Childhood leukaemia (ALL) mutual support anyone?

[CouldDoWithSomeSun]

I'd really love to chat with other parents going through treatment. My DS was diagnosed a fortnight ago, and our feet haven't touched the ground since. Just feeling the exhaustion and overwhelming sensation atm and would dearly love to get some mutual support.

I didn’t want your post to go unanswered. I don’t have a DC with leukaemia, I have it myself.

I have CML (so am Ph+) and have been stable with normal blood counts on TKIs for over a year. I was wondering if your DC’s ALL is Ph+?

It’s a lot to take in. Have you got a treatment plan?

Thanks for answering. His ALL isn't Ph+, but we were on a ward with a girl who was.

He's been put on the standard UKALL regime, which is a hefty blast of chemo and steroids to start with. The whole thing has felt very intense, and we know it's all well practiced but my goodness my head is spinning. Seeing my DS go from a happy carefree and active boy to an ill, sunken eyed and exhausted one in a couple of weeks has challenged me, so God knows how he's feeling. He's taken most of it in his stride, but gets super grumpy around medications.

Glad to hear you're stable.

Just bumping this for you.

I'm so sorry your little boy is ill and hope he makes a full recovery.

So sorry, please do seek support from organisations where you are, just having coffee with someone else going through the same thing can really help. My friend described it as a rollercoaster ride you didn't want to get on.

How long is he in for, for the first round? (Sorry for ignorance, but I thought it’s quite rare for initial chemo for the acute forms or accelerated stage of chronics, to be outpatients)

What’s the hospital like? If he’s going to be in frequently, is there a play therapy team available?

Still here, still hoping you’re as OK as you can be

Just sending some love. Xxx

Hi. So sorry you are going through this. My daughter was diagnosed with ALL in June 2011 at the age of four. She was treated at the RVI in Newcastle for 27 months, and has been fine since. She will be 12 next month. There's a really helpful Facebook page called Children with ALL (leukemia), that I joined at the time. The good news? Is that this is generally a cancer that is very successfully treated. How old is your son?

I don’t know if this forum is active and its my first time posting, so will eagerly anticipate any replies.
My daughter Lily turned 17 on 10th May, and is now an outpatient at Alder Hey, but has to return every single day, 7 days a week, for an antifungal infusion, and will do for the next 6 months.
She only became an outpatient 8 weeks ago. She was an inpatient for 10 months.
She was diagnosed with ALL (Acute Lymphoblastic Leukemia) on 22nd Sept last year, and my world collapsed. I honestly felt like I would die of a broken heart.
And I still feel this way.
She had 5 weeks of aggressive chemotherapy last Sept/Oct, and I was staying over in her hospital room one night when she had 4 ‘grand mal’ seizures, each lasting 2 and a half minutes, was transferred to intensive care, in a coma for 3 days, and when she woke up she said she was paralysed from the waist down.
Her nerve endings are coming back and she has having to learn to walk all over again, on a zimmer frame and crutches.
She had waist length blond hair, and is heartbroken as she is now bald (she had planned to study a hair and beauty course last September).
She has completed 5 weeks of chemotherapy, 9 weeks of immunotherapy, and another 5 weeks of chemotherapy, and is now on ‘maintenance’, which is lower level chemo.
She will be receiving treatment until October 2025. We are all broken as a family. I don’t think I will ever mentally recover from this.
I came back to work in January, and work 3 days a week, mostly from her hospital room using the hospital wifi, and caring for her in between, as she can’t do anything for herself.
Its heartbreaking. And my 13 year old boy has found it very difficult, as I’m mostly at the hospital and hardly at home.

She is now living back at home again to work on recovery, rehabilitation, mobility and nutrition, although as I mentioned, we have to return every day for about 5 hours for the i/v antifungal infusion.

Although we had hoped she would be in a position to start college this September, having deferred her place from Sept 2023, the reality is that she will need a further year of rehab before she is able to progress onto college.