In early April 2013 Owen Hogan was your typical 22 month old kid; enjoying walks in his wagon, playing with his Thomas the Train play set, swinging on the swing set at the nearby park. Owen’s parents, Kathleen and Tim, were in the middle of moving houses and eagerly anticipating the arrival of a little brother for Owen the following month.
Owen’s parent’s noticed that he was developing some bruises, but figured they were results of Owen’s typical toddler rambunctiousness. Then bruising began to develop in places not associated with falling, like the back of Owen’s legs. Small dots appeared on Owen’s skin, like in an allergic reaction. Kathleen and Tim researched Owen’s symptoms, but wanted to wait to speak with Owen’s doctor before getting too worried.
After blood tests and a bone biopsy, there was reason to be worried.
In April 2013, Owen was admitted to the hospital and diagnosed with severe aplastic anemia- a bone marrow disorder in which bone marrow stops producing blood cells. This rare and serious condition left Owen with low blood cell counts, hemoglobin, and platelet counts that make him very susceptible to bleeding and infection. At that time Owen’s parents were told that there were three possible outcomes with Owen’s diagnosis: a full recovery with treatment, partial recovery (in which his body would start to produce some blood cells, but still require treatment), and no recovery; in which his body did not respond to treatment and could succumb to the disorder.
During Owen’s first hospital admission, his brother Ethan was born. There were hopes that Ethan’s cord blood would be a match for Owen, as stem cells from a related donor are the best option for transplant. Unfortunately the cells were not a match. No one in Owen’s immediate family was.
April 29th, Owen received his first red blood cell transfusion. In addition to having an extremely rare disorder, Owen also has a rare blood type. He is O-, which means that the only blood type the doctors would be able to transfuse would be O-. Owen had a Broviac catheter ( a semi permanent IV site) to allow the medical staff to draw blood and administer medicine without having to constantly stick him with a needle. The procedure went well.
Two weeks later, the diagnostic tests came back negative, leading Owen’s doctors to the conclusion that his own immune system was attacking the marrow.
May 15th, Owen was then transferred to Cohen Children’s Medical Center at LIJ, in New York, where he was admitted to the pediatric hematology/oncology unit and began an intense in-patient immunosuppression therapy regiment. This treatment involved Owen being given drugs to further suppress his immune system in hopes that his bone marrow would be able to correct itself and start making healthy blood again. Owen did experience had some reactions to the medications, which was frightening but expected. He continued to make gains with tolerating his central line and daily nursing care. Blood drives were organized and held in Owen’s name in the local communities.
At the end of May, Owen celebrated his 2nd birthday at home.
Once Owen completed inpatient treatment at the hospital, he was transitioned to outpatient treatment. This meant Owen got to go home! He was still at the hospital multiple times each week for treatment, blood tests, and blood/platelet transfusions when needed, with additional admissions when his temperature reached 100.4 degrees or higher. While being home was a blessing, Owen was not allowed to travel more than 15 minutes from the hospital in case he needed to be rushed in for treatment.
Over the summer, Owen’s doctors watched for signs that he was responding to treatment. He continued to need platelet transfusions 1-2 times a week and blood transfusions about once every 10 days or so.
After over 3 months of intense treatment, Owen’s family received a glimmer of hope. On August 6th, Owen’s neutrophil count had gone up from 80 to 200! While it was not definite, the hematologists believed it could be a sign that Owen is beginning to have a response to treatment. Over the next week, Owen’s blood count numbers held on. Then they began to fall again.
In late October 2013 it was confirmed that Owen was not responding to treatment.
The next step in trying to save Owen’s life is to move forward with a bone marrow transplant. As of today, there is not an available match for Owen.
Kathleen, Tim, and those of us who know and love Owen are asking you to join the National Bone Marrow Registry. Please join and spread the word to family, friends, and coworkers. You could be the match needed to save a life.
Be a hero for Owen.