Alone in a Gym with a Ball

So every night I am too tired to update the blog, and I tell myself, "Ok...tomorrow I will do it." But then I just get tired all over again. I decided a quick medical update was better than nothing tonight. She still doesn't have any neutrophils (white blood cells) but no one was expecting to see any for 4-8 weeks from her original ATG treatment three weeks ago. So basically, if she is part of the 60% that responds to immunosuppressive therapy, we should start seeing some white blood cells in 1 to 5 weeks.  Dr. Yost asked her yesterday when she would give us some white blood cells and she confidently replied, "In about a week." If for some reason she doesn't respond (but she will), we will be looking at a bone marrow transplant, most likely in Washington D.C. because of the complexity of the procedure. They would take the 4 out of 6 cord blood match that they found and combine it with a parent half match. We haven't really wrapped our minds around that yet because we are pulling for those white cells to kick in any time now.  She was hospitalized again here in Pocatello last Wednesday through Saturday. She was doing so well in clinic last Tuesday that they weaned her morning dose of steroids. Apparently, her serum sickness was having nothing to do with that. By 6pm Wednesday night she was in excrutiating pain and begging us to take her to the hospital. I had forgotten that I was the only one who has seen her in the heat of her extreme serum sickness attacks. Bo and my parents were devastated, but I knew if we could get her to the hospital we could get her some relief. There is really no way to describe the knots in the pit of my stomach when I see her like that, but the first time I almost threw up. Now I have become a bit more resilient. I tighten up my stomach the way I would if someone were about to punch me in the gut. Then, I focus on getting her the help she needs. Once we got to the hospital, they were able to relieve her pain through IV meds. I drew a huge sigh of relief as I watched her fists unclench, and I heard her loud cries subdue to quiet moans. Moments later though, the nurse took her temperature and she had a fever of 101.9. Bo and I knew the implications immediately: admission for 48 hours, increased IV antibiotics, and prayers that the blood cultures would come back negative. The thought of another infection is almost too much to bear when we recall that the last one not only threatened her leg but her life.  Her fever was down by Thursday morning and the consensus was that the fever was triggered by the flare of serum sickness. There were several other issues...high blood pressure, high cyclosporine level, swollen leg...but my short medical update is getting well, not so short. The doctors handled all the issues and we have been home since Saturday. I know that people who read the blog love Timmie and keep her in their thoughts and prayers, so it is important to add that this week has been a good one. We have been blessed. Today was the best day she has had. She studied and read for the first time since she was hospitalized. The meds have kept her from being able to focus. She was finally able to start her summer AP reading of Huckleberry Finn that some mean old English teacher assigned to torment her future students. Timmie wants so badly to return to school, and she remembers not too long ago when should would begin to dread summer coming to end and having to go back to school.  Now when she hears her friends make the typical complaints about going back, she realizes how much she has taken for granted.  She would give anything to be there with her classmates on the first day.  I watched her today at the student government meeting as we planned the first day assembly.  I knew how much she was hurting and was so impressed with the smile she put on her face as they talked about ideas for skits and entertainment. In addition to reading, visitors, and a student government meeting, she had a great day of physical therapy and made progress with moving her foot and ankle (every day getting just a little closer to walking which she wants to do so badly). Finally, she asked if I would take her to Highland to dribble. This was one of those things that I could tell she needed, so we made it work. I sanitized her ball. I wheeled her into a dark and quiet gym, one that has typically been her second home during the summer, her sanctuary. She wore her mask, and I was worried about the ball hitting the floor and then her hands, so I made her wear the purple medical gloves we brought home from the hospital. Sitting on the edge of her wheel chair with a blue mask covering her face and purple gloves shielding her hands, she began her dribbling drills. The ball hit the floor rhythmically, first the right hand, then the left, then a methodical cross over in front of her wounded leg. It was as if she was involved in a sacred ritual, and for the first time since this all started, since we were forced to become an inseparable pair, I got the unequivocal feeling that I was simply in the way.  I quietly walked to the other corner of the gym and sat softly down on the steps to avoid interrupting what was clearly a private moment. I waited for her to burst into tears as I sat, head bowed, holding back tears of my own. But it didn't happen. She dribbled and dribbled.  She pressed the ball to floor in loud, hard, high, dribbles over her head.  She hit quick low dribbles as she found her focal point on the wall. She looked up at me and smiled and repeated the process.  After about fifteen minutes she yelled over to me, "You ready to go?"  I asked her if she was tired and she told me that she was, but she was as content as I had seen her in months. I really don't know if she will ever have the chance to play another game in that gym, but I can tell you that from watching her tonight, alone in a gym with a ball,  that what I do or don't know is definitely not going to be the determining factor.