First of all, on behalf of Liesje, Andy, Lachie & Harry, and our extended family, thank you. We're deeply grateful for all the love and support our family has been shown during the darkest of times, from all over the world. We appreciate all the messages of support and offers of help, and while you may not always get a reply, please know that Liesje & Andy are reading all of them.
Liesje & Andy met with the oncologist and neurosurgeon yesterday, and go in on Wednesday for Lachie to have a mask fitting for his radiation therapy, which will start in a couple of weeks. He'll have six weeks of radiation as an outpatient, and rescan after a couple of weeks. The aim of radiation is to shrink the tumour down to give Lachie as much time as possible for him to enjoy life, however, the tumour will grow back and usually doesn't respond to a second round of radiation. The silver lining with this treatment is he gets to be at home doing what he enjoys, instead of being stuck in hospital.
In terms of chemo, there is no real evidence of effectiveness for kids with DIPG, so it's always going to be a question of quality of life vs prolonging his life. There is a trial in Aussie that will be available here post radiotherapy which they will explore, plus look at any other trials elsewhere in the world.
At the moment, Lachie isn't aware of what is going on, other than there's something going on that is affecting his vision, so he's still his normal full of life self. We hope to keep it that way as long as possible for obvious reasons.
If you have any questions or ideas that may help, please feel free to contact me directly.
I will continue to update this page as we navigate this nightmare.
Nikki
