teenage daughter aged 17, diagnosed with Acute Lymphoblastic leukemia in August 2023

It takes time, the treatment is harsh but recovery is possible.Speak to her designated doctor as every patient is different.

Sending you loads of love 

Thanks Ghaz. The general trend is upwards, but she will get knocked for six each time she has a head cold or something. When she was first diagnosed, the 'rogue cells' were only in the bone marrow, not in the blood, which gives me hope that it was caught in the early stages. Also she responded immediately to the chemo and went into a deep remission in 29 days, which again gives me hope that it was blasted and gone very quickly. The health complications she has had since are a result of the chemo treatment, not the rogue cells themselves. 5 weeks into the treatment she had chemo-induced seizures, and went into a 3 day coma. When she awoke, she couldn't feel her legs from the waist down (this was October 2023) and so it has taken a year for her to learn to walk without zimmer frame/crutches etc. Still working on this, but she can walk unaided around the house and short distances. I feel the need to reach out and connect with others going through same, and am really grateful for your reply. Have you had personal experience with ALL?

HI Charlotte123 and a second welcome to this corner of the Community although I am always sorry to hear about your daughter.

I am Mike and I help out around our various Blood Cancer groups.

I don’t have Acute Lymphoblastic Leukaemia (ALL) but I was diagnosed way back in 1999 at 43 with a very rare, incurable but treatable type of Low-Grade Non Hodgkins Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive High-Grade Non Hodgkins Lymphoma was then presenting so although my blood cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

Let’s look for group members to pick up on your post and get back to you. You can also click on the main ‘ALL 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.

It’s a challenging time for you so you may want to use 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.

For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups….. the one I attend does have a person with ALL in it so worth checking.

Always around to help more or just to chat.

Hi Charlotte,

My daughter turned 17 last June and was diagnosed with ALL at beginning October 2024. She had just started her final year at school and was planning to go to Uni etc. She also had long blonde hair at the time.

Our world came crashing down and I don’t think I’ve had a good nights sleep since, so I can appreciate how you are feeling.

My daughter’s treatment hasn’t been smooth either. We spent the last 4 months away from home at the hospital due to an infection which attacked her leg and required surgery. It’s been tough, but she is up and walking again now.

She has just started delayed intensification, but has already had delays due to infection.

I feel proud of how strong and determined my daughter is being, despite it all. But I am scared. Scared of what the future might hold and of any further complications during treatment. So I am also looking for some reassurance that she will be ok and will lead a normal life beyond this.

You are certainly not alone Charlotte. The treatment is harsh and the feeling of helplessness and watching your child suffer is heartbreaking at times.

Hi Jenny, its so extraordinary to hear from somebody who is on a similar journey. Yours sounds v tough too, 17 year old girl losing all her long blonde hair. My daughter still can't come to terms with that side of things, and is a traumatised and ever, even though she finishes treatment in December this year and is on maintenance chemo. I remember delayed intensification being the worst part, possibly, although the induction one was the one that gave her 4 seizures in the night, a 3 day coma, and paralysis from waist down for months. She can now walk very short distances but still can't bend/pick things up off the floor, and running or jumping would be impossible. She walks with what they call 'trendelenberg gait' as her hips are weak, she doesn't get much physio input at home, and I work full time so I can't bring her on. She spends most days crying in bed, still majorly traumatised, as am I, her dad and her younger brother. I'd hoped that on maintenance you start to get your life back, but its not seeming to be the case. Even today, I've cancelled my work diary to get her back to hospital as I think her HB has crashed, she's got headaches, nausea, fatigue, zero appetite and a hacking cough and I think she needs another blood transfusion. Don't know if theres a way we could actually put our daughters in touch? - she has no real friends and is very isolated and lonely. Her schoolmates have all moved on, with college, jobs, boyfriends, and she's stuck in her room all day every day. for the life she's living, she may as well be lying in a hospital bed. Please lets keep the contact going? Hope to hear back from you soon

Hi Charlotte123 and Jenny12345 I am pleased that you have made contact through the community…….. 

As this is an ‘open’ community hence why everyone uses Avatars the world can see what is said on the community…… but you can become Friends and you can communicate ‘off line’ as your text is not seen

      How do I send a friend request?