Written by Kimberly Malmstrom
Our son, Kyle, was a normal active 11-year-old who enjoyed climbing trees, swimming, and running. He loved to run around and play with his friends. The first week of school last fall was normal for Kyle. He was excited to see friends and meet his new sixth grade teachers. However, throughout that week, he developed large bruises. Some had known causes - others did not.
Kyle then noticed purple dots (petechiae) on his legs. By Saturday of Labor Day weekend he was covered with the dots. Our pediatrician said we should take him directly to the emergency room at CHOP (Children's Hospital of Philadelphia). We saw hematologists within the hour and learned that Kyle's platelet count was 4,000- the average range being 150,000-450,000.
Throughout the first week Kyle had two bone marrow aspirations and biopsies. On Tuesday, September 6th. they told us Kyle's bone marrow was not producing any cells. He had severe aplastic anemia and would need a bone marrow transplant or ATG treatment to survive. He had multiple platelet transfusions that week. By the end of the week the doctors and nurses came in fully gowned and gloved. The doctors told us Kyle needed to go home. His white blood cells had dropped throughout the week and his neutrophil levels were very low. They felt he would be safer at home away from the hospital germs.
My husband and I and our extended family were panicked. How would Kyle be safe with two school-age children at home, Kyle's twin brother Andrew, and our eight-year old daughter Abbey? Our oldest daughter, Amanda, had just started college. While working on discharging Kyle, family members cleaned the house. The doctors told us things like dust or dirt could make Kyle sick at this stage. Kyle took over our bedroom with his own bathroom. It got cleaned daily. We also had a hospital-grade HEPA filter in the bedroom and one in the kitchen/family room. All surfaces were wiped down daily. We also vacuumed and washed his sheets daily. And of course there was lots of hand washing!
After Kyle came home, we then began the process of returning to the hospital for transfusions twice per week. They started testing to see what caused the disease and how to best treat Kyle. His three siblings were tested to determine if they were a match for a bone marrow transplant. We learned that we were blessed with two matches - 18 year-old Amanda, and his identical twin, Andrew. The doctors chose Andrew to be the donor.
Kyle had his transplant on October 13, 2011. Andrew and Kyle were the second set of identical twins to receive a transplant at Children’s Hospital- the first due to aplastic anemia. Everything went smoothly. His hardest days were receiving Rabbit ATG and the transplant itself. The combination of the cyclosporine and transplant gave Kyle high blood pressure.
He was released on November 6th after a month in the hospital and we have been home in isolation since then. For ninety days, Kyle had to wear a mask. Most days Kyle is very positive and upbeat, but it is hard to be out of school for so long. He works on his studies with me and has teachers come in three days per week.
Kyle is very sensitive to the needs of others. During his hospital stays his grandmother and her friends made him pillow cases and quillows, a fleece blanket that folds into a pillow pocket. He always had two on his bed which made him comfortable. While in the hospital, Kyle knew a three-year old girl who was very ill. After the girl had a bad night, Kyle called his grandmother and asked if she could sew a blanket for her. By the next day, a new pink blanket was delivered to the girl by a nurse who returned hours later to say the little girl had not let go of it. Kyle decided that he wanted to share that feeling of comfort with others. This spawned the idea for starting his own foundation, Kyle’s Quillows. Kyle has been learning how to sew and has been delivering quillows to the bone marrow transplant floor at Children’s Hospital. These are being used as “happy transplant” day gifts and for when someone is having a bad day - from one survivor to another. He has made 58 quillows and raised $551 so far. All money goes towards fabric, thread and sewing supplies.
Kyle wants to give strength, courage and hope to other patients. He and his brother want to provide quillows to every bone marrow transplant patient at CHOP and hope to spread to other floors as well. Their long term goal is to help other hospitals around the country. Starting the foundation and having quilows to share with the other kids has helped Kyle stay positive about his experience. He is thrilled to be making other kids feel as comfortable as he did with his blankets. Visit Kyle at: www.kylesquillows.weebly.com
Kyle's journey is far from over. He just turned twelve and continues to do really well. So far, he has stayed healthy with no hospital visits or transfusions since his transplant. We take things one day at a time. We have had a huge amount of support from family, friends, neighbors, the swim team, and school. The school has had platelet and blood drives to spread the word about the importance of donating to save a life. We know without platelet donations last September, Kyle would not be here today.
Kyle returns to Children’s Hospital on April 10th. If all goes well and his counts are good, he will return to school on April 11th. Scary-but it will be good for his emotional health to get back to a normal routine.
You can continue to follow Kyle’s journey. The Malmstrom Minute is a blog of Kyle’s daily progress which can be found on Facebook.
Update: In the summer of 2014 we spoke to Kyle's mother Kimberly and asked about how Kyle was doing.
Kimberly says Kyle is doing really well. His counts are normal though he still battles fatigue. He currently sees the doctor every 6 months. His next appointment in October will mark 3 years post BMT!
Kyle will be a freshman in HS this fall. He is playing in the marching band and running on the cross country team. Last year he played trumpet in the marching band, concert, and jazz bands along with running cross country and track. He is considering rejoining swim team this year. This summer he began his first summer job. He is excited to be making his own money! He also volunteers for a nonprofit Brendan's Fund that helps children in Cape May County who are fighting life-threatening diseases. They helped some of our fellow aplastic anemia warriors too.
Kyle's Quillows is continuing to provide Quillows to children at CHOP and special requests from around the world. Since we started in 2012 we have donated 2000 Quillows so far.
He has been surfing and playing in the sand this summer. He is super relaxed doing so - which is a huge change. He originally blamed the beach for making him sick. The year he became ill, we spent the summer there. He assumed that is where he picked up the hepatitis. We are making huge strides and are truly lucky.