A horrible month, but some positive news.

We’ve had a pretty horrible month what with one thing and another.  With 3 rounds done and three to go we had the mid-point MRI on Friday the 19th of April and the results were slow in coming.  The oncology team decided to press on with round 4 rather than wait to view the scans.

Round 4 was a different protocol to the first 3 rounds using two new drugs – Thiotepa and Carboplatin. The results finally did come – 10 days after the scan – by which time we had completed round 4, but were unfortunately back in the hospital because Alex had contracted RSV – respiritory syncytial virus – apparently a common cold that most kids get, just unfortunately a bit of a nasty one.

The results were not good, in laymans terms the first three rounds of chemotherapy hadn’t affected the tumors, they had grown. Since we had been told from the start of this journey that brain tumors which reoccur are harder to treat and have a lower success rate, you can imagine the effect this news had on us. We decided with the oncologist to have a second MRI to see if the fourth round of chemotherapy had had any effect given different drugs were used.

We went back to Alex’s room and I ended up having to call the nurses to help Phil as he had gone an unhealthy shade of grey and was shaking. Despite the fact I don’t have the nurses level of medical knowledge or Phil’s first aid skills, I recognise shock when I see it.  🙂

We had a 2 week wait for the MRI (another Friday) and then a very anxious 4 day wait for the results. The MRI was a week or two earlier than our oncologist wanted,
but it was then or having to wait another fortnight for an appointment time. We found out in the meantime that the reason for the delay in results from both scans was that there is a radiologist who is part time and that they are usually the one who looks at the Friday scans.  We were supposed to have a meeting with our oncologist on Tuesday, but he rang that morning and told us the results were not in yet….more waiting. We did get some good news that Tuesday however, Phil’s sister Amy had her baby girl – Matilda Skye 8 pounds 11 ounces!

We visited the hospital on Wednesday 15th to get the results. Finally some good news! the different drugs have appeared to had an effect.  There was no growth on any of the 3 tumors! While the best news would have been that they had started to shrink, the fact they have been halted in their growth was still pretty amazingly good news!  We have decided to continue with the next two rounds of chemo in the hope the tumors start to shrink, and to then have another MRI (which WON’T be on a Friday).  In hindsight the delay on the first MRI results turned out to be a blessing. If they had come before the 4th round of chemo the oncologists have said themselves that they may have given us different advice, and while it seems likely that we would have tried the new drugs anyway we would certainly have had a much longer wait for the knowledge we have now.

The results from the midpoint MRI were a real reality shock for us – for the first time it hit home that we really might loose our child. Up until now it’s been more of a ‘you have the surgery, and the chemo, and then you get better. Sure there’s a chance it might not work but that’s statistical, the worst case scenario won’t really happen, not really, not to us’.

Thanks must go once again to all of you, your love and support makes this nightmare so much easier to cope with. Phil’s post on facebook about the latest MRI ended up being a bit of a record for him – 116 likes and counting 🙂 it is wonderful to know so many people out there care about how Alex is doing.


  1. Ann Hill

    haven’t met you in person but good friends with Sue & Paul and we as a church are praying daily for you all. Alex is having to undergo all the terrible physical issues but I know as a parent the anguish you are going through is just as great. Good to hear some good news for you all.

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