Back In The Saddle Again

We’re back in Seattle again. Every time I say that I hear the song “Back in the saddle again”. Ha ha! I actually do feel we are back in the saddle again. Ashtyn and I feel emotionally and spiritually renewed. We feel more courage, purpose, and trust in our Heavenly Father’s plan. I can’t put a finger on exactly why this added strength is being felt but I’m extremely grateful for it. We were home five days and had some great experiences. There weren’t any big parties or gatherings but rather our time was spent more simply. The week included going to Ethan’s basketball game, being able to talk to our bishop and received priesthood blessings, Sunday extended family dinner, dropped Ethan off at Camp Hobe; an event we were so glad to not miss out on. We had an evening at the pool with my parents, siblings, friend Brittany, Jason, Natalie, and Brad. I went to Primary Children’s Hospital to see my friend Heather and her son Clint who got a BMT in September. Ashtyn took an English Literature test and passed off one of her packets. I got Morgan set up with her first debit card. Our time home seemed like a typical summer week doing what we would have if Ashtyn were receiving chemotherapy in Salt Lake City. I’m grateful for the chance we had to be home and for all the people I was able to chit chat with. Originally I didn’t want to go home and had no expectations. By the end of the week we both felt grounded and strengthened after the highly emotional and volatile past four months. Once settled back in Seattle my friend Holly asked, “How are Ashtyn’s spirits?” The only way I could describe it was, “On point.” One week ago I asked if you would pray for Ashtyn to stay infection free while home, that her nerve pain would stay under control, and that I would smile with relief when she returned to Seattle healthy. She’s healthy, nerve pain is bearable, and we’re relieved and smiling.

We Are All In This Together

The delightful Millie Flamm was the first child with cancer who gave Ashtyn hope. At the end of January 2013, Millie was in the hospital trying to get cancer free at the same time Ashtyn was in the hospital completely shocked and terrified to hear she too had cancer. Back in those days immunocompromised patients were strictly isolated to their hospital rooms. From down the hall, Millie relayed a message to Ashtyn through her dad Brady. "Dad, I really wish she didn't get cancer.  Please tell her that even though it's really bad, a lot of good things happen, so she shouldn't be too sad." Brady's message to me was, "Be prepared to be amazed by your daughter's strength, your own strength, and by how many people love you." Those words have proven true time and time again. Millie passed away 4 1/2 months later on June 18th 2013 while Ashtyn was in the middle of her first bone marrow transplant. Since then we have continued to be inspired by how Millie always looked on the bright side of things. She took little thought for herself and instead focused her attention on brightening the lives of everyone else around her. Each year in June, Millie’s Princess Foundation hosts a fundraiser run where 100% of the money raised helps one Princess and one Prince who are currently fighting cancer. This year they are raising money for Millie Visser, a bundle of joy who is fighting cancer that causes tumors in her lower spine. She is such a tough, funny, confident, and happy child. Ashtyn and Millie met over a year ago when they both were inpatient and the connection has been there ever since. She is truly a miracle baby who is destined to astound the world while putting a smile on every face she meets. If you can, stop by at this event. It’s a chance to not only raise money for two cancer fighting kids but also to support and cheer on a community of warrior children.

Families Are Forever

First picture: That beautiful girl on the right lost her mom on May 28th from a long battle with breast cancer. Sydney has been a close friend of Ashtyn's since elementary school and her mom Laura has been a source of love and support for as long as Ash has known her. We were home in Salt Lake City the week Laura died and are inspired by Sydney's faith, realness, optimism, and perspective. She knows with her mom gone, there will be a hole that will never fill and a heartbreak that will never heal. This remarkable girl also knows that life will still be wonderful and that joyful times are still ahead. She has faith that her mom will continue to stand nearby supporting her though whatever life brings. We love Sydney and are so grateful for her example of faith and love. No doubt her mom is extremely proud of her. 

Second picture: That funny, huge hearted 15 year old boy on the left died June 12th from a long fight with medullablastoma, a form of brain cancer. My kids met and became friends with Kaleb and his siblings a few years ago at Camp Hobe, a summer camp for cancer patients and siblings. They too were in Seattle for cancer treatment. We were at the Ronald McDonald House together when they found out treatment was no longer working so they moved back home to Utah. If I had a picture of his mom and dad, you would see parents with the deepest love in their soul and dedication in their heart for their children, eyes full of determination and courage, and sincere smiles focusing on the good. Ashtyn and I are inspired by the family's bond to one another, their perspective of what matters most, and their ability to smile, joke, and laugh through some really hard times. We love Kaleb, his dad and mom Brian and Tamra, and his remarkable siblings Alec, Jaron, and McKenna. 

Please pray by name for our dear friends, that they will feel loved and their hearts will be strengthen with a portion of comfort and peace during this time.

A New Chapter Is Starting

Ashtyn and I have been home for three days with two more days to go before heading back to Seattle. It is known that I didn’t want to come home this week. Being in the middle of a chemotherapy round with a girl who tends to get hospitalized, I wanted to play it safe and stay in Seattle, however I have to allow Ashtyn to take the lead in her life. So far things are going well. I personally have felt uneasy at times. Being on a clinical study, the last thing we want is for her to get hospitalized in Salt Lake City and not be able to get chemotherapy in Seattle on Friday. Neuropathy is ever present with some moments that are much more painful than others. I’m getting more and more confident that the nerve pain will stay manageable with the medications we have. I’ve also been watching her temperature, which is something she had a problem with last chemo round. On Sunday her temperature seemed to be trending upwards which really freaked me out. I have gained some comfort realizing her temperature normally fluctuates but I've never taken her temperature often enough to notice. I am becoming more at ease but won’t feel completely calm until she is back in Seattle. Even though she hasn’t felt as physically well as she would like, Ashtyn has really appreciated her time at home. This particular visit home has really renewed both our spirits. It’s as if the emotional and physical challenges of the past three months are behind us and a new chapter is starting. A couple weeks ago I felt deflated, defeated, and frustrated with God. Those feelings are gone. I’m now really excited to see what He has in store. As God does His part and we do ours, I still believe we are going to be amazed. A couple weeks ago Ashtyn felt she was missing out on experiences and that her time was being wasted. She’s now confident there is tremendous purpose in what she is doing and there’s much to get done. I’m really grateful Ashtyn pushed to go home. Please pray she will remain healthy and safe to receive chemotherapy in Seattle on Friday.

Not Much To Complain About

I don't have any Last Day Of School pictures this year. I do have this picture of Morgan's grades after finishing up her freshman year of high school. I have no idea how she got such good grades. I give our 2017-2018 school year the award for being the Most Unconventional Year Ever! The school year started with Ashtyn still recovering from her second bone marrow transplant which she received six months prior. She got a concussion at school, thought cancer was back, and had tests in October that showed no leukemia. I had been feeling a push and urgency to spend time together traveling so my kids missed a lot of school to go on several family vacations. Chandler received his mission call to Florida and found out one week before leaving that Ashtyn's cancer was back. He left on his mission, 1 1/2 weeks later Ashtyn and I left to Seattle, and Morgan and Ethan stayed home where they flew up several times to visit us. Ashtyn had the LLS campaign, student body officer elections, and is now catching up on high school credits while kicking cancers butt. Morgan did well in school, loved seminary, is involved in cheer, and got her first summer job. Ethan continues to play hockey and is a kid who loves playing with friends and conquering Fortnite. Chandler emails me stuff like, "I love you and I am so grateful for you as a mother. You have gotten me to where I am today and I am so grateful for that." I probably don't complain much because I simply don't have much to complain about. I happen to love my unconventional life and have a lot to be grateful for.

Take Therefore No Thought For The Morrow

I don't know what to say about my life. It's crazy! It's been crazy for awhile now. I'm totally learning how to let go of fear and live with trust. Ashtyn is on Day 9 of her 28 day chemotherapy round. At this point she has to go to Seattle Children's Hospital every Friday for a doctors check up and chemotherapy. Other than that, she can stay at the Ronald McDonald House as long as she remains healthy and well. Two months ago she did the same chemotherapy regimen. By Day 11 she was in the hospital with severe nerve pain. By Day 14 she was in the intensive care unit with possible blood culture negative sepsis and continued having complications until Day 34 when she finally was able to leave the hospital. A few days ago she started feeling nerve pain. She was started on a medication called Gabapentin a few weeks ago to be on top of nerve pain in case it came back. We are hoping, because of that, neuropathy doesn't escalate. Another thing that's uncomfortable for her is the 20 pound weight gain steroids caused. Though the weight will eventually come off, it's miserable for her. Other than that, things are going well so far. She got chemotherapy yesterday, stopped steroids for one week, and has nothing on her hospital plate until another dose of chemotherapy this Friday. Naturally she asked if she could go home. I have to vouch for the healthcare team. Her oncologists in Seattle would prefer if she lived in a bubble. I feel the same, but of course that's not realistic. Ashtyn has to live life. We want her to have the best possible quality of life while going through this cancer fight. She also should be able to make her own decisions whenever possible. Putting aside nervous feelings about a bunch of "what-ifs", the decision was made to allow her to fly back to Salt Lake City for five days. Ashtyn knows how unpredictable cancer life is. She lives in the moment and jumps at any opportunity to go home because who knows when the next chance will be. Please pray that 1. she will stay infection and illness free while home. 2. nerve pain will stay under control. 3. her doctor and I will smile with relief when she returns to Seattle healthy for her Friday chemotherapy.

Boring Is Good

Ashtyn is on day 6 out of 22 of this current chemotherapy round. She is still participating in a clinical trial, drinking the study drug Venetoclax everyday in addition to receiving the same three chemotherapy drugs given in April. She is doing well and currently outpatient at the Ronald McDonald House. Each day she swallows 32 pills and I give her a one hour infusion medication through her central line, most of which are suppose to help prevent possible chemo side effects. In all the years of fighting cancer, I always hope for a boring chemotherapy round. So far her body is tolerating the chemotherapy well and things are boring. That gives us a lot to be grateful for. It also gives us a lot of time to feel isolated and lonely. Today I read many of the cards Ashtyn has received while being in Seattle. I regret not writing down the packages and cards she has been given so I can write thank you notes. We are extremely grateful for the generous gifts and loving cards. If you have sent something, please know it did not go unnoticed and our gratitude is sincere. We are thankful everyday to know each of you are standing on the side lines cheering us on. It makes us not feel so alone. Though we don't know where the finish line is, Ashtyn is fighting hard and determined to get there.  Please pray she will remain healthy, boring, and be cancer free by the end of June.