daughter

Hi Thelma

Sorry to here about your daughter's diagnosis with ALL and the fact that she has reacted to the treatment. It is really difficult when your react to the drugs that are supposed to be helping you and then end up taking more drugs to combat the side effects! I was diagnosed with ALL in September 2012 and I had my treatment at Barts. You can read about my treatment journey by clicking onto my profile here  PAUL1969

I reacted during my treatment (phase 3 of UKALL14) and suffered with acute pancreatitis and got it badly. It affected my liver as well as my pancreas and I was a bright shade of yellow for many weeks. However I did recover and go on to have my stem cell transplant albeit 4 months later than planned. 

Hopefully your daughter's liver will repair itself and she can go on to receive the treatment she needs to be able to live a full and normal life. Any questions please feel free to ask.

HI, I am new to this forum and have just come across this post. How is your daughter?

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.

Hi Charlotte123, I’ve just read your message and wanted to reach out. Lily sounds like an incredibly brave young lady and is so lucky to have a mum like you on her team looking after her at such a difficult time. My son was diagnosed with ALL in July 2023, exactly 1 month after he turned 18. It was such a shock to us all and a diagnosis that no one should ever hear. He received his A level results in hospital and having just finished college, was ready to go and live his life. We’re now a year on from the start of treatment. My son is now in maintenance phase, due to complete in November 2026 as it’s 3 years of treatment for boys. It’s been the most difficult year of all our lives, but it does feel like he has turned a corner, is now working a couple of days a week, playing 9 holes of golf whenever he can and in between hospital visits and blood tests, trying to return to some sort of normality. His hair has grown back and he’s in physically better shape than before he was diagnosed. We even managed to sneak to Portugal for a weeks holiday recently. Although we still have a long way to go, we feel that he is getting stronger day by day. Will be thinking of you. Stay strong xx 

Hi Laura, thankyou so very much for getting in touch. Your journey sounds extremely challenging and traumatic also, and I'm so grateful for the support. Lily had intrathecal chemo last Wednesday,(methotrexate) and reacted really badly, vomited throughout the day about 30 times, ended up back in A & E, but was better the next day again, and came home. I think I mentioned, we still have to go to hospital everyday as outpatient, 7 days a week, for an antifungal infusion, as she has a fungal infection on board also. She is also on maintenance, and was doing quite well until the setback last wednesday. She also had ingrown toe nails and had to have surgery on these, which was incredibly painful, and she's still recovering from that, which has set her back with the physio (still learning to walk on crutches, after 4 seizures last october which put her in a coma). Interested to hear that you went with your son to Portugal - I wasn't sure, if they are on active treatment, whether they were allowed/able to go abroad? as we have a family apartment in Majorca that we would normally have gone to this summer, but because of the situation, its a no-no, so I'd said to Lily that,, given that she finishes treatment in October 2025, maybe we could still go summer 2025. Its an even longer treatment programme for your son (finishing October 2026?) but he sounds as if he has turned a corner? Lily's hair is starting to grow back, but she's still hugely devastated to have lost all her waist length highlighted hair. The college will hold her place on the hair and beauty course until sept 2025. Don't quite know how we would do this, but it might be interested if your son and my daughter were put in touch? as they are going through a similar experience, so there may be mutual comfort for them in this? please let me know what you think, and whether there's a mechanism where they could be put in contact? Take care