This week I had a meeting in parliament with Michael Hook, father of three-year old constituent, Isla Caton, who was diagnosed this year with neuroblastoma, the disease from which young football fan, Bradley Lowery, also suffered.
Neuroblastoma is a rare and particularly vicious form of childhood cancer which develops in nerve cells that have been left behind from a baby’s development in the womb. Each year in the UK, around one hundred children are diagnosed with the disease, many under the age of five.
Michael took me through the terrible details of his family’s past year, which included an initial struggle to secure a proper diagnosis for his daughter. Isla was two years old when her parents noticed that she was growing lethargic and increasingly disengaged. After a visit to the GP and Queen’s A&E, doctors initially diagnosed her with an iron deficiency. However, after Isla lost an inordinate amount of weight and developed a distended stomach, Michael and his wife sought a second opinion and a lump was found in her tummy. Eventually, doctors diagnosed Isla with Stage 4 neuroblastoma and gave her a forty per cent chance of survival.
Neuroblastoma is notoriously difficult to detect and Isla’s three month wait for a diagnosis is unfortunately not uncommon. However, Michael explained that a simple urine test could have detected a protein associated with neuroblastoma, something that many hospitals do not carry out due to the difficulties of obtaining samples from small children. While Great Ormond Street Hospital tests samples from nappies, other hospitals fear sample contamination from this method. Meanwhile in Japan all babies are tested for neuroblastoma at birth, and I offered to raise the issue of diagnostic procedures for Michael with the Department of Health.
He went on to explain that neuroblastoma is a cancer that can spread very rapidly, feeding off blood vessels and adrenal glands. Isla’s cancer began in her tummy but spread to her bones and the cavity in her head between her brain and skull. The family was shocked by the cancer’s rapid development and the fact that many of the treatment options available for childhood cancers are based on old medicines - Isla’s chemotherapy treatment is based on a mustard gas derivative discovered in 1967. I have offered to ask questions on the research monies available to childhood cancers to secure new treatment methods.
Isla was put on an N7 Trial. Highly unusually, the five sessions of chemotherapy that she undertook did not make her sick and shrunk the cancer’s growth back to the size of a fist in her stomach, clearing it completely from her bones. Nonetheless, it had attached itself to her kidney and the next stage of treatment involved taking stem cells by dialysis to ensure that she could survive the chemo necessary after an operation to clear the tumour from her kidney.
Miraculously, doctors managed to save Isla’s kidney during the operation and removed 95% of the tumour. Chemotherapy remains necessary to blast the final five per cent and Isla is about to undergo this treatment, which requires going under general anaesthetic daily for six weeks. There are two types of radiotherapy for this stage of treatment – standard and proton, the latter of which has far fewer side effects. Nonetheless, Isla cannot receive proton therapy in the UK as the machine is still being built at UCH. Medics in the US use proton radiotherapy as a matter of course because it is safer and the NHS in England is prepared to send people there for treatment as they recognise the advantages but the NHS does not necessarily recognise the benefits for neuroblastoma patients. I shall be asking questions about the availability of this treatment to the health ministerial team.
Michael also explained the daily costs that families like his must meet to make the daily trips to Great Ormond Street. Not only do families need flexibility from their employers but they often need to pay for parking, stay in hotels and eat takeaway meals while away from home during a child’s treatment. Meanwhile, in Queen’s Hospital, there is no wifi or television in children’s wards beyond the unreliable and slow paid-for options.
After the radiotherapy, Isla then needs immunotherapy which requires her to be in hospital for two weeks on, two weeks on, over a period of six months. Immunotherapy trains the patient’s cells to attack cancer cells. Isla will then be scanned every three months for at least ten years.
Radiotherapy and immunotherapy are vitally important maintenance treatments as there is a fifty per cent chance of neuroblastoma returning once it has been removed. The Sloane Memorial Kettering Hospital in Manhattan specialises in the treatment of neuroblastoma and their three-year trials have been very successful in keeping children cancer-free. Isla’s family wants her to receive further treatment in America and are raising funds so that she can receive the Bivalent vaccine, an antibody therapy not currently available in England.
The cost of immunotherapy treatment for a child with neuroblastoma is £1million but the costs can be driven down through deals with charities and the family is now seeking to raise £200 000 to get Isla to the SMK Hospital. They have been in contact with the Bradley Lowery Foundation, which had raised £1.5 million before Bradley sadly died earlier this year. Isla is now under Bradley’s banner and any money her family obtains goes to the charity, but is held exclusively for her treatment for twenty-five years in case of reoccurrence. So far the Hooks have raised £80 000 towards getting Isla treated in the USA. They are also now closely involved with the global neuroblastoma community, which sees families supporting one another and sharing information about best practice in treating this vicious disease. Work in this regard includes participating in the IBM Community Grid, which allows people to link their computers into a broader network, giving greater computing capacity to the cancer research community in working out algorithms and equations.
Isla is now being given a sixty per cent chance of survival and with treatment in the USA her chances of survival could increase by five per cent. I am supporting the family by pressing the health ministerial team on specific issues raised by her case and sharing information about the family’s fundraising efforts. They are West Ham fans and can be seen collecting for Isla after matches. They are also running a ‘Skip a Coffee’ day which encourages people to put their daily coffee money towards Isla’s treatment.
https://bradleyloweryfoundation.com/isla-caton/
https://www.facebook.com/teamislanoonefightsalone/
https://www.justgiving.com/campaigns/charity/thebradleyloweryfoundation/islacaton
