Help mainey get to New York for lifesaving vaccine
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If you’ve been following Mainey’s story for the last 9 months, then you might have already seen some of the fight he’s put up, but unfortunately that fight still isn’t over.
Tramaine has a rare, aggressive childhood cancer called neuroblastoma. Even if his treatment is completely successful, he has a 60% chance of relapsing within 5 years, at which point his chances of beating cancer again drop to 5%, which is just unthinkable and this is why I’m begging for your help. There is a clinical trial available at Memorial Sloan Kettering Cancer Center in New York for children in remission of high risk neuroblastoma. This is for a type of immunotherapy in the form of a vaccination, but it must be administered within 6 months of Tramaine going into remission.
The vaccine will train Mainey’s immune system to identify and destroy neuroblastoma cells lurking in the body after chemotherapy. Memorial Sloan Kettering have the most experience in the world with cancer vaccines for children with neuroblastoma. It is the only pediatric tumor vaccine in existence.
Unfortunately for us, this comes at a price, the vaccine costs £250,000. This is a crazy amount of money to raise, but if you knew the fight that Mainey has already put up, you would understand why we have no choice. We have to fight for him now and raise this money to give him the best possible chance of surviving.
Mainey has been through more than anyone should ever have to. I’ll tell you a bit of my lion’s fight so far.
In February 2021 Mainey started complaining of stomach ache, he wouldn’t eat anything and was being sick. We took him to the doctors several times but we’re told he was constipated and given laxido when that didn’t work we was told he was lactose intolent and to cut all diary out When he didn’t get any better we took him to a&e and we’re told he had a virus. This went on for 4 months! We were back and forth constantly as Mainey just got poorlier. I begged for his blood to be tested but this was refused as it was ‘too invasive and not required’. We really felt like we were starting to lose our minds. When Mainey’s dad took him to a&e and refused to leave with him until his blood was tested, we finally started to get some answers, but they were answers we definitely weren’t prepared for. We were told Tramaine had cancer. We were transferred from a&e straight to the oncology ward at QMC for more tests, but we’re told that the likelihood was that Mainey had leukaemia but within a few days was told he had stage 4 high risk neuroblastoma . Within a week of being in hospital, Tramaine’s eyelids had turned black and swollen shut. Little did we know at this point but Mainey’s cancer was so advanced that it had spread to every bone in his skull and face,his bone marrow was full of cancer w it started with a tumour attached to his kidney but had very quickly grew and overtaken his body. He was started in intensive chemotherapy straight away, which helped shrink the tumour in his stomach but wasn’t effective against the cancer in the bones of his face. Tramaine lost his eyesight at 2 years old. He was then started in another type of chemotherapy and amazingly this started to reduce the cancer in his face and bones . In January 2022, Mainey’s tumour was small enough that he was able to move on to the next stage of treatment and he had a huge, 12 hour surgery to remove the tumour from his abdomen. The tumour was attached to his kidney and wrapped around his aorta we was told they removed the whole tumour but a scan two weeks later shows he still has tumour there . On to the next stage of treatment. Tramaine was then sent to Sheffield Children’s hospital to have his stem cells harvested, before having incredibly high doses of chemotherapy to completely wipe out his immune system, before his stem cells were put back in. Mainey is currently recovering in isolation in QMC, which takes at least 4 weeks. After this, Tramaine will then need to have radiotherapy and immunotherapy to ensure he is completely cancer free. If you’ve got to this point, thank you! Can you believe that this is actually the short story? This doesn’t include the endless infections, 5 central line operations, countless scans and more blood and platelet transfusions than I want to count! All of this and he’s not even 3 yet!! And again, this is why I’m begging for your help to make sure that my incredible lion, the bravest little boy doesn’t EVER have to go through this hell again.
In February 2021 Mainey started complaining of stomach ache, he wouldn’t eat anything and was being sick. We took him to the doctors several times but we’re told he was constipated and given laxido when that didn’t work we was told he was lactose intolent and to cut all diary out When he didn’t get any better we took him to a&e and we’re told he had a virus. This went on for 4 months! We were back and forth constantly as Mainey just got poorlier. I begged for his blood to be tested but this was refused as it was ‘too invasive and not required’. We really felt like we were starting to lose our minds. When Mainey’s dad took him to a&e and refused to leave with him until his blood was tested, we finally started to get some answers, but they were answers we definitely weren’t prepared for. We were told Tramaine had cancer. We were transferred from a&e straight to the oncology ward at QMC for more tests, but we’re told that the likelihood was that Mainey had leukaemia but within a few days was told he had stage 4 high risk neuroblastoma . Within a week of being in hospital, Tramaine’s eyelids had turned black and swollen shut. Little did we know at this point but Mainey’s cancer was so advanced that it had spread to every bone in his skull and face,his bone marrow was full of cancer w it started with a tumour attached to his kidney but had very quickly grew and overtaken his body. He was started in intensive chemotherapy straight away, which helped shrink the tumour in his stomach but wasn’t effective against the cancer in the bones of his face. Tramaine lost his eyesight at 2 years old. He was then started in another type of chemotherapy and amazingly this started to reduce the cancer in his face and bones . In January 2022, Mainey’s tumour was small enough that he was able to move on to the next stage of treatment and he had a huge, 12 hour surgery to remove the tumour from his abdomen. The tumour was attached to his kidney and wrapped around his aorta we was told they removed the whole tumour but a scan two weeks later shows he still has tumour there . On to the next stage of treatment. Tramaine was then sent to Sheffield Children’s hospital to have his stem cells harvested, before having incredibly high doses of chemotherapy to completely wipe out his immune system, before his stem cells were put back in. Mainey is currently recovering in isolation in QMC, which takes at least 4 weeks. After this, Tramaine will then need to have radiotherapy and immunotherapy to ensure he is completely cancer free. If you’ve got to this point, thank you! Can you believe that this is actually the short story? This doesn’t include the endless infections, 5 central line operations, countless scans and more blood and platelet transfusions than I want to count! All of this and he’s not even 3 yet!! And again, this is why I’m begging for your help to make sure that my incredible lion, the bravest little boy doesn’t EVER have to go through this hell again.
Organizer
Leah Sisson
Organizer
England