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

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So I posted on this forum several months ago. My 17 year old daughter continues to receive treatment for acute lymphoblastic leukemia, as an outpatient, having been diagnosed in August 2023, and having been an inpatient in hospital for almost a year.. She was discharged as an outpatient in summer 2024, faces a long road of rehab and is due to finish treatment on 15.12.24. She is unwell at the moment with a virus (rhinoenterovirus - basically common cold and flu) and out of action, but living at home, and has a stomach peg fitted, so I can give her oral chemo and fungal infection medication down the peg (she is phobic about tablets so all has to be in liquid form through her peg. My question to you all is this: can you please give me some encouraging examples/case studies of young people/teenagers in her age group who have come through treatment for Acute Lymphoblastic Leukemia and gone on to live normal lives with no further complications? I would be eternally grateful

  • 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  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.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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