Lung Setback

I realize I haven't posted for quite some time. It has been a long few weeks. When she was discharged after her last three leg surgeries she was pretty sick because of the new regiment of antibiotics to fight the new bacteria found in her leg. She had a difficult two weeks home because of nausea, vomiting, wound vac changes, and most of all school starting up without her. She would try so hard to focus on responding to an argumentative essay prompt or reading about the Spanish conquistadors, but after thirty minutes of focus or so she would become completely exhausted and overwhelmed, probably not the best idea for someone who needs all of her energy to be directed to healing. Her neutrophil count got up to 1100 during this two week period which was cause for celebration, but she was saddened that she felt too sick to enjoy the good news. However, after it hit 1100 it dropped to 600 and bounced around a little. On Monday of this week we headed to Primary's for check ups with surgeon, hematology/oncology, infectious disease, and bone marrow transplant team. We checked in with hemoc at 8:30 am Tuesday morning and Timmie's heart rate was 154...she usually hangs out in the 120s which is high, but after 11 surgeries not completely shocking to cardiologists. After hearing how she had been feeling, Dr. Jensen, the fellow assigned to Timmie, felt as though we should check for a pulmonary embolism (not at all sure of that spelling....but basically a blood clot.) We squeezed a  ct scan into our already fully scheduled day, then headed to cardiology to get a holter moniter placed to measure the rhythms of the heart, then on to infectious disease. While we were checking in at the desk in ID, the infectious disease fellow came to the desk and told us this wouldn't be a formal visit and there was no need to check in. Weird. Once we got Timmie's wheelchair positioned into the tiny room, the conversation became a blur. I remember hearing the words unfortunately and test results in the same sentence. I remember exchanging a glance of mutual shock and concern with Bo. I remember seeing an x-ray of a spot on her lung. I remember tears streaming down Timmie's generally stoic but now clearly disappointed face. At this point I realized I needed to snap out of my fog and think as clearly as possible. Basically, they found something on the ct that no one was looking for, a lesion, indicative of infection, probably but not definitely fungal. The most likely culprit...aspergillus, a common fungus to invade a body with no neutrophils.  The good news...her neutrophils were up to 900. We have learned the hard way that fighting an infection with medicine alone and no ancs is a dangerous endeavor. We chose to hang on to gratitude for those neutrophils and for the fact that the problem was identified rather than dwell on the ever present feelings of disappointment, fear, grief, exhaustion, disbelief, anger. The confinement of that choice to one sentence is a drastic oversimplification of the challenge we faced in arriving at that decision, but it will have to suffice for now because some emotional battles are difficult enough to endure once without searching for the words to explain and thereby relive them again. But ultimately we arrived at the conclusion that God was still aware of our little girl and that He indeed has the power to heal her. I will never fully understand how He allows horrific things to happen to people when He has the power to prevent them, but I am coming to see that no one fully understands this. As hard as we all search for answers, the fact remains that sometimes there are none. No one can explain to me why one little girl on the floor lost her life this week or why another brave little boy in the middle of the scariest fight of his life with leukemia lost his mother this week and was left alone until his father could arrive to be at his side.  Isn't it enough that he has been so ill? Hasn't he endured enough pain? Doesn't it seem beyond cruel to separate him from his mother, his caregiver, the one who would lie with him in his bed and support him during his darkest hours. No one has the answers to explain why horrible things like this are allowed to transpire. The best we can do is hang on to any ounce of faith we have remaining. I am reminded of  a verse from a well-known Leonard Cohen song:
Maybe there’s a God above
But all I’ve ever learned from love
Was how to shoot at someone who outdrew you
It’s not a cry you can hear at night
It’s not somebody who has seen the light
It’s a cold and it’s a broken Hallelujah

Sometimes the best we can offer is a cold and broken prayer of faith when things don't seem to make sense or seem unbearable. These however seem to be the most important songs of praise, 
those we offer when we can't even fathom where we are finding the faith and strength to go on. Those we offer when we have been beaten down and seemingly pushed to our limits. So, we will continue to praise God and recognize His hand in our lives that has been so evident, especially 
during the last few months. I don't know how much more Timmie can endure. I don't know why He 
hasn't spared her from yet another disappointment, but still I trust in Him and lean not to my own understanding. The result of this setback was a surgery removing the top part of her left lung. It was successful and the lesion was fully removed. Pathology tells us today that it was a fungus and 
it was most definitely the right decision to remove it. At this moment Bo and I sit by her bed in the intensive care unit to which she was readmitted this morning because her lung is collapsed. She 
has a chest tube coming out her side, causing her excruciating pain and contributing to her 
inability to breath. The result...collapsed lung. She is wearing a mask that covers her face, forcing 
her to breath and attempting to expand that lung. Her neutrophils are 2300, the highest we have 
seen yet. She whispered through her collapsed lung a few hours ago, "I hope Heavenly Father lets 
me keep these neutrophils." The docs say that in a traumatic situation like this neutrophils can be 
stimulated to fight, so they are not overly ecstatic with their appearance. But, at least her body 
had the capability to respond. It may be cold. It may be broken. But we are grateful that they found the lesion and we are grateful her ANC is 2300 for now.