Keep Calm and CAREY On

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Wow! I started this post forever ago and never posted it! Sorry…

In April, Andy Grammer came and did a concert at ISU. It was wonderful. The guy that opened for him was someone that I had never heard of. That’s typical, right? His name was Todd Carey. I absolutely LOVE him and his songs! They are super happy and so much fun. My favorites are Nintendo and Float Away

 Is it bad that I enjoyed Todd’s act more than Andy’s?

In August, Todd was on his own tour and wanted to come back to Pocatello. I was super excited and listed to his songs pretty much non stop for quite a while before and after he came. It was so much fun to see him again. Daminica and I got there pretty early, so we were waiting out in the hall. He was walking toward us to get to the ballroom, smiled, and then saw the shirts we were wearing. He got super happy. I would love to say that he remembered meeting us from his first concert, but I would be lying… He asked us if he could have a picture.  How could we say no?! (Me and Daminica were talking the other day and we realized that neither one of us have seen this picture on Facebook or his website yet. So, just in case you were wondering, yes, there is a random picture of me on Todd Carey’s phone.)  During intermission, we got a picture with him and he stayed and talked for a while with us. We were so into the conversation we were having, he lost track of time and was late for his own second part. Tee hee. After the concert, we went on stage and talked with him some more while he put his stuff away.

April 15

Me, Angie, Todd, and Daminica-  April 15

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Angie, Todd, Me, and Daminica – August 22

 

I just had a really sad thought…..this is probably the closest I will ever get to talking with someone famous. (I have met Kirby Heyborne and Paul Cardall, too. So I guess I’m not a totally looser. Hehe. Just kidding!)


Incredibly Nice Things #4: PF Changs

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pf-changs-logoA few days before we moved Sarah back home from Salt Lake last summer (July 2013), Grandma and Grandpa took us out for lunch to celebrate. We went to PF Chang’s in downtown Salt Lake City after the lunch rush, to avoid the crowds. This business of protecting Sarah from germs was a little tricky at the time. When the hostess asked to seat us, I requested a table in the corner, all by itself, on the opposite side of the room where the other guests were placed. We must have been quite a sight when the waitress found us. Sarah had on her mask, and I was armed with the hand sanitizer and a large pack of clorox wipes. We quickly decided on the best place for Sarah to be seated, and like a mad woman I wiped down the entire table, her chair, and her menu. And then, I wiped the menu again. (Just a word of advice…never look at the wipes when you’re done sanitizing a menu.) When the waitress came back, I apologized for my over-zealousness with the wipes and explained that Sarah was immuno-compromised, and we had to be careful. She took the dirty wipes off the table to throw them away, and with a sweet smile on her face, excused my antics as if they were a common occurrence. PFChangsLettuceWrapsWe ordered their amazing lettuce wraps as an appetizer, with a separate plate and a spoon so we could take Sarah’s portion off the plate before the rest of us ate from it. Following an amazing lunch, we picked a couple of desserts to share, and again, ordered a separate plate and knife so we could cut some off for Sarah. Our waitress was so sweet and accommodating, I was touched when she instead brought us each a separate plate to share the desserts. In my almost constant state of near-tears, I told her how much I appreciated her service and kindness, and how much this outing had meant to us because we were celebrating Sarah’s recovery from a heart transplant. At just a little prompting from her, I told her the shortest version of Sarah’s story I could muster, and thanked her again for helping us feel normal again and have a great lunch out together. She congratulated Sarah, told us how happy she was for us, and walked away a little teary herself. As we were finishing off our deserts, the waitress came back, grinning ear to ear. She announced that she told her manager about our celebration and that they decided they wanted to help us celebrate. Then as she handed Grandpa the check, which had the total zeroed out, and “Congratulations!” written at the bottom, she said, “It’s on us today. [huge grin] Oh, and also, here are four $10 gift certificates to help us celebrate our 20 year anniversary. Come back soon!” pfchangsWe were all speechless. On our way out, I stopped to thank her, and because I’m weird like that, I had to have a hug. So that day, we got a FREE lunch (with appetizer and desserts), $40 toward our return trip, and a hug from the waitress. It was a marvelous afternoon, and I was grateful for the opportunity to share Sarah’s amazing story, touch another’s heart, and be the recipient of such kindness, yet again. Sometimes I still can’t believe all these incredibly nice things…even though I was there. So, if you live in the Salt Lake area, and you find yourself in need of a place to eat lunch, go to PF Chang’s. It’s one of my new favorite places in Salt Lake. :)

~Julia


July Clinic

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On July 31st, Sarah had another transplant clinic visit. Everything looked great…echo, labs, etc. (You’ll remember that she doesn’t have to have another biopsy until next April–unless things look sketchy–so we’re still just watching for symptoms to point to any rejection until then.) We’re happy to report that once again it looks like her heart and body are still getting along very nicely. She did get a stomach bug in mid-July that was still hanging on. They ran more labs and a sample to make sure that she didn’t have any of the nasties transplant kids often get (CMV, rotavirus, and a slew of others). They all came back negative. (Yay again!) But, a week later, the diarrhea still hadn’t gone away, so they reduced the dose of her CellCept (one of her anti-rejection drugs), which can sometimes cause diarrhea, and increased her steroids to keep things balanced. They’ve decided she has norovirus (good old-fashioned “stomach-flu”) that can’t heal completely because of her compromised immune system and the drugs she’s on that can irritate the bowel. They told her to keep lots of fluids in, and we have checked drug levels to make sure they are not being affected too much. Now, a couple more weeks later, her bowel is having good days and not so good days, but overall, things are getting better, and her Prograf level is still perfect.

In clinic, we talked about a few things that were put on the back burner when we were listing her for transplant. We sought permission and direction about having her wisdom teeth pulled, since she wants to be completely out for the procedure. They’re deeply impacted and the dentist says they have to come out. She decided she’d rather do it sooner than later, so we’ll be doing that in the next few months–wherever we can find an oral surgeon that has a dedicated anesthesiologist that’s comfortable working with a patient post-heart transplant. Hmmm…that could be tricky. We also talked to Julianna (our social worker) and she suggested that we get an appointment for the neuro-psych testing we had also wanted to do before Sarah’s listing. She had told us that researchers have found some correlation with learning disabilities, developmental delay, and cognitive function issues in kids with congenital heart defects. Sarah seemed to “catch up” OK after each of her surgeries, but as she got sicker and sicker in her late teens, we could see that her reasoning and memory were genuinely affected. Julianna encouraged us to still have this testing done before she starts college, so she can have a better picture of how she learns best and what areas she might need more help in. Then, in turn, we (and the college) can give her the tools and help she needs to be successful after chronic illness, transplant, and complications/issues during recovery. So, it looks like we’ll be doing that in the next few months, too.

She also asked permission to go to Alaska. Dr. Everitt just laughed, looked at me and said, “Mom, can she go?” She’s so excited to go with Grandma Dixon, and they’ve already bought their plane tickets for nine days at the end of September. They talked about going on this trip to see my sister and her family way before transplant (after her high school graduation), but she never got “better enough” to go. Well, now she is not only better enough, she doesn’t have to have special letters to travel, oxygen on the plane, OR take extra care while she’s there.  I’m excited that she’ll have this opportunity to travel without her parents, and try her independence for more than just a few days. I’m super jealous, but so happy for her to have this experience.

July2014ClinicdayThe afternoon was filled with a visit with a couple of darling little boys who have been on the transplant list for more than 100 days and their incredible mommies. Sarah was sad that she couldn’t get close and we couldn’t go in and play (because we didn’t know if she was contagious or not), but it was a life-changing experience for me, being on the other end, and trying to offer hope and love to those walking a similar path. (I’m hoping to share their stories in more detail later, but I need to get permission first.) After the visits on the 3rd floor with them and a favorite nurse, we went to Zuppas Café for lunch. We had delicious bowls of soup, and Sarah had her first crème brûlée. (Kind of a deprived, isn’t she?) After lunch, a nice, young man named Zack took us on a tour of the LDS Business College and introduced her to some of the interior design students. Sarah was enraptured, and that led to her decision only days later to attend in January.

The next day, she had an MRI on her liver. We got a letter a week or so ago that said that her liver is cancer-free, and things look good. Always a relief to get those kind of letters.

So, things are going well for Miss Sarah. Her tummy is getting better, her liver is healthy, her heart is doing an incredible job, she’s studying for her written test to get her driver’s permit, going back to work (full-time) as soon as her tummy finally allows her that freedom, finishing her application to LDS Business College, and preparing for a trip to Alaska. Oh, and she has a couple of weird procedures/tests we need to have done in the next few months. Whew! She seems to be handling the whirlwind of change a little better than I expected. I think I’ll just hang onto her hand and try to enjoy the ride until it’s over. Oh, wait… this IS just the beginning, isn’t it? …Yeah, a great new beginning….

~Julia


“Now what?”

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Usually people grow up knowing what they want to be when they grow up. A doctor, a teacher, an actor, a singer, a princess…you get the idea. I was no exception. Thanks to my wonderful parents, I grew up with dreams and goals in mind. It wasn’t until the fall of 2011 that those dreams and goals died. They died because I was old enough to know what was going on with my heart and body and that I might not ever even get the chance to fulfill them. Well obviously, all of that changed one year, two months, and twenty days ago.

Rachel, my sister, has been getting ready to leave for school in a week. Many of my friends are almost graduated from their programs. Several friends are getting engaged, married, and having kids. I have had very mixed emotions about all of this exciting news. I am super happy for all of them but at the same time I don’t want them to move forward with their lives because mine isn’t anywhere close to where it “should be” yet. I figured because my life took a momentary pause that everyone else’s lives should do the same thing.  Oh boy, was I wrong! Life moved on without me. How dare it, right?!

With all of the changes and growing up that is going on around me, I too have made the scary decision to move forward. I had a few doctor appointments last weekend. After my clinic on Thursday, I took a campus tour. I have decided that I am going to be attending LDS Business College in Salt Lake! I want to study Interior Design. If you know me at all, you know that I really enjoy furniture, colors, fabrics and designing. They have a two year program that looks intense, stressful and challenging, but it is what I want to do. They have two different times I can start. In the fall (September) or in the winter (January). My original plan was to work this year and then start school next fall. After the tour and talking with several of the students, I felt like I couldn’t put it off. But I also knew that I wouldn’t be able to start in a month…..

I made the decision to aim at starting school in January of 2015. I decided to fast and pray about the decision I had made. Not to know if I had made a good choice (because I knew it was what I need to do next), but to let me know if I needed to stay in Pocatello longer than January. I didn’t feel anything that went against my plan, so I have started applying! I am freaking out but I am so excited!

I always made a joke out of it whenever someone asks me what I am doing or what I am going to do with my life. Before last week, the answer was always “oh you know, hang out, go to school, get married and have a happy family” but now my answer has changed and I can confidently say, “I am going to go to LDSBC in January to study Interior Design, hopefully meet my best friend who will also be the man of my dreams, get married to him and have a happy family!”

*Insert important testimony about Heavenly Fathers’ plan for me*

Have a wonderful week!!!!

 

 

 

 

Hahah! I’m just kidding. Don’t worry. I’m going to share my testimony!

I know that my Father loves me and wants me to be happy. I know that He has a plan for me. I know that we have agency for a reason. Agency is the ability to choose what we want and don’t want. I know that the main goal is the same no matter what path we take: Eternal Life. In my opinion, His plan isn’t just a straight line from point A to point B, but kind of more like a river or the freeway. There are many different twists, turns, and detours that we could possibly take in our journeys. We may go down one road that turns away from the goal but there are so many ways to get back on track. I know that if we are righteous and faithful, Heavenly Father will help guide us to where we need to be. I am so grateful to have His guidance and help in my life.


Incredibly Nice Things #3: Fundraiser

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DSC_0140I really should have written this post a long, long time ago. I was so overwhelmed with the feelings of love and gratitude, I didn’t know what to write. Then waiting for pictures from a friend became my excuse… and then, well…life happened, and the fundraiser ended up on my list of “incredibly nice things people did”. The community fundraiser was such a huge help during our journey that we created a special page for it. (Plus, there were way too many special pictures to put into one post!) You can click the “Fundraiser” tab at the top of the page, or this Fundraiser link will take you there. If you know of any amazing stories that happened behind the scenes, we would love for you to comment and share them. Miracles happen every day. Please take a few minutes to look through the pictures. See if you can feel the love in that room…like we did!

~Julia

P.S. There were so many people that were involved in this amazing event. I didn’t name any names, for fear of leaving a couple (hundred) out. You know who you are, and from the bottom of our hearts…we love and appreciate you.


Incredibly Nice Things #2: Deseret Book

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swindle-ofoneheartjosephThe second incredibly nice thing someone did that I wanted to write about was Sarah’s Deseret Book Gift. When I came home after Memorial Day (2013, when she was suffering so much with the ICU Psychosis, infection, and psychotic reaction to Levaquin), I went into Deseret Book at the mall. I wanted to get her a copy of her all-time-favorite painting by Liz Lemon Swindle, “Of One Heart: Joseph In Liberty Jail”. It has come to mean so much to her and given her much strength in the past, and I thought it might be a good birthday gift to help give her perspective through her recovery. (You can read about what this painting means to her in her own words, posted September 2012.) As I was sorting through all the prints, a nice smiling lady with a name tag that read “Debbie” came back and asked if she could help me. I told her about Sarah, her recent heart transplant and the hard time she was having lately, and that I was looking for that specific print to get her for her birthday. We couldn’t find one in stock, so she set me up on the website at the computer at the counter to search while she helped some other customers. We found just one, a 5×7 print, that could be ordered, but probably not in time for her birthday.

Throughout our conversation, Deb told me that her daughter had also spent a lot of time at Primary Children’s over the years including several brain surgeries. This daughter has since become a nurse and works at our favorite hospital. She told me she would like to buy the print for Sarah, and give it to her as a gift from a stranger that had walked a similar road. I, of course, objected, and told her she that was kind, but that it was not necessary. Deb looked at me in the eyes–actually straight through me–and told me that when her daughter spent so much time in the hospital, the love she felt from people around them (especially the strangers) brought so much strength. She had promised herself that anytime she could, she would do kind things for people who were walking that road and needed a little love. Of course, the tears flowed freely and that stranger, my newest friend, hugged me long and tight–right in the middle of the store. I thanked her and gave her my phone number so I could come pick it up when it came in.

20140707_122824About a week later, I got a call from Deb that they had worked some magic, the print was in, and she (and her manager, Chris) were having it framed and putting together a whole gift bag for Sarah for her birthday. She wanted to make sure it would be ready in time. I couldn’t believe what I was hearing. It was overwhelming that the love of strangers could fill up empty spots in my heart I didn’t even realize were there. It was an incredible surprise and gift, and I was excited for Steve to pick it up the next day and bring it to Salt Lake with him just in time for her birthday celebration.

When she opened the gift bag, she discovered not only the painting she loved so much, but a wooden bust (also of the Prophet Joseph Smith), a novel, a couple of smaller inspirational “talk” books, a journal, and some other treats and little things. (Since it’s been so long, we honestly can’t remember exactly what else was in there… probably a Utah truffle bar or some other treat, lip balm, maybe a pen….) It was so generous, so kind, and so thoughtful. I told Sarah the story about what had happened, and that the gift was from Deb and Chris at Deseret Book, and she was just about as amazed as I had been. It was another simple gesture that was such a huge strength for the Brown family.

I saw Debbie at Deseret Book again just before Easter, almost a year later. I reminded her about Sarah and thanked her again for gift that they had sent. I gave her the happy report about Sarah’s one year anniversary coming up in just a few days, and how well she was doing with her new heart. She hugged me hard again, and told me how very grateful she was to hear such wonderful news. This time both of our eyes were welling up with tears as she stood at the register and took care of my purchase. There are such wonderful people in this world, with good hearts so full of love. We feel very blessed to have “run into” some of them along the way throughout this incredible journey.

~Julia


Breaking News!

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Welp, so much for weekly posting! Ha! I will try to blog more though… I promise.

I do have exciting news to post.

  • I scheduled a dentist appointment on Monday. I usually need to be premedicated, so I called the transplant team to see what dose I should take. Michelle (one of the coordinators) called me back and said that since I am more than six months post-transplant I don’t need to be premedicated ever – unless there is a problem. One more step toward a “normal person’s” life! Yay!!!
  • I had a biopsy in the beginning of June. The docs told me to come back in two months. I called to make an appointment yesterday, but had to wait for orders. When Michelle called me back today, I asked her about a follow-up biopsy. She told me that I don’t need to have another biopsy until NEXT April! I do need to go in for clinic visits and echos. But if all looks well, no more biopsies!! Three cheers for me! Hip hip hooray! Hip hip hooray! Hip hip hooray!!!

"Woohoo" (gif) on establishing dominance over Pinterest. Conquering Earth, one social network at a time...

(Even Tom Hiddleston is happy for me! :D )


Incredibly Nice Things

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I’ve been keeping a little scrap piece of paper that says “Incredibly Nice Things People Did” so I wouldn’t forget to someday blog about the kind surprises we’ve had through this journey. I shared these four events with family members as they happened, but then somehow between the clinic reports they got lost and I never shared them with the world. They were little things in some people’s eyes, but huge for us, and I wanted to publicly thank and recognize the kind-hearted people who shared their love, and didn’t even know Sarah or our family.

Incredibly Nice Things People Did #1: A Good Luck Necklace

In the middle of January, a year and a half ago, Sarah was awaiting word of her listing for a heart transplant. An article hit the front page of the local newspaper that told her story, and a couple of days later, she was finally listed. Sometime that week, she received in the mail a very kind, anonymous letter and a beautiful handmade necklace that deeply touched our hearts. I hope the designer of this necklace doesn’t mind me sharing parts of her letter. She (I’m taking liberty here to assume that this gift was created and sent by a female….) said that the article in the paper quickly grabbed her attention and through tears and smiles, she realized how much Sarah has already been through and how strong she is. The author shared shared her own story about a surgery that completely changed her life. She was sustained by prayers of family and friends, and knew she was completely in God’s hands. She is grateful that God saved her life and allowed that experience to change who she was. The support she received had a huge impact on her life, knowing that complete strangers were praying for her. She added that she knew Sarah’s journey wouldn’t be an easy one, and that she would be continually praying for her during her waiting and recovery.

Then she explains her enclosed gift…

DSC_0068I designed a little necklace for you because simple words and symbolism tend to have a bigger impact than we realize…. I admire birds and their symbolic meaning of freedom. However, God has shown me that birds have a dynamic meaning to them. “Do not worry. Look at the birds, free and unfettered, not tied down to a job description, careless in the care of God. And you count far more to him than birds.” (Matthew 6:26 – The Message Version) A lion of course symbolizes many things including fierce, strength, courage, and brave. All of which you are, always remember that! Hope is more precious than anything in this world, so many people need it and yet so few hold on to it. Don’t ever give up on your hope Sarah. The lock and key–God is opening new doors for you, a new journey to embark on that will draw you closer to him. And after reading your blog…I simply included your favorites; pink and green. :)

I hope the love and gratitude with which the gift and that letter was received was somehow felt by this sweet individual. I hope she was able to feel it returned to her many times over as  she carefully and thoughtfully wrote that letter and created the beautiful necklace, and then waited quietly while Sarah received it. Being anonymous, there was no way we could even begin to thank her for such a special gift, and for the many many prayers she (and I’m sure her friends also) offered to God in Sarah’s behalf over the following months. But the story of that necklace doesn’t end there….

Sarah wore the necklace the first time just days after receiving it. And later that night, she got her first call and offer for a new heart. (You may remember, it turned out that we could not accept the heart, and then began her pre-transplant treatments to get her in the best shape possible for when the right heart did come.) She didn’t wear the necklace much after that, but it hung in her room to remind her that a stranger loved her and was praying for her. After moving into the hospital and up on the waiting list, I asked her one day why she never wore it anymore. She said she honestly was scared to, because she wasn’t sure she was ready yet for her new heart. We’re really not superstitious people, but she felt that it somehow could bring her her new heart, and wearing it would demonstrate that she was ready. She didn’t feel ready. Weeks passed, and once when I went home to gather a few more things for her, I saw the necklace hanging in her room. I packed it to hang it in her hospital room to keep reminding her of Heavenly Father’s love, her courage, opportunities ahead, and the love and prayers of so many strangers, friends, and loved ones. Only days after my return with the necklace, she received news that a perfect angel heart was ready for her. We all know it wasn’t really the necklace’s doing, but that it was all in God’s hands how and when things happened in Sarah’s journey. Still, it was pretty remarkable how symbolic that necklace really was in her life, throughout this journey, and what it has come to mean to her. We have lovingly nicknamed this necklace her “Good Luck” necklace, and she still wears it with gratitude, courage and honor. Thank you to someone who offered a part of their heart to a sweet stranger. It truly strengthened Sarah, and her parents.

~Julia


Doing the Happy Dance

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00a50f663379dc7cc7da3bd269be8e9bSarah had another biopsy today, the first one since med changes following her antibody-induced rejection showed up. She did really great, everything looked great at clinic, and we’ve been doing the happy dance all afternoon! Her biopsy results came back….SQUEAKY CLEAN!! No more rejection – of either kind! For the moment, there will be no changes to her treatment, and we don’t have to go back to transplant clinic for two months!! How’s that for enjoying this summer?! Feel free to join us in our happy dance….

A couple of weeks ago, we also went to the adult liver clinic at the University Hospital. She met with the nurse practitioner we worked with when they were evaluating for liver transplant almost two years ago. (Wow…can’t belive it’s been that long….) Anyway, she’s really nice, and we like her a lot. She asked what Sarah had been up to since she saw her last and she drawled, “Well…, I got a new heart…” Karen was so excited for her, and so happy to see how great she looked. It was kind of a fun reunion. She looked over her labs and history post-heart-transplant for a while, and then examined her. She said sometimes a major surgery like she had will cause problems with the liver, and with hers already sick, she expected to see some evidence of the trauma. However, there really weren’t any problems during her recovery with her liver, and no signs of stress on the liver, either. She told us that was a sign of a pretty resilient organ, to be able to bounce back after such a major surgery so well. It is her opinion that with her new heart, not only has the damage to her liver stopped, it is very likely that her liver will actually begin to heal. She said it might take a long time to see a change, but she gave us a lot of hope that things will actually look better in the years to come.

This is just so completely amazing. I’m so very grateful for the incredible people who are taking such good care of Sarah. I’m glad I just trusted them and didn’t worry about the rejection this time, like I did before. There was a lot more peace in my life, and my heart, just letting go and turning it over to Heavenly Father and the very capable angels in lab coats that take care of her. I really just don’t know how to contain my relief and happiness with another squeaky clean biopsy. How grateful I am that this rejection roller coaster has only been a six-month ride. A few of our transplant friends have fought it over and over, for such a long time…  I think I’ll just keep doing my happy dance, and spend some extra time on my knees tonight thanking Heavenly Father for blessing Sarah’s angel heart…and her life…yet again. Just another bump and a miracle… God is good!

~ Julia


New promises…

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d9ecd75719d54f127180f51a76137f5eHappy Thursday everyo – I’m terribly sorry. It is in fact Thorsday, not Thursday. I apologize. :P Okay, so you all know that my mom is amazing, wonderful, and an overachiever. So knowing who she is, it’s obvious that she is the one that always updates the blog. But now that the whole transplant/recovery is pretty much over, there haven’t been daily updates on here. I was talking to Mom the other day and I decided that I need to make a more regular appearance. I was a little concerned about what I would blog about since usually there isn’t any real new news. She said that this blog is about my “second chance” at life. Not just the procedure, but the journey – including my personality, quirks (that may or may not be new), how I have grown and changed, and what I am doing with my life now. As I (personally) post on here, you will get to know me more and I hope that I am not so weird and crazy that you all run away scared. Ehehe. I want to post something on here at least once a week. At least, that’s the plan… Next time, I will kind of introduce myself…again. (I have already done it, but it was before my transplant and before I was comfortable with who I am and my personality.)

I hope that you will enjoy getting to know me and my over all ultimate awesome weirdness and nerdyness!

– Sarah