A Reflection, May 18, 2013

by Robyn Bryant


A Reflection, May 18, 2013

As I begin to write this, I have to take a deep breath, reflecting on this time in 2012 is heart wrenching.  I will forever be thankful for the close friends that hugged us, prayed and were just present during what were some very difficult days, but especially at this point in our journey, we could not have survived with out our rocks that last week, you know who you are.  To begin, Bailey had her surgery to repair her fractures on May 15, 2012.  We were all up very early, we could not have made it through that day without Darlene Glenn.  She spent the night with me and made sure I was up and showered when Bailey and Chris arrived to go to prepare for Bailey’s surgery.  That day, the three of us spent our time moving between Bailey and Christian.  Bailey’s surgery went great!  Darlene was with Bailey in recovery and when she got back to room 316, while Chris and I were with Christian.  Dr. Moses, Bailey’s surgeon came to PICU to update us on Bailey’s surgery and his words were, “I have never had a rod pass that easily.”  I was so thankful, something positive in a day that was not going well for Christian.  Bailey also had a plate and screws placed.  Bailey had a few rough patches during the next 24-48 hours with pain and nausea, but overall did great.  At this point, things were so awful and complicated for Christian.  We would go from feeling positive, to feeling like how will she ever survive this, she was literally hit with complication after complication.  Then on May 17, 2012, we were challenged with getting Bailey to Class Day at GPS and getting there ourselves, because Bailey was receiving an award.  That morning was a huge challenge.  Bailey felt awful.  Our friend Becky Cullum went by the condo where Chris and Bailey were staying to help her get ready and that was not going well.  They brought Bailey to the hospital.  She immediately climbed in bed and Becky stayed with her, while Chris and I went to see Christian.  We knew leaving Christian was not a bad thing, because her nurses and doctors in PICU were amazing and they loved her so much.  But, leaving was still hard.  When we got back downstairs, Becky had somehow gotten Bailey to eat and she was finally feeling better and thought she might be able to go to Class Day, so she and Becky left for Class Day.  Darlene Glenn came to stay with Christian and Chris and I headed to GPS.  Walking in the gym that day was awful.  It was all set up for Graduation the following day, we made the mistake of sitting where other senior’s parents were sitting around us.  I literally thought I was going to fall completely apart, listening to all the plans their daughter’s were making and just all the casual talk about life...our daughter was a part of this Class of 2012 too, but she was across the river fighting for her life.  Bailey received her Award and we made it through.  As we were trying to leave the gym, I saw Christian’s Cross Country Coach, Jeff Gaither and he was making his way to us and I really wanted to talk to him, because I wanted him to be able to come see Christian if he wanted to, but instead, when he hugged me I let all the emotion flow I had been holding back all morning, I could not stop crying.  This might have been okay if we were off in a corner or already outside, but no, we were right in the doors exiting the gym.  Not the best place to have a melt down.  As soon as the required pictures for Bailey were over, we got back to the hospital and Bailey spent the rest of the afternoon resting in 316.  The next day, May 18, 2012 was Graduation.  There was no way Chris and I could go, but our strong, courageous Bailey wanted to go and accept her sister’s diploma.  She wanted Maggie Butler and Ashley Zani to accompany her.  Maggie and Ashley are Child Life Specialist at T.C. Thompson and Bailey felt a bond with them and they loved Christian dearly.  So, early the morning of graduation, Ashley arrived at the condo to help Bailey get ready and then the 3 of them set off for the GPS Graduation of the Class of 2012.  Christian was presented with the first Jane Henegar Christian Character Award at Graduation, Bailey received this for her and Bailey accepted Christian’s GPS Diploma.  My heart swells with pride as I think of the courage it took for her to go to GPS that morning and hold her head high and accept these with beauty and grace.  Shortly after Graduation, we had a few visitors, one being Randy Tucker, the GPS Headmaster.  That day, it was the first time he had visited Christian in PICU (we did not allow many visitors).  I am thankful he got to talk to her and see her on Graduation Day.  Later in the day, Christian’s primary Oncologist, Eric Gratias came by to see Christian, he said, “Christian, you did it, you graduated!”  She opened her eyes and looked right at him, she knew she graduated, something very important to her.  At this point, when her sedation was lighter she was very aware of who was present in the room with her.  Later in the evening, once again, we got more bad news, it was suspected that Christian had a blockage in her intestines and in order to confirm that she would need exploratory surgery.  This was a very difficult decision!  Christian’s platelets were so low, she could very likely die during the surgery, but without the surgery the outcome could be the same.  After lengthy discussion with the surgeon, the PICU intensivist and us, we signed the consent for surgery.  Her surgeon that night, Dr. Lisa Smith is very skilled and Dr. Gregg Talbot, the PICU intensivist was there every step to support Christian.  Christian made it through surgery and the most important thing that happened that night was Dr. Smith was able to get a liver biopsy.  Something very needed, but the risk to get it other ways was to high prior to this night.  The next day, Saturday, May 19, 2012, Christian had a mostly peaceful day.  Jeff Gaither, Christian’s coach came to visit and was able to spend a long time with me and Christian.  The next morning, the liver biopsy was back and there were more decisions to me made.  The biopsy showed that Christian had HLH (hemophagocytic lymphohistiocytosis).  I will not even attempt to explain this, it is very complicated. Agressive treatment was immediately required.  When Christian was first diagnosed with Acute Lymphoblastic Leukemia, she had some mild clinical markers for HLH, but they all went away when chemotherapy was started.  This started the last week of Christian’s life and she was still running the race and fighting very hard, on 2 different occasions during that week, I thought we were loosing her, but her strong heart never quit, her race pace never slowed. I never gave up hope, we all so desperately wanted Christian to be better and whole again.  That last week, I did not like anyone to talk about anything past the immediate, I told the doctors, that even though, I still had tremendous hope, I had gotten to the point that I could not see her better.  I really think, in some ways during the last week, God was preparing me for what was to come in the days ahead.  Today, think about how blessed you are, and remember as Christian said, “Everyday is a Gift, you never know what will happen.”