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Cure Neuroblastoma Max

jack ford

Jack was born September 22nd 1997 at the Barrett Maternity Hospital, Northampton. 

Doctors told us after 4 years of failed attempts, we would never conceive naturally. Yet in January 1997 I found I was pregnant. Jack was born a week late after a perfect pregnancy. He was perfect in every way, gorgeous, angelic with the most beautiful big blue eyes I’d ever seen. I was overwhelmed by my love for him. He was a gift from God, a real angel. 

For 3 years Jack was developing well, he talked early, walked by the time he was 1, was potty trained by the time he was 2, mentally & physically he excelled himself, often mistaken by others for being older than he was. When Jack was 1, I fell pregnant again with Charlie. He was born 2 weeks after Jacks 2nd birthday. Jack bonded with Charlie when he was still inside me and when he was born he showed such love & affection for his baby brother it melted my heart. 

I had almost a year with healthy, happy little boys who never left each other’s sides. 

In June 2000, Jack started to change. He was becoming withdrawn, wanting nothing more than to sit alone on the settee watching TV. No longer would he play happily in the garden with Charlie. For a while some said it could be delayed jealously of his little brother, I knew this was not the case, he worshipped Charlie. Then we realised there was something far more serious behind his behaviour. Jack began getting pains in his hips & legs and we repeatedly took him to the GP & A&E to try & find out what was wrong with him. We were told it was growing pains, attention seeking behaviour. The pains progressively got worse, until the point where he would scream & not be able to stand, let alone walk. 

He had x-rays which showed white flecks in his bones which were just dismissed. We were told Jack had ‘irritable hip’. The pain was almost constant by August & we had to carry him everywhere. The doctors weren’t doing anything, they kept saying there was nothing wrong with his legs & this could be attention-seeking behaviour due to jealousy of his baby brother. I persisted, I was not going to give in, I knew there was something terribly wrong with my angel. He became more & more sleepy, pale, he lost his appetite, he simply wasn’t my Jack anymore. Finally blood tests were done and Jack was found to be anaemic. The doctors thought this could cause the leg pain so they were happy they’d found he answer. 

However, after 1 month of iron supplements Jacks repeat blood tests showed he was now more anaemic than before. His Haemoglobin was only 6, it should be around 12-14. Finally the doctors accepted there was definitely a problem with Jacks health. After 5 months Jack was admitted to Kettering General for tests. 

Exactly 2days after Charlie’s 1st birthday Jack had an Ultrasound scan of his abdomen. They had looked again at his hip xrays and had found something abnormal. I’ll never forget that day; we were called into a room with 3 doctors to be told they found a ‘lump’ inside Jack. Immediately it became clear to me. My angel had cancer. The doctors said not to think the worst; it may be a cist, nothing to worry about. I knew. In my heart, I just knew. We were told we were being transferred to Leicester Royal Infirmary as they had better equipment to look at Jack & find exactly what was going on inside him. The awful truth hit us when we walked onto the ward on Friday 13th October, 2000. We were on a children’s cancer ward. Everywhere we looked there were kids with no hair. Our angel had cancer. 

We were given the diagnosis on October 18th 2000. Stage 4 Neuroblastoma, a tumour the size of a football and every bone in his little body was riddled with cancer. 

After the intensive treatment and all that goes with it, Jack was declared NED, which stands for No Evidence of Disease, or Cancer Free in the summer of 2001. The consultant always told me at clinic visits to live everyday to the full, the disease could be there but the tests can't find it. It could come back at any time and with a vengeance. Jack was initially given 10% chance of survival. He'd defied all odds to get to this stage. 

He started Nursery and did very well, the kids loved him and stroked his head and were fascinated with his 'ears'. The chemo had destroyed Jacks hearing, so he had hearing aids. He loved life, he was fully of energy, climbing and jumping off the top of his climbing frame in the garden, pretending to be Buzz Lightyear, shouting "to infinity....and beyond!". When Jack grew up he wanted to be Buzz Lightyear! 

At Easter 2002, Jack had Chickenpox and we had to be admitted to LRI. At the end of school term he developed Streptococcal Pneumonia and I feared the worst. He began getting bad headaches, he was tired. During the summer holiday we had to face the awful truth, our baby had relapsed. We had a holiday booked and our consultant told us to go. We went to Devon for a week, with a stock of diamorphine and a list of phone numbers. The local hospitals were alerted. Despite his agony, Jack managed to sit on a horse, although he could only manage a couple of steps and had to get off, it was something he'd always wanted to do. He also swam alone in the hotel pool, another one of his ambitions fulfilled. Sadly, we had to end the holiday early as Jacks pain was too much to bear. We went straight back to LRI and after a while we were given the devastating news, Jack had 8 weeks to live. This was the first week in September. I had to phone the school and tell them Jack
wouldn't be starting. He was looking forward to that so much. When we bought his uniform he tried it on and didn't want to take it off. I'd promised him he'd get to wear it again. We left the hospital for the last time. 

Initially, we thought of bringing Christmas forward for Jack, but soon realised him reaching his approaching birthday was becoming less and less likely. We did not have a Macmillan Nurse, apparently we lived 'out of their area'. Who we had was worth her weight in gold. Laura, a fantastic Children’s community nurse, based at Kettering General. She was at our house every day. 

By September 16th, Jack was bed ridden. He was too weak to walk, becoming very frail and on so much morphine it was unbelievable. He still managed to laugh and smile. 

We celebrated Jack's 5th Birthday on Tuesday 17th September as we knew how quickly he was deteriorating and being strong enough on Sunday 22nd seemed unlikely. 

By Thursday, he was so weak he mainly slept. Laura called on a friend who was the doctor at an adult cancer hospice in Kettering to help. John Smith. He was lovely, from then on, he too visited everyday. We were told it could be anytime now.

On Friday he woke, sat up, gave me a huge hug, ate a bowl of ready brek, laughed and smiled, then went back to sleep. 

On Saturday, Jack never woke up, his breathing became slower and I prayed and prayed for him not to go on his birthday, I wanted to remember that as a happy day, I whispered gently to him, 'go now sweetheart, go with the angels.' At 11pm, I left his side to go to the toilet, He cried out 'mummy' as I walked out the door, I ran back to him, but he was still asleep. I laid back beside him in my bed and must have fallen asleep. 

Sunday 22nd September 2002, Jack's 5th Birthday. The doctor from the hospice came and was surprised Jack had made the night. Laura came and she said she would stay now until the end. Jacks breathing was so slow, every breath he took panicked us to think it was his last, then he'd draw another. This lasted all day. Jack listened to me, he wasn't going on his birthday. Even now, he was determined. He was still hanging on to his independence, doing what he wanted and not giving in. 

No-one slept that night. We all took turns to lay with him, hold his hands and whisper gentle to him. Laura never left the room. I was in the kitchen with my Dad and was shouted back upstairs. Jack drew his last breath. I held his hands as his heart stopped beating at 12.45am on Monday 23rd September 2002. The ground shook at the exact time Jack died. There was a mild earthquake that night and many of our friends felt the quake which woke them from their sleep and they thought instantly of Jack. His departure shook the earth. 

I'd promised Jack he would wear his school uniform again and he did, he went to heaven dressed in it. We also had his hero, Buzz lightyear in his funeral flowers and later, on his headstone, with those famous words he always used to shout. 

Part of me went with him, a huge part of Charlie did too. He's never been the same. He was only just approaching 3 when the most precious thing in his life just disappeared. He couldn't understand. To him, heaven was a bus ride away, why couldn't we visit him, why couldn't he come home, didn't Jack love me anymore? All these painful questions. 

Charlie is 11 now. He now has a beautiful 4 year old sister. She was due on Jack's Birthday, but born 26th September 2006. She is perfect in every way, gorgeous, angelic with the most beautiful big blue eyes I’d seen before, they are just like Jack's. I was overwhelmed with love once again, I had another a gift from God, another angel. 

As well as Jack's eyes, Olivia has Jack's gentle, placid temperament. She's so content, she's always happy, rarely cries, slept through the night from 2 weeks and she too is intelligent beyond her age. She smiles at Jack's photo and talks like she knows him. 

Charlie bonded with Olivia like Jack had bonded with him and since she was born he's shows such love & affection for his sister it melts my heart. He worships her. He hugs her, kisses her, makes her laugh and reads to her. 

At 14 months we realised Olivia has health issues, She had constipation since birth, she was also born with a heart mumor like Jack and then mobility problems, she couldn't stand up, her legs would just collapse. She had xrays. We were told they had found something abnormal on her hip xrays. Our hearts ached, surely Olivia couldn't have Neuroblastoma too? Thankfully, she hasn't, the relief when we were told she has no hip sockets was amazing, obviously devestating but in our circumstances, we were so relieved it wasn't Neuroblastoma. She is undergoing treatment for severe Hypermobility and CDH and waiting confirmation on which type of Ehlers Danlos Syndrome she has, it is a connective tissue disorder which is affecting all of her body and joints. As well as her hips, Olivia's other joints are loose and dislocate. She still has bowel problems and also has a squint in her left eye. We are awaiting a decision of surgery for that. The latest addition to
her list of issues has been the leaky heart valve, which is being monitored because Mitral Valve Prolapse is common in EDS. So far she has been into the operating theatre 8 times and I know Jack has been with her, watching over her and keeping her safe and he will continue to do throughout the years of surgery she is facing. We were told she'd never walk, not only does she walk, she runs, jumps and dances and the pain and chronic fatigue hasn't changed her being happy and content and her mental development is more than compensating her physical development. 

Charlie's wounds are still healing, he still asks for Jack, still blows kisses to the sky, still calls his name in his sleep. Nothing will replace what we lost, but having Olivia has given us so much. He has major problems at school, he still has aggressive outbursts, he gets very emotional, poor concentration, he's been refered for a ASD assessment and see's a psychiatrist. He has also been diagnosed with EDS, Hypermobility type, he has the bowel issues and weak muscles and hyperextending joints, but thankfully no dislocations. 

They both have a special guardian angel. There is a special big brother, somewhere in heaven, looking after Olivia and Charlie forever. 

We never really lost Jack, he is still with us everyday, in every glistening rain drop, every warm sunray, every whispering breeze. 

Always in our thoughts, forever in our hearts. "to infinity........and beyond!"
God bless you Jack, love always and forever. XXXXXXXXXXXXXX

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