Update on Jonty 15 Septmeber 2015
15 September 2015
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.
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01/01/1967
