Just wanted you all to know you’re invited to celebrate with us!
We hope you will join us in honoring Sarah’s donor’s family and “Pay it Forward for Sarah”. We had the opportunity to “Pay it Forward for Abby” last summer while staying in the Ronald McDonald House. It was exciting to develop our plan and so wonderful to do something nice for other people…just because someone else had done something incredibly unselfish and wonderful by giving life to our friend. Someone may leave an extra large tip for the waitress at their business lunch. Others may work as a family in their neighbor’s yard. Some of Abby’s friends paid for the car behind them in the drive-through. Maybe someone you know is lonely and needs a visit and a friend. It doesn’t have to be expensive, and it doesn’t have to be grand, but it should from your heart. We thank you ahead of time for your service in our behalf. We are so excited to hear about what you do to “Pay it forward for Sarah”. Please comment and share your stories with us! If you’d like to leave a little card explaining your service or gift, please feel free to click on the one below, print it out, and pass it along. Maybe, somewhere, somehow, her anonymous donor’s family will have someone do something kind for them, and they’ll be able to feel loved during such a hard time in their lives. Thank you so much!
I recently wrote this article for our Dixon Family Newsletter. It’s something I’ve been pondering for a long time, but more intensely lately. I thought it applied really well to the decisions and perspective we’ve tried to keep throughout our journey with Sarah, so I wanted to share with a little larger audience that has, perhaps, a little more interest in my thoughts. And, I hope, through sharing it I might be able to help someone else out there to take a look at the tough things they’re going through just a little bit differently.
Gifts of Adversity
“Life’s greatest gifts often come wrapped in adversity.” —Richard Paul Evans
Steve and I have been reading and discussing a very thought-provoking little book by Richard Paul Evans entitled, The Four Doors. On the cover, it’s described as “a guide to joy, freedom, and a meaningful life”. In the chapter we recently finished, it talked about adversity and how our challenges are what compel us to rise up and become. He said, “Most of the greatest learning experiences of our lives come from our adversities. In many cases, we do not succeed in spite of our challenges and difficulties, but precisely because of them.”
At some time in our lives, we all have challenges, difficulties, losses, worries, fears, and struggles that seem to consume us, and cause us to lose focus on the things that used to bring us joy. Sometimes we get stuck in the “why me” stage of our struggles. Evans explained, “We can spend our days bemoaning our losses, or we can grow from them. Ultimately, the choice is ours. We can be victims of circumstance or masters of our own fate, but make no mistake…we cannot be both.” So, we choose….
When Sarah was little, I had a conversation with Grandma Law about enduring trials. During that conversation, I realized that just simply enduring (waiting them out, or simply existing until they’re over) wasn’t enough for me. I wanted to endure them WELL. So I decided then that no matter what happened, or how hard it got, I would always find a way to endure the struggle, the hardship, the pain…the best that I could, and that I would emerge victorious. I would learn something from it, find joy somewhere in it, or become someone I hadn’t previously been. I’ve always loved the quote by Elder Marvin J. Ashton that says, “We must be more concerned with what we do with what happens to us than what happens to us.” (Oct. 1974)
All that stretching, growing, learning, and becoming is most often a very painful process, but one that’s absolutely necessary for us if we’re to become the people we’re destined to be. Evans tells of a time when he lived in Chianti, Italy. The view from his bedroom window was postcard perfect…beautiful rolling hills ripe with blushing grapes. He was surprised one day when he commented to his winemaker friend that they must have very fertile soil to produce such famous grapes. He said, “No, we have terrible soil. Good grapes do not grow in good soil.” So, he did some research. He wrote, “It turns out that grapes are lazy. If the soil they grow in is too fertile, the grapes do not need to extend their roots deeply, which results in mediocre grapes that are used to make cheap table wine. Because the soil in Chianti is poor, the grapevines develop large, intricate root systems that stretch deep into the ground, extracting not only what they need to survive but many other nutrients and minerals as well. The result is a sweet, delicious grape. The metaphor is obvious and thought provoking.” What kind of grapes do you want to grow?
I’m sorry that you’re hurting, struggling, worrying, scared, lost, or sad. But I’m not sorry about what it will do to help you grow, if you decide to let it. I’m not at all suggesting that we shouldn’t feel pain in our trials. And please don’t think for a minute that I’ve figured it all out and can handle anything. Despite more recent difficulties, I’m still learning much even from things that happened a year ago. But isn’t that the point? To keep learning, growing, and stretching out those roots to do more than just survive?
The view is always so much clearer at the other end. We are often even grateful for the experiences we had and the ways we grew as we traveled through our most difficult times. I love what plane crash survivor and burn victim Stephanie Nielson said at a recent women’s conference in Evanston. The reporter said, “At the end of her presentation, after gently and humbly sharing the horrifying months and years of recovery she has endured and will continue in some form to deal with for the rest of her life, she said this: ‘I would get back in that plane again, to become the person I am and what I’ve learned.’” We are so blessed to have a Savior who knows our pain and how to strengthen and succor us in our trials; our spouses, our families, and our friends to listen, offer perspective, and lift us when we are in the depths; and even professionals to help us deal with our pain so we can grow through our challenges. When things are hardest, try to think of your adversity as a gift. It could be just the one you didn’t know you needed at this particular time in your life.
I was so happy yesterday that the leaders of this great little community I live in realized that organ donation is important enough to create an event and proclamation to recognize National Donate Life Month. It was really a neat event, so it made me kind of sad, that not many people knew about it. We’ll call this year a good start, but I think next time we’ll have to do something about that…
The videos from yesterday are uploaded and ready for you to see! Just click on the links below…
Big huge bonus… My sweethearts made the paper! (At least those who read the paper will know….) I kind of figured there would be something, with all the picture and note taking going on behind me yesterday. Here’s the article about Pocatello’s National Donate Life event from the Idaho State Journal. (Sarah’s name is spelled wrong, but we’ll forgive, since it was a pretty good article.)
POCATELLO — Just shy of a year since his daughter Sara received a lifesaving heart transplant, Pocatello City Councilman Steve Brown said his role in celebrating National Donate Life Month on Wednesday was “personal.”
Based on his perspective as a person dramatically affected by organ donation, Brown said he would seize the moment to express an opinion not often extolled.
“Our donor program should be an opt-out program, and not an opt-in program,” Brown said, often becoming emotional when he spoke. “If we can influence one person today, then this event has been successful.
But you need to know that one person is not enough.”
Brown was speaking in the Pocatello City Council Chambers Wednesday afternoon during a ceremony that marked the city’s observance of Donate Life Month. It included raising a Donate Life flag which will fly beneath the U.S. Flag at the Pocatello City Hall during the month of April.
On hand were two dozen observers. They included Brown’s daughter, Sara, Lance and Diane Peck, who own Downard Funeral Home in Pocatello, representatives from Intermountain Donor Services, and Megan Moore, Miss Treasure Valley, who is advocating for organ, eye and tissue donation during her reign.
Alex MacDonald of Intermountain Donor Services, the entity that oversees organ and tissue donation throughout Utah, Southern Idaho and the Southwest corner of Wyoming, started off the event by letting those in attendance know just what it is they are up against.
“Right now we’ve got 121,000 on the transplant list waiting for a life-saving transplant nationally,” he said. “Everyday 18 to 20 of those people die waiting because there is not enough transplantable organs to help everyone. That’s what we need to end.”
Representing that tragic reality was Miss Treasure Valley Moore, who lost her brother last year. She explained that in April of 2012 her family was told that her brother had a liver ailment that would require transplant and he was given a seven-year window.
“We were told seven years and we were cut short six because he unexpectedly took a turn for the worse,” she said, fighting back tears. “Every day people are in need of some sort of organ transplant and each day people are dying because there are not enough organs available. Unfortunately, my brother is one of those who didn’t make it.”
Prior to Moore and just after her father spoke, Sara Brown talked about her ordeal. She shared some of her personal likes and favorite foods, saying that she “could not live without music.” She also said that when told she would be getting a heart transplant, she was on so many medications she simply can’t remember the moment.
“But I do know how grateful I am for my donor’s selflessness,” she said. “I do know that I wake up every day hoping that if I live life to the fullest and find some little blessing in it. I hope that that will some how be a way to thank that special person. I do know how someone else’s decision saved my life. I can now wake up feeling wonderful and go throughout the day and go to bed feeling just as fantastic.”
Sara was born with several heart defects. The surgeries and medications she endured and the weakened state she was often left in also led to the development of a condition that prohibited her body from absorbing protein.
The condition left her gravely ill during the latter part of 2012 and early 2013.
MacDonald said that two opposing stories summed up the difficult nature of what he did and that with each happy ending, there are also many sad ones.
The Pecks were on hand in their role as advocates for organ and tissue donation. Diane frequently speaks on the topic. Lance said he too sees both sides of the issue. He says organ donation is a topic families should discuss before the need to make a decision arises.
“I often see how families are approached about organ and tissue donation,” he said. “Many times, the family hasn’t given it any thought. Unfortunately, many times, because people don’t give it thought, they decide not to donate.”
Brown talked about the day Sara’s cardiologist came to their room and said she would get a transplant.
“We never expected, in Sara’s life, to be able to have a transplant,” Brown said. “To have that news delivered was grateful jubilation. In that moment that we received that news, it only took a second to realize that another family had heartbreak and tragedy in their lives. We continue to pray earnestly for that family. I will never be able to adequately express the complete love and appreciation and gratitude for this most special gift.”
Moore said her brother’s story and his sudden death for the lack of an available donor is what led her to take on organ and tissue donation as a platform.
In just a sentence or two, she may have best summed up the need and the simple solution.
“I don’t think anyone really understands the importance of organ donation,” Moore said. “Did you know that to become an organ donor, all you have to do is check yes when signing up for a license? Who knew it was that simple?”
Moore also said that although her brother was not able to be saved through organ donation, he was an organ donor.
“Within 24 hours, he was able to give sight to two others,” she said.
* * * * *
Thank you for taking time to watch the videos and read the article. Organ donation means so much to our family, as I know it does to many of you. Thank you to those of you who share our posts, who have talked to your families and friends about this, and have become organ donors. Just like discussions about life insurance, wills, and funeral arrangements, it’s an uncomfortable topic, and nobody really likes talking about it. But just like those things, it’s important to make the organ donation decision ahead of time. I really didn’t think about it much since I checked “yes” on my driver’s license so many years ago…until it mattered to me. This is me (someone who loves you) just encouraging you to make the decision, before it matters to someone you love.
Oh, just a few last things (because of some discussions I’ve had) and then I’ll leave this subject…(for a bit).
If you’d like to register as an organ donor, here’s the link:
If you want to help spread the word about Organ, Eye and Tissue Donation… here are some ideas:
- Feel free to share Sarah’s story, the blog address, the newspaper article, or the video links.
- 2014 Donate Life Month (stuff for Facebook, blogs and websites)
- Spread the Word
If you still have questions about organ donation, here are some good links to help answer them:
The City of Pocatello, in conjunction with the “Yes” Idaho! Organ Donor Registry coalition and Intermountain Donor Services (IDS), held a wonderful awareness event at City Hall today including a city proclamation, awards and flag raising. Steve (in the capacity of city councilman) was asked to read the proclamation in the mayor’s absence. He was very honored (in the capacity of Sarah’s dad) to be involved both on a city level and a very personal level. In 19 days, it will be one year since Sarah was given the gift of life because someone said “yes!” What an amazing gift and legacy to leave behind. I’ve urged you many times to become a donor, if you’re not already. I realized that many of you, despite the amazing things you’ve “seen” happen for Sarah through organ donation, might still have questions or concerns that are causing your hesitation. Did you know that you can still be an organ, eye and tissue donor even if you have health issues? We’re happy to answer your questions, if you want the encouraging (though possibly slightly more skewed) version of those answers. Also, the links above are wonderful ways to learn more. (It’s also important, once you’ve made your decision, to make sure your family and loved ones know your wishes. Simply having it on your driver’s license isn’t quite enough. They will will ultimately be the ones to sign the release forms, and give the final ok.) Whatever you decide, we still respect you and your decision. And we will always love you.
Besides Steve’s comments and reading the proclamation, Sarah spoke for a few minutes, and another sweet young woman, Megan Moore (Miss Treasure Valley), also spoke about losing her big brother who was waiting for a liver transplant. Sarah and Megan helped raise the flag, and they, along with Lance and Diane Peck were recognized and given a thank you “teardrop” award symbolizing the gift of life and hope. It is given in honor of the donors, the recipients, and families that organ donation affects. Sarah was given one to thank her for her part in spreading the word and teaching people about organ donation through her blog and opportunities like today. Megan’s goal during her rein as Miss Treasure Valley is to save at least one life because of her efforts in education people about organ donation. The Pecks are very involved with IDS and have given countless hours educating people in this community and helping families with both sides of organ donation. It was pretty touching.
Here are some pictures I took at the event today. I also had some video clips of Steve, Sarah and Megan sharing their thoughts, but we can’t get the video to work right now. I’ll post them as soon as I can. Promise!
Happy Sunday everyone! I was asked to speak in my singles ward today. Yep, I know what you’re all thinking. “Didn’t she just barely speak?” Yes, but that was in Stake Conference – where all the wards gather to hear speakers. So, because it was in my little ward, I felt so much more at home and comfortable. Here is my talk I gave:
I had a really hard time writing this talk. The topic I was given was pretty broad. Bishop wanted me to speak on how my testimony has grown over the last year. As I wrote it, read it, rewrote it and practiced it, I felt like the direction I needed to go is kind of a continuation of last week’s talks – which were about overcoming trials. I hope that I will have the spirit with me so I will be able to say what you need to hear and learn.
Trials are hard and obnoxious but so very important for our spiritual growth. The Lord has us learn through experiences. There are usually two kinds of trials. The first being the results of choices we make. The second is when the Lord tests us. He does this to help us learn and grow.
Richard G Scott said, “They are evidence that the Lord feels you are prepared to grow more. He therefore gives you experiences that stimulate growth, understanding, and compassion which polish you for your everlasting benefit. To get you from where you are to where He wants you to be requires a lot of stretching.”
When Christ was in the Garden, He had asked Heavenly Father to take away the task that had been given Him. But rather than having it taken away, in the end He told His Father, “If not my will, Thy will be done.” There are times when I feel the same way. Sometimes I try to bargain with Him or remind Him how that I have already learned this lesson, but eventually I just give in and mimic what my Savior said.
My sophomore year of high school was a really bad time for me. My PLE kicked into high gear, I couldn’t go to school so my grades were going downhill, I missed my friends, I was always home feeling yucky and never wanted to do anything. There is one day in particular that will always stick out to me. That day I kept asking why me, what was I thinking when I signed up for this, this is so unfair; I want a different trial…. You know what I’m talking about. All those things we say when we are having a hard time and feeling sorry for ourselves. I remember making the mistake of complaining to my dad, which is not a good thing. He grabbed his scriptures and plopped me down on the couch. He asked me to tell him why I was so upset. I told him I knew that I had a divine plan and that I once told my Heavenly Father that I was strong enough for this and that I could do it faithfully. But all I wanted was for this trial to be done so I could move on with my life. He listened and after I was done talking, all he said was, “Well, why NOT you?”
That question has changed my outlook on any trial I have had and will ever have. Instead of thinking and asking, “What did I do to deserve this?” we need to ask, “What does my Father in Heaven want me to learn from this? How will it help me become better?”
But in order to be able to ask those questions, we need to have faith. One of my very favorite stories of when Christ was on the earth is when a father brought his little boy to be blessed by the Savior. Christ said if he had faith, his son would be healed. I can imagine, he almost immediately answered, “Yes. I believe. I have faith.” But then said, “Help thou my unbelief.” I know I have felt that way in my life more times that I’d like to admit. We are so eager to receive blessings and help, we don’t often realize that we need to come to our Father with more than just a “please fix this.”
Another story that I love is found in Matthew 14. Christ appears to His disciples as He is walking on the water. Verses 27 through 31 say, “But straightway Jesus spake unto them, saying, Be of good cheer; it is I; be not afraid. And Peter answered him and said, Lord, if it be thou, bid me to come unto thee on the water. And he said, Come. And when Peter came down out of the ship, he walked on the water, to go to Jesus. But when he saw the wind boisterous, he was afraid; and beginning to sink, he cried, saying, Lord, save me. And immediately Jesus stretched forth his hand, and caught him, and said unto him, O thou of little faith, wherefore didst thou doubt?”
Peter was faithful in the beginning, but as he looked around at what he was doing, he lost his faith. The act he was performing was impossible, unless he had faith in his Savior. There are times in my life where I start a trial all pumped up and eager to conquer it. But as time goes on, I find myself becoming afraid, like Peter. I find myself not knowing how I will complete the task ahead.
When Elder Bednar came for the fireside in February, there was a question about knowing what we do and whether it is out of faith or fear. I loved his response. He said that fear is the opposite of faith. If we act out of fear, it’s because we think everything that could go wrong, will. Faith is action.
Alma 32:21 says, “And now as I said concerning faith – faith is not to have a perfect knowledge of things; therefore if ye have faith ye hope for things which are not seen, which are true.” We all need faith to get back to our Heavenly Father. We also need faith to know that the Lord knows what He is doing and we need to trust that everything will be just fine.
Elder Worthlin once said, “It’s always okay in the end. If it’s not okay, it’s not the end.” I just love that. It gives me such hope. I know that we are given trials to help us, not damage us. I know that this church true. I know that our church leaders are called of God. I know that I have a Heavenly Father who loves me so much, I can’t even comprehend it. I know that He loves you too. I say these things in the name of Jesus Christ. Amen.
It seems everybody’s been asking lately how our Sarah is doing. I love that she’s still on their minds. Our response these days is, “She’s doing terrific…fabulous…incredibly well…(or insert any extremely positive adjective here).” And she really is. We don’t know yet if her mild cellular rejection is gone, but we’re trusting that based on how she’s felt lately, and how good things look clinically, she’s definitely on track. (Her next biopsy will be on April 11th — her ANNUAL biopsy, if you can believe that — should tell us where she’s at with the rejection, among many other things.) Her clinic visit last Monday revealed a wonderful echo, drug levels that were just perfect, outstanding lab numbers, an albumen level at an awesome level of 4.1 (still can’t get over how incredible that is), and a great exam. Physically, Sarah seems to be doing so well. She’s fought through a couple of viral infections we’ve tried so hard not to share with her, and almost every day, is just feeling really good. She’s currently enrolled in two classes at the LDS Institute of Religion, and has spent many of her days in the last two weeks away from home, with friends. It’s a great change for our former home-loving, introverted, “sickly” daughter. She still loves being home, but there are so many more things she loves now. It makes me happy to see her growing and becoming all she can be.
Today is Valentine’s Day. A day full of pink and red hearts, candy and sappy valentines. To a family of a heart transplant recipient, it’s a lot of other things, too. It’s the middle day of The National Heart Association’s Heart Month. It’s the last day of CHD Awareness Week (February 7th-14th). It’s also National Organ Donation Day. Valentine’s Day has always had a deeper meaning in our family since it’s also the day Steve proposed to me, and we made plants to love each other forever. We have a special family tradition I started when our little girls were young where we have a fancy dinner together with cloth napkins, candles and even a special dessert. Then we send the kids on a treasure hunt to find their valentines from me and Steve. When the girls were tiny, it was fun, easy, not really a big deal, but an opportunity to share a special time together and express our love to those sweet little girls. Then the boys came along, and after a couple more kids and a few years, it stuck. (What was I thinking?) I tried to not do the treasure hunt one year, and they all came apart on me, and told me I HAD to. So, the teenagers were running around helping the tiny tots. It’s kinda funny to me that the big kids enjoy it just as much. Now it’s just what we always do. Valentine’s Day (or a day or two before or after) is a family day for the Browns. (I’m pretty careful to make sure I ALWAYS get my date night with my first Sweetheart, too.)
With all the other national heart awareness stuff settling in my mind now — things I never used to know even existed — I’ve thought a lot about how many people are affected by those sweet tiny hearts that come hooked up wrong or undeveloped. Hearts that beat irregularly, too fast, or not long enough. Hearts that are worn out by the time those babies turn two. Hearts that have had so many surgeries in their first year that babies don’t even know where “home” is. And then there’s the grown-up hearts that literally break in two, knowing how hard their tiny baby is working to stay alive and there’s nothing they can do but hope and pray. CHD Awareness is making a difference though. Even though research is grossly under-funded, things have changed A LOT since our tiny heart baby came into this world. When Sarah was born, we had no idea that there was anything wrong with her heart until she turned blue and didn’t respond to oxygen. We were told there were some surgeries that could be done to prolong her life, but since the oldest person living with a Fontan was only 20, there wasn’t much known about her future. We were told she wouldn’t be a candidate for a heart transplant because it was too risky. I read an article just a few days ago about a little girl in Arizona with similar defects as Sarah that was headed home soon after her Fontan. It made me smile what the cardiac department head at Phoenix Children’s Hospital said… “It’s like London has half a heart, and that is fraught with its own problems. With one ventricle doing the work of two, London will require yearly echocardiograms and lifelong cardiologist checkups. Survivors with single ventricle often return to the hospital between age 20 and 30, at which time they will require a transplant.” I smiled because with 20 years of medical advancements and research behind us, these children are now often born with parents knowing what’s wrong with their babies’ hearts. Instead of wondering how many years they’ll have together before their hearts get too worn out, they grow up knowing that someday, they’ll get a new heart. To me, that’s a miracle. A totally different visual path than we had with our heart baby. And it makes me happy. Is it still hard? You bet. But, for many of these kids and their parents, the future seems to have a little more light in it than ours originally did.
With a focus on hearts and organ donation, I’m also reflective on a family or individual who made the decision to share a very special heart with one of my sweethearts. I’ve always been an organ donor, since I was old enough to put it on my driver’s license. It never really meant much to me, though, until there was a need for a life-saving organ in my own family. What an amazing miracle that is. That the decision to donate organs at the end of one precious life can save up to eight more. What an incredible opportunity to give of yourself. Having visited with a family whose daughter wanted to be an organ donor, I understand a little now of how difficult that choice might be when it comes right down to it, in the midst of the sadness and heartache. I honestly can’t imagine how tough it would be, but I like to think that now that we’ve experienced the miracle of organ donation first-hand, we wouldn’t even hesitate to share that precious gift of life with someone else. We are so grateful that things have changed so much in the heart world, and that Sarah had an opportunity to have a second chance in her life. We are grateful for her donor and their family, for making a tragedy in their lives into a celebration in ours, and probably others.
What an incredible world we live in now. A world of research, discovery, advancement, awareness, and more research, discovery and advancement. How blessed we are to live in a time and place where “blue babies” have a chance to live. Oh, it’s truly a happy heart day!
Yesterday, Steve and Sarah went back to Primary Children’s at the crack of dawn for a follow-up biopsy to check Sarah’s rejection. Everything went well. I’ve been told that Dad didn’t remember where to go, Sarah was really calm when she went in for her cath, the anesthesiologist was really cute, recovery was easy, Sarah bossed the nurses, the transplant team at clinic was super excited to see her, and the stop for lunch and browsing at Modern Design with her dad afterward was wonderful.
I have to tell you what Steve said about Sarah bossing the nurses. (This is just a small example of her newly-developed assertiveness in her own health care. Dr. Molina, one of the transplant cardiologists, even commented about how much more confident she is now.) In recovery, there’s a protocol of how long patients need to be “watched” following certain procedures. Since it was just a biopsy and pressure check (only through her neck), and she uses conscious sedation, they usually like to keep her there for a couple of hours. Last time we went in, I think they only kept her for about an hour or so because she was doing so well and heading down to cardiology for another hour afterward for echo and clinic. Well, yesterday, when it had been a half hour-ish, Sarah said she was feeling great, and wondered when she could go. They told her she’d need to stay until 12:30…about 3 hours. She immediately told them that was not necessary because of a, b, and c… and then asked them to talk to the doctor. Apparently, the doctor’s orders were wrong and also didn’t include anything about her echo and cardiology clinic. So, the doctor wrote new orders, Sarah got her way, and after they found her a wheelchair she said she didn’t need, they were on their way downstairs.
REPORT: We got a call late in the afternoon from transplant team. Sarah’s biopsy showed that she still has mild rejection, but it’s improved. (YAY!) Sometime I’ll explain the scale and what all the letters and numbers mean, but the two things we were concerned with was the C (cellular) and V (vascular). The scale goes from 1 to 5 (1 = 0, meaning none… no clue why). C is down to 2.5 from 3, and V is down to 1 from 2.
Here’s the information she got from the coordinator, including our plan of action…
Your biopsy cleaned from C3V2 ISHLT1R, pAMR (-) to C2.5V1 ISHLT1R, pAMR (-) which is very mild cellular that a lot of times we do not treat.
1. Discontinue Nystatin, Ranitidine, and Valcyte
2. You will continue Septra through the first year
3. Decrease prednisone (steroids) to 7.5mg (1 1/2 tabs) by mouth once per day for 2 weeks. On 2/10/14 decrease to 5mg by mouth once per day.
4. Return to clinic for routine visit in 1 month.
5. Make appt for adult hepatologist at the UofU.
6. Labs on Monday (tacro and CBC).
So, she’s coming down on the steroids and discontinuing all the other yucky meds that combat problems caused by them, and returning in a month. They also told her that they won’t do another biopsy then (but wait another month) if everything else looks good, and she’s still feeling great. So, she’s happy and feeling quite comfortable with the plan. She even did a happy dance this morning when she swallowed a few less pills and realized she didn’t have to chase them with a nasty Nystatin swish and swallow. Life is good.
She and Steve are so happy about the results I hesitate to even add my maybe-a-tad-bit-skewed feelings about it. But, we decided in the very beginning to keep this blog real and honest. I’ve been on a journey of self-discovery the past few months, and have realized that I have to be more honest with myself and face my feelings so I can move past them. So, here goes my self-talk (feel free to skip it if you’re also content, and don’t need it)…. First, I need to say that I am very happy that things have improved. And very grateful. However, it makes me a little nervous to not be checking for a while to be absolutely sure the rejection is still improving. After what we’ve been through this past year, I though I’d learned to trust more. I realize that in comparison to everything else we’ve seen and dealt with, this is such a tiny issue. But I’m working through the frustration I feel about not having this resolved (at least in my mind) yet. I’m a fixer, and when things aren’t fixed, I want to keep working at it until it is. Faith and prayer, along with a mixture of trust in the Lord and a team of very qualified doctors and nurses are all I have in my tool box. (That certainly seems like enough, doesn’t it?) As we speak, I’m also working on a healthy dose of positive thinking and gratitude. The facts are: 1-Sarah is better than she was a months ago. 2-The transplant team hasn’t ever given me a reason to not trust them, and they’ve been doing this a lot longer than I have. 3-There is a plan (one they’ve probably used lots of times before) that she will probably respond to perfectly. 4-I can’t fix this. I can only fix my perception and my attitude. 5-I have everything I need, and so does my sweet Sarah. …So, now that I’ve put these thoughts into words, I shall do my very best to let it go…. I’ll put it all back in the Lord’s hands, and trust that whatever needs to happen will. Because God is good. He loves us unconditionally, and blesses with exactly what we need….every time.
On Monday, she had a follow-up biopsy to see if the oral steroid treatment helped her rejection. Everything (echo, pressures, numbers, etc.) looked beautiful. We were all happy (including her transplant team) with how good everything “looked”. When the biopsy results came back, however, we discovered that looks can be deceiving, even in this situation. Her mild cellular rejection is exactly the same as last time. (It’s crazy to me how early on, we were sure she was in rejection several times because of all the indicators in her other tests, and after biopsy, we’d see that her heart was always fine. And, now that she seems to be fine and all other indicators are within good ranges, the biopsies show rejection. I guess that just proves how very necessary those invasive biopsies really are.) The transplant team decided we needed to “bring out the big guns” and do six doses of IV steroids. These are administered every 12 hours and take about 15 minutes each. The kicker is that she has to be admitted to the hospital for three days to do them.
Transplant team decided to let us go back home so Sarah could have the opportunity to go to her New Year’s party she had been looking so forward to. They asked us to bring her back on Wednesday (yes, New Year’s Day) to be admitted. Steve drove down yesterday with Sarah and all of her stuff: guitar, games, book, ipod and laptop, favorite pillow and blanket, clothes, and make-up. She checked in last night, and has already had 2 of the 6 doses.
This girl plans to get dressed every morning, including fixing her hair and wearing make-up. She’s planning to make her bed, play some games, watch a movie or two, get in some very-missed sessions with music therapy and Rainbow Kids, have a paper-airplane contest in the hall with Dad, and spread as much sunshine and happiness as she can while she’s there. I’m so proud of her. I’m sure she’s worried about how these high-powered steroids will affect her. I know she’s frustrated that she’s still in rejection and has to be back at the hospital. I’m positive that it was hard when she realized that after getting off two more drugs last week, she’s back on every single one she had after transplant again. But, after a tear or two trickle down her cheek, she puts on her brave face, and looks for something good. The very best thing about this hospitalization is that it should get rid of the rejection. Another good thing is that it happened AFTER Christmas and we got to be home together for the holidays. And yet another good thing is that she gets to have this treatment while she feels good. I’m not sure she’s ever felt good at the hospital. I really wonder if anyone ever has…. We’re also very grateful for the close watch her doctors and nurses keep on her so we can stay on top of these little bumps along the way.
Here are some of the text messages I’ve gotten from her in the last 24 hours… (Notice the at the end of all of her sentences. For those of you who don’t know, that’s a Sarah smiley.)
Guess what?! …Because we had labs done Monday, Dr. Everitt said no labs…!!
…And each infusion is only about a half hour long!!
Just got disconnected for the day!!
People keep asking my tech and nurse if I get to go home today…. My bed’s made, my room’s clean and sunny, I’m dressed, hair fixed, some makeup, and feeling great!
I hope she and Steve will take some pictures of this amazing new phenomenon at Primary Children’s Hospital called “Healthy Sarah”. I’m sure it’s blown a lot of people away.