Haley’s story

I had been in the process of hockey tryouts and intensive training when I started to notice large, unexplained bruises. When I woke up covered in a reddish purple rash all over my legs and arms, and my mouth full of blood blisters I knew something wasn’t right. I was admitted to hospital where, within a few hours, I was told that they thought I had something called ITP and explained that it was destroying my platelets. I was told that I would never play contact sports again and I was devastated. This was April of 2016, just 1 week before my 16th birthday. This would be the beginning of learning to live life with restrictions and uncertainty, putting aside my current goals and dreams and learning to face my new reality head on.

In hospital, I received 2 rounds of IVIG, the second one with prednisone, but my platelets failed to rise. Next came Anti-D therapy, which only caused me to feel very sick. Over the next 4 months I was prescribed 200mg of prednisone per day for 4 day rounds to stop the extremely heavy nose bleeds I was now having, along with gastrointestinal bleeding. The steroids worked initially, but within 48 hours of treatment my platelet counts would drop back down below 10 and the bleeding would resume. I experienced blood transfusions, and a spinal tap to rule out other diagnosis. It was a painstaking process to find a medical treatment that would stabilize my platelet counts and bleeding. The result was having to deal with side-effects from trialing treatments and experiencing a roller coaster of emotions, hoping a treatment would work.

My medical team suggested I start Romiplostim (Nplate). Unfortunately, at that time, it was not yet approved for use in Children and not covered financially through the province of Ontario in Canada. My parents explored every avenue to receive coverage or financial assistance for the drug, even advocating to local government officials, but to no avail. I will be forever grateful that our community and friends in St. Thomas, Ontario stepped up and held a fundraiser walk/run and raised the money needed to get me started on Nplate. I started Nplate infusions in October 2016 and they worked to raise my platelets to a safe enough level within a few months. My medical team and my parents understood that my mental health was important and, by early December, they allowed me to play hockey again. My hematologist agreed to test my counts the day before every game to make sure I was safe to play but, if I had any signs of being low, which for me were always bruises, petechiae and blood blisters, I didn’t play. I remember him telling me he wished that I was a musician or gamer, anything less risky than contact sports, but he knew I was a competitive athlete and I will always be thankful that he respected me and accommodated my treatment plan to allow me to play the sports I love.

I received over 60 Nplate injections before my platelets stopped responding. I was quickly switched to Revolade (Eltrombopag) which I have continued to take for 9 years with little to no side effects other than the dietary restrictions which are managed by me taking my medication early morning, hours before I eat. I still do not have drug coverage and am fortunate, thanks to the PDSA, to be part of a patient support program. One of the most impactful side effects of ITP for me is the extreme fatigue I experience daily. Crushing fatigue restricts the number of hours I can work and the social events I can participate in. It effects my moods at times, and, if I don’t listen to my body and get enough sleep, I become physically sick.

ITP has changed my path but has not taken the joy out of my journey. I have gone on to receive an Honours Bachelor of Kinesiology, I have travelled extensively and have volunteered at a dog rescue organization abroad. This year I will return to school to attain a Diploma in Registered Massage Therapy. I work out daily, have a small dog walking business, continue to play women’s hockey, and enjoy time with family and friends.