How it began…..

Jack was a 3 ½ year old boy from London, who lived with his two older siblings and mum and dad. Nothing unusual in his circumstances. Both Mum and Dad were detectives in the Metropolitan Police and aside from the hectic juggling between the competing demands of school, work, home life and child minding. There was nothing remarkable about the family. Well actually there was but it was latent or rather hiding, hidden.There is a lot that can be written about the detail of what happened over the next three years – thousands of words have already credited that period. It was comparable to any fiction involving a malicious entity; impossible odds; valiant hearts; fair folk and travels to faraway lands in search of an elixir.

It wasn’t fiction, though, it was true and the monster won. Here is how it happened, the abridged version…

2006 One day Jack was not himself and he had a pain in his leg. Kids have pains but it wouldn’t go away and he limped. Doctors and hospitals guessed at the cause. They guessed wrong for a while but one weekend having just been discharged from the inpatient paediatric department and an inappropriate regimen designed to rid a presumed infection there arose this lump in Jack’s mouth. This lump was wrong and an obvious invasion.

There was a painful wait to find out what the lump was or what it was not. When we were told of the lump’s biopsy and it’s analysis we heard the word ‘Neuroblastoma’ for the first time.

Neuroblastoma is described in more detail elsewhere, [and, please, there is an important difference with regard to outcome based upon the stage of Neuroblastoma], but in essence it’s a paediatric cancer striking at little kids mostly. Kids with a vitality and spark that monsters hunt. There is a cell that we all have that is essential in the creation of our myriad of nerve cells. This sparky cell’s shelf life is supposed to be pretty short. The cell is sort of like a particle at the big bang moment – necessary to spark everything off then, well, they just ebb to a mere residual presence in our ‘celestial body’, job done.

Jack’s illness meant he went from an also ran in the minor league of childhood illnesses to the premier division overnight. This seemed a good thing to his parent’s, premier status brings with it; a renowned hospital; specialist care and a constructive plan to fight Jack’s invisible plague. Answers!

A year went by lots of things happened and we learnt a lot about radiation, chemotherapy, surgery, MIBG therapy, infections, sores and how to make masks out of papier-Mache sick bowls so that no one would guess his secret identity . We witnessed the most incredible birth of a different sort of child, one who endured and thrived, laughed and loved regardless of his trial. Anyway too much detail.

There was a big issue, however, and it requires two strands of the story to bind. When we first learnt of Jack’s diagnosis there was a lot to take in and being practical parents our focus was on what would happen and how we could do our best to contribute to Jack’s care. Monsters have a way of employing prophecy and our consultant turned to his prognosis with the words, “Jack has a 50% chance of surviving the treatment to the end of the first year, thereafter, he has a 35% chance of survival.” At the point of his diagnosis the words meant nothing – mere words. Move forward 12 months…

Jack did survive the first year of treatment. It had been a humbling and inspiring journey to see him and some of his peers compete with their twin adversaries – cancer and therapy. Actually, the important part of Jack thrived and he gave us so much.

The return of the prophecy. We were given the all clear…..well not as such. The statement was qualified, “We can’t find any Neuroblastoma cells at the moment, so take Jack home, he survived the first year, and he now has a 35% chance of survival. We have no more curative options.”

It’s difficult to summarise the emotional response to this – in fact you can’t. Never surrender to the hopelessness implicit in statement such as the above. You can sometimes find hope if you go out and look for it. The comment was correct but only within the context of therapies THEN available in the UK. So our counter proposal was, ‘What about America? They are doing antibodies.”

Again I bridge forward to the important bit. Jack got to go the New York for treatment at Memorial Sloan Kettering Cancer Centre. The only reason he manged to get there was because of an appeal and the generous response from family, friends, and strangers and because of like help from many officers and staff from the Metropolitan Police.

Jack also had treatment in Vermont. The illness kept finding new paths to harm Jack and after 3 years of fighting the disease and living life he sought some rest.

The point though is this, medicine is making progress towards answers. Therapies that required us to fight for and fund in America are not now dismissed; some are available through partnership between European medical collaborations.

Jack needed better answers; children need better answers.

Joining Against Cancer in Kids seeks to provide funds to find those answers.