The Benefit of Hindsight
If these thoughts help even just one person facing this awful disease in the future, that will be some small compensation.
Devastatingly, my son died in October 2023. He was diagnosed with AML in June 2022 with FLT3 mutation and T cell mutation. There are things that I wish I had known before his treatment so that we may have potentially changed the horrific outcome.
A 12 match stem cell donor was identified, but unfortunately she could not donate for 6 months. At the time we were told that Ryan did not have 6 months to wait, however, now that the worst has happened, I fully believe that he absolutely could have waited for that much better match than the 10 match he received. My reasons for this belief are many:
It was six months before Ryan was admitted to the hospital for his stem cell transplant and prior to his admittance, he underwent chemotherapy on a program which is not person specific (he was in remission due to the chemotherapy and he did not ever have any recurrence of the leukemia cells in between bouts of chemotherapy (obviously, I have no idea whether stretching these bouts out would have made it more difficult for the chemotherapy to tackle the leukemia in future sessions) so I believe that these sessions could have been stretched out to give him the time to receive the 12 match.
Ryan had the stem cell transplant on 4 January and it was on 10 May that we found that the treatment had not worked and the leukemia had returned, this was whilst he had been admitted to the hospital for GvHD. At this point, Ryan was diagnosed as terminal. He was prescribed Gilteritinib to try and slow down the leukemia, however, the treatment for his GvHD was halted (I wish I had asked whether there was any reason for the immunosuppressants to be stopped as the GvHD nearly killed him months earlier and weakened his body significantly).
The Gilteritinib put Ryan back into remission within a month and he was again admitted to hospital for treatment of the GvHD which by this point had attacked his digestive system to the point that his body was unable to digest anything that he physically ate and he was having significant blood loss in his stools, he had a colonoscopy which showed open bleeding ulcers causing this. Ryan was prescribed tranexamic acid which he had via vein which thankfully halted the blood loss.
At this point, Ryan was asked whether he wanted to stay on the Gilteritinib as it was affecting his bloods and with the short time that he was diagnosed with (2 weeks to possibly 2 months), his bloods might recover better in the short term without it. So Ryan came off the Gilteritinib around 15 June.
After two weeks, we understood that there was a feeding system via the vein (Total Parenteral Nutrition TPN) that he could have which initially he had to stay admitted in hospital for due to the dangers it imposes from infections.
Unfortunately by the time we found out about TPN, Ryan’s body was struggling as he had already lost just over 20kg (I think his lowest weight was around 46kg and at 6ft that is exceptionally underweight). I don’t know whether it would make any difference if his body was in a better nourished state or not, but when he got CMV, he did not respond to the treatment so it was then left untreated (I believe this is what he actually died of).
We had a difficult time to get the nutrition team to agree to Ryan being allowed to have the TPN at home (HPN - we were told by the nutrition consultant that the NHS policy was that patients had to have a three month or more prognosis which turned out to not be the case). This led us to effectively being held hostage in the hospital so that Ryan could receive nutrition (he had to have it removed twice, once for infection and once as a precaution due to a temperature spike - when it’s removed, it is generally for a week!). We finally got the all clear for the HPN and left the hospital around 17 July, with our local hospital unit agreeing to see Ryan every weekday for the tranexamic acid and immunosuppressants via vein that he needed - they were incredible.
By chance, one of the palliative care team came into the local unit to see Ryan whilst we were discussing the tranexamic acid situation as the alternatives that he had to use at the weekend were not via vein and were not as effective. She advised us that they could provide a driver with tranexamic acid solution (the nurses were completely unaware that this was possible) so we tried that out over the following weekend and it worked so well that we stuck with that throughout the week too.
After approximately four weeks of being on immunosuppressants for the GvHD and tranexamic acid, Ryan began to put on weight and started feeling much better and decided that he wanted to see the Northern Lights - so off to Iceland we went in August (against medical advice and the wrong month to see the lights!). The palliative care team were brilliant and helped us with everything to enable this travel whilst having to get us to sign to say that we understood that it was against medical advice.
Having had to removed the tranexamic acid driver for flying, Ryan decided that he would try out leaving it off as he had improved so much by this point. He did not have any further bleeds.
In October Ryan decided that he was ready to travel again to finally have a honeymoon and went to Amsterdam, on his final day there, he fell ill and decided that he was not well enough to get his coach home on that day but they did make it the following day. I picked them up from the coach on the Wednesday and took him directly to our local unit where his bloods were checked and he had an infection but no leukemia blasts, so off to the hospital we went for IV antibiotics. In hindsight, the marks that appeared on Ryan’s chest and the coughing that we thought was just an infection indicated that the CMV disease had attacked his lungs. The next day, Thursday, the leukemia had returned (which unfortunately none of the doctors told me - I had gone home to get a change of clothes and toothbrush when the consultant came in to tell Ryan and he was too confused by this point to pass this information on to us). By the Saturday, we found out that the leukemia had returned and we took Ryan home as per his wishes - within 24 hours he passed away.
The thoughts that I’m left with are why could we have not waited for the six months for the 12 match? They are not questions that I would now choose to ask of Ryan’s consultants as I can imagine that they sound accusatory and I can’t ever thank them enough for tying to save my son’s life. I’m not sure that I could cope with a job where such a large percentage of my patients don’t make it.
It was 11 months between his initial diagnosis and the leukemia returning due to the stem cell replacement being ineffective.
Would Gilteritinib have given us months of time? It was four months between his remission due to taking the Gilteritinib and halting it in June to his death in October.
Would stretching the time period between the initial chemotherapy sessions have given him these six months?
I also wish I had asked the difference in survival rates between a 10 match and a 12 match as this plagues me still that I was remiss as if they are significantly different, I would likely have argued for the 12 match to be possible - this I think is my biggest guilt of all (I know that I shouldn’t feel this way but emotions don’t just go away on demand or even by request!).
Comments
Dear Cheryl,
Thank you for sharing your experience, it sounds like the last 18 months have been incredibly turbulent and I'm so sorry to hear of the difficulties Ryan faced and that you lost him after all of that. In amongst the very difficult treatment Ryan had, its lovely to hear that he managed to do some nice things and that you were able to access such good support through the palliative care team.
You're asking very reasonable questions about the treatment decisions and whilst I know you write that you don't want to appear accusatory of the Consultant I really do think that asking these questions of the medical team would be the right thing to do. The Consultant and team that looked after Ryan would be able to speak about his specific disease and treatment to help you better understand what, if anything, might have been done differently. This is often done with families that are bereaved so I'm sure they would be open to meeting with you.
Please do consider it, I don't imagine anything will ease your pain, but speaking about Ryan with people who knew him and looked after him may bring some comfort.
Kind regards
Rachel- Lead Nurse Anthony Nolan