Jack Brown

This is Jack, he is  5 years and he has Neuroblastoma, a rare form of Childhood cancer.

More than 750 children are diagnosed annually in the US with this disease, and in the UK more than 100 are diagnosed annually.  Half of these kids have metastatic disease (wide-spread) upon diagnosis,  categorised as Stage IV High Risk patients they will require aggressive therapy including intensive chemotherapy, surgery, radiation and a variety of other drugs.

Despite this aggressive therapy cure rates remain unacceptably low with a median survival among children with stage IV disease of less than 1½ years.
Jack was diagnosed at age 3, in March 2005.  Finally one year later, after 15 rounds of chemotherapy and two doses of 131I radioactive Iodine followed by further high dose chemotherapy and radiation, he was declared NED (No evidence of Disease).  An adult body could not have withstood this therapy, but the therapy may well take it’s toll later in life, should Jack live that long.

On completion of treatment Jack’s doctors still predicted a survival rate of only 20% over the next two years.  The majority of high-risk neuroblastoma patients will experience disease relapse. Once relapse occurs, there are NO curative options.  It is assumed the reason for relapse is that microscopic residual disease that cannot be picked up by scans remains present in the body, at the end of conventional treatment.

Jack had fought a long hard battle, at the end of which he remained a happy and loving child.  He had endured the worst pain possible and awful sickness for a 9 week period through-out  High Dose chemotherapy, at only  4 years of age.   Jack’s parents, anxious to prevent relapse after the battle he’d fought,  searched for and discovered a therapy in the United States  called 3F8 Monoclonal Antibody,  a mouse derived monoclonal antibody developed by Dr. Cheung at Case Western Reserve University in the 1980’s, and later tested extensively at Memorial Sloan Kettering Cancer Center.  Statistics showed that this therapy worked for 60 – 70% of patients.  They instigated a fundraising campaign to raise the $350,000 required for Jack to begin the therapy.

However, in November 2006 and after the fourth cycle of 3F8, Jack relapsed, in the brain.  The brain is part of the CNS [Central Nervous System].   Until very recently no children survived once Neuroblastoma entered the brain or spinal cord, consultants in London told Jack’s parents they could provide palliative care only, there was nothing further they could do for Jack.  However Sloan Kettering had researched antibody therapy further and had produced a new antibody called 8H9.  This was developed to fight disease in the central nervous system (CNS) only.   It has to date been successful far beyond anyone’s expectations.  So far all 10 children treated with 8H9 on the salvage regimen has remained disease free although most have been treated only in the last few years.  

For Jack, his only chance of survival was further treatment at Sloan Kettering.  His parents are now trying to raise $1M, to save his life.
The cost of treatment spiralled with a number of complications along the way;   Jack unexpectedly contracted Pneumonia at Christmas requiring hospitalisation;   In March the Neuroblastoma progressed to his bone marrow, requiring extensive high dose chemotherapy;   Complications arose over the Omaya Reservoir in his brain re- positioning itself requiring further scans and surgical procedures to replace it.  This Reservoir, which should have remained permanently in place in the brain has somehow extracted itself, this required removal and re-insertion, yet another surgical procedure.  

In June 2006, Jack was given the first dose of 8H9 via the reservoir in his head.  Shortly before he received the second dose, his liver function was found to have elevated.  The reason is likely to be the maximum dose of 8H9 he had received had proved too toxic, and the second dose was stopped.
Unwilling to leave him without treatment, he was again placed on 3F8 antibody therapy.  Once again, after the 4th cycle, he relapsed.  This time the relapse was multiple, in his legs, hips, pelvis and shoulder.  In desperate sadness, Jack’s mother brought him home to the UK, knowing his options were now palliative only.  It was nearly Christmas, Jack’s parents persuaded the consultant at UCH London to once again give Jack the Mibg therapy once again, therapy which had proved stronger than anything else he’d received against the disease… having received Mibg therapy in combination with high dose chemotherapy two years earlier, it had not only fought it off, but had held the disease at bay for eight months.  

Exactly two years to the day in November 2007, Jack once again underwent Mibg therapy with Topotecan.  Once again he was given a stem cell rescue, which used his very last bag of stem cells.  He was therefore unable to receive the high dose chemotherapy which had been given previously.  The Mibg therapy once again astounded doctors by completely clearing the disease from Jack’s body.  Unfortunately only weeks later, in January, it returned to his bone marrow and his femur.
Jack went straight back to New York.  The High Dose 3F8 had proved effective in many patients at clearing bone marrow disease, and having caught the disease’ return in the early stages, the US doctors were once again hopeful.  However there is currently a shortage of the 3F8 antibodies… Jack is waiting for sufficient in order to be given the High Dose protocol… until these become available he will have regular doses of low dose chemotherapy, in the hope that this maintains the disease so there will be no further spread during the wait.

Jack’s parents now face a bill that exceeds $1m and continues to grow.  This is worth it to them, to see Jack’s life prolonged, and he continues to survive living a happy and normal life, is worth this amount of money.  It saddens them to realise this money if used for research in the UK could have taken the UK so much further forward in the fight against this disease.