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My husband Chris and I were blessed with a beautiful baby boy named Liam on January 2, 2008. The meaning of his name is "Powerful Warrior" and little did we know what the future would bring for Liam and our family. When Liam turned 4 months old, he began spiking high fevers. His cyclical fevers came every month and lasted 5-7 days like clockwork. After 10 months of multiple doctor visits, blood tests, and specialists, not one doctor could explain why this was happening to Liam, including a pediatric hematologist/oncologist.
Liam's fevers started to become more frequent, happening twice a month and lasting a bit longer each time. On March 24, 2009, Liam was admitted to Children's Hospital in Aurora, CO. He stopped eating, was extremely lethargic, experienced excessive sweating, became very jaundiced, presented with an extremely distended abdomen, and was in obvious pain. Liam underwent various diagnositcs including x-rays, ultrasounds, lumbar puncture, and bone marrow biopsy. The results were devestating.
On March 26, 2009, 14 month old Liam Schulze was diagnosed with Hemophagocytic Lymphohistiocytosis or HLH. Liam had been fighting this disease for nearly 10 months before it became full blown, which was a miracle in itself. After some research, we decided to take Liam to Cincinnati Children's Hospital since the expert in the field of HLH, Dr. Lisa Filipovich, was there. Liam was admitted on April 15, 2009. He would need a bone marrow transplant (BMT) to have any chance at survival. However, they did not predict it would be so difficult to find Liam a suitable bone marrow match. Out of approximately 13 million people worldwide, there was not one suitable match for our little Liam. As they continued to search and search, Liam was treated with chemotherapy and steroids among other medications. He had a rare HLA typing and therefore a sufficient bone marrow match was never found. As a result, Liam remained on chemo and steroid treatments for approximately 4 months, which was longer than the HLH 2004 protocol suggests. His only option was to use umbilical cord blood for his transplant, which was only a 4/6 match.
Liam's BMT took place on July 30, 2009. Forty-one days post BMT, our brave son earned his angel wings on 9-9-09 in my arms. He fought extremely hard through this process but his little body couldn't fight the adenoviral pneumonitis. Liam's cord blood transplant was a success with a 93% donor cell engraftment. We couldn't be more proud to call him our son.
Liam's CarePage
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Liam's Lighthouse Foundation Radio Interview ON 98.5 KRZ "OUTLOOK ON NORTHEAST PA"