"They Make Each Child Feel Special and Important."
March is Child Life Month, and I am thankful for this chance to share how Child Life Specialists and many others at Riley Hospital made a difference for my son Jace.
Jace was referred to Riley by his pediatrician in August of 2015 after receiving abnormal lab results. He was admitted just five days after his 11th birthday with the suspicion of leukemia.
We were extremely blessed that Grzegorz Nalepa, M.D., Ph.D., was the hematology/oncology doctor on Riley’s fifth floor the weekend Jace was admitted. A bone marrow aspiration revealed it was not leukemia. This started the five-month process of several visits to Riley a week for testing, and later platelets and blood transfusions, as Jace's counts continued to drop and he began to deteriorate physically.
It was revealed in testing that Jace had mycroplasma or walking pneumonia. It was believed this was causing Jace’s muscle pain and weakness. In rare cases mycolplasma can cause muscle pain/weakness and abnormal labs.
Jace was given high doses of steroids in attempts to reverse the effects of the mycoplasma. It appeared it was working until three weeks into the treatment when Jace’s counts began to drop again. That left Dr. Nalepa with only one other option. Dr. Nalepa performed another bone marrow biopsy and our fears were confirmed. Jace had Severe Aplastic Anemia.
We then began testing our family for possible bone marrow donor matches. Through testing it was revealed that Jace’s older sister, Audrie, was a perfect match. Dr. Nalepa referred us to the bone marrow transplant team and the process for bone marrow transplant began.
Jace was admitted on March 18th to begin to prepare him for the transplant. During Jace's 40 day stay, the Child Life Specialists would visit Jace every day and help him transport his mind to happier places, even if only for a short time. He enjoyed the arts and crafts activities like painting and modeling clay. The music therapist helped him practice some songs on the keyboard, and the Child Life team helped him hold a concert in the stem cell unit playroom, complete with decorations, fliers and tickets. Child Life Specialists also helped Jace by providing massages. After lying in bed for lengths of time, muscles begin to get sore. The massages helped Jace relax. For a child to have some sort of outlet while undergoing treatment is an amazing and wonderful thing.
Our God is an amazing and awesome God. We give him all of the praise for Jace's progress and healing, which has been amazing. He enjoys a seemingly normal life these days. Jace was even able to participate on our Junior High wrestling team this past winter. He also plans to play one of his favorite sports this summer: baseball.
We love Riley Hospital for so many reasons, but mainly because everyone has the child’s best interests in mind.
They make each child feel special and important.
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