In Australia CAR T isn’t available yet for Johno, not for Burkitts.
The cost to self fund requires an initial deposit of $100,000 .
US trials could be an option along with self funding experimental drugs.
In September 2019, Johno was diagnosed with a rare and aggressive form of Lymphoma, Burkitt's. Initial prognosis was good, we were given an 85% survival rate and told we were heading for a total cure by December. He had a huge mass on his neck, a smaller one on his tonsils and we now know a spot on his hip.
The road was tough as it is for all cancer patients. The first round of chemo saw him home for less than 24 hours before he was readmitted with a terrible case of mucositis. He could not eat for two weeks, ulcers in his mouth and down to his stomach and his liver function deteriorated.
The high level of toxicity surprised the doctors and they decided at that point to do some genetic testing.
The lump had shrunk, but by the start of round two had grown again.
They decided to switch chemotherapy's, still on track for December remission.
After the second round Johno was readmitted to the local hospital and transported back to Peter MacCallum with what looked like pneumonia. They pressed the emergency call button on him three times that night. We thought we were losing him.
Again the lump shrunk, but by the time he had another PET scan had grown again, and all reports said, that with the levels of chemo he had been exposed to, it should be gone. In remission.
In October we changed Chemo again, and now we had a life expectancy of 50/50. Things were not looking good.
After you watch this video you will be able to see that Johno has way more life to live and is no means ready to hear the next round of news.
In December, we get the news that there is nothing else we can do, Johno has a rare mutation on top of a rare cancer that is causing the cancer to resist the chemo. We have 3 months left.
There are trials in the US, self funded experimental Australian drugs and we have the potential to self fund CAR T in Israel.
Australia do CAR T but not right now, not for Burkitts.
The cost to self fund requires an initial deposit of $100,000 USD and the final cost of treatment much higher.
CAR T, US trial and other experimental options are our only hope to get to a transplant.
We cant do this on our own, and we know we are out on a limb and even the only chance is a slime chance, but Johno chooses life! He wants to hold his partners hand as they push a Costco trolley, study music and play on a world stage. He has way to much life in him to leave us, and no one who knows him is ready to say goodbye.
- Eileen Delaney
- Bionda Pettigrew
- Megan Walker
- Annabel Faraday