Jonty James Clare

Here is the latest update from the family. Firstly thank you to all of those

that have donated. Your generosity is overwhelming and has made it

easier for us to explore other treatment options. The last four months

have been a rollercoaster ride for Jonty and his family. From initially

being given weeks to months, Jonty has repeatedly exceeded medical

expectations, and his oncologist now thinks we are probably looking at

years (we’re hoping for about 80 of those!). After stalling in his weight

gain for three months, Jonty is currently thriving (weighing in at a hefty

7kg now) and he is developing both physically and mentally on par with

other 7-month-old babies.

Since our last update, Jonty has been on imatinib (a tumour growth

suppressor), and although we started the oral chemotherapy

(etoposide) a few months ago, numerous complications meant we were

only able to have him on a two-week course over this period. The

biggest complication was development of a life-threatening

hydrocephalus (excess fluid on the brain). Because Jonty's primary

tumour is pushing on his brain stem, it is partially blocking the

cerebrospinal fluid (CSF) from draining properly. The brain produces

enough CSF to replace the bodies store three times a day. This meant

that Jonty's head began to expand as the fluid built up. After initially

being told that it was deemed too risky to operate on Jonty, one of the

neurosurgeon's at Starship eventually offered to operate and put a

shunt in to provide ongoing drainage. While the surgery came with

substantial risks, Jonty pulled through amazingly and we are so

fortunate to have got our little boy back. Since then we have been home

for around two months with Jonty being on oral chemo at home, which

has been great. Jonty had his latest scan three weeks ago, which

showed no progression after four months in all but his lung tumours,

which have shrunk slightly. This result was far better than we had ever

imagined, given that he had only been on two short courses of a low

dose of chemo. Unfortunately the scan also showed that the shunt was

overdraining the CSF and had caused a large amount of bleeding on

the outside of Jonty's brain. So we have been back in Starship over the

last couple of weeks as they operated to change the shunt valve and

drain the bleeding. The new shunt valve is programmable which means

they can make adjustments to the drainage level without the need for

surgery. Jonty again came through this like the little trooper that he is,

and was blowing raspberries and playing with his toys a few hours after

recovering from surgery. Hopefully that is the last surgery required for a

long time.?

We have been searching for other potential treatment options, and

currently have a tissue sample of one of his skin tumours in the U.S. for

gene sequencing to see if there are any gene mutations that have a

specific treatment option. We haven't found a treatment option better

than the one he is currently on, although the new immunotherapy drugs

being released offer another avenue if his current treatment regime

stops working. So for now we are all back home and Jonty starts back

onto his chemo treatment in a week. His next scan is scheduled for 10

weeks time. Between now and then we will make the most of the time

we have with our brave and funny wee man until 'scanxiety' strikes

again to see if we had made any further progress in shrinking his

tumours. Fingers crossed.