Cryptococcus, Hatcher, and the Saint

Just a quick medical update. Timmie had 900 ccs of fluid drained from her lung this morning in interventional radiology. 900 ccs! That is 30.5 ounces. Nearly 4 cups of fluid. No wonder the poor kid couldn't breath and get her lung to inflate. They placed a chest tube, so fluids continue to drain.  Her fevers spiked pretty high last night, so we are sure hoping this helps with pain, fevers, and nausea. They will test the fluid for bacteria or fungus and try to figure out why this happened. Meanwhile, Infectious Disease came in with some news from University of Washington. The original fungus found in her lung was not aspergillus after all. Rather it was a fungus called cryptococcus, which they are telling me is much easier to treat. She will, however, have to stay on her anti fungal med (v-fend...I only remember the nickname) for six to twelve months. That doesn't sound so easy to me, but apparently it is much easier to fight. Of course it is fairly rare, and the "smartest infectious doctor alive" has seen less than 100 cases in his career. However, it is much more common in other parts of the country, and smart people know other smart people, so the "smartest infectious doctor alive" will contact the cryptococcus expert and pick his brain. They will test the fluids they extracted from her lung this morning for bacteria and fungus, and they will look for an explanation as to why this happened. She has been awake for about an hour and a half, and we are all surprised at how well she is doing. Her fever is down a bit, but she is still groggy from the sedation.  She just ate some soup and bread, asked for an icee (of course... it is her favorite part of any surgery or procedure) and is getting ready for respiratory therapy. She is in much less pain than we expected, which is a huge blessing because we should get her up and moving tonight. I hate to be too presumptuous or to get my hopes up, but she is doing fairly well at the moment. Her soccer team and a few other groups of friends wanted to come and visit her this weekend, but when we found out about the procedure, we realized there was a good chance of complications. Her last chest tube landed her in picu with a collapsed lung. She was very disappointed that she wouldn't be able to see her teammates and friends...at least not this weekend. She is drifting off to sleep now and keeps asking me if her dad is here yet. She loves it when he is here, and gets so sad when he has to get back to Pocatello to work and to take care of little Julian. Lately she has been missing Julian terribly as well. Two nights ago, through her tears, she told me that she didn't want to miss any more time with him before she goes off to college. Ok...I said this would be a short medical update, but I have to share some good news. While Timmie was having her chest tube placed, I saw a message that she had received from Hatcher's mother. Before she got sick, Timmie and her sophomore class raised money for Make-a-Wish so that he and his family could go to Disneyworld. He has had a rough go of it, and Timmie realized that he might not make it to the trip. She and Julian have prayed so hard for him daily, that he would be able to go to Disneyworld. Britt's message was informing Timmie that they are flying out tomorrow. She sent a cute picture of Hatcher and his sweet sister, Jackson, preparing for their trip. As soon as Timmie opened her eyes from sedation, I whispered the good news to her. An instant smile swept across her face. She wanted this so badly for him and his family. I believe that certain people are sent into our lives for special reasons. It was no accident that Timmie crossed paths with the Wheatleys, and I am so grateful that she can look up to people of such character, courage, faith, and strength.  Have fun guys! As always, our thoughts and prayers are with you! Timmie loves the Princess and the Frog princess. Take a picture if you see her. Oh...one last thing. Have I mentioned that Dr. Carroll is a saint? She made such a huge sacrifice today to make sure that Timmie could get her wound vac change done while still under sedation. She is the most selfless and genuine person that I know. I can completely understand why she and Timmie share such a strong bond. They are kindred spirits. 

The Latest Hurdle

Last Saturday Bo and I sat in a waiting room while Timmie finished a two hour MRI on her leg, the one that is still attached to a wound vac. The pain in her foot had intensified and we have all figured out that when she gives in and pushes her pain pump something is definitely wrong. Our prayer was that there was no infection and she would not need surgery. I could see the worry in Bo's eyes, which is rare because he always stays so strong and positive for the both of us. Dr. Carrol, her surgeon, (I can't mention her name without reannouncing her sainthood,) gave us the message immediately, even though it was her day off, that there was no infection and she would not need surgery. We were relieved, but found out that she instead had a bone infarction in her lower leg. The best way I can explain it in my limited understanding is that blood supply got cut off to part of her bone and it essentially died.  That doesn't sound good, but that is my oversimplified explanation.  Once again she began asking her most common questions: "Will my leg ever be the same? Will I play basketball again?" No one really has a good explanation as to why this happened. They see it frequently in sickle cell anemia patients, and they know it can be extremely painful. The hope is that it will eventually heal itself, but it could take several months to do so. For nearly a week, she has been making slow but steady progress. Her white counts have been on a steady rise which is cause for celebration. Yesterday her ANC was 2500. She was getting more mobile, and even went for two walks with her walker. However, her low grade fever has been obstinate and persistent, causing all of us to worry that we are missing something. Then two days ago, the nausea set in again causing her to feel discouraged and miserable. We (well the doctors...I include myself because I feel so much a part of the daily challenging decisions) were just about to chalk the pesty fevers up to a medicine reaction and start making plans transitioning towards going home, when Timmie let us know otherwise.  At 7:30 pm last night she woke from a long nap; she was grabbing her side and yelling out. She reached for her pain pump and hit it four consecutive times after waiting the required 20 minutes between pushes. That was a dead give away; she never hits her pain pump unless something is seriously wrong. This morning a ct of the chest showed two large collections of fluid in her lung that would explain the pain, the fever (which isn't low grade anymore at 102.8 and headed in the wrong direction) and maybe even the nausea. She will go under sedation tomorrow to have another chest tube placed to attempt to drain all the fluid. The hope is that it works, otherwise she will need another surgery. The surgeons reminded us that as painful as it is, she will need to move around as much as she can with the chest tube; otherwise, her lung will collapse and all the fluid won't drain. A predicament we remember all too well since we were just facing it a little over a week ago. It is nearly impossible to get a kid who is fighting feet, leg, and chest pain as well as severe nausea to "get up and walk around a little."  The key is to give her enough of the pain and nausea meds that she will feel like she can move without screaming or vomiting, but not so much of the meds that she is completely snowed and unable to open her eyes...let alone move around without falling.  A harder balance than one would think. Honestly, I felt a little angry as they reiterated what she needed to do to avoid further complications when in my heart I knew the expectation was completely unrealistic and almost entirely impossible. Last time they gave us these instructions, we sat in the picu by her bedside and she could barely lift her hand. I knew it was misplaced anger, but I'm not sure where to place it, so I guess there will do. Meanwhile, three Homecoming dresses hang in her little triangular closet at the end of her bed. October 20th is a good goal they say...or at least it was. Do I let her find things to look forward to even though I have watched her disappointment more times than I ever want to remember? What choice do I have? There are no words to tell her to stop looking into the future, to stop dreaming, that things just aren't going to work out the way she wants them to. Each October day that comes and goes brings us one day closer to the beginning of basketball season. None of the disappointment she has faced, none of the normalcy she has lost, will come close to the devastation she will feel when she realizes that her dreams of stepping on the court with the girls she loves are simply out of reach. I'm sure we will tell her that there is always next year, that at least she is just a junior, that people miss seasons due to injuries all of the time. The truth is that nothing we can say will change the fact that to a sixteen year old, hell, to anyone, this just doesn't seem right. It doesn't seem real. That literally in a moment everything can change, can be stripped away. At this moment she sits on her bed stirring her root beer icee.  Her gaze is distant and I wonder what she is thinking about. About an hour ago I saw her scrolling through Facebook or instagram or one of those things. She scrolled too quickly to really take notice of anything. How trivial it all must seem to her. Now her nurse is prompting her to take her meds and reminding her how important it is for her to hold them down. Her shaky hand slowly lifts one pill at a time towards her mouth. Her daily challenges are getting to the commode and taking her meds. How trivial it all must seem to her.  There was one bright spot to my day. I walked by Kenton's room (the cream soda boy) and felt compelled to stop and give him a wave. He gave me the most enigmatic wave anyone has ever given me....probably because I'm not all that exciting or impressive. He just recently had his bone marrow transplant. He gave me a double thumbs up and a grin swept across his entire face. I could read his lips as he looked to his dad and repeated, "Is that Timmie's mom? Is that Timmie's mom?"  You know, it's funny...these kids don't get much of a chance to meet, but they inspire one another. Even though it seems that Timmie has had her fair share of hurdles, she will face this one head on and prepare to jump, just as she has all the rest. She will do it with a green Team Kenton bracelet on her wrist.

Darkness

I wrote the following blog one week ago on Thursday, September 27, one week after her lung surgery. I never finished it, but the very next day, she slowly started feeling better and we were hopeful she was headed in the right direction. She started being able to maneuver herself around in the bed. Next she could get out of bed to the bedside commode, and finally, she made it to the shower and for two short walks down the hallway with her walker. Before the progress, this is what I wrote:
The last two days have been so difficult. It is a feeling that is hard to describe, but we have been here once before when the pseudomonas was winning the battle with her body and she was so weak and fragile and sick. This time we can't really get a hold on the cause of her sickness. She was up six liters in fluid and looked almost unrecognizable, like she might pop if I pushed too hard on any part of her body. As of Monday night, she weighed fourteen pounds more than when she went in for her surgery last Thursday and she hasnt been able to eat at all (except for Monday when she had a few good hours...a scoop of vanilla ice cream and twix for breakfast and a little bit of a Costa Vida sweet pork salad at lunch.) At that point she was feeling a little bit better; her chest tube was out and she was cracking jokes as well as showing some fiestiness and irritability, which isn't really in Timmie's nature unless overly provoked on the basketball court. It was good to see these signs of energy, and she was actually quite funny. For example, I asked her if she wanted Costa Vida or Cafe Rio; she got agitated, rubbed her head, and blurted out, "I don't know. It confuses me. Some people say one is better." Then, with a look of disgust, "It's like politicians."  We all got a chuckle out of that. Timmie was in the hospital for both the Republican and Democratic National Conventions and watched several speeches trying to formulate her own opinions. You can see how that worked out for her.  The last few days have been extremely difficult. She has a collapsed left lung that she is trying to inflate with all sorts of respiratory therapy, but this is nearly impossible because she is nauseated to the point that when she opens her eyes, she vomits. Plus, her feet, yes both of them, are red, hot, swollen, and painful. It is difficult to move around with nerve pain in your feet, pain in your lung and chest, and overwhelming nausea. At dark moments such as this, the world just seems so overbearing and heavy,  and no matter how hard she tries, no matter how hard I try, the darkness is inescapable. We sit quietly in her room with blinds drawn, hoping and praying for a ray of light.

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.

Why I Write

In an article entitled "Why I Write," Anna Quindlen reflects, "Writing can make pain tolerable, confusion clearer, and the self stronger."  I teach this to my students. I believe it. Today I write in an attempt to make confusion clearer.  I don't know if it will work, I don't know if I should be doing it here, so publicly; I am a fairly private person. (I'm really open with people I am close to, so I am sure you are perplexed by that comment.) Irregardless, today I write.  I will not proofread. I will not contemplate each word or the syntax of each sentence. I will just write. Testing out your own lectures is probably a good thing. ??? My emotions are mixed, although I feel that they shouldn't be.  There was a glimmer of hope last Thursday with Timmie's blood work.  ANCs : 100.  (ANC = absolute neutrophil count).  ANCs have been 0 for over two months. I, along with doctors and nurses, watched that number anxiously, each and every day for over 4 weeks at Primary Children's. Then, Thursday, ANCs 100. She needs 1500, but 100 is something, right?  I call it a glimmer of hope, but if you combine it with some intimate feelings that I have had the past week or so regarding our hope and prayers for her therapy to work, along with some interesting and more than coincidental timing, I should probably be calling it a big, fat ray of hope. I felt more peace and happiness on Thursday than I have... well... ever. You can imagine our prayers of gratitude and our feelings of relief. So how is that those overwhelming feelings of hope and peace can't just last. I feel like they should be able to last. Always. Why is it that everything has to be such a rollercoaster?  Why is it that peace and solace have to be so rudely interrupted by fear, doubt, pain, and confusion?  I am sure there are answers to these questions.  Despite moments of reassurance and encouragement, my heart still swells with sorrow after a few days of watching her suffer. One ailment will resolve, and another will appear.  One pain will subside, and another take its place.  One worry leaves our anxious hearts, and another enters in a blink of an eye. I usually take time to ponder... look for answers.  But today... I just write. Sometimes because of her maturity and her courage, we forget that she is a 16 year old girl. She wants to walk, run, laugh, spend time with her friends.  She wants to grab her keys, hop in her car and head somewhere... anywhere. There is a pang of anguish in her heart when she stops, ever so briefly, and thinks about what she may be missing.  How long will it last?  "I don't want to miss my junior year," she said to me tearfully the other night. She told me last night that she doesn't want to be the girl that people feel like they should "visit."  She misses being normal. She misses people simply wanting to hang out with her because she is fun and they want to be with her.  I would have never guessed something as simple as the word "visit" could make her feel... sad. Every so often I am reminded that she is simply a 16 year old girl wanting to feel... normal. Normal. What does that mean anymore?  There are so many people who deal with so many different struggles, trials.  Some that seem intolerable to be borne. How many people look out at the world around them and wish that something about their lives could be more... "normal."  I am starting to think that normal doesn't exist.  That we all have our own kind of normal.  We are forced to create it for ourselves.  Should it be  normal that my 6 year old seems the most happy when he can help prepare and deliver medicines to his 16 year old sister? Should he be exposed to the type of suffering he has seen at such a young age?  Please don't mistake my heartache for a belief that I am the only one who has suffered or who ever will. It is the exact opposite.  This experience with sorrow and suffering has opened my eyes to the immeasurable amount of suffering on this earth.  It is everywhere.  As deep as my sorrow runs, there are people every minute of every day dealing with more...so much more.  What part does suffering and sorrow play in this life? Why is it so important? Is it essential? Yes, there are answers.  But the questions seem to be releasing some sort of pent up emotion that I can't really describe.  OH! And how is it that people can be so overwhelmingly selfless and kind? I am daily astonished by the willingness of apparently everyone to help me. To help my family. That is the most humbling thing I have ever experienced. It constantly reminds me that I need to be better, do more. Why in a world filled with such goodness, does ugliness and evil still exist?  How can some people love so much and others be consumed with hate? I had almost forgotten that hate existed because we have been enveloped in love from every angle.  But then, when you least expect it, hate rears its ugly head. How could someone, anyone, look at my suffering daughter and see nothing more than a skin color that is different from their own. I, briefly, had forgotten that something that ugly could exist. What do I resolve?  Perhaps that most of humanity is good, truly good. That most of us do the best we can each and every day to make sense of a complicated world.  That we each have moments of strength and weakness.  That as much as we want to hit that plateau of strength, happiness, peace, humility, righteousness (and just stay there!  shouldn't we be able to stay there once we have discovered it?)  we ultimately slip, stumble and sometimes even fall hard into moments weakness, sadness, even desperation.  I guess that life will never get boring.  There will always be something new to tackle, something different to overcome, something else to learn. In the end, I hope for more good days than bad, more strong moments than weak, more surety than doubt, and more kindness than anger. I hope I can become like those who have given so generously to me. I hope that for me selflessness can become second nature.  I hope that more people can let go of anger and hate and grab hold of peace and love.  As cliche as it sounds, I hope the world can become a better place and I can have a small part in that transformation.

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.