Ewan is less than away from receiving his CAR T infusion. I’d add an exclamation point, but am saving exclamations and cartwheels for after 2 pm tomorrow. We still have hurdles to clear. His team is having to skirt eligibility issues to keep him on the trial and make sure that he receives his cells back. Subjects can’t receive CAR Ts if they are on oxygen, have signs of infection (positive blood cultures), have detectable liver disease, kidney disease, have take steroids in the past 7 days…. the list goes on and on. He is in a very delicate place.Ewan spent Sunday night through yesterday in the PICU for respiratory distress. Getting moved back up to the cancer care unit was a big win just to keep him eligible.
There are worries that the past 3 days of spot chemo can cause pancreatitis. Since 6 pm last night, he has thrown up coffee ground colored vomit every 30-60 minutes. As of 11:30 am, nausea is controlled. He doesn’t complain of any pain (except he mentioned his thumb hurts – that kid…). Your jobs are to burn sage and say blesses and do everything in your powers to keep inflammation away while following him where you are. Denver Grandma arrives today; BFF Kelly is here and on her way to the airport to pick her up.
Michael is clearing his deck to be with me at the hospital for the next few days. It will be the two of us here, by Ewan’s side, which means that we will have agility with self-care and extra time to field questions, but not more than 5 minutes at a time. I’m looking forward to hanging a celebratory banner tomorrow afternoon and sharing good news with everyone soon.
We have less than a day of keeping a few things from going wrong to redirect to a lifetime of things going right – putting 110% into accomplishing that mission. We’ll talk about the next series of serious hurdles when we’ve cleared the current ones..
Share gingerly share this update. We are so thankful for all the folks rooting for Ewan and for all the ways love and care for our family are expressed.