It’s been a month since we put an update up what with the silly season being in full swing, kindy finishing and trying to catch up with friends and family while everyone had holidays. There have been quite a few little bumps in the road but there hasn’t been any major upsets. One of the positives was Alex’s final few visits to kindy – the school put on an end of year concert, and the kindy class performed their bucket drumming. Alex was feeling well enough to participate, and all the kids did a really good job!

When Alex was admitted on the 12th of December, after he was stabilised, the decision was reached to give him a naso-gastric tube (NGT) as his appetite had fallen off to the point of not really eating at all. This loss of appetite was a slightly unexpected side effect of the radiation therapy, but was predicted to improve roughly in line with the reduction in lethargy. The expected time for this to right itself however, was several weeks, and we certainly couldn’t leave Alex not eating for that long. So before leaving the hospital we had go through some brief training on how to use all the bits of machinery, and to collect literally a car boot full of equipment so we could feed Alex via the tube at home. Big thank you to Phil’s cousin Callum and his partner Aino for sitting with Alex while I ran around the hospital for an hour collecting all the bits and pieces!

A NGT is a temporary solution for appetite loss, mainly because (as we have unfortunately discovered) the tube comes out very easily. Since December Alex has had to endure 5 NGT insertions, all of them requiring sedation and none of them pleasant. Even with the medication he was on, Alex had bouts of vomiting and that is all it takes to eject a tube from the stomach! After each one came out we gave Alex a few days to try eating instead, having the tube go back in was a powerful incentive to try but unfortunately each time, though he wanted to, he couldn’t manage and the tube had to go back in. However apart from a brief bout of family gastro over Christmas, Alex’s appetite did slowly start to make a reappearance and when tube number 5 came out on new years day we decided to wait before getting it re-inserted as we had an appointment with Alex’s oncologist on the 5th. Even though his appetite increase was only slight it was decided that perhaps some medication to help boost his appetite was worth a try, rather than another tube.

Today we had our (hopefully) last visit to Alex’s Radiation Oncologist, he’s pleased with how Alex is picking up, but said it is usually 6 – 8 months post treatment before you see patients getting back to “normal”. The appetite booster – Domperidone – is helping, Alex is eating more than he has in previous weeks, especially if mama’s lasagne is on the menu!

Looking ahead we have a major milestone looming – the 27th of January is Alex’s first day of school! There will be photos, and possibly tears. Since Alex’s school is such a distance from us he will be using a taxi service to get to and from school, so it won’t quite be the standard first day fuss, but it’s nice to have a major milestone to look forward to that we know hundreds of other parents are looking forward to as well!

We also have an MRI booked for the 6th of March, the scan in December was more of a baseline than diagnostic, so the results from the next one will have us holding our breath a little. Just as it was after chemotherapy finished we can only watch and wait, and hope for the result of “no significant change”