Eric continues not to have any cold symptoms after his hospital visit last week, and no bleeding either!
He had a check up at clinic today and another on Friday, but I wanted to update today since I've got a couple things to share.
First, our clinic visit today. Eric's platelets were not preordered this time because when he was discharged on Wednesday his platelets were 66, so his NP said she wanted to see his bloodwork before she ordered them. I said that was fine, but that they'd all be dead. Platelets only last a couple of days and Eric's body has essentially zero ability to make new ones. As I had guessed, his platelet count was 8. Luckily red blood cells live a lot longer and Eric's hemoglobin is over 100. Also, exactly a week out from the end of the last cycle and his white blood cells have rebounded a little. They are nowhere near normal, but they're not nothing which is a win.
Eric's Oncologist stopped by to chat with me today, along with his NP. We haven't seen his Onc in a couple weeks because Eric sees a different Oncologist when he is inpatient like last week and his Oncologist was responsible for the inpatient ward the previous week, so we didn't see him in clinic then either. However, the team had been keeping me up to date on the application to Health Canada - nothing to report! Today he did have an update though. He explained to me that the drug is not approved in Canada, so basically he needs Health Canada approval to bring it into the Country/use it. The drug has been approved in Europe and by the FDA in the US in both children and adults with AML (Acute Myeloid Leukemia) which is not Eric's original diagnosis, but it is related to his original diagnosis and is a secondary diagnosis that Eric has. Specifically, with a specific mutation causing the AML, which is also not the same mutation as Eric has. As a result, Health Canada wasn't super eager to give the go ahead just as is. However, they did reach out to the drug company to get additional information. The medication has been used, with some success, in conditions like Eric's, but there is not a lot of robust data yet. (Duh. Because there are very, very, very few kids on Eric's path.) The Company is willing to give us the drug (yay, that is one hurdle down!) Health Canada is also willing to give the go ahead, but for a clinical trial. His Oncologist says they just do a clinical trial of 1 participant, and they have done it before, but it requires a bunch more steps so will take some time (maybe a month) to organize. There will also be more approvals required to get it set up.
In the meantime, Eric will have another bone marrow biopsy on Friday and start another round of treatment, more of the same, next week on Tuesday.
Finally, the exciting news! Eric has been asked to be the Canucks for Kids Star of the Game for the Vancouver Canucks season opener versus Calgary on Thursday! I think it occurs during a commercial break, so those hoping to see it from home are probably out of luck, but I know it means a lot to Eric. He feels recognized and acknowledged for not getting to live like a "normal" kid and for all of the difficulties that he has to face.
Stay tuned for pics of Eric as the Star of the Game and, in the meantime, here is a picture of Millie from her 4th birthday on Saturday. Saturday was also the 3 year anniversary of the start of this journey. The day that my/Eric's GP called to say his bloodwork was back and it looked like he had leukemia; she told me to pack an overnight bag and go directly to Children's Hospital.
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