Today, Warren had his second infusion of a drug that is finally helping his Crohn's. Instead of taking a pill every day, he'll receive this drug through an IV every eight weeks (once we reach the maintenance dose level). While that's not ideal, let's be honest - either is being a twelve year old boy with Crohn's disease.
The first infusion was hard on him. Hard mentally - the kid is like me, filled with anxiety. The unknown scared the bejeezus out of him. They tried to explain and talk it through to prepare him, but he was worried. And who wouldn't be? Mike and I were worried, but so ready for him to be out of pain. Basically, we were told this drug was it - the best treatment option for his type of Crohn's. So it had to work. It was going to work.
Within 36 hours of that first infusion, just two weeks ago; we saw Warren again. Twelve year old Warren. Funny, sarcastic, witty and yet snarky - I mean, let's be honest, he's 12. And we? The parents? We're idiots. Duh. He and Elaine were joking around again, getting wild and shooting nerf guns at each other. It was nice to yell again, "hey you two! Knock it off!" Status quo - who knew you could be so delightful?
He's played baseball, he's gone to a mixer. He's slept over at a friend's house. He's given me attitude about doing chores. He hasn't missed school. I'd say that all is somewhat normal again.
And so it was today that we went for the second infusion. And today, this time, he paid attention to his surroundings because he was a little less nervous. Oh he was still apprehensive, but once he looked around? He was overwhelmed and humbled.
You see the place he receives these infusions is a pediatric infusion center on the Mercy campus. It's actually a Cardinals Cares for Kids clinic - Mercy Clinic for Children's Cancer and Hematology - and the staff is beyond fabulous. They have such patience, compassion and understanding. From talking Warren through the procedure, to offering distractions in the form of slushies and video games - they cater to kids. For us, they talked us through numbing creams, insurance and supplemental reimbursement from the drug manufacturer as well as the protocol for our future visits. (You've gotta call the center when you leave your house. Otherwise, your drug won't be ready. It's too expensive to prep and they don't do it until they know you are coming.) But the main business of this center is treating children with cancer.
The center was packed today with children receiving varying treatments. We saw them in the hallways and the common rooms. Several of them had 'been there and done that' - their IV poles were decorated and they knew how to maneuver them from one room to the next. Many of them had the tell-tale signs of chemotherapy - from their marked bags to their bald heads and vomit basins. But they were happy - passing the time by playing wii or chatting.
On our drive home, Warren got quiet for a moment and said, "sometimes, going there makes me feel awful. I just have Crohn's. And most of those other kids have cancer. It's not fair and it's sad." I agreed with him. It isn't fair' and quite honestly, it stinks. I think Warren is a freaking bad ass for the way he's handled this stupid disease of Crohn's. Some of the parents at that clinic today were watching their children fight for their lives. They are heroes. They are brave.
And for both Warren and I, this realization put Crohn's into perspective. Crohn's is no gift, nor is it a walk in the park - but it can hopefully be managed. We're thankful there is medicine to treat it, and a place to receive this treatment.