My beautiful teenage daughter was diagnosed with leukemia on 22 September 2023, and it has been a nightmare 10 months.
For 10 months solid she was an inpatient at alder hey, and has only been living at home for the past 6 weeks. Even now, she has to return to the hospital everyday, 7 days a week for a 2 hour anti-fungal infusion, due to developing a rare fungal infection last October.
Lily turned 17 on 10th May, and has been so devastated by all this, as we all have. We had a family holiday to Majorca last August, and little did we know what was round the corner. It just came completely out of the blue. We returned from Majorca on 12th August, and she kept saying she had a really sore throat and was worried it was septic tonsilitis. On the bank holiday weekend, last weekend of August 2023, she came upstairs and said she felt like she couldn't breathe, and so I rang an ambulance and blue lighted her to the local A & E. She had done her GCSE's that summer and had got a place at the local FE college to study Hair and Beauty (bitter irony, as little did she know she was set to lose all her waist length blond hair). The A & E department ran some blood tests and couldn't understand why she had hardly any white blood cells and neutrophils of 0. something. During years 10 and 11 at school, she had frequent absences because she was always ill with a sore throat/chest infection/cough/cold, where nobody else in the household was ill. For 3 weeks, they continued blood tests and were clueless, coming up with things like "Aplastic Anemia". After 3 weeks of puzzlement, they decided to do a bone marrow biopsy, which I knew wasn't a good sign. A consultant rang me one night after 3 weeks and said they were transferring her to Alder Hey as they had more resource for children, and he still thought it was aplastic anemia. Then came the bombshell, on the day we were transferred to alder hey.
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 is 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 went 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.
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.
I am utterly desperate for success stories, parents of other teenagers who were affected by leukemia who have come out the other side, and whose teenagers have gone on to lead normal lives.
Anybody who can give me some inspiration, please do
Hi again Charlotte123 and it’s good that you found this little corner of the Community.
As I said in your post in the New to Community I don’t have Acute Myeloid Leukaemia (AML) but I have been on my journey with my 2 types of rare types of NHL (1 incurable) for over 25 years so although my blood cancer ‘type’ is different I do appreciate the challenges of this journey rather well……. but certainly not as someone as young as your daughter and not as a parent….. I fail to fully understand the heartbreak you feel.
This group tends to be on the slow side but let’s look for group members to pick up on your post and get back to you. You can also click on the main ‘AML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Do also check out Leukaemia Care UK who run various Leukaemia specific support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444 - do call them as they may be able to connect you with families who are in the exact same position.
Always around to help more or just to chat ((hugs))
