Florrie received her bone marrow transplant today! For the last 10 days she has received extensive chemotherapy to kill the diseased cells and malfunctioning bone marrow. She was then given immunosuppresents and antihistamines to help prepare her body for transplant and limit the chances of her body rejecting it.
The transplant itself was really straightforward. When you hear ‘transplant’, you think about going down to theatre and having an operation, but this all actually take place in your room.
Florence’s new bone marrow comes from umbilical cord blood and it is the tiniest little bag. It is hard to fathom how that tiny little bag could be the thing that saves her life. It is incredible. The cord comes to the room frozen and when everything is prepped and ready it is dunked into a hot water bath to defrost it.
The blood is then slowly extracted and syringed into an IV bag that contains some fluids and then enters her body like a regular blood transfusion. Over the course of Florrie’s hospitalisation she has had many blood transfusions so today wasn’t too different in that respect … but it is the significance of what today’s ‘Magic blood’ could do that makes it so different.
They call today ‘Day 0’ in the transplant world. It is the birthday of her new immune system, it is Florence’s ‘Rebirthday’. So now she gets two birthdays a year!
Today was huge but it is only the start of this leg of the journey. The many complications that can occur from transplant usually happen in the weeks and months after.
Because Florence’s transplant was using cord blood this usually takes longer to engraft (work). We are told we might see it start to work in 4 to 5 weeks.
The list of complications and potential infections are pretty endless and because Florence now doesn’t have a working immune system she couldn’t be more vulnerable. We are likely to be in hospital for a few more months, with Florence remaining in isolation and being watched like a hawk for any signs of infection.
Because of Florence’s rare genetics we were told beforehand that there is quite a high chance that this procedure may not work. That is why we have fundraised, for a backup option. But we have to wholeheartedly believe that this will work, we need that amazing little bag of blood to go and work some magic.
Tonight we are so thankful for the amazing family that donated their umbilical cord. We will never know who they are but I hope they are extremely proud of themselves 🧡
So, as we have done since the beginning, we will just take it each day at a time. We couldn’t be prouder of our little warrior who has taken another monumental day completely in her stride 👊.
She had one very excited big brother when he found out that it had happened today as that means they might be one step closer to being able to see eachother. The pride and love that he shows for her could just make your heart burst.
Thanks again so much for all of your support.
We hope that the explanations of the process can help anyone another family that may have to go through the same thing 🧡
#bemorefab
