Going home!

Ok...decided I needed a quick update before we head home tomorrow because speaking from experience I get really busy and overwhelmed when we get home and I have a hard time keeping people informed. So...the good news. We are going home tomorrow at 10 am. (Ok...well that's the plan. I keep adding the time because it somehow makes me feel more like it will really happen.). Discharge is always a hectic time and I always fear I am going to screw something up or forget something that is extremely critical. Today was by far her best day for nausea and feeling decent. She showered by herself, got dressed, took a walk all the way down to x-ray on the first floor, made Kenton a good-bye card, and appeased the dietician by eating three meals (kinda). She was definitely on a mission to prove it was time to get out of here. Yesterday wasn't so smooth. She had her first reaction to platelets. Platelets are such a common occurrence for her that I hadn't even noticed they were going in. Here is what I noticed: she was sitting up in her bed finishing off  a sandwich and one of her favorite orange cream slushies from the U. Suddenly she yelled, "Mom, my bucket! I am going to throw up!" I hurried as fast as I could. She leaned over the all too familiar plastic pink pale. "I don't feel right," she explained. Then she fell back on to her pillows with her eyes closed. I yelled and shook her, but she wouldn't respond. The nurse said she would stop the platelets, which was when I realized she had been getting them. We both called for a rapid response simultaneously. When the first doctor arrived moments later and saw that she was unresponsive, she punched her in the chest. Ok...so later I learned that it s called a sternum rub, but at the time, I didn't know what was going on. Timmie opened her eyes and shut them once again. Her blood pressures which are normally 125/70 fell to 80/48 and I was freaking out! After they gave her Benadryl, hydrocortisone, and fluids, she slowly started to come to, but she was foggy and complaining of a headache for quite a while. It took her an hour to recover completely and the rapid response team watched her closely trying to decide if she needed to the ICU. Needless to say, she will have to be pretreated for blood transfusions from here on out. I told her if we ever had to have another rapid response again that she was grounded! That didn't seem to worry her too much. She always pulls that stuff when I am here by myself too. I have to get to bed because somebody has big plans to go to the Homecoming dance. Not quite sure how she is going to the pull that off...but she is a fighter, and I have learned that it is good for her to set her mind on something...more often than not she achieves it, and it gives her that little spark of hope she needs to keep battling.  Don't be surprised if I fall behind on the blog updates...this full-time nursing job keeps me hopping.  But once again, thank you so much for your prayers. There were moments of comfort this admission that I knew were coming from a higher power.  I can't wait to get home to Bo and Julian and hope that Timmie can have a little time off from the scary stuff. She will have to be readmitted for about 5 days for a skin graft, but we need to give her a mental and emotional break for a couple of weeks first.

Lil' J

Slowly but surely Timmie's numbers continue to improve. Today her CRP was 2.5 (Julian's guess was 3.0, so we were all pretty happy with 2.5) and she went 24 hours without a fever. The nausea was still pretty bad this morning, but by this afternoon she was able to shower and eat a small steak and half of a baked potato. All of the doctors and nurses keep talking about that Homecoming Dance this weekend and are doing everything in their power to make it happen. I am so proud of how hard she is fighting despite her all consuming nausea and persistent weakness. A couple of days ago she said that she wished she could fight just one battle...just the aplastic anemia, just the leg, just the lung. She expressed her feelings of discouragement, and through her tears she finally announced, "I am broken."  I knew she meant emotionally, not just physically. She had hit her wall and felt that she just couldn't go on anymore. Then some sweet and thoughtful friends facetimed the Poky vs. Highland football game for her. The crowd chanted "We love Timmie" and the team even sent her a shout out after their big win. She sobbed, as she had been sobbing the last four days, but I saw the strength it gave her. If ever she has needed a cheering section it is now.  Everyone is trying so hard around here to help her feel better. They aren't used to seeing her so sad. We tried yet another nausea cocktail today and finally stopped her continuous pain pump of dilaudid. Fingers crossed once again, we prayed for a bit of relief for her. Cassie and Tony brought Julian down last night which for Timmie was a much needed visit. She has shed many tears the past couple weeks because she misses her little brother. They all kept Julian company while Bo took me out to dinner for my birthday. I was a little hesitant to go out because our last excursion was not quite what Bo had hoped it would be. A couple of weeks ago he took me to the Cheesecake Factory, which I love, but I just couldn't enjoy the moment. Half way through dinner, tears rolled down my cheeks as I tried to explain to him how I felt. It was as if I was in a dream, and I looked around at people eating, drinking, talking, laughing and I couldn't wrap my mind around it. I couldn't remember what it felt like to have a carefree evening and a leisurely conversation. I couldn't remember what it felt like to not to have a heavy, painful pressure in my chest. I wondered how any of us do it...find pleasure in a world filled with heartache and despair. I wondered who had looked at me that way in the past. I thought about a line from Elie Wiesel's speech  entitled "The Perils of Indifference" in which despite the fact that his argument revolves around the need for humans to avoid indifference at all costs, he admits that indifference can be seductive. He even questions whether or not it is necessary to a certain extent as he explores the complexities of the phenomenon:

What is indifference? Etymologically, the word means "no difference." A strange and unnatural state in which the lines blur between light and darkness, dusk and dawn, crime and punishment, cruelty and compassion, good and evil. What are its courses and inescapable consequences? Is it a philosophy? Is there a philosophy of indifference conceivable? Can one possibly view indifference as a virtue? Is it necessary at times to practice it simply to keep one's sanity, live normally, enjoy a fine meal and a glass of wine, as the world around us experiences harrowing upheavals?

Of course, indifference can be tempting -- more than that, seductive. It is so much easier to look away from victims. It is so much easier to avoid such rude interruptions to our work, our dreams, our hopes. It is, after all, awkward, troublesome, to be involved in another person's pain and despair. Yet, for the person who is indifferent, his or her neighbor are of no consequence. And, therefore, their lives are meaningless. Their hidden or even visible anguish is of no interest. Indifference reduces the Other to an abstraction.

Obviously I wasn't the best company for Bo as I was pondering such deep philosophical questions. I should make it clear that I do not feel at all as though people have treated us with indifference. It has been quite the opposite. I have been amazed at the constant show of love by both friends and complete strangers towards us over the past four months. Rather, this was personal reflection. In my comfortable and blessed life, were there burdens I could have helped to ease if I hadn't been so absorbed in my own seemingly trivial worries and concerns. And what about Weisel's rhetorical question exploring the necessity of indifference in order to maintain sanity and normalcy? It is a question I have repeatedly posed to my AP students. It is a question to which I don't have an answer. But in that moment at the Cheesecake Factory, I wondered if I would ever be able to feel that way again....be able to enjoy a nice dinner and an evening with friends or loved ones without the heavy worries on my mind and in my heart. I expressed these feelings to Bo across a tiny table in a crowded restaurant. He listened tenderly and lovingly. He didn't have any answers but he understood how I felt, which brought me more comfort than he could have realized. The look in his eyes at that moment is etched in my heart. I could see how much he wanted to fix it and how much he cared. I am pleased to announce that I was a much better date last night at my birthday dinner. The nursing staff was shocked to see me leaving the hospital in clothing other than my typical sweats and flip flops. I don't know why, but we were able to have a nice, quiet dinner, and I was much better company. We still talked about our deeply embedded concern for both Timmie and Julian, but we were able to enjoy our friendship as we laughed with one another and enjoyed eachother's company. Julian joined us for a night in the hotel and I can't express how much it meant to cuddle with him and talk about school, soccer, friends, books. He talked and talked for over an hour, and I loved every minute of it. Today when it was time for him to head home with Cassie the routine began. He started pouting and talking back and finding any outlet in the world for his anger: the video game, the inadequate treats, taking the stairs rather than the elevator. It is the typical display for him when it is time to say goodbye. Cassie finally headed downstairs to get the car situated and left me in the stairwell with Julian. I encouraged him to hurry and not to inconvenience his Aunt Cassie. In a final act of defiance, he sat down in the middle of the stairway and refused to move. I was out of negotiation tactics and personal imagery strategies to remove myself from the heartwrenching display. With no other option seemingly apparent, I sat down next to him on the stairs and started to cry. Luckily no one was choosing to take the stairs. He stopped the pouting and the power struggle and looked up at me with eyes filled to the brim with tears. I don't know how he manages to keep those huge tears welling up in his eyes from streaming down his face, but he seems to have a real talent for it. I told him that it was ok. That I was sad too. That I missed him so much and hated saying goodbye. That I wanted Timmie to get better and for our family to be back together. I told him that Timmie was getting better and that we would both be home soon. I told him I was proud of how strong and brave he has been. I hugged him and I cried. He was shocked at my reaction and buried his head in my chest an hugged me with all his might. We slowly made our way outside and he tossed some pennies in the little pond out front and made his wishes. Just before getting in the car he made one last attempt in his struggle for power. He closed the door, leaned his back on the door, and insisted he wasn't going. At this point Cassie was blocking traffic. I quickly, without thinking, said, "Jules, hurry and get in the car." He fired back, "I want to make another wish!" He had been stalling for nearly 30 minutes by this time. I replied, "No, you have already made lots of wishes. You have to listen to your mom if you want your wishes to come true." Without a moments hesitation he looked me in the eyes with the most disappointed face I have ever seen from him: "They never come true." I burst into tears, handed him a penny and watched him race across the street to make another wish. He ran back, got in the car and shut the door. Cassie, crying as well, drove away quickly to avoid blocking traffic and avoid prolonging the inevitable. Here's to hoping Julian's wishes can start coming true. He has big welcome home plans for his sister that include a funfetti cake. I am so proud of him and his big sister and how strong they have been during these difficult circumstances. My love for them and for Bo has grown in a way that I didn't know was possible. They are my world. 

Experience and Perspective

It is nearly noon and I am still in my pajamas. Timmie has been nauseated all morning. We had to give her some pretty strong nausea medicine so she could hold down her cyclosporine. It is so important that she gets that in her system so her body can continue to make neutrophils. Her ANC today is 3600! I just wish we knew why she is still having fevers and severe nausea. They replaced her chest tube last night. It was clogged and not draining properly. There seems to be some controversy as to how much fluid actually remains in the lung. There also seems to be a lingering ambiguity regarding the source of her fevers and acute sickness. They did do a spinal tap last night as well because cryptococcus is known to cause spinal meningitis. It came back normal, other than a slightly low glucose level. That was a relief. Timmie has a reputation around here for remaining surprisingly stoic regardless of the severity of the circumstance. Last night, however, after waiting patiently for her procedures all day until they could squeeze her into interventional radiology, just before they administered the IV sedation medication, she burst into tears. She let out four or five heavy sobs, shivered twice, gasped for breath, and then permitted streams of tears to flow down her face. One of her friends from Interventional Radiology (Specials they call it) wiped her face with tissues and assured her that everything would be alright. They injected the medicine into her IV, and her eyes slowly closed. An hour later we were standing by her side as we have countless times as she opened her eyes from sedation. Usually she smiles once she sees us and closes her eyes once again as we rub her head gently. ( I have recently been told that that this is yet another thing for which her father seems to be more qualified). This time she reached out for my hand. Once I grasped it, she looked into my eyes and sweetly inquired, "Mom, am I ok?"  I don't know why this hit me so hard. The little girl underneath all of that maturity and stoicism came bursting out. How difficult all of this must be for her not just physically but emotionally.  At the end of the day, she just wants to be ok. I told her that everything went well and that she was just fine, as I (apparently inadequately) rubbed her forehead. I was thinking, 'Oh sweety, you are so much more than ok. You are so amazing and impressive, and I am so privileged to be your mother.' Just recently, as a mother who has watched her daughter suffer for four long months, I have been blessed with a change of heart. I don't know if I should call it a change, because I have always felt faithful and comforted, so maybe it would be better termed a growth and development of heart...not as catchy I know, but more accurate.  Let me explain. Over the past three weeks especially, during this whole lung obstacle, I have begged and pleaded with the Lord to let this trial come to an end. I have told Him that this is enough....she can't handle anymore. I have negotiated with him and explained that it seems like a righteous desire to want my family to be together, to want to be near to my sweet Julian so that I can nurture and guide him and relieve some of his confusion and fear. A few nights ago, after waking up to help Timmie go to the bathroom, I crawled back into bed and looked at the clock. It was 4am and I looked around the room as if I hadn't ever really noticed before where we were and what we were doing. I looked at Timmie sleeping peacefully, and then looked at all of the equipment that was lit up in the dark room. I heard the soft sounds of various devices against the silence of the night. The bubbling chest tube machine, the inflation and deflation of the bed mattress, the gentle breeze of air from the oxygen mask, the slow drip of the IV. Were we really here? Was this really happening?  Suddenly, I was wide awake and I knew there was no chance of falling back asleep. I began to pray. But this time it was different. I prayed, and poured out my soul, just as I have done so many times before. However this time- maybe because of the thick silence illuminated by the soft background noises or maybe because of my strange mid-night alertness- I listened. There were long pauses between my expressions of fear and helplessness. More so than ever before, I communicated with God. I could feel His words permeate my heart, then I would reply to His promptings. The details of this intimate conversation are probably best left as a personal experience, but I will share with you the results of the conversation. First, I realized that it takes much more faith to entirely submit to the will of the Lord and His timing rather than to simply believe He has the power to heal her completely and immediately. I realized I needed to start praying more to endure each day and live it as best we can and to focus less on how long this trial will continue to challenge us. What little things can I do to make the world a better place while I am confined to the fourth floor of the hospital? How can I better lift Timberly's spirits? How can I find ways to serve others? Secondly, I realized that despite what seems to be a fairly tangible spell of bad luck (there isn't a doctor or nurse here who hasn't questioned why so many things have had to go wrong with this little girl), we are definitely blessed beyond measure. Sometimes it is difficult to see our blessings when we are clouded with adversity. Because of this experience with my Heavenly Father, I started to see things a little differently. Rather than being overcome with sorrow because I am not there to mother little Julian, I recognized the amazing blessing of my family who love him just as much as I do and are willing to do anything and everything for him. I realized the blessing of friends and neighbors who have gone out of their way to  help him however they can. As I started to look around, I realized I had been focusing more on the difficult nature of this challenge than on the blessings bestowed upon us to help us endure the hardship. One of the most obvious examples of the Lord preparing us for and helping us through this trial is the relationship we have built with the Wheatley family.  We continue to receive pictures and texts from them while they enjoy their time at Disneyworld. Make a Wish has an amazing program called Give Kids the World where families like Hatcher's retreat to spend happy, hopeful times together and build lasting memories. The founder of the program is a wonderful man who is a Holocaust survivor. He explains looking into the eyes of young children battling illness and disease and relating to their suffering because he spent his childhood in turmoil and fear in an internment camp. At the Give Kids the World Village, they eat ice cream for breakfast and celebrate all of the holidays in one week.  From getting on the plane to eating ice cream for breakfast; from wearing Christmas pajamas and waiting for Santa to wearing Halloween costumes and going trick-or-treating; from bathing in a huge jet tub to feeding the dolphins and seeing Shamu, they have sent Timmie inspiring messages and pictures of the whole trip. She feels like she is there with them! She has been very weak and ill the past few weeks, but despite how awful she is feeling, she lights up with each text an photo. What a blessing they are in our lives. Just got word that little Hatch didn't feel very well last night....having some lung issues. Dang those lungs! Please pray with us that he can find the energy to enjoy the rest of his trip. As I finish up my blog I hear cheering and bells ringing in the hallway. Someone has just finished their last round of chemo. Timmie and Hatcher, in my mind that cheering is for you! I can hear the cheers of hundreds, probably thousands, back in our little Southeastern Idaho communities cheering you on as you fight. You are both such impressive fighters.   I look forward to the next opportunity you have to embrace. I will be cheering so loud!

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.