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


Heart to Heart

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See all these women? Many of them are my friends. And many of them are strangers. A lot of them shed tears and prayed their hearts out for our sweet Sarah. Some of them have sweet angels they love in Heaven. Still others of them have been through horrific experiences I can’t even begin to imagine. All of them have felt heartache and pain as they’ve watched their children suffer, or suffered themselves. …And ALL of them have been affected by someone’s very special heart.

These are just some of the courageous and strong women of Intermountain Healing Hearts, a support group we joined while Sarah was waiting for her angel heart. We had the opportunity to meet many of our new friends at the annual Heart to Heart Luncheon they held yesterday. It was amazing. So fun to finally meet some of our cheerleaders, our chocolate suppliers, our care package and hug deliverers. And we feel really blessed to be a part of a sisterhood like this. The feeling in the room was true compassion, charity, and love. Strangers, but friends through the fires and storms that have brought us together. It was kind of a lonely path we walked when Sarah was small. We felt like the only ones in the world with a special baby like her. (We knew it wasn’t true, but it really did feel like that.) Support groups like this can sometimes bog you down as you help carry others’ heartache and pain, but once you find the right balance in being involved, helping, praying and keeping your focus where it belongs, I believe it’s a blessing.

20140517_131735aThe room was beautiful, the food was great, the little goodie bags we got were wonderful—complete with the group picture (printed for everyone during the luncheon), one of Hilary Weeks’ billionclicks.org “clickers” to count our positive thoughts, a beautiful hand-made charm bracelet and…yes, a full-sized Utah Truffle bar. (We’ve all gotten hooked on the little ones at the check-out line in the Primary Children’s cafeteria.) They showed a slide show of the moms/kids that were in attendance and included their diagnosis. It was sobering to see how many beautiful children and families are affected by heart defects and anomalies. And that was just a sampling of the ones that belong to this group! After the slide show, one of my all-favorite Christian singer/song-writers, Hilary Weeks spoke to us about our trials, the personal attention and grace of a loving Heavenly Father and Savior, and the power of positive thinking. She sang some of my favorite songs, and ended by singing along with the video of “Beautiful Heartbreak”. It was perfect.

When it was over, we visited with some of our friends, collected long-awaited hugs, and met new people that are on similar paths as Sarah’s. We were introduced to one mom in particular, whose 17 year-old daughter was recently placed on the transplant list. As we talked, we discovered how many heart defects and surgeries they had in common, and how very similar their teenage lives were, including liver damage and PLE. It felt so good to be able to offer support and love, and I hope they will reach out and lean on us through their journey. The best part about talking to this young woman’s mom was that she could actually SEE (by meeting Sarah) that her daughter’s life can be so much better than it is now. I pray we can help her though her journey, along with the many other mommies we met who have children with HLHS, fontans, and PLE. I would love to be able to be a strength to them, and to offer my empathy and love and show them there is much hope (especially when it doesn’t feel like it).

20140517_142106After we left, as we were walking down the hall, we crossed paths with Hilary and her sweet daughter. I told her I was so glad to have run into her again because I wanted to tell her that she’s one of my favorites, and that her song, “He’ll Carry You” had a great impact on my life during one of the scariest periods of Sarah’s recovery. I heard it on my Hilary Weeks Pandora station when I was getting ready for work one morning. I looked it up on Youtube and played it over and over and over. The tears streamed down my face and I felt as if I was wrapped up in the huge, warm embrace of my Savior. Everything she wrote in that song is really is true. He does know, and did lift my load, and carried me.

I love how sometimes, that love happens when you hear a true and beautiful song in your room when you’re getting ready for work, and sometimes it happens when you hug a friend that’s a stranger that prayed daily for your daughter’s recovery. That’s charity…Christ’s love in its purest form, it’s warm like a blanket, and it’s amazing.

~Julia


Good news from weeks ago

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I realized that I never posted  our good news from more than two weeks ago! So sorry to have forgotten to update. We told a few people, and it just slipped my mind after that…

Elizabeth, the transplant nurse practitioner called Sarah at the beginning of May to let her know that her antibody-induced rejection is NOT caused by Donor Specific Antibodies (DSAs). These are antibodies that her body could make (and did in the beginning) to specifically attack her angel heart. I’ve deduced, using my limited knowledge and a little logic, that the antibodies that have induced the mild rejection then must be just normal antibodies in her immune system. They fix this with a simple increase of one of her immuno-suppressants, and trying to find that perfect balance again. We are so happy that she no longer requires the five other IVIG treatments, and are hoping that her biopsy in June will show a change for the better. We also discovered in her antibody panel that she does not have immunity to a few things and needs to get a few of her immunizations re-done. She’s feeling very sympathetic towards all the babies and sweet kindergarteners getting shots right now. Sure stinks, but a small price to pay to keep her angel heart and body healthy!

So grateful for modern medicine, technology, and all these amazing people in charge of her care. We are so blessed to have such an incredible team of careful and caring doctors, nurses, pharmacists, techs, and others in her medical team to help her in this journey. Things would be so different (and scary) without all of them!

~Julia


First Heart Birthday

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On Monday, April 21st, we celebrated Sarah’s first heart birthday! It’s incredible that it’s really been a whole year since she received her new heart.

Early in the afternoon, we had a visit from a news reporter that did a story about Sarah’s celebration. It was featured on the news that night, right during her party. We had to wait to watch it online later, but we were very happy with the story. She highlighted the journey, the importance of organ donation, the celebration, and our invitation to “pay it forward” for Sarah’s anonymous donor. It was good for me to remember emotions and events as I told the story again, to someone who hadn’t heard it before. Talking about Sarah’s donor’s family brought strong feelings of gratitude back to the surface again.

Watch the news clip… Sarah Brown Celebrates Her Second Chance at Life

Our celebration was small and special with our family, Grandma and Grandpa Dixon, and some special friends. We appreciate everyone who came and celebrated with us, and those who celebrated on their own by “paying it forward for Sarah” that day, or during the week. We received many messages and a few phone calls congratulating her and wishing us a happy celebration. It’s so wonderful to still be in people’s thoughts and prayers. A whole year later, we still feel so much love and support from family, friends, and even strangers all over the world. Thank you to all of you.

The balloon release was definitely the highlight of the evening. (Although, we did enjoy all of Sarah’s favorite cookies, too!) After we passed out the balloons, Steve shared some feelings of gratitude and sweet words on behalf of our family. Then, after the countdown, we sent the balloons to heaven for Sarah’s Heart Angel (as Rachel so poignantly put it). It was so exciting, and fun for all of us. After everyone left, we completed our pay it forward gift. (Sorry, I can’t post what we did, because we want it to stay anonymous. But, the person who helped us was grateful and assured us that the gift would be very appreciated.) I think we all agreed, it was a perfect ending to a really wonderful day.

~ Julia

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Annual Biopsy

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Sarah’s annual biopsy and heart cath was on Friday morning, not quite as early as usual. (We were grateful for that this time. Reporting at the hospital at 7:30 in the morning is so much kinder than 6:00.) It was absolutely amazing to witness how much my daughter has changed through this last year. She walks through the hospital like she kinda owns the place, without so much as a wince She requested her j-tip prepped IV with the blood draw (so she doesn’t have to be poked twice) and even tells them where to place it. She told the anesthesiologist exactly what she wanted and needed to get through it. She laughed and joked with the nurses and techs in the cath lab. And she hugged me goodbye with a smile on her face. She’s even so spoiled and assertive that she got to have her favorite doctor perform the procedure. (The scheduler called us three times to reschedule so she could have the doctor she loves most). And in that attitude, everything went well, just as she expected. Her pressures are great, her coronary arteries are clear and beautifully healthy, her stent is still in great shape and the blood flow and pressures are balanced, and all looked perfect. She had to lie flat for 4 hours after the procedure, but that wasn’t too big of a deal since she was pretty sleepy with the anesthesia. She received some IV mag because her magnesium levels were reading unusually low. That kept us in recovery a little longer, but they did the echo right there, too, to save us some time.

We got the biopsy results back while we were waiting to go home, and plans had to be changed. The absolutely wonderful news is that her cellular rejection is all “cleaned up”. It’s down to a 1 now (which means none), and just like they said it would, it got better. But…now Sarah has some antibody-induced rejection (level 3, which is still considered mild), that will require different treatment than the other kind. They kept her overnight to start the six monthly IVIG treatments she will need to help calm her antibodies down and “trick” them into thinking there are enough of the right kinds already, and all is well. The IVIG is a blood product taken from a pool of over 1,000 donors. It’s just a dose of generic antibodies that the “mean” ones then glom onto, and then they don’t attack her transplanted organ anymore. She had a few crazy antibodies show up just prior to transplant, and then after, there were some more “donor-specific” antibodies that showed up. After her IVIG treatments, they disappeared. I have every reason to believe that will happen again. 86f894ed5c821ed5eda1278de35ab725They’re talking about setting up the next five infusions closer to home so we don’t have to go to Utah for them, which would be really nice. I don’t know for sure when they’ll biopsy again, how often we’ll be checking things out, or how long it will actually take for the rejection to get better. But, with this kind, her meds stay basically the same, and they told her to go on living her life just like she was—active and happy, and not to worry too much about it. So…we won’t.

~Julia