Hi everyone.
We just wanted to update you all on what is happening with Florence.
Bone Marrow Transplant: As it stands, she is due to go for her bone marrow transplant at the beginning of August, this will be in Sheffield.
We are so grateful for the thousands of people who have registered to become bone marrow donors in recent weeks in the hope of becoming a match for Florence, the spike in people registering has been incredible and this will surely go on to help save many lives. So we implore everyone to continue registering and spreading the word about how simple a process this is!
Under normal circumstances Florence’s transplant would take place using a normal bone marrow donor, which is what we had expected. However, the rounds of chemotherapythat Florence has had haven’t cleared enough of the cancer in her blood which means that a normal bone marrow donor would have an even slimmer chance of being successful.
They would normally like a child to undergo a bone marrow transplant with there essentially being no cancer left in her bone marrow, but because there is cancer left they have said that they will use an umbilical cord for the transplant instead. Even after the amazing spike in bone marrow donors, there was no ‘normal’ match for Florence but they do have an umbilical cord that is a mismatch. Using an umbilical cord for transplant comes with significantly more risks (which is why it isn’t the standard choice) but we are told it is definitely the best option for Florence at this point in time.
She may need a more standard bone marrow transplant at some point after though so we are still desperate to find her a true match incase she does need this (so as we said.. please register if you can and haven’t already).
Because of Florence’s genetic mutations we know that the chances of the transplant being successful are not great, however we remain hopeful and positive that this will be the cure she needs. The treatment will mean another long, gruelling, continued period of time in hospital and Florence will be at serious risk throughout the treatment but the team at Sheffield seem to be amazing and we know how hard she is already fighting.
Fundraising: I can’t believe that a month into fundraising that I am about to write “We’re nearly at the £500,000”, that is just incredible. As we have said so many times, we want to message or thank everyone in person that has donated as much as a penny but there are simply not enough hours in the day. Someone coined the phrase “Florence and the Fundraising Machine” and that is so appropriate… The force and precision has been machine-like but this is a machine manned by an army of people. The weight of the support behind us has helped to keep pushing us forward even on our hardest days, so again…. Thank you!
Now I feel it is appropriate to remind everyone that the money is being raised as a precaution, it is highly likely that she will need it but not a certainty. The money is being raised for treatment options that aren’t available on the NHS if her transplant fails (which we have been told is very likely to be the case). If it does fail then we expect her best treatment option to still be CAR T cell therapy but we will not know this until after her transplant. Different markers in her blood after the transplant will determine what treatment options she has available to her, so the money is to ensure that we are prepared for any eventuality but we cannot plan a specific treatment until far closer to the time that she needs it. We set our target at £500,000 as this is typically what CAR T cell therapy costs but we know that the prices vary.
As we said earlier, we are so grateful for every penny that has been donated and there is no expectation for anyone to donate a penny more but our fundraising pages will remain open even after the target is reached because there is a good chance we may need more. Remember, if all of/ any of the money isn’t needed then it will remain there until Florence’s chances of relapse are all but gone or it may be used to support her with other medical care that may be needed as a result of repercussions from the chemo/ transplant etc. But any money not used will go to support a family in need of something similar (that doesn’t have such an amazing community around them to help generate the funds) or it will go to help research this cruel disease. So no donation is ever wasted, every penny will be doing something amazing.
Thanks again, Team Bark
#bemorefab
