I just wanted to update you all on Audrinas treatment and fundraising. As I am sure you’re all aware we have been fundraising since December 2018 for Audrina to have specialist treatment in New York to prevent relapse. This was because 60% of children with neuroblastoma relapse and there is no cure for relapsed disease.
Everyone has made an incredible effort to get us to the target of £200,000 and we are almost there. We cannot thank you all enough for your support along our journey. The community has rallied round Audrina to get her the money she needs for her treatment. For this, we will be forever grateful.
However, I am sure you all remember how poorly Audrina was over this summer. We could have lost her. This was due to a severe adverse reaction to immunotherapy. That was soo bad she stopped breathing on a number of occasions and required oxygen. We were in hospital for 7 weeks and the only reason Audrina recovered was because she was able to have a rare blood product called immunoglobulin to reverse the effects of the immunotherapy.
Immunotherapy is made of a drug called GD2. Unfortunately, so is the vaccine. The difference is, the vaccine is irreversible, meaning if Audrina reacted in the same way again there would be nothing the doctors could do to help her. Therefore, we have had to make the difficult decision to not give Audrina the vaccine. This has been such a hard decision, but it is just too dangerous. This is a real blow as Audrina has already missed out on 5 rounds of immunotherapy to prevent relapse. So now she will miss two big chunks of treatment designed to prevent relapse. This means Audrinas risk of relapse has increased.
Therefore, what we would like to do is save all money raised to be used in case she relapses. If Audrina does relapse there is no known cure in the UK. We would need to travel to Barcelona. The money raised soo far would be a really good start to pay for this treatment. We would place the money in an official trust account for Audrina for 5 years (most likely time for relapse). If after 5 years Audrina has not relapsed we would donate the money to neuroblastoma research or to another child with neuroblastoma that requires treatment not available on the NHS.
We really hope you all understand our decision. We are still hopeful there may be other trials available to Audrina. We will be attending the neuroblastoma conference in November and we are praying something may come up there.
We will keep you all updated as much as possible. Thanks again. Audrina and family xxx