How's Timmie Doing?

 I can't tell you how many times a day someone texts me or asks me how Timmie is doing. I know so many of her friends miss her so much...so this blog is dedicated to giving you some little glimpses of Timmie that you all seem to be longing for. I don't blame you...she is pretty special. Here they are in no particular order.
Glimpse #1- After her lung surgery on Thursday, Bo and I snuck into the intensive care unit as quietly as we could so as not to disturb her. We each sat on opposite sides of her, holding her hands so she could feel us near. The nurse was going through the list of medicines with us that she had received during and after the surgery. She was moaning softly but seemed to be resting well for the most part. The chest tube was coming out her left side and an ironically soothing chest drainage machine was filling with red bloody fluid. (The soothing part comes from the bubbly fountain noise made by the water measuring pressure). She still has a wound vac on her left leg, so she is also permanently attached to that machine. We sat quietly in the dark room, holding her hands and watching her intently. Her eyes were closed but her lips began to form a word, and it was evident she was trying to tell us something.  Bo and I both leaned our ears close to her mouth. She gently whispered something unintelligible. I rubbed her hair softly and asked,"What sweety?".  She struggled to speak once more, and I looked at Bo a little shocked. I asked her if she was saying football, although I was sure that couldn't be it. She slowly nodded her head; it was apparent that even that much movement was painful. Bo clarified and asked her if she wanted us to turn on the game. Once again, the nod. We knew exactly what game she was talking about, BYU vs Boise State. We had talked about going to that game but that idea had gotten squashed by her last three leg surgeries. We turned on the game with no sound...we were, after all in the intensive care unit. With eyes still closed she motioned ever so slightly for us to turn it up. We increased the volume a bit. Not enough, we smiled at each other and turned it up some more. She listened closely with eyes closed until BYU's fourth turnover and the mention of Freshman back up QB, one of Timmie's long time friends and role models, Taysom Hill. With eyes still closed, she squeezed each of her hands. Bo and I chuckled a bit in disbelief that she could focus on football at a time like this. Once Taysom hit the field, she lifted her heavy eyes as much as she could, about half way. She watched the rest of the game this way, lifting her arm slightly off of the bed and forming a fist (the closest she could come to a fist pump) each time he made a play. Each time a nurse or doctor walked in I felt compelled to tell them that Timmie had requested the game. I felt as though we appeared like selfish, insensitive parents who were more concerned with football than our ailing daughter. This was such a Timmie moment. In one of her darkest moments, her passion for life, her love of sports, her competitive nature, and her loyalty to those she cares about came shining through. Rather than feeling sorry for herself, she found solace, even joy, in the success of someone else.
Glimpse #2- The night after her surgery, Aunt Kristy and Uncle Joe showed up with gifts from friends back home. One of the surprises was a large poster that read, "We love Timmie."  Little notes scripted on brightly colored cut-outs were glued all over the poster. She was still so sick and in so much pain, so I suggested that we read the notes later. Come to find out, her lung had collapsed, so it isn't surprising that she couldn't breath or talk. She shook her head no. A little choked up by the kindness of her friends, I suggested that Bo read the notes to her. Bo began reading the kind words of love from friends and staff members at Highland High School. After he had read a few, timmie attempted to speak for the first time in hours. She wheezed, "Dad is skipping." I looked at Bo and thought that Timmie's pain pump was set too high. He definitely wasn't skipping now and I was fairly sure I had never seen him skip. I told her that he was not skipping and asked her if she was ok. She shook her head no in disgust and tried to push the words out once more: "Don't skip around. He might miss one." I held back the tears as I realized how important the words of encouragement were to her during this difficult time. Bo proceeded with caution, assuring Timmie of his pattern and the fact that he wouldn't miss one single note written to her. She seemed to find pleasure in guessing who the note was from before he revealed the signature. Shortly after this, her nurse came in to reposition her. This is particularly painful with the chest tube. While Timmie was struggling, we heard the not unfamiliar sounds of someone's celebration of his or her last round of chemo: singing, clapping, cheering. I saw Timmie try to bring her hands together to join in the clapping as she always does to celebrate with some child she has never had the pleasure to meet. I saw the disappointment in her face when she realized she was too weak this time to join in. Her nurse misread her twitch and disappointment and said,to Timmie, "Don't you hate it when people are loud and happy when you are so sick? It would make me want to throw something." Timmie looked at her and shook her head no. I explained that she was simply trying to join in the celebration and that there was nothing that made Timmie happier than someone else's success, that her favorite hospital memories were quick glances exchanged with little children being carried past her window and the smile and waves offered in her direction. Timmie's disease may be getting the best of her body, but it is not changing who she is.
Glimpse #3-  Ok...last one. And it is quick. The docs are encouraging her to get out of her bed to a chair to help with breathing and expansion of the lung. It takes four people to help her move because her left side is in so much pain and completely immobile, her leg is still attached to a wound vac, she hasn't eaten in days, and she is on A LOT of pain medication. None of this makes for a stable patient. Moving her forgot place to place is a time of pain for her and worry for the rest of us. This afternoon, in picu - she was readmitted there for her collapsed lung- we were moving her from the chair to the bed. As we were scrambling to make sure she wasnt going to sit on any of her tubes or IV lines, we told her to pivot ever so slightly to the left. With four people supporting her she began to shimmy to the left...yes shimmy. She sang out in the tune of one of those silly dances the kids do these days, "To the left, to the left...to the left, to the left." She didn't want to stop and she went too far. We all laughed because we were shocked that she could find any ounce of humor in her situation. But leave it to Timmie to make the most out of life whenever she can. For those of you who haven't seen her for a while, she is still in there doing the best she can. Her fun-loving and sweet spirit shines through her adversity. She reads your messages as soon as she has the energy to reach for her phone and iPad. Even when she doesn't have the energy to respond she expresses to me her love for each of you and tells me your individual admirable traits and qualities. Thank you for continuing to encourage her. She is always eager to hear of your successes in your various activities. The football game Friday night brought a special smile to her face. She knew it was a big game and she was happy for you. While she hates missing all the fun, she is so proud of all of you and loves you dearly.

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.