Playing the Game

Samantha is officially in the Defend-2 trial now. My husband took her to Indy Sunday so she could do a meal tolerance test and get a continuous glucose monitor installed. I say installed because it’s a little white disk with a couple of wires sticking out and it’s on her right lower back. It’s covered with clear tape so that she can take a shower or bath – continue to play basketball and get ready for softball tryouts – without knocking it loose or damaging it. This is a secret little CGM: we can’t see any of the readings. It’s just gathering information on my daughter to report it back to the study.

Starting Feb 19, we will travel to Indy for 8 days in a row so she can get an infusion. It’s either going to be otelixizumab or a placebo. She has a 2/3 chance of getting the drug, which may extend her honeymoon period and possibly prevent future complications. The study coordinator in Indy seemed a little surprised that we would drive from Louisville to participate, but the hassle seems small compared to the potential benefits. We’re ready to explore possibilities and not just take this diagnosis and its treatment as status quo.

Meanwhile, I’ve been fighting with the high school to write out a 504 plan for Samantha, just to ensure she’s protected. My big concern is that she will be allowed to take a break or eat a snack during those hours-long tests students have to take in high school. I called the counselor twice and she told me Samantha didn’t need the 504. I talked to the assistant principal. He said talk to the counselor. I called the board of education. They said she needs a 504; get the counselor to do it. I called the counselor back. She was a little peeved that I insisted on a 504 even after she told me Sam didn’t need one. I told her I went over her head. She said, “Give me a few minutes.” She called back and said, "She does need a 504; I just asked another counselor. Come in Monday."

So everything is written out now: she can take breaks, drink water, and check her blood sugar without being penalized. She will not be discriminated against and will be ensured participation in athletics. The only thing Samantha didn’t like about the meeting was that the counselor said she had a disability.

Score: Us 2; Them 0

Good work and best of luck on the trial!

Fingers crossed tightly for Samantha! Wishing her success.

Good for you for fighting for her 504. I wouldn’t like being labeled disabled either.

Unfortunately, “disability” is the terminology that goes along with getting a 504 plan. We just couldn’t get around it if we wanted to get a plan on file! I knew she wouldn’t like that part.

FYI, you can see what is on the CGM after the fact. I think I saw ours at the next appt. It was interesting to see that my son had highs right after breakfast that we didn’t know about. It also showed that he was very stable in the middle of the night, which was reassuring. Be sure to ask to see if if they do not offer it to you. Of the many gallons of blood they have taken during the study we also got his A1C checked at the 2month post dxd and it was down from 8.4 to 6.4. Regarding the 504 you may want to make sure that she can be excused from having to make up ‘grunt’ work if she misses school. My son did not go to school the week of the infusion although it was only 30 minutes away. The process was a bit exhausting although he didn’t have any ‘signficant side affects’. He is only in 7th grade so less presssure than high school, but I asked the teachers what they were willing to exempt him from. It’s hard enough get used to having diabetes and participating in the study, I thought it was unreasonable to make him do every little thing his missed. Will be watching for your updates, good luck!