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Sara's story: A blessing in disguise
Images courtesy of Paul Kuntz
Mark Ciesielski, father of patient
I adopted my daughter, Sara, when she was 18 months old. For most of her childhood Sara was a fairly healthy child. Then in late 2014, I noticed a few, small red spots (petechiae) on her upper body. Sara developed a series of spiked fevers. She seemed to recover quickly with overnight rest, but began to take more afternoon naps, which was unusual for her.
In early 2015, right before Sara’s 16th birthday, I received a phone call from the school nurse. Sara had a very high heart rate and was having difficulty breathing. I immediately called her pediatrician, who squeezed us in for an appointment later that day. Some blood work indicated Sara was anemic. Sara’s doctor prescribed some iron vitamins and referred her to a gynecologist for her heavy menses. During this time, Sara started developing deep, dark bruises near her ankles. This all led us to a referral to Texas Children’s Hospital.
Sara’s lab results revealed abnormal blood levels, including a platelet count near 11,000. Platelets help stop bleeding by clotting; a normal person’s platelet count can range from 150,000 to 400,000. In most cases, surgeons won’t perform surgery on someone with a platelet count under 50,000. At 11,000, Sara was at risk for serious internal bleeding.
Our attending hematologist, Dr. Jenny Despotovic, eventually diagnosed Sara with immune thrombocytopenic purpura (ITP), a rare autoimmune blood disorder in which the body’s immune system attacks and destroys platelets. Dr. Despotovic recommended an immediate blood transfusion and steroids as a first line of treatment. We were hopeful when Sara’s platelet count rebounded initially, but she required another blood transfusion and round of steroids when her count plummeted a few months later. Though this helped stabilize Sara, her platelet count dropped to under 10,000 by late July.
Dr. Despotovic then offered a trial study, amongst a secondary line of treatment options. This trial study involved a platelet-boosting drug already approved by the Food and Drug Administration (FDA) for adults called romiplostim (Nplate®). Sara began the weekly treatment by injection, and her platelet count gradually rose and stabilized between 50,000 and 200,000, as indicated for the study. She seemed to experience no discernable side effects, besides becoming easily fatigued. We learned the petechiae, bruising and fatigue were all common symptoms of ITP, too.
These past three-and-a-half years of care and treatment have brought many changes and adjustments to our family. Sara attended the High School for the Performing and Visual Arts (HSPVA) and recently graduated. I remember many days when we would hurry from a treatment visit to a concert where Sara played the violin in their symphony orchestra. Sara was determined to live as normal a life as possible – she has even maintained a part-time job at the Houston Museum of Natural Science. Sara recently completed her first year of studies at Houston Community College, and she plans to transfer to the University of Houston to study computer science.
Sara has such a strong and resilient character. I’m just so proud of the courage she has exhibited throughout this entire journey, in addition to her kindness in reaching out to and consoling others who are sick and suffering.
Sara recently completed her trial study, and Texas Children’s is helping her transition to a new treatment plan with an adult hematologist. Lots of uncertainties are ahead for us, but we’re fortunate to be surrounded by so many caring people who will help us move forward.
Sara Ciesielski, patient
Throughout my continuing care at Texas Children’s Hospital, I’ve truly discovered how life is filled with blessings in disguise. I also realized how fortunate I was to be surrounded by such caring people, including Dr. Despotovic, Susan Kirk (our longtime PA) and so many other clinical staff members on my care team.
When I started frequenting the oncology-hematology infusion center and noticed so many younger children there, I began to appreciate how fragile life can be. In a way, ITP has helped me maintain a positive perspective on my own health issues as I try to live my life to its fullest. I’ve tried to manage this personal challenge by being helpful, loving and kind whenever I can be and keeping a smile on my face when times become rough. I started trusting that regardless of what came my way, my faith in God, my family, friends, and church and school communities would help me remain positive and loving to meet those obstacles.
After I started gaining weight from the initial rounds of steroids, I began taking more responsibility for my own health. I shifted my eating habits from a lot of unhealthy, fast foods to a regimen of clean eating, including primarily green and leafy vegetables, fruit and lean meat. I also started exercising by walking and using the YMCA’s exercise room. These choices increased my physical energy and reinforced a positive outlook on my health, especially after losing 25 pounds. I appreciate each day of life more, and I try not to take my educational opportunities or friendships for granted.
Managing the treatments wasn’t always easy. In some ways, the tough moments inspired me to become a computer scientist. I want to find ways to improve technology for pain management and help patients feel less distressed.
Just before I graduated from high school last year, my father encouraged me to apply for a scholarship sponsored by the Platelet Disorder Support Association (PDSA). The essay I submitted won first place – a $1,500 college scholarship. It also earned my father and me complimentary registrations to attend the PDSA’s national conference in Phoenix. For the first time, we met others who had ITP at this conference, as well as PDSA’s inspirational founder, Joan Young. Connecting with these ITP families seemed to give us a boost of hope and encouragement.
When we returned home from Phoenix, my father and I talked about starting a local support group in Houston for ITP families. We reflected on how lonely and anxious we felt when I was diagnosed, and decided we wanted others with ITP to be able to connect with, share and feel supported by others with their diagnosis. We started co-facilitating a bi-monthly ITP support group, sponsored by PDSA. In our first three meetings, we gathered about 12 people with ITP, ranging from children as young as 10 to older adults. Family members and friends accompanied many of these people, who each have expressed the significance of meeting and sharing common journeys with other ITP patients.
We hope anyone with ITP can find strength and encouragement by joining the support group. If you’re interested in more information, feel free to contact us at firstname.lastname@example.org or 713-723-1633.
September is ITP Awareness Month, designated by the Platelet Disorder Support Association (PDSA) in their ongoing commitment to increase public understanding of ITP and other platelet disorders and to connect patients and caregivers with life-altering resources and support. To learn more about opportunities to participate, click here.