Day 32 of Lochlan’s healing journey with leukaemia just so happened to be Mitch and my 16th anniversary but unfortunately it wasn’t a sweet 16 💔
We travelled the 3 hours to the IWK children’s hospital for Lochlan to undergo surgery for his chemo port. Thankfully all went well with his surgery and although tender and sore we are back home and he’s ready for a good night’s rest.
While he was in the last few minutes of his surgery I was called to go meet with the oncology team. We didn’t want Lochlan to wake up without one of us (Mitch or me) there, so Mitch stayed to wait, and I went up to oncology to have the dreaded by long-awaited meeting.
Lochlan’s got the rarest/worst type of acute lymphoblastic leukaemia—- near haploid leukaemia. Less than 0.5% of all leukaemia patients have what he has. The results of the bone marrow test he had the other day would determine his chances of relapse after his three year treatment … sadly Lochlan still had 25 out of 100,000 cells show up as being leukaemia. Although small, it’s still significant and increases the chances of him having a relapse within 5 years of finishing his treatment. And although they would do a new treatment plan for relapse the chances of survival after relapse are poor. So it definitely was heartbreaking to hear and just another blow to an already shattered family.
That being said, there is still a chance that his next bone marrow test (which will happen mid October) will show 0% leukaemia and that helps a tiny bit but not a lot- but we will take whatever we can get.
After the next 57 days of intense chemo treatment, Lochlan will start a newly approved immunotherapy medication that has proven to work wonders on the type of leukaemia Lochlan has. The latest study shows it raises the prognosis from 25% to 50%. We will do a couple of rounds of this before spring. Because the drug is so new they don’t have new 5 year updates completed yet for updated prognosis and stats. So the doctor assumes that the numbers will be even better as more and more results come out. Because of the not so great bone marrow results and the near haploid diagnosis Lochlan is now on the radar of the Bone Marrow specialist at the IWK and the team at Sick Kids in Toronto. They aren’t saying he needs it yet, but if the new medicine doesn’t work as planned then we’d look at cart T cell therapy, and then stem cell transplant if need be.
So to say we are heartbroken is an understatement. But weirdly hearing about the effectiveness of the new drug gives some hope. This is going to be an intense few months, coming up, and I’m not sure how we will get through other than taking things one step at a time.
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