So, it’s complicated…

We got Alex’s MRI results today, and they’re simple, but complicated. A mix of good and bad news.
Bad news. The tumors are growing again.
Good news. The tumors are growing very slowly – about a millimetre or so a month.

What the doctors think has happened is this:
After the craniotomy (brain surgery to you and me) when they tested the tumor that was removed they found that it was sort of two types – a ganglioglioma and a PNET all sort of mixed in together. A glioma type tumor is slow growing but a PNET is very aggressive and fast growing. They think Alex had the glioma growing in his brain probably even before he was born, then roughly 6 months or so before Jenny was born it changed somehow and the PNET component started to grow very fast. The chemo treatment Alex had was aimed at the PNET, though the treatment did cover the glioma it wasn’t specifically targeted to it. The doctors think that since the growth they can see on the remaining bits of tumor is very slow that the glioma is growing but that it’s not the PNET that’s back.

A few good things have come out of this, first is that because the growth is so slow they are happy to just monitor it for a while, so no treatment (yay!). The second is that if treatment is needed down the track, there are chemo protocols targeted at the glioma type tumor, which haven’t been used on Alex, which we can look at using.
The doctors won’t use a chemo protocol twice, if it didn’t work the first time, and since you are having more chemo it’s evident that it didn’t work, then a second dose won’t work either.

The best of the bad news is that the glioma treatment options can be done here in Adelaide, so for now (touch wood) we aren’t looking at treatment in Sydney.

There is a faint glimmer of a possibility of good news in all of this. Alex’s oncologist looked at the scans and saw a little black dot on one of the tumors, and noticed something (I don’t know what) on one of the others, which has him thinking that the tumors are sort of maybe kind of possibly looking maybe a bit like they might, just might, be turning cystic, which would be a good thing! If the tumors turn cystic it essentially means they are rotting from the inside out, and that would mean they were deader than disco.

We can but hope.

In the meantime we have a 3 month wait until the next MRI, it feels like a long time and it sounds a bit crazy, but we have to give the tumors time to grow, if we check to often it’s harder to see if there has been any change. So we live one day at a time until then and enjoy having a little man who is loving going to kindy, is as big a daredevil as they come, and who’s belly chuckles never fail to make us smile.

Thank you all for you kind thoughts and well wishes, and we hope to have good news for you in 3 months, lets hope it will be less complicated too!


  1. Sharon Ayris

    Dear Jo & Phil,
    I find myself holding my breath as I read your posts hoping and praying for good news. I can’t begin to imagine the worry you experience and hope that you receive some good news in the next few months. Thinking of you all. Kind regards, Sharon & the ASC Team.

    • Thanks Sharon!
      I hope to finally finish that training soon which will be a weight off my shoulders, I have come too far to let that go!

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