teen daughter leukemia

[TidyQuail]

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.

My DSS had ALL as a younger child - he was diagnosed at 4 - he is 20 this year and strong, wonderful and healthy. I remember how earth shattering it was but it does fade over time and life rights itself again. One of my best friend's husbands had ALL in his late teens (similar age to your DD) and made a full recovery physically and mentally and is very happily married with 2 wonderful children. Wishing you lots of strength and luck in the road ahead.

I believe so. I get angry with myself as I obsess and fret over relapse, but you can't live your life terrified of recurrence. She's standard/low risk for this. With my daughter, the leukemia cells were only in the bone marrow, not in the blood. Was yours the same?

@TidyQuail no unfortunately he was diagnosed via blood tests with a very high WBC of leukaemia cells. His BM results were initially 100% leukaemia. He is classed as Intermediate High Risk for relapse so a few categories away from where your DD is

But for you he has age on his side, he's very very young. My daughter also has on board a rare fungal infection in her spine, and so can't have a lumbar puncture to inject chemo. Instead she had to have an omaya reservoir in her brain/skull to inject chemo into the spinal fluid. She has it every 3 months and it knocks her sideways and makes her really ill for 48 hours, but what can you do? They have a treatment protocol and you have to complete the program. Is it your understanding that once your son has completed treatment in January 2025, he is cured?

Thankyou to everyone. I'm not sure I made it clear, but I guess, by joining this forum and posting my story, I was hoping for real life, real world examples of adolescents who have developed ALL, done the treatment program, and gone on to lead normal lives?

Hi, I guess by sharing my story/journey/trauma, I was hoping that stories of inspiration and success in Teen ALL experiences could be shared with me.
When my daughter was first diagnosed in September 2023, all my grief was poured into and channelled into a book/journal/first-hand account of the nightmare we were plunged into, which I hope I can some day get published, and which could be used to help, support and comfort other individuals and families on this rollercoaster, extraordinary journey

So is it possible that users of this forum could share any experiences, direct or indirect, in regards to teenagers who were diagnosed with ALL, were treated, and went on to lead normal lives with no further related health complications? I'd be very grateful for this. Thanks

My son is also on treatment for ALL, although quite a lot younger than your child so can’t help you with teen experiences. However, there is a Facebook group for parents of children on treatment for ALL where you might be able talk to parents who have teens going through treatment. If you search UK children with acute lymphoblastic leukaemia you should be able to find it.

So sorry op it must be hell watching your child go through this. Sending hugs 🫂 💐 🙏 ❤️

Hello just saying hi as have a teenager with a different type of cancer so have the same types of feelings. There is a nice little community in here - hopefully others will be along too.

Hey @TidyQuail how are you getting on?

Hi ScaredOncololgyMum,

My daughter seems to have turned a corner, and can now walk without crutches (more of a penguin-waddle) but she is getting stronger thanks. Her entire treatment program doesn't finish until December 2025, so its a long haul. Whilst I'm really pleased with her progress, I find myself obsessing about relapse, and rather than focusing on success stories of teenagers who have moved on with their lives after Acute Lymphoblastic Leukemia, I tend to hyper focus on those who went on to have more complications. How are you getting on?

Am intrigued as to what was written above that had to be deleted. I hope it was just a wrong thread reply and not someone being insensitive.
glad the walking is better. Your question prompted me to write a whole update of
my own (thanks) so I won’t repeat it all here.

I wouldn’t worry to much about focussing on the bad results. All that positive outlook stuff is bs. It doesn’t change a thing. Throughout we were told it was curable and I was sure that the kids having donor stem cells were much ‘worse’ than DD. But just because the treatment differs doesn’t make it lesser. I had total faith throughout (although did also do some extra supplements and diet stuff). And that positive mindset did not fix her. (Altho tbf she is still here much longer after they thought). Give yourself space and don’t worry about your reaction or your focus. Provided you can still be a good parent letting your mind go there might actually be helpful.

My husband is a pediatric cancer specialist. He’s often said ALL if first diagnosed under 20 can often be incredibly treatable. Try not to google prognosis or 5 year survival rates as they are really out of date. One thing he does believe helps mentally and physically is trying to keep as active as possible during chemo - the hospital can support this with exercises etc but try to get her to use her frame as much as possible.