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My son was diagnosed with acute lymphoblastic leukemia
Hi I'm new here.My 21 year old son was diagnosed with acute lymphoblastic leukemia in April 2024.We have been on treatment for 2 year's. He was doing really well until December 2025 when he suddenly had blurry vision in his eye. The hospital ran lots of tests and only last week they had the evidence they needed to confirm the leukemia was back in a different way. The leukemia was back in his eye.They have changed his treatment and are planning a bone marrow transplant. I am staying in the hospital with him.He has already had the high dose chemotherapy and is in recovery. We don't know how long it will take .Anyone here got any advice as we journey into this bone marrow transplant.
Comments
I am Liam, the Patient Involvement Manager at Anthony Nolan. Apologies for the delay in getting back to you here. It looks like we had a technical issue last week where new messages were not showing for me.
I have asked our clinical team to come back to you on this and should have a reply for you tomorrow.
All the best
Liam
I'm so sorry to hear about your son's relapse, I have no doubt this is a very uncertain and frightening time for you all.
Hopefully others on the forum will be able to share their personal experiences of undergoing a stem cell transplant, I have nursed and supported many patients who have had the treatment so can give you some insight into what the next few months may look like. We also have lots of resources about preparing for transplant and what to expect during and after treatment on the website.
Initially the medical team will be seeking a donor for the transplant- this may be a family member (likely a sibling) if you have any other children or they will ask Anthony Nolan to search the UK and international registers. Once a match is found there will be some additional tests needed for the donor and confirmation of their availability to donate, then a time scale can be predicted for when the transplant will take place.
When a transplant date is confirmed a plan for the conditioning treatment will be shared with you- this is usually a few days (around a week) of chemotherapy and possibly radiotherapy treatment. This is needed to clear space in the bone marrow for the new cells that he will be receiving. The treatment will be similar to intensive treatment he has already experienced for his leukaemia.
This part of the treatment is called minus days, working up to the stem cell infusion, given on day zero. The infusion is a relatively straightforward procedure- the stem cells are give intravenously and look like a large bag of blood and will take around an hour to infuse.
After this it's a matter of waiting for the new cells to find their way to the bone marrow, settle in and then start making new blood cells. This can take around 10 days, in the meantime all of the blood counts will be very low and your son will likely need blood and platelet transfusion support. His immune system will be very compromised and so he'll be monitored closely for any infections developing- again this may all sound familiar following treatment he's already received.
It's unusual for a patient to get through this initial recovery period without getting some infections but he'll be treated with IV antibiotics and other medicines to help with side effects he experiences.
Once the new cells start to grow and make copies in the bone marrow, approximately 10 days after day 0 then blood tests will begin to show this in his haemaglobin, platelet and white cell counts. These days, after the transplant, are referred to as day plus (day +1 is the first day after infusion, day +2 the next day, and so on). Once the blood counts are increasing and looking stable then the team will discuss discharge home, this can take a couple of weeks and sometimes longer so patients are often advised that they'll be in hospital for a month or longer. In some hospitals there may be the option to be at home sooner, or for some parts of the treatment pathway, your transplant team will let your son know if this is an option for him.
Once discharged he'll likely need to go back into the hospital 2 or 3 times a week, for a few weeks as he's likely to still need some blood product support while his cells are still growing. He'll also be taking a number of oral medications including immuno-suppression to help his new cells settle in and reduce the chance of them recognising his body as different to that of the donors.
He'll remain at risk of infections for a number of weeks, possibly months after the transplant while the new cells continue to grow and while he's taking immuno-suppression medication, this is usually weaned down a few months after the transplant and in time the number of appointments will also start to reduce.
Hopefully that has helped to give you an idea of what to expect from the transplant. It's a complex treatment and it can feel quite challenging, particularly with long periods of being isolated from extended family and friends when in hospital and once back at home. Re-admission after the initial treatment isn't uncommon and the whole process can cause fatigue which can take a while to recover from.
As I mentioned, our webpages cover lots of the side effects that I haven't covered in this response but they are things to be aware of, going into transplant. If you look through this information and have any further questions, don't hesitate to come back to us on the forum or you may wish to call our enquiries line and speak to myself or one of my colleagues- the helpline is available Monday-Friday, 9am to 5pm 0303 303 0303 and choose option 3.
I hope that's been helpful for you.
Sending very best wishes to your son and is ongoing treatment.
Kind regards
Rachel (Lead Nurse)