Ashtyn Goes to School

Saturday, Ashtyn and I had a peaceful night of sleep in the hospital. By 4 a.m. it was time to turn off the lights. I laid next to Ashtyn in her bed and fell asleep listening to her talk about the peace she feels in the hospital. “There is a spirit here that is stronger than at home. It feels like there are angels all around. At least this hospital stay is preparing me for when I have to come back.”

Sunday afternoon Ashtyn was able to go home. She was sent home with a prescription for a strong IV antibiotic that I give her three times a day called Ceftazidime. She also swallows three pills of the antibiotic Clindamycin three times a day. The hope is, with those two antibiotics, her central line wound infection will heal. Ashtyn has been worried. The fear is that the infection will spread or not heal and the central line will have to be pulled out. Surgery would then be done to place a new central line in her right chest. She has been on IV antibiotics for three days. Several times a day I look at it closely to see the progress. It looks less and less red with each day and appears to be slowly healing. What a relief. (Ashtyn has asked me several times to please ask her Army if everyone will pray that her central line infection will heal completely.)

Monday I took Ashtyn to Canyonview Elementary School to visit her 6th grade class. I had arranged with her teacher that we would be there at 1 p.m.. Ashtyn was a little hesitant to go. Being the center of attention has not been appealing to her and the thought of a crowd was a bit overwhelming. “We are only going to be there for 30 minutes, right?” She asked. “Whatever you want.”

When we walked into the school, she was warmly greeted by the front desk workers and the principal. We then made our way to her classroom. The kids were shocked and delighted to see her as she walked in. All the kids stayed in their seats while Ashtyn was directed by her teacher to sit at the front of the class. Once situated I told the kids that they could ask Ashtyn any questions they wanted. Some of the questions were: “What’s your favorite thing you’ve done since being home?” “What do you do all day?” “How do you like the hospital food?” “How would you rate the hospital food compared to the school cafeteria food?” “When will your hair grow back?” “How long were you in the hospital for?” “What is it like taking chemo? Does it make you sick?” We also talked about the bone marrow transplant and why she has to have it. After all the questions were answered, Ashtyn’s teacher showed funny project videos the kids had made. Then everyone was allowed to freely move around the room and hang out together. It was perfect and so much fun. Ashtyn laughed, listened, talked, and had a great time. 

As I watched her, I was so touched by her smile and energy. A couple times I whispered to her, “are you ready to leave?” She wasn’t. At 2:30 p.m. it was time for the class to go to science so they said their goodbyes. Ashtyn walked to the car. She was happy and exhausted. What a wonderful opportunity Mrs. Skrocke gave Ashtyn. I am so touched and impressed by the love and support Ashtyn receives from her classmates, parents, and the staff at Canyonview. In addition to all the help we receive from neighbors and friends, Canyonview parents volunteer and bring us meals once a week. We receive such kind support and love through messages, banners, and greetings. It has been phenomenal. It feels like we are all in this together.

Where Can I Turn to for Peace

Have I given you the impression that I’m always calm? If I have, it’s not true. I do freak out. It doesn’t last long but it does happen. Things have scared me much more lately than they did at the beginning.

Wednesday I took Ashtyn to lunch at Blue Lemon with a friend and her cousin McKenzie. When we were ready to leave, Ashtyn and McKenzie walked to the fountain machine for refills. As Ashtyn lifted her cup to refill it, her vision became blurry. She lost all strength and dropped her cup spilling the ice on the floor. She then leaned on McKenzie for support because her legs were too weak to stand alone. I rushed to Ashtyn and automatically wrapped my arms around her back preparing for her to fall. Her legs trembled and jerked for several seconds. Gradually she regained strength and was fine. Was I inwardly freaking out? You bet. I’ve been with her before when her blood pressure drops. She has gone to the ICU three times because of blood pressure problems. There is nothing that makes me more nervous than abnormal blood pressures. Once she felt normal again and I could relax, I noticed my hands were shaking and I was freezing cold. Apparently that’s how my body responds to intense sudden fear. When I got home I checked her blood pressure. It was normal. I called the hospital and informed them of what happened. They advised that I keep an eye on her. Their concern was minimal because her blood pressure was back to normal. I was then calm.

Unexpected Clinic Visit

Thursday morning when I got up to go to the gym, Ashtyn surprisingly woke up. She asked me if her central line looked ok. It didn’t. There was a build up of pus around the insertion site. I called the hospital oncology clinic and was told a nurse would call me back. I had a pit of worry in my stomach. I have seen Ashtyn get sick enough to know that it’s not a path I enjoy going down. I quickly dressed, did my hair, and got ready for the day. After 30 minutes of not hearing from a nurse, I called the clinic back informing them that I was bringing Ashtyn in. “You can’t just walk in. Let me get a nurse on the line. Hold please.” I explained to the nurse the pus and appearance of the incision site. She put me on hold so she could talk with a doctor. It didn’t take long before she was back on the phone, “The doctor would like you to come in. Would an hour be too soon for you to get here?” Pleased with their decision I said, “I can leave right now. I will be there in 20 minutes.” I was anxious to get her to the hospital to start treating the infection. Once there, they changed her central line dressing, cleaned the site, and took a good look at it. They also cultured the site and did blood cultures to see if the infection had gotten into the blood stream. A complete blood count test was also done that showed, after a week of chemo, her white blood cell and red blood cell counts were dropping. Ashtyn was already scheduled to go to clinic the next day so the doctor ordered two units of blood to be given Friday. She was given an IV dose of antibiotics and I filled an antibiotic prescription for home. After 3 ½ hours, we headed home.

Second Blood Transfusion

Friday morning we drove back to the hospital. The visit started with another painful dressing change. She has a constant open wound on her chest where the central line goes in. With each dressing change, her central line site is scrubbed with alcohol and ChloraPrep antiseptic. During the process tears streamed from her face as she cried. She later explained how it feels. “It stings, burns, and has an awful, sharp pain.” After the dressing change, the chemo drug Ara-C was given and the first unit of blood was started. As the blood transfusion was being infused, Ashtyn and I sat side by side watching “Cloudy with a chance of meatballs.” After about 15 minutes, her arm started to itch and was red in a couple of areas. She thought she’d been bitten by a bug. I asked the nurse if Ashtyn was having a reaction to the blood. After looking at the rash, the answer was yes and the blood was immediately stopped. Her blood pressure was also quite a bit lower than when we first had arrived. I got nervous. Ashtyn and I asked if they would check her blood pressure every 5 minutes instead of every 15 minutes. She was given a dose of IV Benadryl and felt “weird” and dizzy. That made my heart beat even faster because I didn’t know if she felt different from the blood reaction, possible blood pressure problems, or from the Benadryl. The blood transfusion was restarted. Soon she complained that her throat was feeling tight. I immediately jumped up and stopped the transfusion. The doctors came and assessed her for the third time and decided to stop that blood transfusion completely. I felt uneasy and sent out a facebook post. “Please pray that the 2nd unit of blood will go in without a problem, that her central line infection will go away, and that her lumbar puncture will go smoothly.”

Ashtyn was then sent to the Rapid Treatment Unit operating room where she was put to sleep for a lumbar puncture to inject chemo into her spinal fluid. I felt calm. We then went back to the clinic and a second blood transfusion was started. Everything went well and after seven hours in the hospital, we went home. I was so proud of Ashtyn for her bravery and strength. Erik, a close friend from years ago commented on my facebook, “Rough day…Keep going. You can do it! You too Suz…Keep going. Everyone is rooting for you and willing to help when you need it.” I was grateful for that comment. I really needed those encouraging words. I need to stay strong and keep going for Ashtyn.

Saturday I again noticed that I wasn’t as calm as I had been in previous months. Where was my peace? I knew I needed to go to the temple. Ashtyn’s home health nurse was visiting in an hour to do a dressing change because pus was still coming out of her central line. Ashtyn asked if I could stay and be there for the dressing change. I explained that I really needed to go to the temple but her dad was there to help her through it. I went to the L.D.S Jordan River Temple. Once in the temple, I walked into the chapel and immediately saw my bishop I had a year ago. He is a man I greatly admire for his inspiration, faith, humility, charity, and daily commitment to be an instrument in God’s hands. He and I have had wonderful talks in the past. He has followed Ashtyn’s progress and has visited us at the hospital a couple times. I approached him and the love in his eyes was clear. We only sat and talked for a few minutes. He asked how Ashtyn was. I explained that she was doing good however after three months, I now felt fear. He had a Book of Mormon in his hands with the pages opened. He immediately handed it to me and told me to read what apparently he had just been reading. With tears in my eyes I began to read. This is what I read, likening it unto me: “Never had I seen so great courage. They said unto me: Our God is with us, and he will not suffer that we should fall. Now they never had fought, yet they did not fear death; and they did think more upon the liberty of their fathers than they did upon their lives. They did not doubt, God would deliver them.” Alma 56:45-47.

After reading the verses, Bishop Oswald and I went our separate ways, however I thought about our interaction for the next several hours. I had told him I was in the temple on a Saturday afternoon wanting to feel comfort, peace,and strength. He mentioned he went to the temple because God is his companion, he needs that connection. The tender mercy of having a man I thoroughly look up to, who knows me well, in the temple with his scriptures open to a verse for me was a reminder that God is aware of me and my needs. My courage was restored. The verses reminded me to not doubt. I was also reminded that the greatest strength comes when God is my companion.

When I left the temple I checked my phone and listened to a voicemail from the hospital. The home health nurse talked to the oncologist at the hospital about Ashtyn’s central line infection. The message was for me to bring Ashtyn to the ER so they could start a strong IV antibiotic. They suggested I pack an overnight bag in case she needed to be admitted. I rushed home, quickly packed up a couple small suitcases, and was off to the hospital. I felt complete comfort, peace, and strength. I was able to be what Ashtyn needed me to be.

Ashtyn's unhealthy central line

We got to the ER at 6:30 p.m. After sitting in the ER for six hours, Ashtyn was admitted to a room on the oncology floor. It is now 2 a.m. Ashtyn is sleeping, but it won’t be for long. Her nurse will soon be coming in to do another painful dressing change so the pus can be cultured. Antibiotics will then be started. Before falling asleep Ashtyn said, “You don’t realize what you have until you don’t have it anymore. I wish I would have enjoyed the time more when I didn’t have to worry about a central line infection.” My dear friend Janet commented about our recent situation, “The adventure never ends.” Isn’t that the truth? We are learning so much. “All these things shall give thee experience, and shall be for thy good.” D&C 122:7

Energy

Today is day 6 of the 28 day home chemotherapy course and everything is going great. Friday, April 26th was day one. We went to the hospital at noon. After she was examined and her broviac central line dressing change was done, she sat in a chair while the IV chemotherapy drugs Ara-C and Cyclophosphamide were given. She also got her monthly IV dose of Pentamidine, which is used as a prophylactic antimicrobial medication given to prevent Pneumocystis pneumonia caused by having a depressed immune system. We were then handed the schedule of the chemotherapy she would be getting over the next 28 days. The three days following clinic she received Ara-C at home. Each night for two weeks she takes one oral chemo drug called 6MP. This coming weekend she will again get Ara-C for four days straight. On Friday when she goes in for a checkup, she will also have a lumbar puncture with chemo injected into her spinal fluid. After two weeks, Ashtyn will then only have chemo on Fridays at clinic. She will get a chemotherapy called PEG on the 3rd Friday and Vincristine on the 3rd and 4th Friday. On May 24th she’ll get a bone marrow aspirate to confirm the cancer is still gone and progress towards the bone marrow transplant. The research that has been done to come up with cancer regimens is astonishing.

Ashtyn at the clinic

Ashtyn is looking amazing, is super funny, and has a brain and heart full of energy and spunk. She is always talking with excitement about things she wants to do and places she wants to go. “I want to go to Lagoon.” “Let’s go to the Zoo and see the monkeys.” “A hike would be cool.” “We need to go to Hawaii.” “I am excited to have my huge cancer free party with a bounce house, guacamole, and snow cones.” “Later I need to get my scuba certification and go to Bonaire.” “I would like to go to Disneyland for a day and go to the Hollywood Walk of Fame and see Hugh Jackman’s star.” “I would like to go to St. George with you this weekend.” “After I am done with cancer we should have a huge, gigantic shopping spree for clothes, accessories, and awesome stuff.” Several nights ago as I was driving her to a friend’s house she said, “Mom! Let’s just blow this joint and drive to Las Vegas right now! We aren’t getting any younger, and you’re getting up there. We could go to the Coca-Cola store and drink the tray of different Cokes and go to a show!!!” She has such great ideas and enthusiasm, but “my brain wants to do stuff but my body doesn’t.”

Cheesy with Morgan

On Sunday she walked to church which is five houses away. She listened to Chandler give a talk, stayed for a total of 30 minutes, and was ready to go home. On the way home she needed to rest a few times to catch her breath. Ashtyn stays in my bed most of the day. It’s a blessing my bedroom is on the main level of the house, not too far away from all the family action. There’s a lot of sunlight in the room and a door that leads out to the back deck. She can listen to the kids jump on the trampoline and enjoy the beautiful spring weather even from bed. Friday was by far the busiest day she has had so far. After four hours at the hospital in clinic, we went to Bonsai, a Japanese steak house restaurant, which she had been looking forward to. Afterwards she went to a friend’s house until 10:45 p.m. Once home she still had energy to stay up until 1 a.m. The rest of the week she has been relaxing at home. Yesterday at 5 p.m. her Aunt Kristi came over to visit. Ashtyn was in my bed. Kristi asked, “What did you do today?” With her sense of humor intact Ashtyn said, “Well, I moved to the couch and back.” Kristi responded, “Well that was a productive day.” Carol wrote on a facebook comment for Ashtyn, “Just chill – make lists of all the things your brain wants to do & soon enough your body will feel like doing it!”

At Bonsai Japanese Steak House

A friends couch

Each morning I wake up wondering how she is going to feel that day. So far she has continued to do very well. It has been a joy seeing her with health and strength that allows her true personality to shine. Though she is often in bed, she is so animated and fun to be around. Thank you for your continual prayers.

Bald and Beautiful

Opposition is Not a Bad Thing

Have I made it clear how grateful I am for each one of you for taking the time to read this blog? Have I made it clear how much I appreciate the support you give me and Ashtyn by simply staying updated and informed? We are bonded with a common love and concern for Ashtyn. I would hug each of you as if you were family because I feel we are connected and going through this journey together. Thank you. (If you have any questions that you want answered in the blog, please text me 801-633-4969.)

I got a phone call from Ashtyn’s oncologist. The oncologists and bone marrow transplant doctors came up with a plan they believe will be best for Ashtyn. They want her to do one month of chemo at home with the idea that she will then do a bone marrow transplant the second week of June. If she currently has no evidence of cancer, why does she have to do another month of chemo or even a transplant at all? They are certain that if all treatments were stopped the chances the cancer would come back is 100%. The goal of an additional month of chemo is to kill any undetectable, residual cancer cells that may be present. They want to do all they can to destroy any possible cancer cells which increases the success of a transplant. Since the cancer appears to be gone from the last month of chemo, she is allowed to do the next round of chemo at home. The plan is for her to go to the hospital today, Friday the 26th, to receive IV chemotherapy. After about three hours in the clinic, Ashtyn will go home with a detailed schedule of what chemo she will take each day during the next 28 days. Home Health will be very involved in providing supplies, chemo, and instructions on how it is to be administered. She will have both IV and oral chemo with varying side effects, however nothing will be as intense as when she was in the hospital. Each Friday I will take her to the hospital for a check up. She will also get lumbar punctures with administration of chemo into her spinal fluid. After the 28 days of chemo at home, they will allow her body and white blood cells to recover over two weeks. She will then be admitted into the hospital for close to two months for the bone marrow transplant. For now, unless Ashtyn gets sick, she will be home for a total of eight weeks. She has never been able to do chemo at home. It’s a path we have never experienced. I’m excited to see how it all turns out.

We’ve been told “for it must needs be, that there is an opposition in all things.”Opposition is not a bad thing, it’s awesome! It means you can learn and grow during difficult times and then more fully appreciate and enjoy the easy times. Ashtyn has experienced a lot of opposition. She has cried and laughed. She’s felt pain and comfort. She’s felt sorrow and joy. She’s felt fear and peace. She has missed out on a lot and has had amazing opportunities. She has been away from friends and has met incredible people. When we were alone in a small hospital room, we felt a great amount of support from the outside world. When there was nothing the human hand could do, angels filled her room. In February she didn’t have an appetite and couldn’t eat anything. In March and April she had a great appetite. After spending 2 1/2 months in the hospital, she now gets to spend eight weeks at home. I will never shun opposition. When times are difficult, joy and peace will follow. I’ll take the “bad” opposition to enjoy the “good” opposition any day.

In life and in cancer I have learned to “just go with it.” However you want to describe life, whether “a roller-coaster,” “the long and winding road,” “the journey,” “the climb,”… it’s never a predictable course, and that’s ok. I have to plan for the future and then roll with the punches as they come, adjust plans, adapt to the unexpected, embrace change, and face head on whatever life brings. It’s all good. Or eventually it will be. At least it seems that way, doesn’t it? Whenever the unexpected happens, it seems after pushing through, everything works out. So I’ve learned I need to just go with the flow with faith that “things work out, it isn’t as bad as you sometimes think it is. It all works out, don’t worry.”

It seems the entire cancer experience so far has been full of surprises. Nothing expected has happened. Obviously the diagnosis was a shock. The rare form of leukemia was a punch. We had to adjust plans while staying in the hospital for 39 days with many complications. March 10th Ashtyn was able to go home for, what we were told, two weeks. We adapted to the unexpected when we had to return to the hospital after four days. We went with the flow when told her second hospital stay would be a few days which ended up being 27 days. Ashtyn is now home. Originally we were told she would be home for two weeks. Yesterday we found out that as long as she doesn’t get sick, Ashtyn will be able to stay home for eight weeks. We will embrace the change and continue being flexible with whatever surprises may come our way.

The Results are In

On Monday a home health nurse visited Ashtyn and her blood was sent to the lab. The results came back showing a good white blood cell recovery. Her ANC was up to 700. The instructions were that Ashtyn can do whatever she wants and be in public without a mask. After the news came, Ashtyn started to think about what she wants to do. Each day we will get out of the house and do something she feels up to doing.

Today Ashtyn did more than she has done since December. I woke her up at 11:30 a.m., checked Morgan out of school, and went to La Cocina for lunch, one of their favorite mexican restaurants. Afterwards we went to Old Navy. Every so often Ashtyn would find somewhere to sit and was able to last about 30 minutes before needing to go back to the car. On our way home she was in the mood for a Carls Jr. strawberry shake and Sonic chili cheese fries and chili cheese tots.

A couple hours after getting home we went to our church for a ward youth spaghetti dinner and auction fundraiser. Ashtyn was a little overwhelmed being in a room with 75 to 100 people. She walked into the room, sat at a table, ate dinner, talked with a few people that visited her at the table, and then she went home.

What was it like for Ashtyn to step out into the world? “It was weird but I liked it. It tired me out real quick.”

The results from her bone marrow aspirate that was sent to Seattle came back. There was absolutely no detectable cancer. None. The doctors were shocked. They were certain that some cancer cells would still be present. It is rare that cancer is completely gone after one effective round of chemotherapy. Ashtyn was scheduled to return to the hospital in two days to start chemo, however since she doesn’t have any detectable cancer the doctors don’t know yet what they want to do with her. The oncologists and the bone marrow transplant team are going to discuss what the next step will be. Will they do another month of chemo to keep her at zero? Will they decide to do two weeks of chemo instead? Or will they start the bone marrow transplant preparation and just do it? I should receive a phone call with the plan by the end of the day.

I know prayers are answered and miracles exist. It is a miracle that Ashtyn has no evidence of any cancer. Thank you for your faith and prayers.

“Most of us are acquainted with miracles that have occurred in our personal lives and the lives of those we love, such as miracles involving births and deaths and miraculous healings. All of these are fulfillments of the Lord’s modern promise to ‘show miracles, signs, and wonders, unto all those who believe on my name (D&C 35:8)’” Elder Dallin H. Oaks

Sand coming from friends in Oregon for her beach collection

Ashtyn's sand collection rack

She shoots she scores!

Awaiting Results

Friday “morning” I woke Ashtyn up at 11:30 a.m. and headed to the hospital for her bone marrow aspirate. “Why do they have to do it so early?” she asked with exhaustion. “It’s at noon which isn’t early.” (It really is early to her, since she continues to go to bed around 1 a.m. and wakes up for the day around 1 p.m.) Once at the hospital we valet parked and started walking down the hall towards the elevators. After 50 feet Ashtyn realized she needed a wheelchair. I found her one, wheeled her to the elevators with her mask secured around her face, and went up to the 4th floor Oncology Clinic. There is never a wait in the clinic. Her vital signs were taken right away with a blood pressure of 104/60, heart rate 100, and temperature of 98.2F. Perfect. Her primary fellow and attending doctors assessed her and the nurse changed her sterile broviac dressing. Just a typical day doing what we do without anxiety or fear.

A bone marrow aspirate has become typical as well. Ashtyn has done the procedure five times so far. After the clinic I wheeled Ashtyn to the Rapid Treatment Unit. Lindsey greeted us as always with the ipad and the Disneyland Explorer app already playing. She also showed us that Ashtyn’s picture was on the front page of the Primary Children’s Hospital April newsletter because she did an interview for storycorps.org a few weeks ago. Ashtyn thought that was so cool. When the O.R. was ready she knew the routine and had no hesitancies. She walked into the operating room, laid on her right side on the table, the anesthesiologist pushed Propofol into her central line, and Ashtyn quickly fell asleep. Upon awakening she told the nurses she had been sleeping for four days. When they informed her that it had really only been 20 minutes she sweetly trusted them. After she drank a slushy and ate the plain potato chips she always picks, we headed home.

Medical Tidbit: Cancer cells often collect in the lining of the spinal canal or brain in patients with leukemia. This results in central nervous system leukemia. Even if cancerous cells aren’t detected, patients still undergo central nervous system prophylactic chemotherapy to ensure that no leukemia cells are present. While the bone marrow aspirate was done (removal of a small amount of bone marrow liquid for examination) she also got a lumbar puncture and the chemotherapy drug methotrexate was again injected into her spinal fluid.

At 6 p.m. I received a phone call from Ashtyn’s oncologist with the preliminary bone marrow aspirate results. Looking at her bone marrow liquid at Primary Children’s there was no evidence on any cancer cells. A patient is considered in remission if there is less than 5% cancer cells among normal cells. In order to have a bone marrow transplant there must be less than .01% detectable cancer cells, so basically no evidence of any cancer cells whatsoever. Her sample was sent to Seattle Washington where they have state of the art technology that enables them to get an accurate reading on the percentage of cancer cells present. In two days the results will be known. The doctors believe Ashtyn will still have detectable cancer cells because she only had one effective round of chemo. If there are cancer cells present, she will go back to the hospital in five days and begin another round of chemo. If there truly are no cancer cells, preparation for a bone marrow transplant will begin. Either way is good news. Because the last round of chemo worked so well and her bone marrow has no visible cancer, she is allowed to stay home for a longer period of time. Physically it’s a huge benefit that allows her body to build more white blood cells. Emotionally it’s a huge benefit having a break from the hospital and enjoying time at home.

Friday night Ashtyn had a couple friends over, Spencer who survived Rhabdomyosarcoma and Kaylee. Though none of them go to the same school, all three have known each other for years. They enjoyed a delicious Olive Garden take-out meal, which Ashtyn had been craving for a month. I informed her, “Ashtyn, as I was walking out of the gym today a woman approached me with such love and kindness. She handed me money and said, ‘you don’t know me but my daughter and I have been touched by you and Ashtyn. I want to pay for her Olive Garden tonight.’” With a surprised look on Ashtyn’s face she said, “Mom, really? She was really thoughtful to think between the lines. She read a huge blog post, took one little sentence about Olive Garden, and thought about how she could serve.”

After dinner they watched my all time favorite movie “Les Miserables.” I knew nothing about the story of Les Mis until I saw the movie at the end of December. There has never been a movie that touched my heart so deeply. I bawled like a baby and wanted to be a better person after watching it. I remember after the movie I called Ashtyn and cried as I told her what an amazing movie it was. Ashtyn saw it three times before being diagnosed with cancer. I love the lessons that can be learned from the movie. Here are a few:

Perspective: “Tomorrow we’ll discover what our God in Heaven has in store.”
Happiness: “Life’s great happiness is to be convinced we are loved.”
Sacrifice: “Let us sacrifice one day to gain perhaps a whole life.”
Love: “Take my hand and lead me to salvation. Take my love for love is everlasting. And remember, the truth that once was spoken, to love another person is to see the face of God.”

In the almost three months since Ashtyn’s diagnosis, we have experienced such love, service, sacrifice, and compassion from family, friends, old neighbors, new neighbors, and strangers. Notes, gifts, and kind actions have touched us greatly. We have also experienced many tender mercies from God. The lessons learned about faith, trust, hope, optimism, patience, and love have been invaluable. Our perspective is forever changed.

Watching Les Miserables with friends

Eating Olive Garden

Normal, For a Moment

I am in my bedroom. It is 4 p.m. Chandler (14) is sitting on my carpet playing his acoustic guitar teaching himself to play by ear “No Surprises” by Radio Head. He has no homework tonight and will be heading to the gym in 30 minutes. Ashtyn is laying in my bed thinking about what she wants to order at Olive Garden to-go for Friday night. She also talked Chandler into letting her borrow one of his guitars so she can learn to play. Then she asked out of the blue, “Chandler, are you afraid to be the bone marrow donor?” He simply responded “no” and continued playing his guitar. Ethan (6) is running around playing and will be heading to swim lessons in an hour. Morgan (10) went to piano lessons after school and will be home soon. Tonight, for the nineth night in a row, I will be able to kiss each of my kids goodnight. Life seems almost normal, for a moment.

Being home has been rejuvenating for both Ashtyn and me. As we look ahead to the road that is before us, we must prepare our mind, heart, and bodies as best we can. Ashtyn’s body needs rest and a lot of it. So she sleeps, lays in bed, and sits on the couch. Though her body rests often, her mind is constantly busy. She thinks about going back to the hospital and wonders what she will do differently. She wonders about the bone marrow transplant and how sick she is going to be. She is preparing herself mentally to go back to the hospital and do whatever it takes to finish the fight.

I am preparing as well. I need to be strong for her. This week has built me up so that I can be physically, mentally, and emotionally ready to stand beside Ashtyn with stability and strength. Saturday morning Chandler and I went out to breakfast, just he and I. We then went to Ethan’s soccer game. In the afternoon, I took Ethan to Chuck E Cheese for a mommy/son activity. Afterwards I met my kids at Scheels and bought a trampoline and basketball hoop for fun summer activities. Sunday I went to my own church congregation for the first time in 11 weeks. I had the opportunity to teach the lesson for the women in Relief Society. The topic was “Faithfulness in Times of Trial.” Perfect! One of my favorite things to talk about! Monday I went to the gym (XCEL Fitness) to visit with friends and go to Body Pump, a total body weight lifting class. I have been so sore ever since. Tuesday, I went to a 19 year old girl’s house and joined her family as she was given a blessing before leaving on an 18 month LDS mission to Seoul Korea. I was her youth church leader a few years ago and was honored to be there. Wednesday, with extremely sore legs, I did a 60 minute spin class at XCEL and got my heart rate higher than it has been in almost 3 months. I was also able to talk to gym members who have become what I call “my XCEL family.” I have been built up by the interactions I have had this week with friends, neighbors, family, and all I come in contact with who support Ashtyn.

Ashtyn is never left home alone. If I’m not home, Jason comes over to assist with whatever she needs. There has been a noticeable difference in her energy, endurance, and spirit in the last eight days of being home. She went from not being able to walk without assistance to freely walking around without a problem. She went from staying in my bed constantly to being able to socialize in the family room. She went from sleeping most of the time to staying awake most of today. She talks, laughs, makes jokes, teases people, and smiles. She has had a nurse come do blood work to check her white blood cell and red blood cell production. Since leaving the hospital there has been minimal cell production. Her ANC is still 400 and is not allowed to go to public places. Normally kids with an ANC less than 500 are hospitalized. Her WBC count, hematocrit, and every other “count” is low. The good news is, she isn’t sick at all. Her C-diff follow-up test came back negative and she appears to be infection and inflammation free. That’s what matters.

A few days ago Landon, the founder of miles2give.org, and his running teammates Ryan and John, called me and asked if they could visit with us Wednesday to give Ashtyn something. I invited them over as long as they told me what they wanted for dinner. Their request was a Southern home-cooked meal. That’s funny because anyone who knows me knows I don’t cook anything that takes more than 30 minutes. But I was up for the challenge. We had baked chicken, mashed potatoes, gravy, corn, green bean casserole, corn bread, brown rice, and dessert from Costco. I wouldn’t say I cooked anywhere near as good as what they would get in the south, but they were polite and ate it anyway. Ashtyn stayed in bed all day to make sure she would have the energy to eat at the table with everyone. Prior to this, she had eaten every meal in bed.

Ashtyn playing the piano

At 6:30 p.m. Ashtyn played the piano while waiting for their arrival. She played the piano! So cool! Up to this point even sitting on the couch took too much energy so it was great to see her sitting at the piano. When they walked in my house hugs were exchanged as if we were close family. We sat at the dinner table, Ashtyn said a blessing on the food, and we ate. I wish you could have been there to feel the warm, positive spirit those men brought into our home. Love radiates from them because they sacrifice each moment of each day serving and inspiring others. As they run from San Francisco California to Ocean City Maryland, every day is dedicated not only to running miles and raising money for cancer research but also to spreading love and inspiration. After dinner they had Ashtyn sit on the couch while they presented her with different containers of sand from beaches around the world. When they visited her in the hospital Easter weekend, Landon found out that Ashtyn loves the beach. He asked his supporters to send sand from beaches around the world for Ashtyn. Her collection will grow and in the future she too will be able to contribute sand from beaches she’ll one day visit. I am going to buy a spice rack and put sand in each container labeling it with what beach the sand came from. Who knows how many spice racks she’ll be able to fill? Landon, Ryan, and John stayed for three hours chatting, playing with the kids, and bringing a great deal of positive energy and love that rejuvenated us all. What special men. They left their phone numbers for Ashtyn to text any time, and they meant it.

Normal, for a moment.