Another stage over for Harry and he’s happy about that! Following the riots in Barcelona the drug didn’t make it over from New York last week as planned so we came home for some needed time with Oscar, Cookie and friends before being away again. Then on Tuesday this week the Omburtamab still hadn’t been shipped (we think due to transport issues to the airport) but it did eventually arrive successfully yesterday so Harry was finally able to have the treatment dose again of the Omburtamab.
We had a similar experience to the first round with Harry having painful/tingly feet and feeling overwhelmingly hot but once again despite it being so stressful he was just amazing and handled it really well throughout. The team were again brilliant, he then slept it off for a few hours after and we were allowed home late in the afternoon. Harry will be hugely radioactive for 3 days and needs to stay away from crowds for 5 days but after a follow up blood test next week he will be able to come home again for a few days.
The relief of this part being over is enormous, it only really hit me last night…The fact that Harry was able to have the two doses of Omburtamab which will give him every chance possible, is so good as we are only too aware that many others don’t even get the first, but it’s hard to explain what it’s really like..I wish it was all over and the journey complete, but the sad truth is that even after recovering from this, reassessments, the immunotherapy to follow and possibly a vaccine trial too, the journey for us as his parents will never be over. There will always be a cloud. We will however do our best to give both Harry and Oscar the best life possible and try not to let that cloud affect them.
By increasing awareness of this horrible disease may one day also play a part in easing our own pain, to help others in a similar situation or to help raise more funds for research into kinder, less harmful treatments to our Neuroblastoma children. So if you are able to help in any way, even if only sharing our journey to others, then please do. For further info on how to donate please follow the link in the bio.
Thank you for reading and for caring,