What a crazy one it was… I actually spent the day laughing at myself.
Monday began with Maggie, our dog, barking at the front door. She was letting us know that my brother was here to pick her and Chris up to spend 3 days with them. Where we out of bed? Nope… been hitting the alarm clock since 5:30am and punching Mike to go turn off his 🙂 (He has set up across the room so he’ll get up.. he can sleep through it! But I guess I shouldn’t talk)
I rushed around getting Chris dressed. At least I had the presence of mind to pack Maggie’s bag Sunday, and Mike did Chris’.
We got them out the door in the truck. I walked back in to start getting Jesse ready. I looked at the clock, almost 7. No way would we make it to CHKD in downtown Norfolk from Williamsburg by 8am. I called our nurse and left her a message that we’d be late because I just couldn’t get it together.
As I was talking to the nurse, I looked down in the kitchen at Shiloh’s, my brother and sister-in-law’s dog, bowls. Crap! It had been almost 15 minutes since Robert left our house on his way to Richmond.
I called him. “Hey Bert, I’m looking at Shiloh’s bowls. You’re going to have to come back. Where are you?”
Robert, “Passing the Toano/ West Point exit on 64”
“Rats” (Although I might have said something stronger….)
Robert graciously came back and got the bowls. By this time I had Jesse loaded in the car, and we headed out after them.
Amazingly we arrived at clinic only 10 minutes late. Don’t ask me how that one happened… I have no idea.
At clinic we settled in to begin the wait for a room to open on 8B. The plan was Jesse to be admitted for IL-2. This is a t-cell booster given in front of and during Round 2 and 4 of the Antibody for 96 hours.
Jesse got the chance to see several of her friends that make the trip to clinic on Monday. We don’t normally see them because we come in on Tuesdays.
Jesse would have been admitted for the IL-2 on 8B this week. The infusion would have lasted 96 hrs, running at 5mls per hour. The doctors and nurses have found that side effects are lessened if they infuse the IL-2 slowly. I’m cool with this because we are on 8B where Jesse can go to the playroom now that we are out of the 100 days and more freedom 🙂
After meeting with the doctor, and her looking at Jesse’s skin… the decision was made to hold off another week. The doctor was also concerned about the increase of calcium in Jesse’s labs. In fact she was debating about putting her on medicine to lower it. And she did mention that our next round of Accutane could not happen with her calcium at that level.
I know that Accutane is vital to Jesse because it is making her cancer cells that can’t be removed mature. Hopefully this will keep them from dividing and growing. But let me tell you… I can’t imagine a teenager on this drug just for acne… Jesse is whiny. Her skin has peeled, turns red easily and quickly, scabbed in places, itches, and her appetite is quashed.
The doctor suggested that cover her in Aquaphor to help her skin. So now we have the greased kid thing going on. Luckily Jesse is a good listener and I don’t have to chase her down. She complains… I tell her she’s a greased pig which makes her smile.
We had to wait until 12:45pm to leave clinic because the research team needed 2 samples of blood from Jesse 4 hours after she took a does of Accutane. She told me why, but I have slam forgot… it was that kind of day.
Right before we had the labs for research drawn, the staff came and sang Jesse happy birthday, gave her a shirt they’d all signed and a balloon. It was very sweet of them to do that for her. I really appreciate it. Jesse seemed confused. I think that since we celebrated her birthday on Saturday with her dad, she thinks that her birthday had passed.
As Jesse and I made the trip home, I was amazed at how little traffic was on the road for 2pm on a Monday. I kind of wondered if I had missed the memo that Monday was really wacky Wednesday in disguise.
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Please for the next few weeks keep the Hubbel family in your prayers. Their daughter, Emily, has begun the chemo for stem cell rescue/ transplant. If you’d like to keep up with them, please visit emilyhubbel.com