The January of 2004 heralded our youngest child’s start within the same school as his elder brother and sister. We were confident of the family happily maturing within the confines of everyday stresses. But then Jack got a limp; an annoying but insignificant injury, which would disappear…
When after a few days the limp remained, we took Jack to our doctor, who instructed us to bring Jack back in a few more days if the limp persisted. The limp did persist, and with Jack being in obvious and significant pain, we returned again to the doctor who wrote a referral letter to the paediatric department at the local hospital. As Jack’s condition worsened, phone calls to paediatric department revealed we were going to have a long wait. Significantly, Jack’s nursery had been making observations and began writing to us, pointing out things that we didn’t see, as we were both at work during the day; that Jack was unable to stand up unassisted, his lack of interest or involvement with the other children, seemingly as a result of the pain in his leg…… We took Jack to casualty, where the first diagnosis was arthritis, we were sent home reassured somewhat, until the pain worsened and we took Jack again and again and again to casualty; sometimes he was admitted for a weekend, sometimes he wasn’t. And over time, the diagnosis moved from irritable hip to arthritis to a non-specific infection.
Finally, having come home early one afternoon and finding Jack lying on the settee in terrible pain and unable to move, with the curtains pulled so the light would not hurt his eyes, I phoned the hospital screaming that there was something very, very wrong with my child and why could they not see that. They agreed to see Jack again, and he was re-admitted that same evening, and placed once again on antibiotics.
For the next three weeks Jack remained in Barnet General Hospital, on antibiotics. This involved insertions of canulas, where the needle had to be inserted into the vein. Jack’s veins were tiny and each insertion, which became a daily event, involved many attempts before the successful insertion was finally made. Having had a canula inserted I knew what a painful experience this was for adults, not to mention a small child. Jack grew to be terrified of the “treatment” room, and would clutch frantically at my sleeve, or pull my face to his looking desperately in my eyes screaming “don’t let them do it Mummy, please Mummy don’t let them do it”. This I will never ever forget, I would cry with him because of course, you had to let them do it, because this was going to make Jack better, wasn’t it?
Jack had an MRI scan, numerous x-rays and a biopsy taken of his leg. We were informed the results of these were negative, and took comfort from the doctors’ assurance that within 4 weeks at home “all would be well”.
Jack was discharged on a Thursday, and it seemed that our worries were over, the infection would clear. Twenty four hours later, Jack’s pain and limp were back with a renewed severity. We returned to hospital on a Saturday with little effect. Then we noticed that two swellings had occurred in Jack’s mouth. The doctors were baffled and told us to take Jack to an emergency dentist.
We abandoned our two older children at church on Sunday morning and drove to Pinner to the only emergency dentist that could accommodate us. She examined Jack and straight away told us that what she saw was “definitely not dental”, and advised us to return him straight away to the Maxo Facial department at the hospital.
The following Monday we were seen by a consultant at a second hospital. Despite Jack’s haemoglobin being desperately low, they conducted a biopsy on the swelling in his mouth. Two weeks later, we returned to the hospital to learn what the results of the biopsy were. We had tolerated two weeks of knowing something was badly wrong, and were desperate to receive the results. However we were informed the results were still not available. We had realised that Jack’s symptoms must amount to a much more serious condition than we had been led to believe. The failure to have Jack’s results available was to us, completely intolerable. We refused to leave the hospital until someone had taken responsibility. I couldn’t stop crying, sitting outside the office of the consultant and refusing to leave, until a nurse from the children’s ward took us to her office for ‘a chat’. Later that same day we were informed that Jack had neuroblastoma cells in his body. We were devastated. We had never heard of neuroblastoma. We were told it was a form of cancer and that we would go to Great Ormond Street Hospital where we would learn more.
The moments before we were told that Jack had cancer, you could sense that the news was bad. Those who work within an institution dealing with the public grow a shell labelled ‘only to be shed in times of emergency’. It was just before we met our ‘appropriately trained cancer news breaker’ that we recognised the nurses’ demeanour change. The hardest news is landed with the softest of blows.
Jack came home that night but the next morning we were to present ourselves at Great Ormond Street . I immediately got onto the internet, desperate to find out more about this beast that had entered our lives. I spent so long, too long, on the computer, unbelieving of what I was reading, and slowly desperation crept into our lives.
And that night we looked at Jack, that perfect, beautiful little boy, and we knew he would believe us when we told him everything was going to be alright. That the doctors needed to do some more tests and give him some more medicine.
But for the first time we didn’t know…
A year later and Jack has had 15 bouts of chemotherapy; two bouts of radioactive Mibg treatment and has tolerated isolation over a 3 week period; several infections; a 4 hour operation to remove the main tumour and many other lesser procedures under general anaesthetic. With each procedure there has been a severe toxic effect on his liver, his kidneys and his heart.
Jack was about 98cms tall, 3 ½ years old and weighed 15 kilograms at the start. At 4 ½ years he’s about 105 cms tall and 13 kilograms.
Jack is a devoted follower of Thomas the Tank Engine. He and Thomas have trodden this rough path together over the last year, and Jack remains the accepting and uncomplaining child he was a year ago.
More amazingly, Jack is still laughing and making people laugh. He doesn’t get down, he tries hard at every new challenge and he fights. Most of all Jack LOVES. He is so very full of LOVE.
On or about the 7th April 2006 we will find out whether the treatment has been effective to date - whether the remaining tumour cells in his head have been dissipated.
High Risk neuroblastoma remains a major cause of death due to malignancy. The majority of high-risk neuroblastoma patients will experience disease relapse. Once relapse occurs, there are NO curative options.
Children with advanced-stage disease have a significantly decreased chance for cure despite intensive therapy. This is despite the fact that many patients reach the end of treatment with no disease detectable. It is assumed the reason for relapse is that microscopic residual disease is still present at the end of conventional treatment.
Even with chemotherapy children with stage IV neuroblastoma have a 2-year survival rate of approximately 20%.
The question is how to get rid of those few cells that have escaped chemotherapy and can cause relapse. One promising answer is immune therapy that specifically targets these remaining cells.
A new anti-neuroblastoma antibody is currently under production at St. Jude's to provide an additional tool to destroy residual microscopic disease. The St. Jude's study suggests that the immune system can be manipulated to target cancer cells that have become resistant to traditional chemotherapy.
The St. Jude's strategy represents an improvement on a similar technique that showed great promise during clinical trials in Germany and elsewhere. Prior to this study, antibodies caused troublesome side effects, such as fever and pain, which restricted the level of antibody that could be used in the treatment, However, the antibody used in St. Jude's study appears to be less likely to cause side effects. That suggests that it could be used in humans at higher levels that may improve the effect of the antibody.
As Jack’s disease was spread to every bone in his body, the chances of the disease recurring are extremely high.
IF THE DISEASE RECURS, THERE IS NO CURATIVE OPTION
Jack’s only hope of non-recurrence is to have the antibodies.
The cost of antibody therapy which is available at the Memorial Sloan- Kettering Cancer Centre in New York is US $350,000.
We need to raise these funds before Jack can be given the potentially life saving therapy.
Please help us – we need your help now.
* any medical information and details of treatment supplied on this website is subject to any comments by those treating Jack
