Devastating News – Please Help!

I know that our family and many of our friends already know but thought some others may wish to be kept informed. It comes with an incredibly heavy heart when I tell you that devastatingly after almost 2 ½ years in remission, Harry became unwell again on Monday 26th November. In the last six weeks our world has turned upside down again and is filled with fear, anxiety and sadness.

Harry has had a neuroblastoma relapse to the CNS (central nervous system) and had to have a tumour removed from his brain within 48 hours of it being discovered. It was all extremely sudden, with no symptoms until he went to his swimming lesson and came out of the pool holding his head in agony. The life guards assumed he had somehow hit his head (as they would) and Harry didn’t seem to remember. He was upset and disorientated and became very sleepy. And so from thinking that Harry had concussion (hence me taking him to A&E later that evening after he was violently sick and seemed unable to talk properly) to this..I just cannot believe this is happening. A CNS relapse is so rare and it’s the worst.

So, Harry had a 4.5cm tumour (and cyst and bleed) removed by an amazing surgeon at The John Radcliffe Hospital on 28th November and because Harry is Harry, we made it home late that Friday evening only 48 hours later! And even more incredibly, he had his speech back and full mobility, which could well have been damaged in the short or long term. He does have a piece of his skull missing from the surgery, but this will be fixed at a later date, the most important thing was to get Harry started with treatment.

harry_benjiSince then Harry has recovered really well from the surgery, between us we have done a lot of research and had various meetings about the treatment plan. Harry has had many hospital visits already, a week of chemotherapy, now having stem cells harvested, will have more chemotherapy and will then have craniospinal radiotherapy for three weeks in Oxford all being well. The positive news is that Harry’s tumour was isolated and as far as the eye can see, has been completely resected. The not so positive news is that this is going to be incredibly tough to fight, and to prevent it from coming back again. Once a child relapses with neuroblastoma, it is highly likely that it will relapse again, especially if in the CNS.

Russ and I have therefore decided to put Harry forward for a trial in either the US or Barcelona, which offer a drug called 8H9 (also known as Omburtamab). This is an antibody that attaches to neuroblastoma cells and carries radioactive iodine directly to the cancer cells and kills them. This will have to be injected through a tube that feeds directly into his spinal fluid surrounding the brain. There have been recent publications showing some hope for this trial. We are not yet sure if Barcelona can offer this, but we are hopeful that if not, he will still be able to get treatment with the Omburtamab in the US.

We will need to raise around £500,000 (could be more if in the US, or less if Barcelona) to fund this clinical trial and to help give Harry some chance in beating this disease again, and hopefully for good. There are other trials to follow that we may also find we need for Harry. I wish with all my heart that we didn’t have to find ourselves in this position, but it appears that life can be incredibly cruel, and is being especially so to Harry, and of course Oscar. PLEASE PLEASE help if you can, dig deep and think of ways you can, or others that you know that may and share with them too. We need this to happen and only have until mid-March this year to find the remaining money for the first trial (ONLY 2 MONTHS).

Thank you for reading, and to those that know this already and have offered and given help and support to us all when we need it most. I write this from me, Oscar and my family, and from Russ and Deb and his family. Thank you for your help, Nina xx