Thumbs up for Frankie
Donation protected
We are aiming to raise £20,000 for our 3 year old son Frankie who has an inoperable childhood cancer. The money will be used to fund the potentially lifesaving drug Neulasta which is not available on the National Health Service.
Frankie is 3 years old and was diagnosed with a rare childhood cancer, called Rhabdo Myo Sarcoma in July 2016; a cancer of the muscle. His tumor is in his nasal cavity and behind his eye and is totally inoperable. Our local hospital completely mis-diagnosed the tumor to be a nasal infection or that he had put a foreign body up his nose. The tumor grew so rapidly and large it grew out of one of his nostrils, impacted the bones in his nose and has caused partial blindness.
After numerous visits to the local A&E Frankie was booked in for a procedure to remove the mass from his nostril but the hospital still didn't detect cancer & advised us to return in a week for a CT scan. 2 days later after a mass nose bleed we returned to the hospital and begged for a scan. It showed he had a tumor the size of an apple in his nasal cavity and behind his right eye. The tumor had grown so large it destroyed a bone in the back of his nose. The day the hospital wanted us to wait to scan him he was given emergency chemotherapy in London and the day after his right eye stopped moving and he has lost vision in that eye.
Once diagnosed we were advised he would need 9 cycles of chemo and radiation-therapy. The cure rate for his cancer is 60-70%, a terrifying statement to hear about your child. After 3 cycles of chemo in the UK, we uprooted our family, left our jobs and our daughter’s school behind and we are now in Oklahoma City, USA for Proton radio-therapy; a type of radiation not available in the UK.
Our 2 month visit to the USA has been funded by the NHS and we have had excellent care and access to the most advanced drugs available to help beat the cancer and to support Frankie’s well-being during his treatment. One of these drugs, which we were unaware of in the UK, is called Neulasta. It is a colony-stimulating protein which signals the bone marrow to produce white blood cells and significantly boost the immune system.
Each cycle of chemotherapy destroys all fast growing cells including, hair, red blood cells, white blood cells, platelets, soft mucus lining and of course most importantly the cancer cells. Red blood cells & platelets can be replaced by blood and platelet transfusions and we are forever grateful to all blood donors everywhere as Frank has had 4 transfusions. However there are no white blood cell transfusions. After each round of chemotherapy cancer patients become neutropenic and cannot mix in general public in case of infection. When the immune system is low they are even at risk from their own bodies as dormant bugs can attack the body causing infection and blood poisoning. We have to check his temperature 3 times a day. Any spike in temperature means a trip to hospital for 48 hours and requires intravenous antibiotics. In the worst, but ever present case, blood poisoning could kill in 4 hours.
The drug Neulasta has enabled Frank to be in public places he hasn't been in shops, supermarkets, school run, parks, nursery school, in fact anywhere public. With this super-drug he has never been so well. Thanks to Neulasta, for the last few weeks he has enjoyed a normal life a 3 year should, being able to play with other children and do the things his 6 year old sister does.
Despite funding for Neulasta whilst in the USA, when we return home we will no longer have access to it. Therefore, we are hoping to raise enough money to fund the remaining doses of Neulasta so that, once we are back in the UK, he can finish his treatment in the best possible health between his 3-weekly chemotherapy admissions. We, Frankie’s parents and his family and friends, would be eternally grateful for any help that you can give.
From the bottom of our hearts thank you
Frankie is 3 years old and was diagnosed with a rare childhood cancer, called Rhabdo Myo Sarcoma in July 2016; a cancer of the muscle. His tumor is in his nasal cavity and behind his eye and is totally inoperable. Our local hospital completely mis-diagnosed the tumor to be a nasal infection or that he had put a foreign body up his nose. The tumor grew so rapidly and large it grew out of one of his nostrils, impacted the bones in his nose and has caused partial blindness.
After numerous visits to the local A&E Frankie was booked in for a procedure to remove the mass from his nostril but the hospital still didn't detect cancer & advised us to return in a week for a CT scan. 2 days later after a mass nose bleed we returned to the hospital and begged for a scan. It showed he had a tumor the size of an apple in his nasal cavity and behind his right eye. The tumor had grown so large it destroyed a bone in the back of his nose. The day the hospital wanted us to wait to scan him he was given emergency chemotherapy in London and the day after his right eye stopped moving and he has lost vision in that eye.
Once diagnosed we were advised he would need 9 cycles of chemo and radiation-therapy. The cure rate for his cancer is 60-70%, a terrifying statement to hear about your child. After 3 cycles of chemo in the UK, we uprooted our family, left our jobs and our daughter’s school behind and we are now in Oklahoma City, USA for Proton radio-therapy; a type of radiation not available in the UK.
Our 2 month visit to the USA has been funded by the NHS and we have had excellent care and access to the most advanced drugs available to help beat the cancer and to support Frankie’s well-being during his treatment. One of these drugs, which we were unaware of in the UK, is called Neulasta. It is a colony-stimulating protein which signals the bone marrow to produce white blood cells and significantly boost the immune system.
Each cycle of chemotherapy destroys all fast growing cells including, hair, red blood cells, white blood cells, platelets, soft mucus lining and of course most importantly the cancer cells. Red blood cells & platelets can be replaced by blood and platelet transfusions and we are forever grateful to all blood donors everywhere as Frank has had 4 transfusions. However there are no white blood cell transfusions. After each round of chemotherapy cancer patients become neutropenic and cannot mix in general public in case of infection. When the immune system is low they are even at risk from their own bodies as dormant bugs can attack the body causing infection and blood poisoning. We have to check his temperature 3 times a day. Any spike in temperature means a trip to hospital for 48 hours and requires intravenous antibiotics. In the worst, but ever present case, blood poisoning could kill in 4 hours.
The drug Neulasta has enabled Frank to be in public places he hasn't been in shops, supermarkets, school run, parks, nursery school, in fact anywhere public. With this super-drug he has never been so well. Thanks to Neulasta, for the last few weeks he has enjoyed a normal life a 3 year should, being able to play with other children and do the things his 6 year old sister does.
Despite funding for Neulasta whilst in the USA, when we return home we will no longer have access to it. Therefore, we are hoping to raise enough money to fund the remaining doses of Neulasta so that, once we are back in the UK, he can finish his treatment in the best possible health between his 3-weekly chemotherapy admissions. We, Frankie’s parents and his family and friends, would be eternally grateful for any help that you can give.
From the bottom of our hearts thank you
Organizer
Catherine Cheek
Organizer
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