Letter continued...
On 27th November (Saturday), Jack started complaining of severe head pains. A couple of days later, CT scan results came back… a tumour had been located in his brain, 2.5 inches in size. Jack had relapsed in the brain. A relapse of Neuroblastoma is the worst case scenario, it is considered in the rest of the world as non curative except at Memorial Sloane Kettering. MSK have developed a range of options; this is a cancer centre where new developments happen regularly. Their oncology consultant informed Yvonne and Richard that they had 9 surviving patients who were receiving treatment for brain relapse; this is their source of hope.
This is what Yvonne wrote on her update after deciding to go to NY:
"To go there (NY) for long term treatment would mean our home and work life being thrown in the approaching storm. We would either have to leave our two older children behind or bring them to New York and obtain schooling there.
However, if Jack's life could be saved, then there was no choice. Great Ormond Street could only 'hold' the disease for a while. They have told us there are no curative treatments for Neuroblastoma. But for quality of life, I think had they offered us some hope, we would have been inclined to stay in the UK…but there was no such hope offered.
During the flight Jack cried now and again from head pain and from reluctance; he did not want to leave Connor and Rhian. Finally he fell asleep sucking his thumb and head on my lap. His tiny face was unusually pale, his eyes dark, but he looked exactly as he had as a baby.
We wondered what would have happened had we not already established contact with NY. Where would we be – at Gt Ormond St Hospital waiting for Jack to die?
There is no criticism of Gt. Ormond St in this. The government does not fund research into NB, and our doctors can only work with what they have been given.
Sloane Kettering may charge exorbitant fees, but the money is placed straight back into research, and therefore they have so many more options to work with, and the doctors are motivated with new trials occurring frequently. This could be the case in the UK were our doctors given that chance, i.e. The funding necessary to research and provide new treatments.
But for us, yet again, we may well seek the help we never wished. Those dark storms not only loom, they are overhead."
Jack's treatment for relapse in the brain, at MSK, is now estimated to cost $750,000. This is a significant difference from the $350,000 cost of the antibody therapy Jack has undergone. But it is important to recognise that the antibody therapy has worked. Numerous Scans and blood tests have shown that Jack has ONE point of relapse only - the brain. This, significantly, is the ONLY area where the antibody could not reach. Once again, we need your help.
We ask of you, first and foremost, to pray for Jack. To pray that he will be able to see this through, with his zest for life, and the undying spirit he maintains no matter what. He has won the heart of many at Ronald McDonald House, due to his endless cheerfulness and his loving character. Secondly, we would like to ask for you to spread the word about Neuroblastoma and hope that someday soon a cure for this and other kinds of cancer will be available worldwide, whatever your situation (personal or financial).
And last but most importantly, we would, once again, request your assistance in gathering donations. If everyone we met, spoke to, told about Jack, gave $1, we would raise these funds immediately.
The online donation set up by The 2Simple Trust (Reg. charity No 1113954) is still open at www.jackbrownappeal.org – you may also send a cheque to The Jack Brown Appeal, c/o The 2Simple Trust, Enterprise House, 2 The Crest, Hendon, London, NW4 2HN.
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