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.