the kind of practical things you need.

Thinking of you . (())

Thanks unbuckle. We are at home at the moment, the tumour was picked up at a routine eye appointment at a different hospital on Saturday (suspected squint). We haven't been to Birmingham Children's Hospital yet and they will confirm the diagnosis on Monday but they have seen the ultrasound print outs from last Saturday and are fairly certain. There is definitely a retinal detachment and it is definitely caused by a mass pushing against the retina and there is no other explanation other than retinoblastoma.

Our family have been great, they aren't local but will be coming up ready for next week. I just started a new job at a new company this week after my maternity leave, so terrible timing but they are being very supportive.

The hardest part at the moment is the uncertainty, not knowing whether the cancer is in one or both eyes and not knowing what treatments he will need. We should know all of that on Monday.

Oh missmargot I'm so sorry you had to join us. I remember this stage vividly, I wouldn't wish it on my worse enemy. In my experience, things do get a little easier once you have a treatment plan in place - you feel you're doing something rather than waiting in limbo.

Do you have any other DC?

As you said, the overall survival rate is really good for this type of cancer so do cling on to that. I know that doesn't make the treatment any less scary though. Please do shout if we can help with any practical advise once you know the treatment plan. Big hugs to you all.

How us I now unbuckle?

I's going in to hospital to have his port removed - his chemo is done, and he has somehow managed the near impossible and got an infection in his port. How about d - is he managing school ok this year?

Missmargot, there are a few of us dropping in and out of the thread who had a similar problem with having diagnosis at the end of ML - i was actually on my accrued leave before returning to work when i was diagnosed, and went back the day after his first mri. I was completely unfit for work, but trudged on for months - although the start of his treatment was logistically easier than the post-op chemo, i was completely in shock and didn't know what i was doing. Apparently it wasn't obvious

It must be so hard waiting for a diagnosis and plan - i wish you strength over the weekend.

Thank you both of you, I think you are absolutely right about Monday being easier once there is a plan. There are so many different treatment options that we can't even begin to speculate what his treatment will be.

He is my first but I have a 14 year old step son who is with us EOW. He doesn't know anything yet and we won't tell him until we have concrete facts.

unbuckle I'm sorry to hear about the infection, has it made him very poorly?

We are sadly familiar with Hickman lines, ports, paediatric intensive care etc as my family does have a history of two serious and rare conditions that are far less treatable than retinoblastoma. So we are trying to focus on feeling relief over DS not having one of those conditions rather than feeling upset over what he does IYSWIM.

Hi missmargot, so sorry to hear about your DS. I hope Monday brings you some clarity and allows you to plan. I remember those awful early days only too well. My DS was diagnosed with high risk neuroblastoma a few months ago. His tumour was found the week before I was due to go back to work after 11 months maternity leave so I can relate to the poor timing aspect. Hope you're doing as ok as you can be.

Sorry to hear about I's infection Unbuckle, seems so unfair. We're due to start stem cell transplant on Sunday and I'm beyond terrified

Oh my goodness Brave - it's come already. Will be thinking of you.

Sorry to hear about the port infection unbuckle - sounds like it's all been a tad stressful.

And sorry to hear you've had to join us MissMargot

Sorry disappeared there! Everything's just ticking along. Going to England was lovely, the boys are back in school and settling in. DS1 has a speech and language delay so I was worried about him learning to read but it's fine so far (very early days). Tbh that's all worrying me more than the leukaemia at the moment.

I hope all went well today Brave xxxx

Brave, missmargot: thinking of you both and wishing you strength

I had his line out on Friday. I guess this really is the end of treatment.