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 Charlotte123 and a very warm welcome to the Macmillan Community but sorry to hear about your daughters journey and diagnosis.
A cancer diagnosis in the family, especially with someone so young can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type or support challenges will help you a lot……. I have been on my rare type of Non Hodgkins Lymphoma journey for over 25 years so I do appreciate the the challenges.
This New to Community area is like our reception desk where we try to direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you join and post in our……
……. support group. This group is a safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.
As for the practical and emotional challenges of supporting your daughter and indeed yourself you may benefit from joining and posting in our……
……. support group where you will connect with a wide range of members navigating the exact same support challenges.
To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [ Black - Click to Join - Banner ] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [ + Create new post] or [ + ] in the top right of the group page.
You can copy and paste the text from this post into your new post.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and support all the family.
Do get back to me if you need further help navigating the community ((hugs))
