After the completion of my second round of chemo the doctors took a more in-depth look at my likelihood to stay in remission. There are loads of markers or flags in every patient’s leukaemia make up. These flags help doctors predict how likely each patient is to stay in remission after chemo is complete and whether further intervention is needed.
In my case instead of one flag, I’ve got double flags! Flag number one is an ok one and if it existed on its own the docs would be happy (given previous experience) to chuck me out now and say right, get on with life, the chances of you relapsing are pretty slim. However, my other flag is more of a red one. Its existence gives the docs more cause for concern.
People with this type of flag are more than likely to fall off the remission band-wagon and see their leukaemia return. So the advice from the docs – always reminding me “it’s your choice Aileen – you could take the risk that the red flag wouldn’t cause problems”, but in our view your best option of completely obliterating the leukaemia is a stem-cell transplant.
Coupled with my current age and otherwise good health, a transplant was highly recommended. I could have chosen to take a bet on the chemo keeping the leukaemia in remission, however the conclusion Steve and I came to was that there would always be a huge ‘what if’ hanging over our heads. (And if my betting average following our holiday in Las Vegas was anything to go by I’m not that lucky). We decided that rather than potentially have to undergo the whole chemo regime again and then have a transplant at some time in the future, it was better to bite the bullet now and get it done.
The docs were first of all keen to see if I could have a sibling transplant – however my sister wasn’t a match for me (only 25% of siblings do match). This then resulted in a search, through Anthony Nolan and other stem cell registers, to find me a good match.
What the docs are looking for is a tissue type match and to find one which is as close to 10/10 as possible. There are three registers in the UK plus a large number in Europe and North America which are also scanned for possible matches.
I am delighted to report that more than one matching donor (a MUD – matched unrelated donor) was found for me. Initially my stem-cells were going to come from a German donor, however on closer inspection an 18 year old UK donor has been found who is an even better match for me. I’m over the moon with the fact that the team have found me not only such a good match in terms of donor, but also the fact that I’ll to be 18 again!!!!!!!
So next steps. I’ve had a battery of tests on my lungs, heart and kidneys to make sure my major organs are up to the job of having the transplant as its a pretty big deal. The donor has now been officially asked to donate stem cells for me, and we have three dates in the diary where a bed is available in the stem cell transplant unit within The Beatson in Glasgow. The transplant itself is a simple procedure – really just like having a blood transfusion and takes between one and 2 hours. The stem cells are harvested from the donor in a process a bit like giving blood and then there is a 72 hour window to get the cells into me.
I’m spending my time over the next couple of weeks enjoying the freedom of only having to visit the hospital once a week for care of my Hickman line. I’m feeling well and getting stronger daily. I know that once I begin the conditioning treatment (my last chemo) in advance of the transplant, and then the period following the transplant itself I will potentially have some big hills to climb but I’m confident that this is worth it in order to be able to take back my life and turn the page to the next chapter.
If you could do one thing for me after reading this post it would be to register as a stem cell donor, and encourage others you know – particularly young folk – to do so too. You can register with Anthony Nolan with the NHS or with The British Bone Marrow Registry
You’ve all played a huge part in my journey to date, and I’m sure many of you will have questions about the transplant, the gubbins of how it all works and what you might be able to do to help me and Steve over the next few months. The good guys at Anthony Nolan have thought of everything an recently published a Friends Guide which you can download and which will answer many of your questions. Have a read and I hope it will help you understand the journey we’re on. x