Thursday, December 6, 2012

Another Discharge

I can't keep up with my texts again, so here is a quick medical update. Timmie was admitted to Primary's early Monday morning after a rough couple of weeks of debilitating nausea and vomiting. They have done several tests since then and have confirmed that the gall bladder does have a thickened wall which could be contributing to the nausea. After much deliberation, the game plan has been determined. They will leave her gall bladder in for now; no one was eager for her to have another surgery and face risks such as infection because of her low counts. Rather, they have taken her off of three antibiotics, her pain pills, and three other meds. Getting rid of 7 meds in 4 days isn't bad. She is pretty happy about that. The hope is that because of the decreased meds, her nausea will gradually improve. If the nausea stays the same, they can discuss stopping her voriconazole (the antifungul for the cryptoccus they found in her lung) in January.  They would prefer to keep giving that through March though if they can. If her nausea symptoms get worse, they will revisit the gall bladder issue.  So basically we are headed home tomorrow to wait and and see if she feels any better. We are hopeful that getting rid of so many meds will indeed help. Of course she couldn't let us off that easy...just now she had a reaction to an iv med they gave her to replace her Monday and Tuesday Septra antibiotic. Her head and hands started tingling and her nausea intensified. She is trying to relax  while the docs decide if they should continue giving her the rest of the IV or bag it and have her continue taking the Monday/Tuesday pill. The goal this week has been to keep as many pills out of her gut as we can.  Her counts remain close to transfusion level but the decision to hold off has probably been a good one because her crit was up today from 19.7 to 22.4. We usually transfuse at 20, but she has been lingering around there all week and they really want to try to stress that bone marrow out a bit and avoid transfusions as much as possible.  All in all I feel that good decisions have been made on her behalf this week. Emotionally she is exhausted, and she expresses often that she doesn't know how much more fight she has left in her. But it seems just when the challenge seems impossible or overwhelming, someone else reaches out with an act of kindness, generosity, love, and support. It is amazing how much strength it gives Timmie when she realizes how many people are cheering her on. The high school basketball community has been remarkably supportive. Players and coaches have reached out to her with kind words and thoughtful gifts. Last night she cried as she missed her first region game. But she was so touched by the outpouring of love from the Skyline Grizzlies student body, coaches, players, parents, and staff. Their "Team Timme" night both amazed
her and and humbled her. I often wonder if people really recognize the impact they are having on her and on our entire family. I feel as though all the words I could ever utter are inadequate in expressing our gratitude. It is a strange and indescribable feeling to feel simultaneously overwhelmed with grief and enveloped in the love of those who care. Timmie is beginning to feel better from her reaction. We are watching Joyful Noise for what i swear must be the 100th time. She loves it though, particularly the gospel music performances. It seems to uplift her.

Thursday, November 15, 2012

Gall Bladder Update and Latest Reflections

I am in the middle of writing another blog covering our time in Pocatello after her lung complications. It was an eventful time from Homecoming events to gigantic uteran clots to the start of basketball season to a skin graft... so it will probably be a fairly long blog (sorry Bo).  But for now I have other things weighing on my mind, so that blog will have to be put on hold. Currently, I sit in room 4407 at Primary Children's hospital while Timmie is snuggled in a purple and yellow quilt with her head curled up to the side of the bed railing (Bo hates it when she does that because she looks so uncomfortable). As I look out the large, square window through which light seeps into our room, I realize a lot has changed since our first admission here in June. The mountains are draped with snow, and there is a strange comfort from the sunlight beating down on the aesthetic scene. This episode began at 4 am on Sunday morning; we had been discharged from Primary's for a successful skin graft only 12 hours earlier and were resting soundly in our beds when her cries echoed through the house. She was doubled up in her bed, holding her stomach with both arms. Bo and I were both distraught and prayed that perhaps it was just backed up bowels from her medications, but deep down - knowing her high pain tolerance all too well by now- we realized something was wrong. She was admitted to Portneuf an hour later, and she spent 72 hours vomiting after every attempt to hold down any fluids and requiring pain meds around the clock with little relief . We arrived back at Primary's on Tuesday afternoon. After a traumatizing attempt to get contrast into her nauseous system through a yellow tube placed in her nose, she convinced the doctors she would be better off trying to drink the liter of fluid needed to perform a worthwhile ct scan. I knew there was no way she could hold down a liter of fluid - she had thrown up six times in the previous two hours with nothing in her stomach - but her nurse believed in her will power and thought it was worth a shot. I prayed, knowing how important it was to get good images of her abdomen. A few hours later we were wheeling her bed down to imaging;  I wondered if the her medical team realized the miracle of the contrast and offered a quiet prayer of thanks. Here is what we know now: she has ascending cholangitis...a fancy way of saying infection in her bile duct. Her gall bladder and her liver function are being affected causing extreme abdominal pain, nausea, and vomiting. Most likely this comes as a result of bacteria in her gut coming up into her gall bladder all because of her low white count and the inability of her body to fight this kind of thing. Thankfully, her symptoms and her liver function numbers have improved steadily since Wednesday morning. Why? I'm still not sure. Possibility 1- we had to change her antibiotics when we got here because of a national shortage of meropenem and the new meds were more effective at fighting the bacteria. Coincidental? Fortunate? Blessed? Could it work that fast? I don't know that we've been "lucky" in a long time. Possibility 2- her white cells started to fight on their own. That would be good. Possibility 3- an answer to many hours on our knees pleading with The Lord to alleviate her pain and support her through yet another setback. A humbling thought. Possibility 4- a combination of all of these things. Maybe the most logical explanation; although I don't know how much I am relying on logic these days when nothing seems to make much sense. That was just the background. I still haven't made it to what is weighing on my mind. Here we go. We are relieved that this seems to be a condition that is improving and that there is a chance she won't need to have her gall bladder removed. Timberly is emotionally spent. I see a look of exhaustion, fear, and discouragement in her yellow, jaundiced eyes.  When she is awake, tears stream down her face and she whispers in broken an muffled syllables that she needs to be done and she doesn't want to do this anymore. She misses her friends and her teammates. She wants to go to school and sit on the bench at games supporting the girls she loves. Despite all of this, my overwhelming emotion today is gratitude. How could we have survived thus far without our many blessings. Modern medicine, dedicated health professionals, health insurance, employment... not just as a means of supporting our family but as a place where people love and support Bo and I and continuously handle the things that we are unable to attend to without ever a word or murmur or complaint, the warmth of shelter in our homes and in the hospital, the convenience of vehicles to transport us to the places we need to be often times immediately and emergently, friends and family and strangers willing to support us with acts of love and kindness, financial support from many giving and selfless people, words of encouragement continuously sent our way despite the longevity of the circumstance, prayers offered on our behalf, the Savior Jesus Christ and his willingness to atone for all of us and provide us with the blessing of eternal life... the list goes on and on. As I cuddled with Timmie in her hospital bed last night per her request, I rubbed her hair gently and massaged her aching back. She spoke for the first time about death and expressed her gratitude for her knowledge of eternal families and her faith in an after-life where we can be free from pain and sorrows of this life. It was a tender and peaceful conversation, not one I could ever predict having or could ever script out in my mind. She explained her belief that this illness would not take her life, but that if it did, how much she would miss us until she could see us again. I calmly told her that I did not believe this illness would take her life either, but if she were called home before the rest of us that she would have a different perspective of time, and that from an eternal perspective this life would seem but a moment.  I told her it would be more difficult to those she left behind, who are blinded by mortality and sometimes feel that the trials of this life are never-ending. Again, I could never have imagined having this candid discussion with one of my children about death and the possibility of being temporarily separated by its hands, but it was a conversation void of panic or fear. It was a conversation of faith, wherein we both knew with a surety that our Redeemer lives and has satisfied the demands of justice and broken the bands of death. My thoughts quickly returned to all of the factors that have contributed to us surviving this life-altering challenge. Having been pushed to what seems to be our limits (I'm realizing more and more that we don't really know what our limits are) my mind turned to those who are less fortunate, those who many not have the many blessings and conveniences that seem to sustain us during this time. The thought of losing just one of those blessings, for example the blessing of a supportive and involved extended family, or the blessing of sacrificing colleagues, or the blessing of loving neighbors and friends, makes this challenge seem impossible and overwhelming. Many people walk among us with heavy hearts and defeated spirits; they have faced disappointment and tragedy that we could never imagine; they may not be quite as fortunate as I may be to be surrounded by an amazing support system and selfless community; they may feel that they walk their roads alone. We need to be less critical, less judgmental of our fellow human beings. Not everyone has been born with the same opportunities and circumstances. Having been pushed so far, so close to my limits, I realize how traumatic experiences and tragedy can break a person's spirit, could cause them to travel down even darker roads of isolation and despair. When I get past the point of spending all of my resources and energy on my daughter's physical, emotional, and psychological health, I want to be better. I want to reach out to those who so desperately need a helping hand, an act of generosity, a second chance. We are pretty hard on each other as humans when we never really understand what a person has been through. I want to be more patient and loving. I want to and need to be better.

Tuesday, October 16, 2012

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.

Sunday, October 14, 2012

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. 



Tuesday, October 9, 2012

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!

Friday, October 5, 2012

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. 

Thursday, October 4, 2012

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.

Sunday, September 23, 2012

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.

Saturday, September 22, 2012

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.

Sunday, August 19, 2012

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.

Wednesday, August 8, 2012

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.

Sunday, July 29, 2012

Families Can Be Together Forever

I'm feeling pretty guilty that I haven't blogged all week, especially during such an important week; however, I have been so overwhelmed and exhausted that it just hasn't happened.  I know that so many of you are praying for Timmie, so I feel awful not keeping you updated on her progress.  So, on Monday she was discharged from the hospital around 5 pm after receiving blood and platelets, and it was a very complicated discharge process.  It appears that Timmie likes to challenge people, so we spent the day trying to orchestrate her medications (which was the most difficult), her physical therapy, her home health nursing, and her medical equipment (wheel chair, walker and such).  The night before discharge was a particularly painful one for Timmie, and she spent the evening trying not to request IV painkillers for fear that it would prevent her from being able to come home.  She is one tough cookie when she wants to be.  We didn't get much sleep, but when she woke up and the doctors told her that one rough night hadn't changed their game plan, she had a smile on her face. Most of her pain is still associated with her serum sickness rather than her healing leg, which is a good sign I think.  At least we know once the serum sickness passes, her leg will be on a rapid road to recovery. The Sunday before check-out was an important one.  Timmie had been missing Sunday dinner with the fam, so the nurses arranged for us to reserve the board room and for Timmie to be allowed to leave her room to have family dinner.  My family came up to Salt Lake, even though there was a good chance she was going to be able to come home the very next day. It meant so much to her to be with all of us. She was happy and laughed at the little ones, just like a normal Sunday dinner. Once again I had an opportunity to reflect on those things that really matter most. Sunday dinner has simply seemed like the routine, and it definitely didn't seem as though it ranked as one of the most important things in Timmie's life.  In fact, over the past year or so, family dinners have changed a bit for her. You know...entering into those teenage years, Timmie spent more and more time texting her friends or taking that long overdue nap on Sunday afternoons than socializing with everyone. Yet during those lonely nights in a hospital room, she would cry and tell me how much she missed Sunday dinners. One of the many important lessons I have learned during all of this is not to take the simple moments for granted. Coincidentally enough, the first night we spent at home in our beds, my grandfather, Deloi Tubbs, better known as Gramps, passed away peacefully in his sleep. Gramps was definitely one to appreciate the simple and tender moments.  He taught us all the value of family and was an immovable example of putting family first. He spent his life working hard and providing for his wife and six daughters. He was a faithful patriach, and although he was humble and had a tendency to underestimate himself and his abilities, he paved, along with my grandmother Lois, a pretty clear path for us all to follow in raising our families with selflessness, dignity, and love. His last years were clouded with confusion due to his Alzheimers, and it must have been scary for him at times, or maybe always, but he still loved and led his family and prayed for us all to remain close and dedicated to those things that are most important. I was fifteen when his wife, Lois, passed away.  Timberly's middle name is Lois, so it goes without saying what an impact she had on me and my life. I loved her smile, her rosy red cheeks, her tendency to overrule my mother and give us cinnamon toast whenever we wanted it, and her love for the scriptures. One of my most vivid memories of her consists of her sitting on her sofa in her tiny living room with her scriptures opened on a TV tray. I remember her quoting scriptures any time she offered advice or words of wisdom to anyone, and most often I remember those words being directed at my Aunt Julie - not that she was the one who needed them the most... she was simply the youngest, and all teenagers need quite a bit of counsel. In my mind, the relationship between my Lois and Deloi was the most pure and loving of any couple to ever walk the earth. I'm still not sure how much of this was based in reality, and how much was idealized and romanticized in my young adolescent mind. At any rate, when Grandma Lois passed, my heart ached for Gramps.  Oh how I thought they should be together. I prayed that their separation wouldn't be for long. (I never told my mother or her sisters this prayer because I knew how much they loved him and wanted him here with them). But nonetheless, deep in my heart, I thought if any two people belonged together, it was my dear grandparents. Nearly twenty-three years later, he was able to see his sweet wife again. I have a very vivid picture of what that reunion must have been like, and my heart swells with joy when I picture them together, hand-in-hand. I know Grandma and Grandpa Tubbs affected so many lives, but I hope they know that they affected mine. Timberly never knew Grandma Lois, but felt her near during two of her darkest moments in the hospital. I guess our inspired grandparents knew what they were doing when, at each of our family events, they had us all gather round and sing "Families Can Be Together Forever." Indeed they can. Even now, when we aren't able to see their faces or touch their hands, they are near.  I'm sure that we are more "together" than most of us can even realize. I am so grateful that we were home for the funeral.  I am grateful that Timmie was able to attend; and although having her around so many people made both her father and me very scared, she would not have had it any other way.  When I suggested that it might be best for her not to attend the funeral, which was just yesterday, she looked at me and said, "But mom... It's Gramps."  That is really all she had to say. We will probably continue to struggle finding a balance between keeping her healthy and safe, and allowing her a bit of normalcy to aide in her mental, emotional and spiritual progress. I will never forget her struggling up two little stairs at the funeral on her crutches to join her cousins in singing at Gramps' funeral. She sat on a chair, removed her mask, and sang with the others "I am a Child of God" and, of course, "Families Can Be Together Forever." I will treasure that memory in my heart. She wanted to go to church so badly today. It meant the world to her when her two dear friends, Skyler and Tanner, showed up at the front door prepared to offer us the sacrament. The sacrament has always been an important ordinance to us, but the promise that we may always have His spirit to be with us carries new and profound significance in our lives when we so desperately rely on on His peace and comfort. The world can offer peace in many ways, but there is no peace that compares to the Peace of Christ. I have felt this so often this past month, and I testify that He lives and loves each of us. I need to thank so many people for the service they have rendered in our behalf. Many of you have helped make the transition home much easier. You know who you are.  Many of you spend so much time keeping Timmie's spirits up. You know who you are. We value the love of our dear friends and family. Timmie is doing well. She has had good days and bad days since we have been home. If the trend continues of her having good days when Ockey is around... we may have a bit of a problem.  I'm going with the fact that this must just be a coincidence. :)

Friday, July 20, 2012

Movin on Up...to room 4404.

In our roller coaster world that we have been living in, it is difficult to miss a few days blogging because so much has happened. I don't really know where to start. Good news I suppose...and there is so much of it. On Wednesday her CRP hit .8. We weren't sure that would ever happen. She is doing physical therapy twice a day and progressing little by little. She uses a walker to get around the room. Although she can't put much pressure on her foot, she continues to try. It is the most difficult for her to flex her foot. The muscle that controls that movement has been through the ringer. She has fallen in love with an alternative medicine doctor who is not only coming up with visualization strategies to help her move her ankle, but also teaching her some pain coping techniques. Her cyclosporine level is back down to 120 and we want it to be 200-250. Her chest pain is getting much better and after several EKGs, they are attributing it to esophigeal spasms most likely triggered by acid reflux from all of her meds. She was able to talk to a doctor about some of her traumatic experiences, and I think it was great for her to be able to articulate her feelings to someone besides her parents. He quickly discovered what most of us already know, that Timmie is always more concerned with others than herself. He assured her that she doesn't have to handle this trial perfectly, that she is allowed to have bad days and break downs, and that it is okay and probably necessary to focus on herself during this experience and put changing the world on hold. She was able to articulate her fears, her fears of not getting back to school, not being able to reach her academic goals, not being able to play basketball, not being able to walk, letting people down. As positive as we all try to stay during all of this, the reality is that it is extremely difficult, at times overwhelming, and constantly very frightening. Wednesday and Thursday went so well that they were thinking they could discharge her home to Pocatello on Monday. She has been ecstatic. She still has no neutrophils and would rely on Home Health for IV antibiotics, physical therapy, and medical equipment, but everyone agrees it would be beneficial for her mentally and emotionally to spend some time at home healing while we continue to pray for immuno-suppressant therapy to work and her bone marrow to start functioning once again. Just as she got her sights set on coming home...a curve ball. It was late Thursday night after her best day in the hospital by far. Physical therapy was great and her need for pain meds was minimal. She laughed, visited, worked hard, and even replied after dinner that she had "felt normal." After some friends left, she crawled into bed and I saw a large patch of red skin on the calf and knee of her good leg. I rubbed my hand across it and could feel an immense heat. My heart sank as I had the nurse page the resident. After examining the area, the resident suggested that we draw a circle on her leg to make sure it wasn't spreading. The thought of trying to fight another life threatening infection was more than I could bear. The mask of strength that I have been able to put on during previous traumatic situations disappeared. The nurse asked if I wanted to draw the line around the area. I flashed back to all of the hours spent watching the infection spread on the other leg, all of the times we had to enlarge the drawn circles, all of the pain from the heavy weight on my chest sitting through eight surgeries, all of the prayers offered that her leg and life would be spared. "No. No circles," I replied, and I burst into tears. I knew I should stop because I didn't want Timmie to feel more terrified than I already knew she was. A few tears trickled down her cheek, and she said, "It's okay, Mama. It will be okay." I wiped away my tears, grabbed the marker from the nurse, and drew yet another circle, this time on her healthy leg. We prayed but not for long because her knees and groin and lower back began to hurt. For three hours she struggled for relief. No meds seemed to be working. I held her hand and tried to reassure her, but ran out of words of hope. Finally, at 2 am, a med was given through the IV that subdued her pain. As she clutched the pillow lying across her chest, she slowly closed her eyes and fell asleep. I offered a prayer of thanks and begged the Lord that she didn't have infection in her other leg. This morning the redness and warmth were gone. The doctors think that it was not infection at all this time, rather a rash and joint pain from Serum sickness - a reaction to the ATG immuno-suppression drugs she received early last week. Apparenly, patients are at highest risk of acquiring these symptoms 10-14 days after the treatment. A difficult thing to deal with for a bit, but not nearly as devastating as infection spreading to her other leg. So you see, a lot happens in a few days around here. We are still praying for her to be able to come home next week sometime. Thank you all for your kindness, support, letters, and generosity. We continue to be uplifted by your support. Oh...I forgot some good news. We were able to move to a bigger room which is nice, especially for Timmie's physical therapy. It is brighter, has a couch that folds into a bed that is so much more comfortable for me to sleep on, and has a giant bathroom! Not that we need a big bathroom, but still, something for us to be happy about. The best thing about us moving on up (I keep singing the song from the Jeffersons, but Timmie doesn't get it and it just gives her one more opportunity to tell me I'm not funny) is that our little friend, Millie, who has been "kicking leukemia's but since 2009" moved on out. She had a bone marrow transplant and grafted so was able to go home. She is an inspiration, and we feel the good vibes from her room. Timmie was also able to go for a late night wheel chair ride (with a mask on of course.) We went outside at about 11 pm when very few people and their germs were out. When we got outside, she took in deep breaths, reached out to touch a plant, and of course shed some tears. We sat for a while by a pond with a few flowing fountains. I could write a whole post about our experience and our talk, but I won't. I will say that sometimes we take the simple beauties of the world for granted. I will stop now before I start quoting Thoreau.

Tuesday, July 17, 2012

A Good Weekend

It has been a few days since I have had a chance to give an update on Timmie. This weekend we were just really busy because she was doing so well and had so many visitors. She has been getting out of bed for physical therapy and to use the restroom, and on Sunday night she even took a shower! I would attach some post-shower pictures if I could figure out how to do it on this I-pad. The weekend was great. Cassie spent the night with Tim, so Bo, Julian, and I were able to spend some long overdue time together. We went to the City Creek Mall, and it is amazing what fresh air can do for a person. I enjoyed it so much, but I hurt a little inside because I know how much Timmie needs to get out of room 4401 to get some fresh air. She cried when the water hit her from the shower, and I am sure she will do the same when she first steps foot outside. They had been talking a lot about discharging her, at least locally, by the end of the week because her leg and infection levels have been so good. (Maradia- I heard you have been following her CRPs closely, so I won't leave them out!) They have been bouncing around between 1.7 and 2.7, which they are telling me is as good as it will probably get for her until she gets some white blood cells...neutrophils to be exact. A normal CRP is under .8. So, local discharge was an option, but we had a little setback yesterday. Timmie's pain level shot up, not just in her leg but all over her body. She was having pain in her back, neck, knee, ankle, chest, and she was having trouble breathing. She described her pain as a 5, which for her is really high; since her nerve pain that she ranked a 10, the highest she will rank anything is a 5. I guess it is all relative. No one could really figure out what was going on with her. Some think it may be that we are tapering her pain meds, but then we got her cyclosporine levels back. Cyclosporine is the med she continues to take for her immuno-suppression. The target level of cyclosporine in her body should be between 100-200. They test the level every other day, and she has been too low, so they have been slowly increasing the dose...too much cyclosporine can be toxic, and cause all sorts of side effects. Her level yesterday jumped from 90 to 780. They are retesting as we speak this morning because some are doubting the accuracy of a huge jump like that. However, if it was accurate, it could indeed explain why she felt so awful. Her kidney doc indicated that if that were accurate he would be surprised that she wasn't having seizures. I guess we will see what happens with that number in a few hours. Sorry Maradia...another number for you to follow. I pray Timmie has a better day today. The setback was pretty discouraging for her after progressing so much the past few days. Julian headed back to Pocatello with Cassie on Sunday. We had so much fun at the mall and at the Cheesecake Factory...how could anyone not have fun when cheesecake is involved? He was sweet at the restaurant, and once I complimented him on his good manners he created situations for himself to say please and thank-you and earn my approval. It breaks my heart that I haven't been there for him the past few weeks, but I am so blessed with family members who love him and make sure he is taken care of. Because of Cassie's willingness to sleep at the hospital, I was able to share a bed with Julian at the hotel. I thought of bedtime at home; the routine involves a nightly negotiation process between Julian and I to determine how many minutes I will lie by him in his bed before he falls asleep. He is a fairly savvy negotiator, so I usually end up lying with him for five or ten minutes despite the fact that I am sure I have read in many parent manuals that by six years of age it is important for kids to feel comfortable falling asleep in their own beds by themselves. As I laid in bed with him on Saturday, all of that parenting mumbo jumbo seemed pretty ridiculous as I cuddled with him and he gently placed his hand on my cheek and simply whispered, "Mama." Ritual bedtime negotiations at my house will never be the same.