Defend-2; Dosing 1 & 2 [subtitled] You Have to Laugh or You'd Cry

Drove 2 hours to Indy yesterday, took a wrong turn & got to the hospital a little late. Finally got settled in treatment room #113. We didn’t feel thrilled with that number, but what the hey. Our clinical study is being overseen by Nurse Miracle, so at least we have that, right? Got registered, ordered up the “drug,” answered a lot of questions, took some blood. Sam was pretty mad at me for getting lost, so she was giving everyone the silent treatment & staring at her new i-phone. But then they tried to get her IV started and they couldn’t get one going. Three or four sticks “blew” after they dug around in her arms for a while. Finally, they got one in her hand and it worked. By then, she was in silent overdrive.

They hung up an IV drug covered in a green bag so no one can see what it says. Could be the real thing, could be placebo. The doctor said it was a low dose that will be increased slightly during the week. Samantha had a small headache, but that could be from the “Terrible, Awful, No-Good, Very Bad Day.” (A book she liked when she was little.)

So we got in the car around 8:30 pm to head back to Louisville. But our check engine light came on. I pulled over and pulled the lever to pop the hood. The lever came off in my hand. I called my husband and he said drive to the next exit and get a hotel, then get the oil checked in the morning. We drove to the exit and all 5 hotels were booked for some wrestling tournament, plus a bowling party and probably a clown convention. Found a hotel at the next exit.

Got up this morning, drove to the nearby Wal-Mart auto center; they wouldn’t check the oil because the lever was broken and they don’t want any liability. Finally convinced the guys at Jiffy Lube to give it a try and got the oil changed and some new windshield wipers. Decided to drive to the mall to waste time before going back to the hospital, and a windshield wiper flew off on the interstate. Hopefully it won’t rain tonight. (Maybe I shouldn’t say that).

Now we’re back at the hospital, sitting in a room with the green bag dripping into Sam’s hand IV. I told her she HAS to be getting the drug, because if everything is going wrong around us, at least that must be going right. The study doctor told us that since Sam also has Hashimoto’s thyroiditis, which is also autoimmune, IF she gets the drug, it might also improve that. Please, please, please, give us something here!

The good news is Sam is doing fine, except for being bruised. We had to laugh when the wiper blew off.

The only thing we noted when the infusion was going in was that her pulse went up a little and her temp rose just slightly.

Hi Samsmom, have been waiting for your update. Reece’s heart rate was elevated quite a bit during the transfusion, but has normalized since. I wasn’t sure if it was from being anxious or even the zyrtec they made him take before he came. He was also very tired on the first and second day’s. I think you have to laugh at your story. I don’t know about you but I feel so lucky that we even had an opportunity to particpate in the study. Am I obsessed about whether or not he got the drug, YES. But if he didn’t get the drug at least I know that we tried and I’m so thankful to our endo practice to letting us know about it. I never thought I would put my child through a study, but after reading and reading and reading we determined it to be very safe and promising. I really hope Sam gets the drug. They are using it for thyroid issues and are looking into for cancer as well. Sounds like a miracle like your nurse :). Keep us posted on how it goes this week. BTW, the study will probably pay for your hotel. We had a major snow storm in the middle of the week during Reece’s infusion and they put us up on the hospital hotel for a couple of days.

I love to hear how Sam is doing, but I’m a bit lost, what is this clinical study for?

Boy I think you weren’t supposed to leave… Sounds stressful, but also funny, if you can let go of the stress:)
I hope all goes well:)
So Sam has Hashimoto, I’m sorry< that poor girl… she is a tough girl,. and her Mom is as good as gold:) You two be careful, and have a good time:)

Hi there. I am in the study club now! I cant wait to hear about how your children are doing. Cole seems better since the trial. It is make me crazy not knowing if he got the drug. He did get the worst headache, had flu symptoms, and was so tired that whole week. Lets all hope we got it. But like you said we tried. I will look for more details from you all. Thanks for sharing your experiences.