At the beginning of January 2015, Rupert, then aged 3, had been running around at nursery, lively, mischievous, and full of fun. Three days later he was diagnosed with cancer.
Doctors thought his symptoms were simply a stomach ache, gastroenteritis or, at worst, appendicitis, but it was Neuroblastoma. Neuroblastoma is a rare childhood cancer that only affects 100 children per year in the UK. This silent cancer showed no previous symptoms, but had managed to grow into a solid tumour that had wrapped itself around his kidney, spread in a spidery web up towards his heart. Extending into his bones; affecting his skull, legs, hips, spine and arms. The Doctors explained that Rupert had stage 4 High Risk Neuroblastoma, which is extremely difficult to cure. If he responded to treatment he had a 60% chance of surviving. However, the treatment was intensive and potentially life threatening as no one could predict how he would tolerate it.
Time stood still for us. We tried to comprehend. How? Why? Cancer! Nothing made sense.
Rupert no longer ran around his nursery, but instead he was hospitalised and attached to toxic chemotherapy drugs being transfused via a Hickman line straight into his heart. An intensive cycle of chemotherapy, every 10 days, for nearly 3 months. Rupert underwent five general anaesthetics within the first three months, an abdominal biopsy, bone marrow aspirations, and multiple scans.
Rupert lost his appetite and endured the sickness. The bouncing golden baby curls soon disappeared and we had to explain why this was happening to him.
‘What is the matter with me mummy?’
A tumour, a lump, nothing made sense.
So one day I told him a story of an imaginary ‘crocodile’. This crocodile was cancer and it had hidden itself in his tummy, swishing its tail around his body and hooking its nasty claws into his bones causing him pain. After a lot of questions, a beautiful smile appeared through his tears, a flicker of understanding.
From then on the challenge was to defeat this crocodile. Every aspect of Rupert’s treatment leads to a continuation of the story, to help explain his treatment.
The Hickman line became a ‘fishing line’ to feed the crocodile the shrinking poison.
‘Take that you nasty crocodile!’ Rupert would cheer as every chemotherapy cycle ended. The biopsy was to take a slice of the crocodile’s back to see what type it was. It could have been an alligator!!
For over three years, these crocodile stories continued. Rupert tried different treatment regimens on the NHS, one after another. No remission achieved, no breaks in treatment, just recovery time ready for the next treatment cycle.
Rupert had over 30 cycles of chemotherapy, a 15 hour operation to remove the crocodile (tumour), with 2 weeks in intensive care, a stem cell harvest, frequent multiple blood transfusions and injections; far too many to count. Rupert had 6 months of LuDO -targeted episodes of radiation in London. Countless days, nights, weeks and months in hospital. Every six-eight weeks he had another general anaesthetic, for re-assessment. Rupert had multiple MRI, CT, MIBG scans, all of which, for the last year, he did without a general anaesthetic. Anyone with a small child would appreciate that this is an amazing achievement; he had to lie still, by himself, for 35-45 minutes. Give it a try, it’s really hard to ignore that itchy nose!
In March 2017 Rupert received a further higher dose of targeted radiation and chemotherapy treatment combined (MATIN protocol). This meant he spent 4 weeks in strict isolation, in a lead lined room in London, then further isolation following a ‘stem cell rescue’, while his immune system recovered. During this time he had limited contact from us, his parents, and strictly no direct contact with his siblings. The first cycle showed some reduction in the Neuroblastoma activity; the crocodile was weakening, so Rupert had another repeat cycle.