It’s been a couple weeks since I posted here, and during that time Ezra has been recovering from the last round of chemo, and getting scans scans and more scans. We haven’t got the results from all those yet (second to last one finished today), but he is doing really well. Robyn says it’s almost sad when he gets this well, knowing he is soon going to be right back feeling bad from the next round of treatment… we cherish every moment.
Our last scans before the stem cell transplant will be this Wednesday at All Children’s. Because we have to be there so early (8am – and it’s a nice 75 minute drive at that time of the morning!), we decided to make it a mini-vacation. We booked a hotel on the water in St Pete for tomorrow, and will spend the day down there hanging out and having a good time with the three of us, then stay the night overlooking the bay… and All Children’s is only 5 minutes away in the morning. 😀 We’ll be at All Children’s from 8-3 Wednesday.
We go back to All Children’s the 17th, 18th, and 19th for a short injection of a drug called Palifermin which will help reduce the mouth sores stem cell transplant causes (but not eliminate – they’re a guarantee). The 19th we will also be admitted, and on the 20th he will start the chemo that is part of transplant. It’s a 4 day chemo, followed by 3 days of rest. This chemotherapy set of drugs is extremely more difficult on Ezra, and when it is done he will effectively have zero immune system. The specific drugs he’s getting are called Melphalan, Etoposide, and Carboplatin.
There are all sorts of rules about what we can and can’t have during our 4-6 week stay (sorry – no outside food, no flowers, no stuffed animals, and no latex balloons). We will be in a private, filtered room.
After the 3rd day of rest, Ezra will begin the actual transplant. It takes 2-3 weeks minimum for the body’s white blood cell counts to get back up (in essence, the stem cells are rebuilding the immune system – the white blood cells are a major part of this). They say food often tastes bad, and he will be feeling weak, and will be very susceptible to infection. He’ll be on multiple antibiotics throughout the process, and likely get fevers as well – which will need to be monitored to make sure they are quickly addressed.
During the actual transplant (which is the 27th, and will be completed that day), Ezra will have his vitals watched constantly. During the chemo, they will check every 4 hours – whether he’s sleeping or not. There is no such thing as night time in a hospital!
If all goes according to plan, we’ll be admitted the 19th of May, and released to go home somewhere around the 19th of June. It may be closer to the end of June, but we’re praying for a speedy recovery.
By that time, Charley, who is doing good, will probably be ready to come home with us, and we’ll finally all be home. Charley has had his permanent shunt put in, and they are going to do another surgery this week to adjust its position in his head – seems it’s draining correctly, but they’d like it to have a little heavier flow, and will adjust it to do this sometime in the next couple days. By mid June, he’ll be a normal newborn-size, and we’ll finally fill up this house in Northdale.
It’s scary. I’ve always trusted God is a provider, healer, and is aware of my situation and holding my family and I in His hands. While Robyn and I both share this faith and gain strength from it every day, this is still a scary moment in our lives. The “popular” Bible verses are popular for good reason, and I’m reminded of Psalm 23 today:
4 Even though I walk
through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.
5 You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
We’re there right now. And I do believe He prepares a table for us in the presence of our enemies. There’s a storm of jacked up stuff surrounding us, and yet God still is putting good things into place for us. And we will fight this crap off with Him.
9 more days… then we’ll see you on the flip side.