Darkness

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

How's Timmie Doing?

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

Lung Setback

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

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

Why I Write

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

Alone in a Gym with a Ball

So every night I am too tired to update the blog, and I tell myself, "Ok...tomorrow I will do it." But then I just get tired all over again. I decided a quick medical update was better than nothing tonight. She still doesn't have any neutrophils (white blood cells) but no one was expecting to see any for 4-8 weeks from her original ATG treatment three weeks ago. So basically, if she is part of the 60% that responds to immunosuppressive therapy, we should start seeing some white blood cells in 1 to 5 weeks.  Dr. Yost asked her yesterday when she would give us some white blood cells and she confidently replied, "In about a week." If for some reason she doesn't respond (but she will), we will be looking at a bone marrow transplant, most likely in Washington D.C. because of the complexity of the procedure. They would take the 4 out of 6 cord blood match that they found and combine it with a parent half match. We haven't really wrapped our minds around that yet because we are pulling for those white cells to kick in any time now.  She was hospitalized again here in Pocatello last Wednesday through Saturday. She was doing so well in clinic last Tuesday that they weaned her morning dose of steroids. Apparently, her serum sickness was having nothing to do with that. By 6pm Wednesday night she was in excrutiating pain and begging us to take her to the hospital. I had forgotten that I was the only one who has seen her in the heat of her extreme serum sickness attacks. Bo and my parents were devastated, but I knew if we could get her to the hospital we could get her some relief. There is really no way to describe the knots in the pit of my stomach when I see her like that, but the first time I almost threw up. Now I have become a bit more resilient. I tighten up my stomach the way I would if someone were about to punch me in the gut. Then, I focus on getting her the help she needs. Once we got to the hospital, they were able to relieve her pain through IV meds. I drew a huge sigh of relief as I watched her fists unclench, and I heard her loud cries subdue to quiet moans. Moments later though, the nurse took her temperature and she had a fever of 101.9. Bo and I knew the implications immediately: admission for 48 hours, increased IV antibiotics, and prayers that the blood cultures would come back negative. The thought of another infection is almost too much to bear when we recall that the last one not only threatened her leg but her life.  Her fever was down by Thursday morning and the consensus was that the fever was triggered by the flare of serum sickness. There were several other issues...high blood pressure, high cyclosporine level, swollen leg...but my short medical update is getting well, not so short. The doctors handled all the issues and we have been home since Saturday. I know that people who read the blog love Timmie and keep her in their thoughts and prayers, so it is important to add that this week has been a good one. We have been blessed. Today was the best day she has had. She studied and read for the first time since she was hospitalized. The meds have kept her from being able to focus. She was finally able to start her summer AP reading of Huckleberry Finn that some mean old English teacher assigned to torment her future students. Timmie wants so badly to return to school, and she remembers not too long ago when should would begin to dread summer coming to end and having to go back to school.  Now when she hears her friends make the typical complaints about going back, she realizes how much she has taken for granted.  She would give anything to be there with her classmates on the first day.  I watched her today at the student government meeting as we planned the first day assembly.  I knew how much she was hurting and was so impressed with the smile she put on her face as they talked about ideas for skits and entertainment. In addition to reading, visitors, and a student government meeting, she had a great day of physical therapy and made progress with moving her foot and ankle (every day getting just a little closer to walking which she wants to do so badly). Finally, she asked if I would take her to Highland to dribble. This was one of those things that I could tell she needed, so we made it work. I sanitized her ball. I wheeled her into a dark and quiet gym, one that has typically been her second home during the summer, her sanctuary. She wore her mask, and I was worried about the ball hitting the floor and then her hands, so I made her wear the purple medical gloves we brought home from the hospital. Sitting on the edge of her wheel chair with a blue mask covering her face and purple gloves shielding her hands, she began her dribbling drills. The ball hit the floor rhythmically, first the right hand, then the left, then a methodical cross over in front of her wounded leg. It was as if she was involved in a sacred ritual, and for the first time since this all started, since we were forced to become an inseparable pair, I got the unequivocal feeling that I was simply in the way.  I quietly walked to the other corner of the gym and sat softly down on the steps to avoid interrupting what was clearly a private moment. I waited for her to burst into tears as I sat, head bowed, holding back tears of my own. But it didn't happen. She dribbled and dribbled.  She pressed the ball to floor in loud, hard, high, dribbles over her head.  She hit quick low dribbles as she found her focal point on the wall. She looked up at me and smiled and repeated the process.  After about fifteen minutes she yelled over to me, "You ready to go?"  I asked her if she was tired and she told me that she was, but she was as content as I had seen her in months. I really don't know if she will ever have the chance to play another game in that gym, but I can tell you that from watching her tonight, alone in a gym with a ball,  that what I do or don't know is definitely not going to be the determining factor.

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. :)

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.