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.

Onward And Upward

Ashtyn and I are back in Seattle for another month of chemotherapy. Five days ago when leaving Seattle Ashtyn prayed she would have the energy at home to do as much as possible. I saw first hand that her prayer was answered. I won't go into specifics of everything she did but it included going to church, school, seminary, shopping, parties, and get-together's. From morning until late night, for 4 1/2 days, she socialized and was on the go. It was a wonderful blessing to be home. It was also a time of mourning. I'm genuinely happy but also feel deep sadness. I'm extremely grateful and also feel completely gypped. Ashtyn is missing out on high school experiences, seminary, dances, activities, and end of year parties which she has looked forward to from a young age. Even though I personally didn't like high school, it's an experience that means a lot to her and no one can give junior and senior year back. Morgan and Ethan are missing out on daily experiences they can't get back either. I'm missing out too. I can't be there for Morgan and Ethan. On Ethan's last day of school, I can't line up outside the building with other parents to cheer and clap for all the 5th graders as they walk out of elementary school for the last time. It's a once in a lifetime experience and I won't be there. One of my favorite memories this past week was sitting on our front door bench with Ethan in the morning before he walked to the bus and made sure I was sitting on the bench for him when he got home. Going into middle school, he won't be taking the bus anymore. I can't list all the daily experiences we miss out on and won't get back because they're once in a lifetime. In the grand scheme of things, it's all the small daily interactions with family, friends, neighbors, and strangers that matter. Those moments are what make up life. My friend Amanda, who has a daughter fighting cancer too, said "We will look back and remember how hard and awful all of this was but we'll also remember the tender mercies and the blessings." Of course this is true. We have had interactions in Seattle and met lifelong friends I will forever be grateful for. 

Please pray that Ashtyn will go into remission safely in June so we can get back home for good.

A Chance To Go Home

It has been 12 days since we found out Ashtyn still has cancer requiring another month of chemotherapy. Her healthcare team has been working on getting our Select Med insurance company to approve Daratumumab. The drug is known to bind to a protein on some cell surfaces called CD38 which then causes cell death.  It is difficult to get the drug approved for Ashtyn because Daratumumab is not FDA approved for leukemia even though her cancer cells express CD38. The drug was denied and the decision is now being appealed. The thing with cancer is we don't have a lot of time to sit and wait without treatment before leukemia cells blast off, taking over her entire blood cell production. The decision was made to start chemotherapy on Thursday May 31st using the same regimen she had in April which includes Venetoclax and three chemotherapy drugs: Vincristine, Peg Asparaginase, and Dexamethasone. The hope is that she will stay healthy throughout the 28 day course, and be able to stay as an outpatient.  While fighting cancer she wants to start putting a lot of hours into online schooling and catch up on three years of high school which would enable her to walk at the graduation ceremony with her Brighton graduating class of 2019. Of course the ultimate hope is that she will come out of the June chemo round with a cancer free result and maintain 0.00% leukemia cells for a month while healthy cells grow. We found out Friday that chemotherapy won’t begin until Thursday.  With nothing to do for six days, I asked Ashtyn if she wanted to go home. Before we even left the doctor’s office, flights were purchased to go home Saturday. We are spending Memorial Day weekend at home and will return to Seattle Thursday morning to start chemotherapy Thursday afternoon.

Some Needed Energy And Distraction

I'm learning that you can "feel joy even while having a bad day, a bad week, or even a bad year" and you can be grateful even when you aren't pleased with the circumstances. Did you know Ashtyn and I don't generally get out much? We tend to have a constant underlayer of stress, sadness, and worry that is exhausting. Everyday we try to lay low and keep life as simple as possible to not add any additional turbulence. Even when watching TV or movies we avoid anything sad, intense, or suspenseful. Our expectations of each day are minimal other than doing medical things that have to be done. Typically we don't make plans more than a few hours ahead and live a half-day at a time. One consistent thing is that we feel gratitude for the good that surrounds us. Another thing that's consistent is, this cancer fight is straight-up hard. My brother, sister-in-law, three nieces, mom, dad, Morgan, and Ethan visited us over the past six days. We saw some Seattle sights including Carkeek Beach, Discovery Park, Woodland Park Zoo, Golden Gardens Park, the Pier, took a ferry to Bainbridge Island, Space needle Park and International Fountain, and Snoqualmie Falls. I'm grateful to have had family in town to get us out of our Ronald McDonald House room providing distraction, motivation, and energy while we wait to find out if insurance will approve Daratumumab. Ashtyn's favorite thing about their time here: "All of it. I just miss them and it was a good distraction." Morgan "liked hanging out in the room with you guys just watching movies and doing stuff we would’ve done at home." Ethan's favorite thing was, "Being with you guys and hanging out with the family."

Daratumumab has been denied and is currently under appeal. Please pray that insurance will soon approve this drug for Ashtyn.