Defend-2; Dosing 3-4 or My #1 Type 1

I learned a long time ago that hospital doctors and nurses don’t call their patient by name; they like to refer to them by their disorder or their affected organ. My son was a “heart baby.” That ticked me off at first, but then I learned that you don’t WANT those people to know your name. When they started calling him Hayden it was just a sign that we’d been there too long and they knew a little too much about us. Maybe they call patients by their disease so they can really focus on the problem at hand.

So I was thinking about calling Samantha “Miss Pancreas.” Or I guess she would have to be “Miss Pancreas/Thyroid.” As in, “Have you delivered the cure to Miss Pancreas/Thyroid in Room 121?” (That’s how they talk). “Did you see those amazing BG numbers from Miss Pancreas/Thyroid in Room 121? That study drug must be working!”

Really, Samantha is My Number One Type One and we’re sitting in a hospital while she gets infusion #4 for Defend-2, hopefully a dose of the drug otelixizumab. Infusion #3 went smoothly. Infusion #4 is going well also. Same responses from Sam as far as I can tell. Her temp goes up slightly while getting the infusion. Her pulse rises from a regular 50 to around 58. She gets a slight headache. This carries over through the next day.

She takes Zyrtec and Motrin one hour before we get here, as per the study guidelines. This is supposed to be battling any possible side effects. We drive 2 hours to get here, sit in the hospital about 4 hours, then drive home. We’ve been getting back to Louisville around 9:30 pm and I must say Samantha is pretty grouchy by then. Is that a side effect? Who knows? Miss Pancreas/Thyroid is also a teenager with frequent mood swings. But we love her anyway.

I remember when our daughter was small, she was being tested for food allergies among other things, and at times wondered (and she too now agrees) if what I sometimes perceived as a reaction, was in fact sheer exhaustion, or hunger, or just plain old “I’ve had enough”!!

This sounds like us 4 weeks ago. Same routine, same grumpy teenager. Cole got a major headache by day 4. Hang in there you are half way there. Mr. Beta cell is still doing well.