With week three of my clinical trial done and dusted and little to report that’s different from the two previous weeks. I thought I would take the time to document a little about the search for a donor when an allogenic transplant was still an option for me. Since family are the best source of finding a match this is the story of what happened. By the way I am the good looking one in the middle of the photo 🙂 (sorry Bruce and James)
I last saw my brothers in early 2020 when we laid my mum’s ashes to rest. Since neither of them live in Auckland we made plans to meet up again in May to have the memorial plaque unveiled. What is it they say about the best laid plans of mice and men? So it was that Covid decided to rear it’s ugly head and it would be another seventeen months before we again visited the gravesite.
Back when I did see them, they both knew that my lymphoma appeared to have relapsed but nothing was confirmed. As time moved on and treatment started I spoke with them at their homes in Sydney and Wellington updating progress. Early on in meetings with my Haematologist we discussed the probability of having a stem cell transplant. He suggested that I should have the conversation with my brothers. Sounding them out on the idea of donating their stem cells. This in case it was required but at that stage of treatment planning was heading down the road of an autologous transplant, using my own stem cells. I actually had an autologous transplant in November 2020 although discussion amongst the doctors some also favoured an allogenic transplant.
Despite meeting with my haematologist on a regular basis and having him ask at every meeting if I had any brothers or sisters and where they lived. What happened to reading the notes from the last meeting! The process of getting my brothers tested underway seemed to take forever. Mostly I think Covid was still playing havoc with the hospital systems but also because requests like this needed to be passed down the chain. Eventually as my own stem cell transplant drew near they decided to test my brothers.
Blood test request forms were sent to both Sydney and Wellington, where both of my brothers donated multiple vials of blood. A lot of blood tests produce results inside a couple of days but these tests took a couple of weeks to come back. At least they did in Wellington where my brother was deemed a perfect match. The results in Sydney appeared to be lost amongst another Covid lockdown taking weeks to confirm that he was also a match. Although the test results in Sydney for some reason are a little different than those in New Zealand meaning further confirmation could be required. However since my brother in New Zealand was both the youngest brother (which is the preferred option) and a match nothing further happened in Sydney.
An interesting point of discussion with the doctor was the number of people they come across who aren’t a full family match, a fact unknown to the family and not one that the doctors share. Or one sibling who is a full match but doesn’t want to be part of the process and therefore asks that people be told they are not a match. Obviously everyone has the right not to donate and that must be respected.
The chances of having a brother or sister match for purposes of a transplant are only one in four so having both my brothers match was highly unusual. Given that wherever possible they work with the youngest sibling further investigation was carried out in Wellington. This meant that he had to present himself to the hospital for a physical exam, ECG, chest X-ray and vein examination. The vein exam was to ensure they could adequately extract stem cells through his arms, if not like me he would have had to have an apheresis line in his neck. I think he might have got cold feet at that point.
The other thing that we both found fascinating was that he would be brought to Auckland for the extraction of the stem cells. You would think that two hospital boards within the same country could work together without the need to fly around the country. However it was explained to me that they like to transplant the cells while they were as fresh. as possible.
I am lucky that both of my brothers were happy to help out by donating their stem cells if needed. A lot of patients are unable to find a match within the family and require donated stem cells that can come from within their country or internationally. Obviously in these times of Covid that presents added difficulties to an already complicated task.
One thing I have always worried about having an allogenic transplant is the risk of death during the procedure. My haematologist has spoken about the risk being as high as one in five. With the most common cause of death being graft v’s host disease. Strangely it’s not the thought of death that bothers me but the guilt that might be caused to my brother if he donated his cells and then they contributed towards my death. Would he be upset by the fact that his donated cells had contributed towards my death or would the knowledge that I would have dies anyway offset this. Anyway that’s all academic now as it’s no longer practical for me to have this transplant given that I am refractory to chemotherapy.
If you are heading towards a stem cell transplant and have any questions about the procedure feel free to email me direct firstname.lastname@example.org and if I can help out with an answer or offer support I will be happy to do so.