Cancer Impacts Siblings Too

During the months and years of fighting cancer, the life of each of my kids has been greatly affected. Through it all, I have never felt a negative vibe from any of them. I find it interesting that the feelings of positivity and gratitude are always there even during moments of stress, sadness, and disappointment. When unpleasant emotions come, I’m grateful they don’t linger too long before fading away where peace is felt again. 

Yesterday Ashtyn bawled several times throughout the day. “I don’t think anyone wants to go home as badly as I want to.” In the afternoon I got a text from Ethan. “I miss you.” “I’m at the point where I’m done with this.” Ashtyn cried again, “I feel so bad for Ethan. I’ve never had to live without you and he does. Sometimes I think you need to go home.” In the evening Morgan texted me, “how was your day? i wanted to let you know i didn’t go to 1st and 2nd today. i’m trying to find something to tell myself in the morning to help me get up. it’s hard to explain but i get this “morning depression” in a way. and it makes it really hard for me to get out of bed. i need to find a better reason to get up in the morning other than just school cause it doesn’t work very well. anyways just letting you know. what did you do today?” Chandler is in Florida sacrificing all that he has to serve others with the belief, “I know that the most I can do for her and my family is to be out here, serving others and serving God.” 

Before going to bed, Ashtyn and I listened to a talk by Elder Jeffery Holland called, “Lord, I believe.”: He quoted from Mark 9:22-23 “but if thou canst do anything, have compassion on us, and help us. Jesus said unto him, If thou canst believe, all things are possible to him that believeth.” We will keep believing.

Laughter Is The Best Medicine

I remember the first night Ashtyn and I slept at Seattle Children’s Hospital. It was March 7th 2018, after only being in Seattle 24 hours. Everywhere we went was a first and every face was a new face. Close to 9:00 p.m. I remember sitting on the couch while Ashtyn slept when a doctor walked into her room. He approached me and said, “Hi. My name is Dr. Faucette. Whenever I meet a parent I have to ask them a couple hard questions.” A little nervous, I geared up to be questioned. “What do you call a deer with no eyes?” “What?” “No eye deer.” And so it began. Dr. Faucette is an oncologist who works night shifts covering the cancer floor in case needs and emergencies arise. Each night he works, he’ll visit every patient, 40+ at full capacity, and tell jokes. Every shift the jokes are different and based around a theme of the night. This week was the first time Ashtyn felt up to telling him her own jokes. (See Video.)

Please pray that her blood bicarbonate and phosphorus levels will increase and her blood calcium level will decrease. You don’t need to understand what all that means other than, it will totally help get Ashtyn home.

Mom, Tell Me What It’s Going To Be Like When We Get Home?

“Mom, tell me what it’s going to be like when we get home?”

“You’ll get off the airplane in Salt Lake City and won’t believe how you accomplished what you set out to do in Seattle and are actually home. You’ll walk into the house where Marlie will jump at your legs in total excitement to see you. She’ll follow you into your bedroom which will look exactly how you left it. November and December will be cold and hopefully super snowy. We’ll spend time at home with the fireplace and heater on while those who love you come to visit. We’ll snuggle on the couch with blankets and enjoy calm time with Morgan and Ethan. We’ll have small dinner parties with family and friends, and have little cousin sleepovers.”

From the beginning of the bone marrow transplant, Ashtyn’s heart has been set on going home on Day 100, November 14th. It’s going to take a much bigger miracle than I thought to get her there. Not only does her body have to perfectly cooperate, but the BMT team in Seattle has to feel comfortable with her going home in two weeks and the BMT team in Salt Lake City has to be on board with the decision as well. At this point I have not sat down with a BMT doctor to talk logistics. Her body still has to prove a few things before a serious discussion is appropriate. 1. Her adenovirus level needs to remain below 10,000. It currently is. 2. Graft verses host disease in her intestines needs to stay minimal. It appears to be. 3. Her marrow needs to show robust recovery, which needs improvement. Her ANC is 2080 which is great but platelet transfusions are still required every other day. 4. Her kidneys need to be super stars so IV potassium, magnesium, and bicarbonate are no longer needed. That’s coming along. 5. She needs an “iron stomach” that will handle all needed oral potassium and magnesium without having diarrhea. We haven’t tested the stomach yet for this but it probably needs to be a little more healthy. Unfortunately her body doesn’t have long to prove itself to give the BMT team confidence that she is safe to go home. One thing we have in our favor is that we live 20 minutes from Primary Children’s Hospital, which has a BMT accredited program. Both programs have to feel it is safe and in her long term best interest to go home as early as she’d like. Until I’m told “No” we will shoot for the stars. Why not? You can never go wrong with having hope, faith, and belief. Everyone, there’s a lot to pray for. Let’s get it done.

She may want to go home but in the mean time, 

she’s surrounded by a whole lot of love.

Hanging with Doctor Faucette.

10 Steps Forward, 0 Steps Back

I would say that yesterday was a 10 STEPS FORWARD, 0 STEPS BACK kind-of a day. That hasn’t happened in the last three months and I have a feeling the tide has turned. 1. Last weeks bone marrow aspirate showed zero leukemia. 2. The bone marrow biopsy showed very minimal (<5%) cellularity however all cells are 100% genetically matched to the donor and her absolute neutrophil count went up to 3780 allowing the marrow stimulant medication Neupogen to be stopped. 3. No viruses were found in her spinal fluid. 4. Platelet transfusions are needed every other day instead of daily. Saturday morning she had a random moderate reaction to a platelet transfusion that required two shots of epinephrine. Yesterday she needed another platelet transfusion and completed it without a reaction. 5. Adenovirus level came down to 1,900 so the kidney toxic antiviral medication Cidofovir was stopped! 6. Her extremely high IV potassium needs are coming down. For those who like numbers: when a patient requires over 100 meq of potassium in their IV fluids, that’s a lot. Heart monitoring and frequent lab draws are required. In the past she needed 200 meq of potassium. Yesterday they dropped the IV potassium to 99 meq. Her kidneys are doing much better. 7. Bowels have greatly improved. 8. Slurred speech is gone. 9. Walking well with a walker. 10. She slept without needing oxygen. *One thing that has kept us going during the last eight months is summed up by my Optimistic Hero President Gordon Hinckley. “Be believing. Be happy. Don’t get discouraged. Things will work out.”

Awesome Doctor Beth. What’s not to love? 

She’s got a heart of gold and loves Disneyland as much as Ashtyn does.

Awesome nurse Katya. She has loved and cared for Ashtyn 

so many times, she actually memorized her 

seven digit medical number without trying.

Walking the hospital halls. 

Saying Goodbye Is Hard To Do

BMT Day 84: Ethan flew to Seattle and stayed with us in the hospital for 10 days straight without leaving one time. Sunday, as they hugged goodbye before he flew home, she cried, “I don’t want him to leave without me.” Ashtyn has cried everyday for the past two weeks. She wants to go home. This breaks my heart as my entire soul feels for her and wants to go home too. At the same time I’m grateful for the fact that she is healthy enough to feel appropriate emotions. What humanbeing wouldn’t cry feeling homesick after being away for eight months fighting the biggest battle anyone could ever imagine? Her tears show health. Her tears show strength. Yesterday, for the first time since being in Seattle, plans to go home to Salt Lake City were discussed. It is a bone marrow transplant standard of practice to stay within 30 minutes of the BMT hospital for at least 100 days after the transplant. Ashtyn is in a very unique situation. She will likely be discharged from the hospital close to her 100th day compared to many BMT patients who leave the hospital near Day 30. Our dream come true would be to leave the hospital and instead of staying in Seattle for close observation, drive directly to the airport and fly home to be closely watched by the BMT team at Primary Children’s Hospital. Has that ever before been done? Probably not. But this is Ashtyn we’re talking about and she never does anything typical. What would allow her to go home? 1. Her central line needs to be taken out of her chest. She can’t be more than one hour away from a hospital, let alone on an airplane with a central line. We are hoping she won’t need the central line once IV potassium is not needed, which is being decreased everyday. 2. Under control graft verses host disease. She has mild GVHD in the intestines which currently is being managed and not causing a problem. Let’s keep it that way. 3. Good marrow cellularity, decreasing the platelet transfusions needed to less than twice per week instead of daily. She didn’t need a platelet transfusion on Sunday with a value of 33 instead of less than 20, and her ANC was 3158! She’s on the right path! There are a few other details that need to be in order before going home but let’s focus on the three mentioned. I’ve said it before, it will take a miracle to get Ashtyn home by November 14th but I’m a total believer.

My Wish For You

My wish, for you, is that this life becomes all that you want it to,

Your dreams stay big, your worries stay small,

You never need to carry more than you can hold,

And while you're out there getting where you're getting to,

I hope you know somebody loves you, and wants the same things too,

Yeah, this, is my wish.

*Thank you for the live concert Megan. We love you and are your #1 fans.*

I'm Happy

Each day goes by fast and seems to never have a shortage of things to do. It’s now 3:30 a.m.. Ashtyn slept a lot today because of her bone marrow aspirate and biopsy procedure and is currently awake listening and singing to her worship/spiritual iTunes playlist while reading the Book of Mormon. That’s totally her style and for the first time in 3 months feels up to staying up late, listening to music, and reading. Nighttime has always been our favorite and tonight was extra awesome. For dinner Ashtyn ordered cheese pizza, a vanilla shake, cantaloupe, grapes, and pineapple. She ate one slice of pizza, drank the shake, and didn’t absolutely hate it which is a total win. Ethan sat in her bed and ate his dinner right beside her. Afterwards we watched Survivor, our longtime family tradition. At one point in the evening I left to do laundry and saw Whitney right outside our room! Whitney is a nurse who took care of Ashtyn while fighting cancer in Salt Lake City. She now lives in Seattle and teaches nursing students while getting her nurse practitioner degree. It was so joyful having someone from our Primary Children’s Hospital Family at the beside in Seattle. To top off the night we had Kelsey as our nurse who we love and Ashtyn’s night lab values all came back phenomenal. Her potassium blood level remained perfect after two days of starting to decrease the IV potassium given. Her kidney creatinine level went down to 1.0 from yesterdays 1.3 which is huge and tells us her kidneys are “happier” with the goal to get the number down to 0.6. AND her absolute neutrophil count went up from 2300 last night to 2907! What??!! She’ll be off Neupogen and starting Venetoclax in no time! God is a God of miracles. Up Next: I’m hoping and praying her ability to walk will increase, weight will start to normalize, adenovirus will no longer be an issue, and the bone marrow aspirate and biopsy results will come back A-OK. I’m heading to bed so happy. I have four kids that are progressing and finding joy in their journeys so of course I’m happy.

Whitney was one of the wonderful nurses 

who took care of Ashtyn in Salt Lake City.

Kelsey is one of the wonderful nurses 

who takes care of Ashtyn in Seattle.

Love and Miss my boy Chandler.

Morgan sprained her ankle and can’t cheer for awhile but still smiling.