This morning Ezra’s chance of surviving was none. Now, that has changed to slim. We’ll take that.
The major reason they weren’t able to schedule the chemo and continue any sort of treatment this morning is because Ezra hadn’t peed in over 12 hours – this is the method the body uses to get rid of chemo once it moves through the body, so without being able to have normal wet diapers, the chemo would have been quickly poisoning him, faster than the cancer itself was doing it’s job. In the early afternoon today, Ezra suddenly had two full wet diapers within an hour. Keep praying, people! They just started his second night of chemo right now, so we are holding to a sliver of hope. He is still not holding platelets at all, so his breathing has to continue on his own – intubating him (that tube in his throat to breathe for him) brings an incredibly high risk of bleeding internally. In other words, this is a very risky situation which is holding on by prayer and a thread.
His heart rate is lower (good), and his breathing has also calmed down. His stomach is still very distended and his liver inflamed, so we’re not sure how this will play out. We are praying.
In true Ezra Matthews Crew fashion, we have taken over the family waiting room with family. There’s 20 or so people here, crammed into our room and the waiting room down the hall. We’ve set up camp at the local Ronald McDonald house and a few hotels. They’re laughing with us, crying with us, and just being here. It matters. Some have flown in from as far as California or Seattle to be here, and the mood is hesitantly hopeful. We’re all praying, and we’re all enjoying being with each other, even in a moment like this. I can’t understand how people would be able to do this alone.
I’ve been in contact with Dr Sholler, who is the dr in charge of the Nifurtimox trial out of the University of Vermont. She chatted with me for half an hour tonight personally about Ezra and his health and the trial. She has sent me contact information for Bayer, who markets Nifurtimox, and has said they have been known (rarely, it seems) to give out the drug on a case by case basis when speaking directly to the patient or family. I’ll email them right after I press send on this update, and if I hear a negative answer – I’ll have all of you mobilize again to make something happen there. Dr Sholler said she’d received tons of email and phone calls today regarding Ezra. We CAN make things happen in that regard – together we know a lot of people.
As always, I’ll keep everyone informed. We throw all our hope and prayer into whatever basket we are able to get, and this one wasn’t even a possibility this morning – keep praying.