The January of 2007 was a happy time. Jacob had recently completed his first term at primary school and had starred in his first nativity play as one of the Three Wise Men. We had just enjoyed a wonderful Christmas, made even more special by the presence of Jacob’s baby brother Ben, who had himself enjoyed his first Christmas. Everything looked rosy, almost perfect. That is until until Jacob began to experience severe stomach pains. At first we put this down to the usual stomach bug, virus etc. The previous day the family had enjoyed a meal at a restaurant to celebrate Nicky’s (Jacob’s mummy) birthday, so, at one point we even suspected food poisoning. However, a visit to our family GP reinforced our beliefs that this was nothing serious and would soon pass.
The stomach pains did pass, but were replaced by a limp. The sight of Jacob dragging his leg behind him whilst grimacing with pain is something we will never forget. When after a few days the limp remained and Jacob began to experience continuos pain, we took him back to our doctor. What followed were numerous visits to our doctor and a local NHS drop-in centre, until Jacob was eventually admitted to our local general hospital literally screaming in agony. This was the first of many admissions over a two month period, during which time Jacob was diagnosed provisionally with a septic hip. Painkillers and antibiotics would be administered and the pain would cease, with Jacob becoming fully mobile. As this pattern continued repeatedly the diagnosis progressed to one of suspected juvenile arthritis, possibly rheumatoid.
Jacob was referred to a rheumatologist at Alder Hey Hospital in Liverpool. However, due to his continued and increasing pain his admission was brought forward and he immediately underwent a bewildering range of tests and scans. Twenty four hours later we received the worst news any parent can receive. The doctors had found a ‘growth’ which turned out to be a tumour approximately 15 cm in length. The tumour was located behind Jacobs’ stomach, parallel to his spine. We remember thinking how could something so large exist inside such a small body without us noticing something, anything! The guilt then quickly followed, why didn’t we spot this, could we have done more, why Jacob?
Meeting with Jacob’s consultant oncologist for the first time was reassuring, mostly as a result of her empathic manner, we truly sensed that she understood what we were going through. But the phrase ‘eminently treatable’ which she used was one that resonated positively with us. Whatever type of cancer Jacob had, they could treat him. Then almost immediately the doubts set in, treat is not the same as cure, is it? We were told that Jacob was likely to have one of three types of cancer, leukemia, lymphoma or neuroblastoma.
After the meeting, as we walked to Jacob’s hospital bed, he looked up and smiled and then carried on playing his Playstation, totally oblivious to what was happening. We both hugged Jacob, never wanting to let go, resisting (just) the urge to break down.
What then began was an agonising wait which seemed to last forever, but was in fact around ten days during which time Jacob underwent a detailed scan of his entire body known as an MIGB scan. Samples of his bone marrow were also taken from both of his hips and a biopsy sample removed from his tumour. There were also calls to make to relatives, friends, to so many people. All were like us, in shock and utter disbelief.
During the wait for Jacob’s results we were provided with a plethora of literature, leaflets, and links to various websites. We couldn’t take much, if any, of this in though. If the truth be told I don’t think we really believed what was happening, we just thought we would wake up soon, that it was all some horrible mistake.
The day we were due to meet with Jacob’s consultant to discuss his results was the scariest and loneliest day of our lives. Somewhere, in this vast hospital was a report, a piece of paper, written upon which were words which would change the rest of our lives. When the moment arrived, time seemed to stop. Before any words were spoken, we knew the news was bad. However hard they try, people communicate mostly by body language. Then followed the words, delivered like an iron fist in a velvet glove, but how else could such devastating news be delivered? Jacob had neuroblastoma, a rare and aggressive cancer which had also spread from his primary tumour to his bones. His cancer was labeled stage 4, the most advanced form. We were left in no doubt that our beautiful, darling boy, was now engaged in a fight for his life.
Jacob’s treatment was explained to us and we listened, with disbelief at what he would have to endure in the coming months: intensive chemotherapy, surgery, stem-cell rescue, radiotherapy and then further high level chemotherapy. This is not to mention having surgery for a Hickman Line (tube into a main artery) to be fitted to allow his chemotherapy drugs to be infused directly into his bloodstream and regular ex-rays, scans, bone marrow biopsies etc.
Eight months later, and Jacob has received the most intensive chemotherapy available. He has shown resilience and courage beyond belief and experienced things no five year old child should ever encounter. We swear that we have never heard him complain once about being treated, examined, operated on, nor about any of the side effects of his treatment. Whatever is required, Jacob just gets on with it without question and he has never stopped smiling!!!
However, despite all of his struggles Jacob has not achieved remission and his cancer remains in his bone marrow. This has meant that Jacob has not progressed to surgery and therefore his primary tumour remains inside him. Surgery to remove his tumour will not take place until his bone marrow is clear from cancer.
Our choices for treatment in the UK are are now diminishing rapidly. A possible treatment in London known as MIGB therapy will hopefully be given. This treatment would involve Jacob being given a radioactive substance in an attempt to kill the cancer cells in his body. To receive this treatment Jacob would have to enter an isolation unit and have little, if any, contact with other people for a whole week. After a week away from the hospital, Jacob would then receive a further dose of MIBG, and re-enter the isolation unit for another week. The idea of this fills us with dread, and we have no idea how Jacob will cope with such little human contact as we are such a close family and cuddle each other constantly. Then there are the side effects. They put people who receive radiation in isolation for a reason! This is actually too much to think about, but we will have to, and soon!
As if all the above was not enough, we may now have to contemplate treatment outside the UK. We have been told that Jacob has little chance of survival if things remain as they are currently. We have heard good things from other families in the same situation, about a treatment called 3F8 antibody therapy. This is only available at one hospital in New York called the Memorial Sloan-Kettering Children’s Cancer Centre (MSKC). However, the cost of this treatment is a minimum of $350,000 and would involve all of us relocating to America for up to a year. Others have done this, Jack Brown and George Yeomans. So, we have options, and this has led to our decision to ‘go public’ to raise funds for whatever treatment we decide upon, or at the very least to help raise awareness about this awful disease and possibly to help other children in the same situation as Jacob.
We still have a chance to save our darling boy!
