JILLIAN'S ITP JOURNEY
The first time Jillian had ITP was in December of 2013. She
needed no treatments, I did no research, and I assumed this was an ailment that
we had dealt with, and we’d never see it again. Her platelet count went up on
its own over a few months time. I had no
idea that it would rear its ugly head again in the future.
In July of 2017, we were at Vacation Bible School. Jillian and I were group leaders. We were sitting down while our kids were having a snack. She said that when she scratched her leg, these little red dots and lines showed up. I looked, and messaged Dan that the thing she had with her platelets from a few years ago might be back. I called our family doctor the next morning that helped us the first time she had ITP. She said I could bring her in for a blood draw that morning. Got a call a couple of hours later that her platelet count was 15,000. She got us an appointment at Cincinnati Children’s Hospital for the following day. Now her count was down to 12,000. I asked our doctor if she was now considered “chronic”, since she had this in the past. He said it might be, but that he also had patients that got it a 2nd time, and then never dealt with it again. And that most child cases clear up within a year.
We decided to just “watch and wait” at that point. They said if she got her period we should be extra watchful, because it might be really heavy. Well, we were waiting nicely until her period started. She ended up in the hospital at the end of July with her first dose of IVIG (Intravenous Immunoglobulin). We had to stay the night, because they needed to watch for allergic reactions. They discharged us the next afternoon, but because of the bleeding Jillian’s hemoglobin was very low, and she passed out in the elevator on the way to the car. That landed us in the Emergency Department and 2 units of blood. We stayed another night. She also now takes a hormone pill to keep her from getting her period, because we don’t want to end up in the hospital again because of it!
We discovered that the IVIG doesn’t stay with her very long. It raises her platelet count to normal levels, but then they drop off quickly again. Next we tried steroids, which didn’t work. Then another IV medication, WinRho. She had a reaction to that, which landed us another night in the hospital. Next we decided to try a drug, Promacta. This raised her counts (eventually) a bit, but not super high. And she had such joint and muscle pain, we decided to take her off after about 3 months. Now we’re “watching and waiting” again.
She’s been up and down with her platelet counts, but she’s surviving. She’s a warrior, fighting every day. She still dances, although not as much or as gracefully as she used to. She’s so tired that after a day of activity, it’s hard for her to get out of bed the next day.
We decided to sponsor our own walk/run because we want to raise funds to help the PDSA. There currently is no cure for ITP, but they need money for research for other treatments and medications. We’re hoping that one day there will be a cure!
PDSA is a 501 (c)3 organization.
Contributions are tax deductible to the extent of the law.
PDSA is eligible for corporate matching programs.
PDSA receives NO federal funding.
