Hello Friends! Finally, a group of people who understand ITP! Yay!! My daughter, Hadley, and I are so grateful for the PDSA community. Thank you all for being here. Since every diagnosis is its own special snowflake, we are hoping Hadley's story can possibly help or provide comfort for another family. Thank you for listening.

In June of 2023, Hadley, who was twelve and a half at the time, had her yearly physical shortly before we went on vacation. The exam was normal, but Hadley had some bruising and was super tired all the time. The doctor recommended a CBC be drawn. Hadley was terrified of needles and refused so the doctor said, no big deal, we will do it after your vacation.

While on vacation the following week, Hadley was exhausted. She would fall asleep midday for between 4-5 hours and it was impossible to wake her up. Her vitals were normal, so I figured it was all the activities, the sun, and puberty. The day before we left, Hadley was in her bathing suit, sitting in an open weave chair. When she got up, there was a clear petechiae pattern on her back from the chair. I didn't know what this was at the time, and assumed it had something to with being in the sun.

When we returned home 10 days later, Hadley got a CBC. The next morning, her pediatrician called and said I needed to take Hadley to the ER right away because her platelets were 12,000. I had never been so scared. She was referred to Children's National Hospital in Washington, DC. and this started our ITP journey. After many conditions were ruled out via blood work, treatment began. First we tried steroids, no change. Then eltrombopag, which caused a slight therapeutic response, but it was short lived. Finally, Hadley received IVIG, and it worked! However, she suffered incredible side effects, and the raised platelet count only lasted 3 weeks. The worst part was the doctors told me to basically keep Hadley in a bubble because she was at extreme risk for bleeding. She was miserable.

Hadley's platelets continued to decline averaging about 5,000. In December of 2023, our hematologist decided to try rituximab. Luckily, Hadley didn't have any side effects, but unfortunately, it did absolutely nothing. Hadley's mental wellness started to decline. She was so sad and frustrated by not being able to be active.

The following January, our hematologist wanted to try fostamatinib, but it isn't approved for children. I was fed up, because this would be the fifth medicine they wanted to "try". I decided to get a second opinion. What a difference when we got to John Hopkins Hospital! Hadley's new hematologist is absolutely wonderful. She told Hadley to live her life and not be in a bubble. I cried when I heard this. It was the first time we had hope. Dr. Keates explained Hadley has Chronic ITP, which no one had told us. Hearing the word chronic really helped us understand this was an ongoing journey and Dr. Keates was going to do everything she could to ensure Hadley had a normal childhood.

Hadley started romiplostim in March of 2024 which took a while to get approved. It worked great at raising her platelets for about 3 months, then stopped. Hadley's platelets would average between 10,000-50,000. Even though Hadley still had low platelets, her bruising, petechiae, gum bleeding, and heavy period seemed to subside. We decided as a team this was an improvement and would stick with romiplostim for the time being.

In April of 2025, Hadley cut her finger, and I had to take her to the ER. Her platelets had dropped to 4,000. Dr. Keates suggested IVIG again. This time we tried a slow infusion with additional medication for the migraines, and it worked with minimal side effects. Now Hadley is on an IVIG regimen every 3-4 weeks. She is doing well but still suffers from exhaustion and mental fog, and school is becoming more and more difficult for her which is heartbreaking as a parent because I know how much she loves school.

Hadley has also played softball since the 3rd grade. It is the one constant she has. She has a terrific arm and can smack the snot out of a ball! She plays either 2nd base or center field.

In terms of her experience, it has been quite normal. The only thing she cannot do is slide since her diagnosed in 2023. I explained to the coaches that Hadley has an autoimmune disorder where she bruises easily, and will not be able to participate in sliding practice. However, her disorder does not keep her from playing like any other girl.

Hadley has only missed a few practices because she was too tired and we always make sure at least one parent, if not both, is prepared and stocked with ice packs (frozen and instant), styptic powder, and tranexamic acid for all games and practices. I am happy to report, we have only had to use ice once!

I have never not let Hadley play due to her platelet count and have tried my best not to take things away from her due to ITP. Her doctor agreed it was fine for her to play as long as she wore protective gear, which she does. We are very fortunate where we live should an emergency occur; there are several hospitals within 10-15 minutes max no matter where you are.

In terms of my experience as a parent, I was a complete basket case when she played in the fall of 2023, but after switching Hadley to her new hematologist, and learning more about the disease, I was much more comfortable letting her play. Watching her play is one of my greatest joys.

Thank you for reading Hadley's journey. I wish the best health and therapeutic platelet levels for all!!

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