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.

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.

Timmie's Strength

CRPs were 2.7 yesterday and 1.9 today! Translation...something is working to get the infection out of her body. And by something I mean a persistent and determined surgeon, eight surgeries, some super strong antibiotics, a fantastic team of nurses and doctors, impressive faith and attitude of a 16 year old girl facing the biggest trial of her life, countless prayers offered on her behalf, and tender mercies bestowed upon us by the Lord. She also got out of bed once yesterday and twice today. She is such a fighter. Despite the pain she has to endure, she presses forward and gets a little stronger each day. Right now walking seems nearly impossible let alone running and participating in the sports she loves. Every once in a while she will ask a question like, "Is this clot going to ruin my shooting arm?" or before her first surgery she asked if she could lose her leg, but for the most part she doesn't talk about the fact she was supposed to be at a basketball tournament in Portland last weekend and in Louisville this week. She did burst into tears when the University of Utah Women's basketball team showed up in her room to pay her a visit. I know it is killing her not to do any of the things she loves, but she hasn't complained...not once. Now that I take the time to think about it, it is rather impressive. She has gotten sad, homesick, scared, and discouraged, but never once has she questioned why she has had to go through this trial. Never once has she doubted the Lord's hand in her life. When things are the worst, she asks me to pray. We have had some special experiences as a family praying together in humility and faith. She got a special package today from Hatcher Wheatley's family. It made her day. In each of her prayers, she prays for Hatch and the other children here with her long before she asks for any of her own blessings. The two year old boy from the next room that would wave at Timmie through the window was discharged today. They bought Timmie a small stuffed bear. She cried at the thoughtful gesture and out of relief that he was doing well enough to go home for a bit. She is learning so much about pure love, the pure love of Christ. She had some friends stop by over the last couple of days. Kenzie yesterday and Kaden today. Her friends have been amazing through all of this. A group of them even facetimed her from Relay for Life, an event that she headed up last year. She was so happy to see how many of her classmates were supporting such an important event. It is a little ironic that long before she got sick that she had such a strong conviction for supporting causes such as these. She loves getting emails and cards from all of you. You are blessing her life when she needs it the most.

Surgery #8

Well...let's start with the good news. This morning, before her surgery, her CRPs were down to 4! The surgery went well, the muscle looked great, and Dr. Carroll was able to close her lower leg. Great news! Now we just pray that the infection will continue to decrease and respond favorably to all of the antibiotics that she is on. There is a chance that the infection could get worse and we would have to start the process all over again; that did, after all, happen last time we closed her all up. However, we are optimistically looking forward to recovery after lucky surgery #8. Post-op wasn't so lucky, unfortunately. Before surgery Timmie was feeling unusually trepidatious. She texted Kaden at 6:45 am to let him know she was nervous, and she cried for the first time going into the OR. When Timmie got back to her room after spending some time in the recovery room, she was breathing heavily and couldn't catch her breath. Her chest would rise so high off of the bed with each breath that she was literally arching her back. Her oxygen was dropping and her blood pressure and heart rate were sky-rocketing. They quickly called a rapid response and within minutes the room was filled with a critical care team. There were easily 15-20 people in the room and another dozen or so just outside of the door. Timmie was in tremendous pain, similar to what she experienced after her second surgery. I was frightened and stood near the back of the room staring out the window and praying for help. They told Timmie that I was in the room and she looked for me, so they had me come to the head of her bed. It's amazing that in critical situations like these I can push aside my own fears and help Timmie deal with her own. And when I say amazing, I mean entirely beyond my own strength and capabilities. Those are the times when I feel the Lord take over. I rubbed her hair, held her hand, and whispered in her ear. I prayed for strength and peace for both of us. The medical team was prepared and knowledgable, but visibly concerned. Without making too public things that are tender and sacred to Timmie, I will say that she was encircled in the arms of God's love. After about 40 minutes (and rather suddenly and miraculously) she returned to normal and we were both filled with peace. Several people - doctors, nurses, social workers - were worried about both Timmie and I after the traumatic episode, but we were both extremely comforted. Ok... I have been resisting the urge to throw out my favorite Scarlet Letter quote because I will inevitably be made fun of by just about everyone in my family, but we have come to the point that I have no choice...I just can't hold it in. So my boyfriend, Nathaniel Hawthorne (it's okay, Bo knows and has come to terms with it) so astutely observes, "In our nature, however, there is a provision, alike marvelous and merciful, that the sufferer should never know the intensity of what he endures by its present torture, but chiefly by the pang that rankles after it." I believe that Hawthorne acknowledges here the strength of the human spirit. It is indeed "marvelous and merciful" and amazing and mind boggling all at once that when we are called to face the unthinkable challenge, the unbearable burden, the unimaginable obstacle, that some power inherent within us all kicks in, and we are able to endure, survive, even thrive amidst the struggle. I have felt this before and am most definitely feeling it now. I am sure that the "pang that rankles" after this trial will be unlike any pang in my heart I have ever felt. I am sure that it is a feeling that will resonate within the depths of my soul for all my years to come. But I am thankful to my Father in Heaven for this provision of strength and fortitude, and I testify that He is ever near.

Kindness and Passion

Ok. I didn't blog yesterday or today. So sorry. We have been super busy and I am exhausted. However, we have some good news. Yesterday Timmie's CRPs were down to 19 and today they were 7! This is spectacular! The CRPs measure the infection in her body. They have been anywhere from 35-45 for most of our stay here. We are hoping this is a good sign for her leg; they may even be able to close her up tomorrow. Progress seems to stimulate hope, and we need as much of that as we can get. We finished day three of the ATG-immunosuppressant therapy, so tomorrow will be her last day of the ATG for this month. She will continue with the cyclosporine and even the steroids for a bit. Timmie had some difficulties today (nausea, chest pain, abdominal pain) but overall it was a good day. Yesterday she felt pretty good, but struggled keeping her spirits up...I'm going with she deserves some time to process her sorrow, fear, and disappointment, but it is still hard for mom and dad to watch. As crazy as it sounds, there are moments during this nightmare that I will treasure for the rest of my life. For the most part they are small things like when she whispers, "Goodnight Mama...I love you" or the way her cool hand feels as it tightly grasps mine when she needs support during something that is uncomfortable or painful. Certain images will be etched in my heart like the way she lit up when the two year old boy from next door came to her window with his mother and blew her a kiss. "What do we have for him, mom?" she asked. Today a young woman named Rachel, who has recently undergone a bone marrow transplant, and her father paid Timmie a visit. Rachel was diagnosed when she was sixteen and missed her junior year of high school. She was able to return for her senior year and will be attending college on a volleyball scholarship. It was so good for Timmie to be able to see someone who has made it through such a difficult trial and see that life really can get back to normal after battling a life-threatening illness. Rachel was vibrant, kind, and compassionate. Also, a few of her friends stopped by today, and as difficult as the past couple of weeks have been, you would never know it by the way she talked and laughed with them. She is constantly receiving uplifting messages and e-mails, and although it would be virtually impossible for her to respond to all of them, believe me when I say that each one helps to lift her spirits. Bo and I received two generous gifts today, both from families who have recently gone through similar experiences...one who is actually still fighting the battle. I am beginning to adjust to the reality of our circumstances, and I am coping better and batter everyday, but what continues to amaze me and catch me off guard (and bring me immediately to tears) is the selflessness and sincerity of so many people -like these two families- who want to help ease our burden. Ok... One last experience because this was going to be a quick late night update. I was waiting down in the lobby for Bo two nights ago because we were going to the store to buy Timmie some Golden Graham's at the grocery store. A family had taken their teenage son for a ride in his wheelchair and I watched them for a bit, thinking how nice it would be to get Timmie out of her bed and room, even briefly. His 11 or 12 year old brother and his parents were with him. They had stopped their walk directly in front of the volunteer who was playing a beautiful song on her violin. I looked into the face of the young patient and could see his love for music. He focused intently on the violinist and seemed to enjoy each note that was played. I have several students who are in band and choir, so I recognized that look...that passion in his eyes. When the violinist completed her impressive performance, the four family members applauded vehemently and smiled with gratitude and appreciation. Then, within moments of their heart warming praise, the teenage boy in the wheelchair began to weep. He cried out with deep, heavy sobs. "I have not heard that song for so long," he wept. "Thank you! Thank you!" Tears began to roll down his parents' faces as they patted him on the back. I thought about how important it is to be passionate about the things that are most important to us. I thought about which things in my life have really mattered up to this point, and at that moment it was perfectly clear.

No Baci Rolls

Timmie's biggest complaint about today was that she was really craving a Baci roll from the cafeteria, and they were fresh out. Considering the complications we have had the past few weeks, it is pretty amazing that she considered that to be her biggest setback today. Dr. Carroll, super-surgeon, made it back from her rock- climbing excursion, the one that caused Timmie about once every 4-6 hours to mumble from her bed, "That's just crazy." I am pretty sure Timmie has never prayed so hard for the safe return of another human being. Her face lit up as usual when she saw the woman who not only cares for her wounds but builds up her soul. If there has ever been a person to go above and beyond, it is her. I wouldn't be surprised if Tim ends up wanting to become an orthopedic surgeon, and Dr. Carroll would be thrilled if that's how things worked out. I am pretty sure she loves Timmie as much as Timmie loves her. Her 7th surgery was great. They were able to close up the ankle and the thigh wounds and Timmie's pain has been manageable all day. In addition to a great surgery -and we are qualified to make that distinction because we are becoming surgery connoisseurs- she was able to complete her first day of ATG therapy, the one she started but reacted to yesterday. With some added precautions and a slower infusion rate, there were no complications at all. She was able to spend some much needed time with six-year-old brother Julian, even if it was just pretending she was interested in his Texas vs. Baylor gridiron battle on the x-box. He is starting to feel a little more comfortable in the foreign hospital setting, which means a lot to her. At first he didn't want to talk to her much by phone or even in person, and that was tough for her because she is such a phenomenal big sister and she adores everything about him, especially his sometime inappropriate and defiant as well as always independent behavior. He is her antithesis in that way, and secretly I think she sort of admires it. We are so grateful for the rest she has had today from pain and affliction...that may sound strange considering she did have her 7th surgery today. But progress is progress. We also had a special home cooked meal delivered by Keith Hamilton and his wife Ludy and their three boys. Keith is another one of Timmie's heroes. If you don't know who he is, you should google him and read his book. It is amazing! Timmie admired him long before she met him. All in all it has been a great day. It is interesting that now as I say that and I am filled with relief for my sweet Timmie, I can't help but think of the other children here in this hospital or anywhere in the world tonight who may be suffering, who may have had a day that felt discouraging or defeating. My heart goes out to parents who may be praying for just a moment of relief from their seemingly impossible challenges. Thank you all so much for your prayers. I have felt my burdens lifted even in the moments of despair. I know that my Redeemer lives. I feel His love. I feel your love as well.

First Day of Therapy

The first day of therapy did not go as well as we had hoped. After about an hour and a half, Timmie began to have fever, chills, and increased heart rate. They stopped ATG through the IV, and it looks like they will try again today. She is in her 7th surgery right now, and Dr. Carrol, our hero...I could write an entire blog about her greatness, is considering closing one of her three open wounds, probably the thigh since it seemed to be the least infected. Timmie is managing to stay positive, but she begins to feel overwhelmed if she looks very far into the future. She longs to put this trial behind her and go home to family and friends. Yesterday she reflected, "One day I will be able to take a bath. One day I will be able to walk. One day I will be able to see my friends." Trusting in the Lord's timing is often one of the hardest things to do. Bishop Farnsworth recommended that we read a talk from Kent F. Richards from April conference entitled "The Atonement Covers All Pain." It was such a comforting message, and we read it just two days after Timmie's nerve pain had peaked and we were struggling to get on top of it. Watching her suffer so much is the hardest thing I have ever done. We both found solace in the late and lonely hours of the night as I read his words by her bedside.

Immunosuppressant Therapy

Today we are beginning immunosuppressant therapy despite the fact that she still has an infection and three open wounds. Not an ideal time to suppress the immune system but we are left with few options. With no neutrophils it seems that we may never get on top of the infection. So as one doctor put it, "we bite the bullet and hope for the best." T There are three drugs involved in the therapy. The first is ATG a drug produced from injecting T-cells into a horse and letting it build up antibodies. There are many risks for reaction, so a steroid is given as well. The third drug is cyclosporine, which has similar purpose as the ATG - to kill the T-cells (suppress them might be a better word) in her body which could be preventing her stem cells in her bone marrow from producing white cells - neutrophils in particular. The therapy can work up to 60% of the time, but usually takes four to eight weeks to do so. Today we pray that her body won't reject the drug and that it will do what it is intended to do. We pray that it won't cause even more complications with her per-existing infections and wounds. One concern is that the steroids necessary for treatment will inhibit healing of her open wounds. The plan is to taper her off of the steroids a little sooner than normal. There are too many risks to mention, however, so we bite the bullet. The bone marrow team is preparing to intervene when they feel it expedient. They have identified umbilical cord blood that is a 4 out of 6 match. They are also testing blood of both biological parents and of her biological half brother. If one of us is indeed a half match, they are considering a bone marrow transplant with a combination of cord blood and half match from family member. I pray it doesn't come to this, but it is comforting that they are preparing for anything. They are in constant contact with The National Health Institute in Washington D.C. Timmie has several unique factors contributing to the rarity of of her already rare diagnosis. Now my husband, father, and brothers will lay their hands upon her head and confer a blessing upon her. I am grateful for the power of the priesthood and the power of prayer. I feel strength from the prayers being offered in her behalf. Today a wonderful older woman, performing custodial duties in our room, sat down her mop and threw both of her arms around me. She whispered, "I love you" three times as a tear rolled down her cheek. The funny thing is I believed her. She sensed the gravity of the situation and her kindness and compassion allowed her to truly love complete strangers. I will love like this from this day forth.

The Diagnosis

So, many people are asking how all of this happened. It is probably a good idea for me to give a brief recap from the beginning considering there may be some big changes tomorrow regarding her treatment and therapy. Timmie played five basketball games the weekend of June 1-2. On Monday, June 4, she went for a run to begin her rigorous soccer summer regiment. After running less than a quarter of a mile, she blacked out. Feeling frustrated, she walked home. She had dealt with this feeling before because she had been fighting anemia for a couple of years. She called me to tell me what had happened after she had worked a morning session of basketball camp up at Highland. I was definitely concerned because she had recently found an iron pill that had been appearing to be effective. I told her to meet me at the Children's Clinic on her lunch break so we could get a quick blood count. We had been through the routine dozens of times. She got her finger pricked and while waiting for the results got a little impatient and headed back to Highland for little girls camp because she just "couldn't be late for ball handling drills." For those of you who know Timmie, she is driven by responsibility. Dr. Yost, an old friend, walked in and sat down on a chair. He walked in and asked where my daughter was, and I explained. His words still ring in my ears: "I'm concerned with her numbers. There is something wrong with Timmie." I began to cry and replied, "I know. I have known." things went quickly from there. Her platelets were dangerously low which was disturbing for everyone considering her five basketball games played 48 hours earlier. A bump to the head could have been fatal. Bo went to pick her up from Highland - driving herself was definitely out of the question. As calmly as he could, he told her we needed to get back to dr. to run more tests. When she realized we would be at Primary Children's the next day for a bone marrow biopsy, she cried. I am sure she sensed the urgency being driven by her father and being greeted by her grandpa as she walked in the door. My red and swollen eyes may have been an indicator as well; although I was trying so hard to be strong. At Primary's, they ruled out leukemia by the numbers; in fact, they almost didn't do a biopsy because they were 95% sure this looked like a blood disorder called ITP that could be treated with steroids. I was a little uneasy at the idea of not doing the biopsy and expressed that if there was a one in a million chance something else was wrong, I wanted the test done. As the doctors deliberated, I prayed they would make the right decision. Five minutes later they walked in and had decided to go ahead with bone marrow biopsy just to be sure there was nothing else was going on. I guess at that point I should have realized the test was needed. It was a Tuesday. On Friday morning, June 8, I got the call that there were virtually no white cells in her marrow and she had been diagnosed with aplastic anemia. It was a life threatening illness that could perhaps be treated with immunosuppressant therapy or a bone marrow transplant. I rocked back and forth on my front porch, the place I had retreated to for the call. I was frantic and the journey had begun. Later that day after preparing for blood and platelet transfusions, Timmie sat on the bench cheering her team on in their summer tourney. I knew she was hurting, and I was amazed by her loyalty, selflessness, and courage.

Surgery #6

So, apparently I am becoming a blogger. Not sure it's my thing, but practical has always been my style, so we will give it a whirl. Today...hmmm...I wonder if the date will show up on this thing...marks our 11th day at Primary Children's Hospital and Timberly's sixth surgery on her leg. Our days have been eventful (if my students are reading this that was an example of litotes, although I don't know how intentional it was so probably not a very good example), so I will definitely have to add some posts about our previous experiences as I go along. Her first three surgeries were focused on the compartment syndrome in her lower leg. Her fourth reopened that compartment as well as her ankle. Her fifth opened lower leg, ankle, and lower thigh. There were some complications last night after surgery #5 (understatement once again) that resulted in her bleeding out of the vacuums they had attached to her open wounds. Did I mention that they leave her wounds open at times in order to vacuum out infection continuously while anticipating at least one more necessary procedure? Well, suffice it to say the two of us had the most traumatic experience of our lives last night waiting for a doctor to arrive to stop her bleeding. I teach my students that writing is therapeutic, but hypocritical as it may sound,there are no words -yet- to express the horror I felt as I knelt beside her bed applying pressure to her erupting wound and pleading for help from someone...God, the nurses, the resident, anyone. Needless to say, after what seemed like eternity the situation was handled, and although excruciatingly painful and horrifically terrifying for sweet Timmie, she was stable and somewhat pacified for the remainder of the night. This morning Dr. Carroll, an amazingly talented and caring orthopedic surgeon, informed us they needed to take her back to the O.R. to repeat the procedure, reaffix the three vacuums, and administer another nerve block for the leg. The block only lasts about 16-24 hours, but Tim sees it as a huge blessing because her narcotics don't alleviate her nerve pain. She has a pain doc who is working on this particular challenge of her condition. Since we have been here, she hasn't been mobile. With a clot in her right arm and infection in her left leg, IVs in her left arm and blood pressure cuff on right leg, there really isn't much she can do for herself. She has had to completely sacrifice her independence and allow us to care for her. She has been remarkable in the face of adversity but who would expect anything less of her? Obviously, she has her moments of fear, doubt, despondency, and sorrow, but inevitably she rises. Oh...that reminds me of her favorite Maya Angelou poem... "I Rise" or maybe it is called "Still I Rise". I would post it now if I were that talented. Taryn, that may be a job for you. Her sixth surgery went well, and she is currently watching episodes of Friends, eating ice cream, and probably texting Kaden. This is as happy as she has been in quite some time, so join with me in a big sigh of relief and praise to our Heavenly Father for this moment in time. We love you all and you really could never know how each prayer offered in our behalf, each tear shed in compassion, each thoughtful card or gift, each kind act or inspired word touches are hearts deeply and uniquely. As overwhelming as all of this can be, we are learning to tackle each day in isolation and make small goals for ourselves. Sometimes the goal is simply to survive, but other days we are more ambitious. I would especially like to express gratitude for my family. Each one of them is able to present a face of fortitude and resilience. I am smart enough to know that they save their weak moments for times and places that are hidden from my view. What a show of love to stand as beacons of strength to us in our darkest hour. I miss my sweet Julian more than words could ever express. I love my husband with all my heart, so much that I hesitate to express it publicly, as if it may somehow sacrifice a bit of its pure and sacred nature. I should get over that. He is amazing and has been our rock. I am thankful for the Savior and his Atonement, his ability to succor his people in their sorrow. I am grateful for the Holy Ghost and the peace he provides to my troubled soul.