Jamie was born on 15th April 2000 - after Dave and I had been trying for a baby for months, and I was at the end of my tether. I'd been having period problems and the doctor said it may indicate fertility problems, but I wouldn't know until I tried for kids whether there was a problem or not. As it turns out I have a tilted uterus, so have to conceive upside-down!!!
Jamie was an absolute darling, he was such a good baby, and grew into a gorgeous little boy. I'd returned to work after giving up working from home as a childminder - and Jamie was attending a day nursery. Then came the news that I was pregnant for a second time, and we started to prepare Jamie for the arrival of a baby brother.
The first time I remember Jamie becoming unwell before diagnosis was December 2002, when he fell ill at nursery nativity, high temperature. Then once the new baby, Charlie was born Jamie started to become more ill, and more often - doctors told us it was attention seeking, or growing pains. Jamie was ill on and off with vomiting and fevers, night sweats, waking with leg pain, tummy ache - I started buying larger trousers. And didn't notice his growing belly.
The last straw came after 5 weeks of going backwards and forwards to see out of hours locum doctors, who kept telling us Jamie had the tail end of a virus - I took Jamie to our regular doctor, who said that 5 weeks was too long for a virus, and sent us at once to the main hospital A&E to see a paediatrician who was waiting when we arrived to do blood tests.
The blood tests pointed towards glandular fever, and they noticed Jamie's enlarged tummy, and suspected swollen liver.
An ultrasound the next day shattered our world when a large tumour, the size of a grapefruit was found - the ultrasound lady's face drained of colour. We were ushered into a private room and told that Jamie had cancer - a tumour in his stomach and needed desperately to go to Bristol for more tests and further diagnosis. Plans were made for us to take Jamie the next day - and we asked to take Jamie home, for what might be our last night at home together.
Neither Dave or I slept a wink that night, we laid either side of Jamie and watched him sleep - I was terrified he'd die right there and then!
After a few gruelling days of invasive tests for Jamie they diagnosed him with High Risk Neuroblastoma Stage 4 - and we plunged into a programme of chemo for Jamie, followed by periodic scans, more chemo, 6 hours of surgery to remove his tumour, followed by more chemo. Throughout this ordeal Jamie smiled, laugh and joked - wiped bogeys on nurses, doctors and scan equipment!!! Jamie's digestive system took a hard knock from the surgery, and he could no longer eat food and keep it down. So for months he was on TPN, and doctors played with tube feeding, which failed, then finally a Jejunostomy worked.
During this time Jamie was also going through high dose chemo and stem cell rescue - then a steep downwards slide to near deaths door, which was terrifying.
Just when we thought things were improving Jamie developed a heart disorder from the high dose chemo - Pulmonary Hypertension, and spent weeks on Prostaglandin Therapy until it luckily subsided.
And Jamie still continued to be in great spirits.
Finally 7 months after Jamie was admitted for his surgery, we were allowed to take him home!! And from there he improved daily and started school just 200 yards from the house. Within 2 months of being home doctors said he was well enough to start the last phase of treatment at home Retinoic Acid/Accutane. Radiation and Antibody therapy was well out of the question, as Jamie had lost a kidney and suffered so badly from treatment that it would definitely have killed him. Jamie hated Retinoic acid - but coped like a trooper.
In Nov/Dec 2004 Jamie was declared NED, kinda like temporary remission - he still had a big risk of relapse, and we felt we were waiting for our bubble to burst. People kept saying that 3 months after stopping Retinoic Acid the kids relapse. Despite the warnings we were still shocked when Jamie relapsed at the end of May 2005, so close to his diagnosis anniversary. This time doctors said they couldn't treat Jamie - and didn't seem willing to try anything. They told us to take him home, he probably had a few weeks.
A few weeks later Jamie was pretty much the same so we felt that if he was fighting it, shouldn't we?? So Jamie started oral chemo - to no avail - maybe we started it too late, maybe we caught the relapse too late, maybe he never stood a chance...
We made sure that Jamie's last few months were fun filled with lots of great days and experiences - we spoiled Jamie rotten, took him to Pizza Hut everyday where he ate 2 mouthfuls of his pizza before we drove on the the hospital for bloods. Loads of people joined together and raised money so we could take Jamie to Legoland Denmark - Jamie was treated to a special day by Somerset bikers and Asda, where Andy Caddick, England Cricketer gave him a ride in his helicopter and let him take the controls, as well as that the local fire brigade gave him a demo and ride, police, tractor, motorbike, porsche, rolls royce, you name it - the local radio were there along with local news, who featured Jamie on the evening news. The joint army, navy and marines did a special day also for Jamie - Dreamcar hire gave us a ferrari for a week - we were bombarded by such kindness I will never be able to thank everyone involved enough for helping to put a smile on my poorly boys face, and making such great memories for us to hold onto now that Jamie has gone.
Jamie left us 3 months after relapse, 31st August 2005 - in the early hours - he went out fighting, and is now pain free.
Everyday since he has gone feels empty - and we struggle to cope with the concept that he has really gone, even more than 2 years later.
A few weeks after Jamie left he sent us Amy - a gift from heaven to help heal our hearts, and honour his memory... Amy is a little bit of Charlie and a lot of Jamie, with a touch of her own character - one day we will tell her about her brave big big brother Jamie who is up in heaven with God, and watches over us everyday.
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