Desperately need positive child ALL stories

[ALLin26]

I’m in shock. On Tuesday, everything in our happy, busy, chaotic household was exactly how it should be; now I’m lying in a bed on a children’s cancer ward, with my beautiful 5 year old baby boy next to me, having been told he has leukaemia.

It’s such a big word for such a little boy. I don’t know how to process it. I can’t lose him. I can’t lose him.

Oh I'm so sorry - sending so much love and positive thoughts to you, your family and of course your precious little boy x

Thank you for replying - I need all the positive thoughts right now xx

I’m so sorry you’re going through this. I have an incurable cancer, but I can only imagine that would hardly register compared to a diagnosis that you’ve just faced with your child.
what are his doctors yelling you about his prognosis ?

I’m so sorry for you too 💐 at this stage there are 4 risk factors and he has 2. Over the next few days, they say they’ll be looking for any others, but the highest one is how well he responds to treatment within the next month. It sounds like the general prognosis for kids with ALL is reasonably good, but I can’t rid myself of the fear that he might be in that minority group.

it is ridiculous and superstitious, but he’s a third baby and it felt somehow greedy of me to try for a 3rd having already had 2 healthy children. He was conceived in Covid and felt like a miracle, but I remember never quite believing that he would make it through the pregnancy because we surely couldn’t be so lucky. And now that it’s 4am in a dark oncology ward, I’m reminded of that again and that maybe I was only ever going to be allowed 5 wonderful years with him.

God that’s hard to write. I can’t say that out loud.

I'm so sorry you and your boy are going through this. Treatment is so much more advanced now. Let's hope your ds responds well.
My nephew had AML in his twenties and is now 12 years on and living a normal life.
Your ds will be in good hands.

Thanks fig. I’ve just gone into the corridor to have an uncontrolled sob away from him and one of the lovely nurses says likewise, that she’s been doing this for 10 years, and treatments and success rates have risen massively.

Oh my goodness, my heart really goes out to you.

Have the staff been able to suggest any support options? There must be help available for you all, and you deserve to have that support around you.

I don’t really know what to say other than to take things one day at a time, and accept every bit of help you can to get through this.

I completely understand how easy it is to catastrophise, I do this having been through difficult things before and get annoyed when well meaning people tell me to stop!
It’s almost (rightly or wrongly - a coping mechanism for me)
I find it helps to talk things through with someone who will listen, and to lean on whatever support is available.
I wish your son well

My sibling had Aml at age 7 back in the early 80s and was give a less than 5% chance of survival; 40 ish years later they have a successful career and two amazing children.
The next while is going to be hard on all of you and I know you want to be strong for your precious little boy but please try and look after yourself too. You do not need to be strong for everyone else as well.
Treatments and outcomes have improved so so much since my sibling was ill so just try focus on the positive percentages and not the tiny chances.
Massive hugs for all of you and all the positive thoughts and prayers too.

Thanks Picasso. It’s a really hard thing for me to ‘accept’ help, but I’m realising I need to - it will take a team to get him better. I just feel
exhausted, only had a couple of hours sleep the last couple of days. And the needing to stay perky and energetic for him takes a toll.

Sending so many hugs OP!

My cousin’s son had leukaemia, diagnosed on his 3rd birthday, also the youngest of 3 boys! Of course they went through an awful time but he recovered and he is now a fit and healthy 20 year old!
one of my friends daughters also had it age 15, she has also recovered well and is just about to celebrate her 21st.

I m so so sorry you are going through this.
I understand all too well.
I m currently sitting in a haematology ward with my son who was diagnosed with ALL leukaemia 2 months ago. Feel free to DM me if you d like.
The important thing is it is treatable and curable. For the moment just take it one day at a time. Its so hard to process and all the information can be very overwhelming.
Sending hugs. Mind yourself xx

Thank you Forty - needed that 🙏

Oh gosh, I’m so sorry for you too. How old is your son?

it’s like a whole nether world using language I’ve never heard before and living lives in a way I’ve never seen - and never wanted to.

I have been hugely impressed by the staff and that gives me a lot of hope. He has the bone marrow aspiration and lumbar puncture tomorrow. I’m pinning a disproportionate amount of hope on a positive outcome re the spinal fluid.

I went through similarish with my child. After the sudden shock we spent a week not knowing whether it was the variant which just needed surgery (in most cases )and a 90%+ survival rate, or the full surgery/chemo/radiotherapy but just to give some time. It was 50-50 which is was. It was good news and we are a few years on. Things were never the same again truly but life feels good most of the time. There are still appointments and I over half a dozen departments still involved in her care but no admissions in a couple of years and all stable.

I used to be a relaxed chilled out mum, now I'm paranoid. I still check she's breathing. She was too young to be truly traumatised by it (a toddler), thank goodness, but it's left the scars on me instead.

You'll go to some very very dark places and even when it's a good outcome it's an absolutely shit road to travel. But you have hope and you've got to hold on to that.

There's a children with cancer page on here if and when that would be helpful to you.

My daughter was diagnosed with B cell ALL at age 4 - now 17 years old, sitting A levels and planning for University. Treatment is long, tough and my advice is to take one day at a time. She had a rocky time with umpteen hospital stays, infections, has to relearn to walk..... but children really are resilient. Take joy in the little things, be prepared for plans to change & use every bit of support that is offered. You will get through this and one day, it will be a memory like it is for us. There are some great Facebook support groups which were a huge help to me.

Thank you for this 🙏 I hadn’t even thought about ‘after’, was only thinking about whether there’d be an ‘after’. But the doctors were going through it last night - 2 years and 1 month has really stuck in my mind, because it seems an eternity for a small boy. And as you say, there’s a lifelong consequence to this, for all of us.

we told our other children yesterday; our 11 yo took it hard as she has heard some of the words previously. I told her we are an amazing team of 5 and now we have an even bigger team around us in the doctors and nurses and play workers etc - all focused on getting our little boy back to his life. That’s what I’m holding onto.

Thanks Chocol8. So good to hear. We have T cell here, which I understand is a slightly more complicating factor, but I’m not quite sure in what way. One of the things I’m struggling with is we had multiple people in yesterday with loads of literature and telling us loads of things, but my mind wasn’t processing any of it. Then at midnight, or 5am, I’m wide awake, wanting to get clarity! I’m not Googling (a first for me) as I’m trying to control information input. They do say it has a good success rate but I’m too scared to ask what ‘good’ actually is, because their relative good might not be mine, iyswim.

So sorry that this is happening. It will be incredibly hard you don't need me to tell you that but a good friend went through this last year. Her son was 8 at the time. The good thing is that about 9 months later he was and still is in remission and back at school. Now you would never know he had been ill.

Hold on to hope. Your son can beat this.

One of my school friends was diagnosed with this when she was 12. She's 35 with three kids of her own now.

So sorry OP you are going through this. My niece (8) Was same backing October. She was happy energetic. On the Sunday she had a temp, by Wednesday couldnt walk and qas diagnosed within 1-2 weeks as the percentages of cells wasn't high enough or something. She started treatment and for first time in months a few weeks ago rode her bike again.

Dont get me wrong the first bit is rough, she aas in hospital for 6 ish weeks. My brother had to give up work to look after other kids at home whilst her mom stayed with her. But now shes home and goes once a week so much better. You will see a difference in them after chemo starts - a good one. It was nice to see my niece walk again and havd determination after being so weak.

It has a high success rate. The consultant wasnt even worried about death or anything. She said though its infection that kills so be mindful of any sick people seeing him. The good thing is as well is ALL isnt staged so you either have it or you don't whether its 90% cancerous cells or 20% its just a worry if its spread. But my nieces inital scan scared us as lymphnodes came up everywhere and we thought she was done for. But it was normal due to infection.

Ill keep you in my thoughts. Xx

That’s an amazing recovery! I do think kids are so much more resilient and able to bounce back than adults - I must remember that.

Also a really good point on staging, that was one of the questions I asked first and was so relieved that it isn’t a thing with leukaemia. Thank you for that, really helpful x

T Cell here too.

My son a bit older, a teenager.

Its like our lives have been turned upside down the past few months.
That first wk was so overwhelming. Chest xrays, heart echoes, bone marrow biopsy, lumbar punctures. Too much information to process. He started treatment 5 days after admission.
He s had good days and bad, highs and lows, but treatment is working, doctors happy so we re staying positive.
Best of luck with procedures today. Thinking of you both xx

Thank you. Currently in the ‘hangry waiting to hear when they’re ready for us in theatre stage’ 🙈

The terrible anxiety will break, you will rest, you will eat and you will find a quiet strength. Your anxiety and the fear are loud. They are not the truth. Nothing is certain.

My best friends son had his age 4. He’s 21 now and just finishing his law degree at Durham I can’t imagine the shock but the cure rates for this are very very high