A Reflection, April 20, 2013

by Robyn Bryant

A Reflection:  April 20, 2013

This has been a very difficult week.  I am literally reliving all the events Christian, Chris, Bailey and I were experiencing last year as we watched Christian get progressively sicker.  I am trying very hard to be “okay” but the memories are very hard.  We have a few close friends that were with us on April 20, 2012...but most will never know our understand all that was happening to our beautiful Christian.  Each day Christian was in PICU she was getting worse...On this day a year ago, it was discovered that the blood flow in Christian’s liver had reversed.  This was immediately life threatening...the PICU Intensivist handed me the ultrasound report and told me briefly what was going on and said they were all working on a plan.  Well, I read the report and I knew for the first time this could really kill my daughter.  Yes, when she was diagnosed with A.L.L we knew there were treatment risk, but over 95% of patients do great and are cured.  There were so many things happening that day...but what stands out to me most are the feeling I had when I realized how very sick Christian was, talking with Chris by the elevator, very upset (Ann Bryant and Rachel Smalley were with Christian) and Bailey getting off the elevator and seeing me visibly upset, Bailey standing by her sister’s bed trying to be strong, but crying and Christian crying too....That evening, Christian required surgery.  The surgeon had operated on Christian shortly after her diagnosis and I knew him when he was a resident...but this day, I saw fear in his eyes.  Christian still had an extremely low platelet count and this made the procedure very risky.  We knew she would return to PICU on a ventilator and another therapy would be started that night to try to help the flow in her liver.  I could sit here and tell you all the detailed medical stuff....but that is not necessary and far too complicated to try to explain.  Christian was literally fighting for her life.  Christian made it through surgery and returned to a different room in PICU, room 6...Chris and I saw her briefly, but it was very busy in the room, I am sure they were giving her blood products and trying to get the new therapy started and the PICU doctor was placing a chest tube.  That night, was the first of many nights we would sleep in Room 316, literally right below Christian’s room in PICU...Having room 316 became a huge gift for us and I will forever be grateful that we were never ask to leave. I never spent the night away from the hospital...in room 316, below room 6 in PICU...I learned how each nurse walked and if I woke up and heard too much from above, I would lay there and worry....

Yesterday, I had the honor of being present when Dr. Thomas Barros, a second year Pediatric Resident who was present almost daily during Christian’s last six weeks presented her case...Christian was the First Reported Case of a Patient with Hemophagocytic Lymphohistiocytosis (HLH) Presenting as Veno-Occlusive Disease in a Leukemia Patient.  Christian’s primary oncologist, Dr. Eric Gratias let me know about the presentation.  Dr. Barros did a good job, but this was difficult for him because it was personal. During his presentation he spoke of how personal this was for him.  Christian’s race, changed Dr. Barros’ focus...he told me in August after her death that he wanted to seek a fellowship in Hematology/Oncology. I am proud that Dr. Barros had the courage to present Christian’s extremely difficult case.  

During Christian’s treatment, she and Dr. Gratias planned a project to investigate Unused Medical Waste Recovery.  Unfortunately, due to her complications she was not able to start this project.  But, a young pre-med student that Dr. Gratias has been mentoring for the past 2 years did complete phase one of the project.  Yesterday, he did an excellent job presenting his research.  This was important for a couple of reasons....it was the first time a Non MD/DO has presented and Christian’s project has seen a start.  I am willing to help with phase 2 and 3 of the project....so any Medical Students, 1st or 2nd year Residents willing to take on a project???  I also heard Dr. Steven Allen present a case study...that was a treat.  And, I want Dr. Merritt Adams to fill me in on her project...I missed her presentation.

Please pray for our family and those very close friends who were with us often,  the nurses, doctors and other members of the medical team that cared for Christian as we journey through the weeks ahead...During this time last year, we were very protective about who could see Christian.  Christian was always very private and she always kept any struggle she may be having to herself, so we tried very hard to honor that and protect her privacy.  Thank you to everyone that reads this...a whole community/region prayed for Christian and felt a connection to her...we did not have a Blog or Caring Bridge because she chose to fight silently like she was no different from anyone else....Remember she wanted to change the world...she change me...and I know of others impacted by her life...we all need to continue to Believe in Possibility.  - Robyn Bryant