My son just 18 just been diagnosed with A.L.L

Hi Sophie43 I understand your frustrations. If you aren't getting the answers that you want or you are both unsure of what your son has with regards to the chicken pox / not chicken pox then you must ask. If the nurses aren't sure ask if you can speak to the clinical nurse specialist that is dealing with your son as they are usually a really great source of answers.

They really wont mind and will be more than happy to listen to you and answer questions.

With regards to uniforms all hospital tend to be different so once again just ask one of the nurses or ask the nurse in Red. Red uniforms are quite often warn by senior sisters. I did a quick google and it does say that nurses who are delivering medicines for patients wear red tabards. So it could be either or something different. I am sure they will tell you.

It is a long journey and try to take it one day at a time. How is your son doing generally with his treatment?

HI, I came across your post and am new to this forum. Really hoping your son has a positive outcome

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.

Hello, firstly I am so very sorry for everything you and your daughter and family have been going through. My son is at the beginning of this journey, having been diagnosed with ALL 10 days ago.

As his Mum, I am constantly fearful and oscillate between being strong for him and having bouts of despair and crying. I cannot bear to see him suffer. Normal life has been put on hold until he's beaten this disease. I, too, or rather, we, are desperate to hear of success stories. I know that everyone's experience is individual, the side effects of chemo etc can vary depending from person to person, I am hoping and praying that my son is able to cope and his body can withstand the treatment he's just started. As someone said on here, we can't do more than be here for our precious children and put our faith and trust in expert medical teams looking after them. 

I reach out to you with all my heart, and anyone else going through a similar situation. It is heartbreaking but we are trying to take one day at a time, cope with one thing at a time. I can't bear to be far from my son even to go and shower, I worry so much. Mums' instinct is to care for our children first. But we must try to look after ourselves, too and draw on whatever support we can lay our hands on. 

I wish, hope and pray for your daughter's return to great health as soon as possible. In the meantime, do reach out... we mums need to support each other through this extremely traumatic experience.

Hi, I am so sorry to hear this. Yes, you are absolutely right, its a tough, tough journey, every journey is individual and different, and for me, its the worst thing that could ever have happened - I would trade places with her in a heartbeat, and would rather I went through it than she did. How old is your son? Her body reacted unusually aggressively to the treatment, which was why she was hospitalised for 10 months straight - brain seizures, coma, temporary paralysis from the waist down, rare fungal infection etc etc. Its taken away everything from her - long blond hair, mobility (she used a wheelchair for a year), independence, dignity, her college place, the whole lot. But I try to keep looking forward. She's come this far. And so will your son. Let me know how its going

I would like to tell you two success stories: one of my closest friends has supported two other friends whose children were diagnosed with leukaemia around the same age. One girl was 17, like my son and your daughter, the other was 19. Both had a tough treatment journey but the daughter went back to finish school and is now at university in Milan. (We live in Italy) The other is at university in Pisa. They are both clear. Stories like this are heartening for us, we know there is a very high possibility that our children will be cured and that, as one haematologist told us, this is "just a parenthesis, normal life will resume when treatment is over and all the disease is gone". 

Hold on to every positive. Try to take each day one day at a time, one step at a time... there is only so much you can do, we have to trust in the medical team and the healing power of the body. 

Very very best wishes to you and your daughter and family. We will all get through this.

Hi there, very many thanks for these positive vibes and real-world success stories. For me personally, this is far more helpful and valuable than me whining to a counsellor/therapist (tried that, didn't find it helpful). This I DO find helpful, this mutual support approach via this message board. So you live in Italy and your son is 17, like my daughter? I'm so sorry you've had to start this highly challenging journey, but hopefully, as the weeks and months pass, and your son has completed the 'hardcore' chemo, things will settle and improve. My daughter is making steady progress, due to finish treatment December 2025, but the biggest devastation is the mobility (she still can only walk short distances, and has what they call "trendelenberg gait", not a fluid walk due to lack of hip strength, was also talking about hair extensions as she can't stand her short hair and is really unhappy with her physical appearance and insecure - teenage girl stuff - but we have to keep going, and looking forward. She's tried wigs but can't find one she likes, so will have to wait it out. I work full-time (remotely, from home), so she gets very bored and depressed, stuck in her bedroom and waiting to start college in September. All her friends have moved on - got college courses, jobs, boyfriends - so its tough. Was your son in education? Has this been put on hold?

Hello,

Lots of mental challenges at the moment, anxiety about possible side effects, trying to help find joy in every day despite the circumstances and ways to pass the time. We are getting precious little support from his father, and my son doesn't wish to tell his friends the reason why he's in hospital. I hope he'll feel ready to do this soon, as I feel they are essential in helping him in every way. 

His school is being great, very supportive but we hope he'll feel like continuing with a bit of schoolwork next week. 

It's difficult working remotely but so grateful to be able to do this. 

Wishing you well, any ideas on how to get through this much welcomed! 

Thank you.

It's so hard for our teenagers to take all of this on board, as it is for anyone. I think the loss of a social life, as well as their physical appearance especially at this age is a real challenge. I met the husband of a lady on the same ward as my son, and he talked to me about the importance of "deep psychological direction", focusing on deep healing, and getting over and past this illness, giving hope that all this suffering is temporary. Trying to keep spirits buoyed up is a daily activity, while at the same time allowing our children and ourselves to work through different feelings as they come and go. We have an on-ward psychologist who is lovely, and on hand to listen to patients and their family members and talk through things. Have you had this? 

Hi, yes there was counselling available on the ward - my daughter ending up being an inpatient for 10 months straight, and me having to take 4 months off work (albeit paid leave) - have worked remotely ever since, but yes, psychologists were available to me, and to my daughter also, but she simply didn't want to engage. I can't say I found talking to a psychologist overly helpful. What is more helpful to me and always has been is real life, real world success stories, and exchanges with other parents, such as yourself. Where in Italy are you based? Is your son on an ALL clinical trial? Just that we were signed up to an ALL trial by our consultant, but I was so devastated at the time I was just signing anything not really understanding the implications for treatment programs etc. All I can say is yes, its devastating, hard, heartbreaking and completely bewildering, and you can only take it, not a day at a time, but an hour at a time

I have been told nothing about a clinical trial. I will ask. But I trust the doctors. I have been told of lives the doctors here have saved. 

You're right about taking things even an hour at a time. One step at a time.  I am trying to be as calm as possible, and get on with practical stuff. There are so many things to get used to, living in a hospital, for both my son and I. It is easy for me to wobble emotionally especially if a procedure has to be done, but never in front of him. But we do what needs to be done for our children.