Giving Joshua the life he deserves
Donation protected
Update: Joshua is now terminal with his only chance being a 200k clinical trial at the university of Florida-this is not funded by the NHS.
Please help our beautiful boy.
Back in October 2015 we were given the most horrendous news a parent should never have to be told. ‘Your child has an inoperable malignant brain tumour in the most vital part of his brain, his brainstem and there is not much in the way of a cure.’
Joshua had a biopsy to see what type of tumour it was and what drugs (if any) could be given to ease his short life of pain until the end.
We were then sent home with Josh to wait for the results (being warned he could ‘go’ at any time and there wasn’t a thing as parents we could do to prevent it.)
After the hardest 2 weeks of our lives we had a call to go back to the hospital for the results…….Joshua had an ultra rare PNET tumour and they were going to attempt to operate.
On the 10th Nov (operation day) we were given 50/50 odds and told the best case scenario for Josh was that post surgery he’d have facial paralysis and the need of a permanent tracheotomy to assist with breathing and swallowing, the worse case would be death and in between was very grim.
After 8 hours of surgery we had a call from the surgeon’s assistant that Joshua had miraculously pulled through but we were warned he may not be able to talk/walk or recognise us when he came round.
Running to intensive care and seeing him there hooked up to wires, machines and surrounded by doctors and nurses is a sight no parent should ever have to witness of their 4 year old child. But whatever the end result OUR BOY HAD MADE IT THROUGH.
With tears in my eyes I held Josh’s hand and I kissed his forehead hoping beyond hope he MIGHT just recognise my touch, my kiss, my voice.
Slowly he looked at me and let out a cry saying ‘That naughty man has hurt my head Mummy, beat him up.’ My heart ached with joy!!
After a couple of weeks of physio Joshua learnt to walk again and no longer needed a wheelchair round the ward – he had no facial paralysis and did not need the assistance with breathing that they thought that he would likely need.
We had our boy back – and best of all we had him back unscathed (or so we thought.)
As the tumour was not completely removed we were told he needed 31 days of radiotherapy to the whole brain and spine followed by 4 high doses of chemotherapy with stem cell rescue. I was unaware until that point how much childhood cancer treatment takes from your perfect child (as well as what it takes from the whole family.)
During his gruelling treatment Joshua experienced kidney damage, hearing loss, vision loss, his spine and skull will remain undeveloped, he has been left with learning disabilities, has had several infections, blood transfusions, platelets transfusions, stem cell rescues, followed by his stomach peg leaking.
Then on his 3rd round of chemo he caught a nasty fungal infection in both lungs, was induced into a coma and put on an oscillator fighting for his life yet again……We, again, were told there wasn't much hope for him .and we prepared for the worst yet again
He miraculously pulled through PICU but was left so poorly his treatment was abandoned and we were told to take him home and 'enjoy' him.
He recovered well from his infection and is now happy within himself. We are currently making magically memories together with him and living from scan to scan.
As Joshua still has a malignant brain tumour we don't know how long we have with him whilst he is well enough to enjoy making these memories.
If the tumour starts to progress (which we have been warned its more likely to grow at some point than remain stable indefinitely ) then we would have no choice but to pay for clinical trails abroad.
My boy is worth so much more than the life he has been damned with but we will do our best to give him the life he truly does deserves.
Every penny raised will be put to good use.
Tap to begin typing...
Please help our beautiful boy.
Back in October 2015 we were given the most horrendous news a parent should never have to be told. ‘Your child has an inoperable malignant brain tumour in the most vital part of his brain, his brainstem and there is not much in the way of a cure.’
Joshua had a biopsy to see what type of tumour it was and what drugs (if any) could be given to ease his short life of pain until the end.
We were then sent home with Josh to wait for the results (being warned he could ‘go’ at any time and there wasn’t a thing as parents we could do to prevent it.)
After the hardest 2 weeks of our lives we had a call to go back to the hospital for the results…….Joshua had an ultra rare PNET tumour and they were going to attempt to operate.
On the 10th Nov (operation day) we were given 50/50 odds and told the best case scenario for Josh was that post surgery he’d have facial paralysis and the need of a permanent tracheotomy to assist with breathing and swallowing, the worse case would be death and in between was very grim.
After 8 hours of surgery we had a call from the surgeon’s assistant that Joshua had miraculously pulled through but we were warned he may not be able to talk/walk or recognise us when he came round.
Running to intensive care and seeing him there hooked up to wires, machines and surrounded by doctors and nurses is a sight no parent should ever have to witness of their 4 year old child. But whatever the end result OUR BOY HAD MADE IT THROUGH.
With tears in my eyes I held Josh’s hand and I kissed his forehead hoping beyond hope he MIGHT just recognise my touch, my kiss, my voice.
Slowly he looked at me and let out a cry saying ‘That naughty man has hurt my head Mummy, beat him up.’ My heart ached with joy!!
After a couple of weeks of physio Joshua learnt to walk again and no longer needed a wheelchair round the ward – he had no facial paralysis and did not need the assistance with breathing that they thought that he would likely need.
We had our boy back – and best of all we had him back unscathed (or so we thought.)
As the tumour was not completely removed we were told he needed 31 days of radiotherapy to the whole brain and spine followed by 4 high doses of chemotherapy with stem cell rescue. I was unaware until that point how much childhood cancer treatment takes from your perfect child (as well as what it takes from the whole family.)
During his gruelling treatment Joshua experienced kidney damage, hearing loss, vision loss, his spine and skull will remain undeveloped, he has been left with learning disabilities, has had several infections, blood transfusions, platelets transfusions, stem cell rescues, followed by his stomach peg leaking.
Then on his 3rd round of chemo he caught a nasty fungal infection in both lungs, was induced into a coma and put on an oscillator fighting for his life yet again……We, again, were told there wasn't much hope for him .and we prepared for the worst yet again
He miraculously pulled through PICU but was left so poorly his treatment was abandoned and we were told to take him home and 'enjoy' him.
He recovered well from his infection and is now happy within himself. We are currently making magically memories together with him and living from scan to scan.
As Joshua still has a malignant brain tumour we don't know how long we have with him whilst he is well enough to enjoy making these memories.
If the tumour starts to progress (which we have been warned its more likely to grow at some point than remain stable indefinitely ) then we would have no choice but to pay for clinical trails abroad.
My boy is worth so much more than the life he has been damned with but we will do our best to give him the life he truly does deserves.
Every penny raised will be put to good use.
Tap to begin typing...
Organizer
Nicola McCormack
Organizer
