Hello everyone! Tristyn is still doing really well, all things considered. The side affects of the GVH treatment are no fun, but she continues to remain positive and make the most of every day. They are slowly tapering her off of the prednisone and hopefully this will be behind us in the next few months.
We wanted to dedicate this post to focusing on the positive. There is so much negativity going on in the world right now. It is difficult to focus on what is good when it seems as though our whole world is falling apart. We invite you to watch this video put out by John Krasinski and take a moment today to focus on the good things that are going on in your life. There is always good to be found if you are willing to look for it.
Focus on positivity, keep hope alive, and find joy in the journey!
Hello friends and family. We just wanted to give you all an update on a little bump in the road with Tristyn’s recovery. Don’t worry, it is NOT cancer! Tristyn has been diagnosed with chronic graft vs host disease (GVH). This is a condition where her new immune system starts attacking her own body. In this case, she has GVH in her arms and her mouth. She has sores in her mouth and the muscles in her arms are very tight and sore. The doctors say that if left untreated, she could lose mobility in her arms. The doctors want to put her on a powerful steroid drug known as prednisone to treat this. Some of the side affects of this drug will be extreme fatigue, major mood swings, and significant weight gain. They expect her to be on this drug for 6 months.
We are trying to stay positive, though it can be difficult at times. We know that things could be worse, but we are just tired of Tristyn having to go through so much pain and suffering. The poor girl deserves a break! Our hearts go out to all those who are undergoing similar treatments or who are battling cancer at this time. It is not easy, but if we stay close to those we love and try to support one another, we can find joy in the journey.
We would like to say thank you to everyone for all the love and support you have shown us over the years. We ask that you please include Tristyn in your prayers one more time.
This new year celebration is very bitter-sweet for us. We are saying goodbye to one of the best years of our lives, but we are excited and hopeful for greater things to come!
This past year started off with a certain type of anxiety that was all too familiar to us. The stress of finding out the results of Tristyn’s bone marrow transplant was difficult to bear. We had received bad news so many times before. “Hope for the best, but expect the worst” had become a way of life for us.
We are so grateful to say that from that time until now, life seems to be moving in much more positive direction! We still have our struggles and our ups and downs, like any family, but we are finally able to move forward and try to create the life and the family that we always hoped for! Some of the highlights that we have experienced this year include:
Receiving the news that Tristyn was in remission for the first time in two years.
Celebrating that news with a wonderful trip to Florida.
Taking our daughter to Disney Land for the first time.
Purchasing our first home.
Celebrating Tristyn’s remission with both our families on our first ever trip to Hawaii!
Tristyn got her 1 year scan and it came back clear!
Getting to experience the holiday season with our little girl for the first time without cancer.
We know that we are very blessed and feel extremely fortunate to have had the amazing year we have had. Not many families get to experience and do the things that we were able to do this year. Our hearts go out to any families who may be battling cancer or other tribulations at this time. May 2020 bring better days to come and may you always…
Find Joy in the Journey!
Thank you to everyone who showed us love and support throughout this wonderful year. We could not have done it without you.
Goodbye 2019! Hello 2020! We thank God for how He has blessed us this past year! Thank you for remission, thank you for wonderful memories made, and thank you for providing us with an enduring hope that carries us through every single day.
If you hadn’t heard the good news yet, here it is! Tristyn recently met with her team up at LDS hospital and they informed her that she will not need to be re-scanned in three months. They said that the tiny light that showed up on her last scan could have been anything and that waiting around for another scan would just be unnecessary torture at this point. They are very pleased with the results of Tristyn’s last scan and said that the only reason that Tristyn would ever need a scan in the future is if something peculiar showed up in her blood work.
Tristyn will continue to go in for regular checkups as the doctor’s work to taper her off of her post transplant medications. She will also continue to have blood work done so the doctor’s can keep an eye on how everything is going with her recovery and with her remission. These minor check ups are nothing compared to the constant medical attention Tristyn has had to endure in the past.
We are so grateful to be at this stage in the recovery process and to have everything going so well! The next steps will be to get Tristyn completely off all medications and to have all of her child vaccinations redone over time. We are finally feeling like we have found our new normal and it is great! Words cannot describe how grateful we are for Tristyn’s remission and the numerous blessing that have come with it.
This past week was Tristyn’s first pet scan since receiving the news that she was in remission back in February. This month marks one year since Tristyn entered the hospital for her bone marrow transplant. We are pleased to announce that the results from this scan are MOSTLY good! They said that there are no real significant changes since her last scan! The reason we use the word “mostly” is because there was one small little flicker of light that the doctor’s are unsure about. The way a pet scan works is it causes the cancer in your body to light up on the scan, however, it can also cause other things to light up as well like heightened activity in the kidneys, for example. In this case, there is a small light showing up near Tristyn’s groin that the doctor’s are unsure about. They don’t think it is cancer. They pointed out that it could have been caused by a number of other situations and that her cancer has never shown up in that area of her body before. They have decided that the best thing to do is to have Tristyn re-scanned in 3 months, just to be safe and to make sure that this peculiar lit up region near her groin does not change during that time.
Despite the news not being “perfect,” we are very optimistic and hopeful that Tristyn’s Hodgkin’s Lymphoma is behind us. It has been a long journey, and we are so grateful to continue to move forward with our lives and make the most out of every day that we have been blessed with. Thank you all so much for the love, prayers, and support. We will keep you posted on Tristyn’s recovery!
When Tristyn was first diagnosed with cancer, some good friends of her family approached her parents and said, “when Tristyn is finished with this whole cancer thing, we want you all to go stay in our vacation home in Hawaii.” This last week we were finally able to accept this generous gift and stay in their home in Kauai. The trip was absolutely incredible. We made memories that will last us a life time and experienced a sense of healing as we celebrated Tristyn’s remission as a family. We are so grateful to this family and their generosity and can not thank them enough.
Here is a break down of our trip!
The home that was generously gifted to us for the week was located up in the hills of Kapaa. The views were amazing!
Scarlett loved being naked, playing in the rain, and eating the fresh fruit from the yard.
This was our favorite beach for playing in the waves! The waves were awesome and the scenery was beautiful! We spent a lot of our time here.
Shopping in Kapaa
Haena Hike to Hanakapiai Beach
This hike was NOT easy! But it was beautiful!
If you don’t want to do the insanely long and treacherous hike to Hanakapiai, then try this gorgeous beach just before the trail head!
Up the mountain…
THE BEACH! Hanakapiai was hands down the most unbelievable beach we have ever been to. The price you pay from the hike is absolutely worth it for the the paradise you arrive at in the end!
Cool Roadside Lookout in Princeville
Na Pali Coast
This catamaran ride along the Na Pali Coast was definitely one of our favorite highlights. These locations on the island are only accessible by boat and they are out of this world!
They call this spot “The Grand Canyon of the Pacific.” It was very grand!
We don’t have a lot of pictures of this beach because we were snorkeling most of the time, but the snorkeling was amazing! (sorry we forgot the gopro)
This is the road to Poipu. Looks more like the road to Narnia.
Beautiful beach with a cool inlet and a rope swing!
This spot was another one of our favorite places on the island. The clear blue water splashing up against the black rocks was like something out of a movie. In addition to the beautiful scenery, the place was loaded with sea turtles!
Short hike leading to the bath.
Bath #1 with waterfall.
Bath #2, aka “sea turtle bay”, aka “one of the coolest things we have ever experienced!”
Queens Bath & other amazing natural pools.
The island is covered with ancient abandoned ruins! Pretty cool!
This beach was really cool and especially good for kids! They have a large section of the ocean closed off by a man made rock formation. This makes for an awesome little pool for the kids as well as some great snorkeling! We saw a barracuda!
Hawaii exceeded all of our expectations. We never would have thought that this trip would be so different from anything we had ever experienced. We are so grateful to the family that let us stay in their home. Thank you so so much! We will cherish these memories for the rest of our lives!
We had quite the eventful July! Being swamped with moving, vacations, and job changes made it difficult to post consistently. Here is a review of our exciting month!
Good Food and Good People
We bought our first home!
We feel truly blessed to finally get into our first home! We have received so much financial help from so many people to help keep us on top of our medical bills. Thank you so much to everyone who has supported us. You made our dream a reality!
Moving out of the basement apartment!
Home Sweet Home!
Yes, this happened…. It was deleted shortly thereafter because of the Russians spies!
As you can see, July was pretty crazy! It was stressful at times, but mostly, it was a blast! The term “work hard, play hard” definitely sums it up. This summer is flying by but we can’t wait to see what the rest of the season will bring!