Day 9: We are Never Alone

I have always been honest with my feelings in this blog. I’ve also focused most of the posts on Ashtyn and my observations of what she is going through and my feelings about it. Today I want to share a personal experience of things I am learning about life as I spend hour upon hour in the hospital.

Yesterday I woke up feeling alone. It wasn’t about cancer, it was just about life. I’m a single mom and I just felt alone. Ashtyn was sleeping and the only thing I could think of to try to fill my loneliness was to read the scriptures. Soon into my reading there was a knock on the door and Kim walked into Ashtyn’s hospital room. Kim is a woman I met a little over a year ago when I moved into her neighborhood. I only lived near her for 10 months but we quickly became forever friends. She brought a friend with her that I had never met before. The friend’s 17 year old son passed away seven years ago from a recreational accident. We chit chatted about things spiritual in nature and I was so inspired. As they were leaving there was a knock on the door. It was my bishop and his wife. We talked about my son Chandler who went on Trek a few days ago. (Trek is a three day experience with his youth church group to relive being a pioneer). Chandler loved the experience. Today he kept telling me how much he missed his pioneer “family” and the spirit they brought into his life. My bishop left with a prayer for Ashtyn and me.

After the bishop left I dressed for the day. I still felt alone and weighed down so I went into the shower room, locked the door, and prayed in private. It wasn’t a prayer concerning cancer, it was a prayer for me personally to know what path in my life I should be on. Once I got back to Ashtyn’s room I received a phone call from the main hospital desk telling me that there were four women downstairs wanting to leave Ashtyn flowers. I told them they could come up and visit. It was the Young Women leaders from my stake. We talked about how well Ashtyn is doing and how I know she wouldn’t be doing as well had it not been for all the prayers that have been said on her behalf. I shared with them: “When Ashtyn was first diagnosed with cancer I knew it was going to take an Army of people to get her through it. I always knew it wasn’t about any one person, it was about an orchestra of people doing their part. I had a part to play, just like everyone else. Another way I have visualized it is, Ashtyn has a ton of “rocks” of different varieties in a backpack on her shoulders. With each prayer, thought, support, or service a “rock” is removed from the backpack. Each “rock” is specific to the person who removed it. If that one person doesn’t do their part, then that one rock stays. When someone prays or supports Ashtyn, a specific rock is removed. With this perspective and observing the effect one person can have on others, it gives a greater understanding of the scripture “Remember the worth of souls is great in the sight of God.” D&C 18:10 Every prayer matters. Everyone makes a difference and contributes to other’s lives in ways that no one else can.”

After the women left, I had one more visitor that stopped by, my dear friend Erin. I met Erin years ago at the gym. Her son was diagnosed with leukemia over a year ago. She has had a tender concern for Ashtyn since day one and has been a great support.

What was Ashtyn doing during all these visits? Sleeping. She slept until Erin was leaving. Ashtyn woke up at 5 pm. Never has Ashtyn slept that late into the day. I know those visitors came for Ashtyn, however they were there for me too. They were there to fill my soul and show me that I am not alone. What makes this experience even more remarkable is that up to this point visitors have been rare. In the 13 days of being in the hospital, Ashtyn has had about five visitors total. In four hours we had four visits with a total of nine people. I really needed that today.

Ashtyn’s dad came up to spend the evening with Ashtyn. I continued to be reminded that I am not alone as I went to dinner with my family for my dad’s 74th birthday. My mom and dad, three sisters, two brothers, two brother in laws, one sister in law, five nieces, one nephew, two sons, and two daughters were there.

Throughout the day I had mortal angels showing me love and support. When we let people into our lives, we aren’t alone. Ashtyn will tell anyone how she often feels heavenly angels in the hospital, as do I. When we open our heart allowing heavenly angels to guide and help us, again we aren’t alone.

“My beloved brothers and sisters, I testify of angels, both the heavenly and the mortal kind. In doing so I am testifying that God never leaves us alone, never leaves us unaided in the challenges that we face.” Elder Jeffery R. Holland

“In reality we are never alone when we stand with our Father in Heaven.” President Monson

UPDATE:
Ashtyn just finished post transplant day 9. Everyone has been very pleased with how well she has done with the bone marrow transplant so far. She may not feel well, but she is doing great. Ashtyn summed up how she is feeling, “My brain feels good. My body doesn’t.”

The past 9 days haven’t been easy for Ashtyn, however everything has been very manageable. She has mucositis. “Some moments are more painful than others.” The morphine is doing a great job keeping the pain at a minimum. She has had terrible foot pain. By day 6 she could hardly stand it. She wrote this, “This bone marrow transplant has been going fairly well. But one thing that is the hardest is my foot pain. It is a side effect to a very important medicine that helps my body accept Chandler’s bone marrow. There is not much I can do to decrease the pain. I do put cold wet rags on my feet and that seems to help the most. It’s very painful and very hard to deal with. It is a very achy feeling. I would appreciate your prayers and positive thoughts that this pain will go away. I know that God answers prayers and that with my Army’s help, this pain can go away. Thank you.” An hour later her Grandpa came to the hospital and gave her a priesthood blessing. He blessed her that the pain would go away for a time. From then on her foot pain has been better and currently doesn’t hurt at all.

Day 7 and 8 she had moments of nausea and would throw up a couple times a day. One evening a nurse brought a list of movies for Ashtyn to look through to see if there was anything she wanted to watch. Sitting in bed with her face in a blue plastic bag, she peered up at the nurse and said, “thank you” in between throwing up. That’s my girl. Never forgetting her manners.

Even with mucositis, foot pain, two platelet transfusions, one red blood cell transfusion, generalized yucky feeling, and some past anxiety, we could not be happier about her health and wellbeing. Ashtyn had very difficult chemotherapy rounds in the past. She surprised everyone with the complications that kept doctors and nurses on their toes. She is now surprising everyone with how smooth things have gone. I know that it is only because of all the support, thoughts, and prayers from her Army that has blessed Ashtyn to do so well. It’s remarkable.

We are not alone.

Day 5

Though the days go by fairly quickly for me, time seems to be going slowly. I feel it should be Day 10 due to anticipation but it is only the end of Day 5.

Ashtyn woke up with more mouth and throat pain than the day before. They increased her continuous morphine from .6 mg to .8 mg an hour. Each time she pushes the button the PCA pump gives her an additional .8 mg of morphine. Her pain is definitely being controlled and the mucositis isn’t nearly as severe as it was in February. Just a few more days before the mucositis will cease to get worse. “It’s mostly painful when I swallow and talk.”

Her foot pain was less than normal during the day and afternoon. I credit that to prayers from others. By 7 p.m. she was a busy bee doing all she could to ease the pain. Going back and forth between foot soaks, cloth wraps, rubbing with lotion, holding with light pressure, and tickling. It is now 2 a.m.. The nurse is at the beside assisting with ice packs and trying to think of other ideas that might help.

I obviously don’t know how Ashtyn is feeling. I don’t know what it feels like to have gone over four months with a constant toll being put on the body with countless medications, chemotherapy drugs, and radiation. I don’t know how it feels to have my entire bone marrow, which is necessary for life, obliterated. I don’t know what it feels like to have the physical, emotional, and mental stress that she has had. The only thing I know is what I see. Ashtyn has grace. She is very polite and pleasant to be around. However she has struggled several times in the last couple of days with anxiety, something she has never experienced prior to cancer. When Ethan and Morgan came to visit her for movie night she had a moment of feeling overwhelmed and became very anxious with the increase in commotion. Yesterday her dad came for a quick visit. He started to rub her feet but soon stopped to do something else. Ashtyn was annoyed because she was enjoying the foot massage. The disappointment was too much for her to cope with and again she became very anxious. After she calmed down, Jason left. A few minutes after he left, her Grandma and Grandpa came to visit. She again was overwhelmed with the unexpected visit and stimuli. She could hardly keep her composure as anxiety peaked. When she is anxious she becomes frustrated, annoyed, and very tearful.

Just moments after Ashtyn’s grandparents left, a new friend of mine, Lisy, knocked on the door to say hi. She is a mom of two children that have had bone marrow transplants and her daughter was in the hospital for a fever. I do not believe it was random that Lisy came to Ashtyn’s room at the time she did. It was the perfect moment for me to voice my concerns to a mom who has “been there done that.” We talked in the hall and I told her about Ashtyn’s anxiety. She reminded me that Ashtyn is maxed out and sensory overloaded right now. She is in survival mode with everything she has to deal with physically and emotionally. Ashtyn can handle being in the hospital day after day, but can’t handle the loud sounds of Ethan shooting a Nerf gun. She can handle her entire body feeling yucky but can’t handle the annoyance of her dad stopping her foot massage prematurely. She can handle the mouth, throat, and foot pain but can’t handle an unexpected visitor and surprise questions. Lisy told me exactly what I already knew, but isn’t it nice to be validated sometimes? I have learned the importance of involving people in the details of my life. Why would I want to walk through my struggles alone when so many people have gifts and talents that can help lighten my load and build me up?

For both Ashtyn and I, our spiritual strength is the only reason we have physical and emotional strength. Ashtyn is handling her struggles with faith, trust, patience, and hope. She has faith that God is watching out for her and that He is involved in the details of her life. She has trust that He won’t give her more than she can handle. She has patience knowing that this struggle won’t last forever. She has hope that in the end everything will be worth it because of the things she is learning, the positive experiences she has had, and the strength gained that will benefit her entire life.

Have you ever wondered, “Why does Ashtyn have to go through this?” “Why does it have to be so difficult?” “What is the purpose?” Do you ever ask that about your own life?

I found this quote that, for me, answers those questions:

“As we ask these questions, we realize that the purpose of our life on earth is to grow, develop, and be strengthened through our own experiences. How do we do this? The scriptures give us an answer in one simple phrase: we “wait upon the Lord.” Tests and trials are given to all of us. These mortal challenges allow us and our Heavenly Father to see whether we will exercise our agency to follow His Son. He already knows, and we have the opportunity to learn, that no matter how difficult our circumstances, “all these things shall [be for our] experience, and [our] good.” Elder Robert D. Hales

Ashtyn's view for awhile

View from a chair

Day 3 and 4 Is Behind Us

Ashtyn is stable and enduring well. Each and every night I sleep at the hospital. Ashtyn and I both like it that way. The nurses give one medication or another at least every few hours both day and night. Ashtyn’s blood pressure and temperature is taken every four hours. Blood is drawn from her Broviac central line every morning at 4 a.m. for lab work. Generally Ashtyn and I sleep through the nursing care. We do wake up every couple of hours for her to go to the restroom. I sleep next to the nurse’s call light so when an IV pump alarm sounds I can quickly push the call light so the nurse can come in and do what needs to be done to quiet the alarm. Other than that, Ashtyn and I sleep quite well. At 8:45 a.m. the bone marrow transplant doctor and nurse practitioner come into the room to assess Ashtyn and give updates on the plan of care for the day. At 9:15 a.m. a loud voice comes out of the room intercom with the same announcement every morning, “The hospitality cart is in the hall. There is coffee, juice, and an assortment of pastries’s. This is for parents and guests only. We will be here for approximately five minutes.” It is then repeated in Spanish. I am normally too tired to go get anything. Ashtyn generally sleeps in until about 11 a.m. to 12 p.m.. With the blinds shut and a quiet room, I have learned the best thing for me to do is continue sleeping even with all the morning interruptions.

Once Ashtyn wakes up I give her a bed bath and wipe down her room with bleach wipes. Sheets are changed and laundry is done. Ashtyn does oral care and puts lotion on herself. After she is clean and comfortable, Ashtyn will normally spend the rest of the day watching movies and messing around on her phone. So far she has mild mucositis which requires a low dose of continuous morphine that infuses into her central line. She also is using the button on the PCA pump to give her added morphine doses. Her mouth and throat pain have stayed under control, however her foot pain seems to be excruciating.

Achey feet wrapped in cold rags

Soaking her painful feet

Twice a day IV Cyclosporine is given over two hours. One of the side effects of this medication is hand and foot pain. During the two hour infusion and throughout the day her feet ache terribly. The only things that seems to lessen the ache is to either wrap her feet in cold wash cloths or soak her feet in a basin of luke warm water with added scented Foot Soothing salt. Ashtyn will continue to have achy feet until she is able to take Cyclosporine in pill form.

Day four Ashtyn got her first post transplant transfusion of platelets. Blood and platelet transfusions will be a common occurrence until engraftment.

Ethan

Enjoying Uno with Morgan

For the past three days Ashtyn has felt well enough for Jason to come to the hospital to spend several hours with her while I leave to spend time with my other kids. It has been really good for her to have independence from me and to have that one on one time with her dad. It has been really good for me to be able to get outside each day and enjoy the warm sun with my kids.

Chandler is feeling good!

Chandler has had a perfect recovery from his bone marrow donation. He went to a church BBQ ten hours after his donation surgery. In the last three days he has gone swimming at the local pools three times and went on an overnight camping trip. He is happy and thrilled about what he was able to do for Ashtyn. It has brought new confidence to him that I have wanted him to have for a long time. Chandler has a great sense of humor. If he is asked to do something he doesn’t want to do he’ll say, “I can’t do that, I just saved a life.”

When Ashtyn was getting settled to go to sleep last night she said, “The best part about the day is going to bed. Another day closer.”

We are another day closer to engraftment, another day closer to going home, and another day closer to putting this trial behind her. I am grateful for one more day of minimal side effects and no infections. I am grateful for another day of calm.

She is remarkably and noticeably being blessed.

Day 3: My sister Wendy sat with Ashtyn for two hours. They had a very engaging conversation about scuba diving. Bonaire, here we come! One day.

“The sucker tastes like water. That takes the fun out of eating a sucker.” It was thrown away.

Day 4: Movie night with Ethan and Morgan. We watched “Despicable Me.”

Day 2

Things are still going great. Today was a relaxing day in the hospital. In between watching movies, playing on her phone, and sleeping, staff worked to keep Ashtyn comfortable and manage any side effects she experienced.

After Chandler donated his marrow, it was tested for any infections before it was given to Ashtyn. Whether it had an infection or not, it would still be given to Ashtyn but they would know what to treat her for. Today the blood culture from his marrow came back positive for a staph epidermidis infection. This type of staph is a bacteria that is found on everyone’s skin and not a type of life threatening infection that many people think of when they hear the word “staph”. The concern that it would affect Ashtyn was minimal and the likelihood of it being a contaminant from Chandler’s skin during the harvest procedure is high. However, with a bone marrow transplant, doctors are ultra cautious. The doctor quickly wrote orders for the nurse to obtain a blood culture from Ashtyn and start the antibiotic Vancomycin. While Vancomycin was being infused over an hour, Ashtyn had a side effect to the antibiotic called “red man syndrome.” Her scalp turned red and her face was flushed. The rate of the infusion was slowed down and Benadryl was given to lessen the symptoms.

Methotrexate is another drug that Ashtyn is taking. She is given a dose of Methotrexate on post transplant day 1,3, 6, and 11 to help minimize graft versus host disease (when Chandler’s immune cells attack Ashtyn’s body). Mucositis is the side effect from total body radiation previously received and the doses of Methotrexate. By Day 10, whatever the severity of mucositis she has should not get worse. However the mucositis will not be able to get better until engraftment and healing blood cells are produced.

One thing that is very important to the staff is to keep the pain that Ashtyn will experience to a minimum. She is beginning to feel pain in her throat as mucositis is becoming apparent. The severe pain in her feet continues to be a side effect from the drug Cyclosporine, which is also used to minimize graft versus host disease. The goal is to keep pain under control rather than try to “play catch up.” It is much easier to manage pain if it is not allowed to get out of hand. A morphine patient-controlled analgesia (PCA) pump will soon be started. The idea of the PCA pump is to give Ashtyn control of when she gets morphine. She can push a button any time she is feeling pain increase. The pump will allow her a maximum of one push every 10 minutes with an hourly maximum dose. The doctors can always increase or decrease the maximum morphine dose depending on how well her pain is being controlled. Her oxygen saturations will constantly be monitored while on morphine because of the risk of shallow breathing and decrease of oxygen in her blood.

I wrote a post on April 26th called “Opposition Is Not A Bad Thing.” The medications given to Ashtyn are saving her life. However, so many of the medications and treatments have side effects. It has also been fascinating to observe that for everything “bad” that happens, something good always comes about. I noticed that early on when Ashtyn was most sick. On February 14th I wrote the post, “There Is No Such Thing As A Bad Day.” I stand by what I wrote in those previous posts:

I’ll take the “bad” opposition to enjoy the “good” opposition any day.

“There is no such thing as a bad day; just bad moments that we choose to take with us all day long.”

Today Ashtyn was able to have a smooth day without any surprises. She had her home health nurse visit without any obligation to do so other than to raise her spirits. During the evening she had one on one time with her dad. What 12 year old gets five hours of one on one time with their dad with very little distractions?

I was also able to enjoy one on one time with Ashtyn. What mom gets hour upon hour, day after day, one on one time with their 12 year old daughter? I was also able to spend time with a dear friend at the pool and spend time with my three other children worry free.

Life is Good.

Ashtyn's home health nurse making her smile

With Rain

Post Transplant DAY 1: All paths are crossed for a purpose.

Ashtyn woke up feeling decent and had a rather uneventful day. Uneventful is wonderful. Even though she doesn’t feel as well as she would like, she looks good. Today she spent most of the morning and afternoon sleeping. During the evening she watched movies while her dad rubbed her feet. Twice a day she receives an anti-rejection medication called Cyclosporine. She has had horrible foot pain as a side effect. Her feet feel as if she had just walked several miles in the tightest fitting shoes. Throughout the afternoon and evening she was given Oxycodone and Tylenol to help with the pain. Before going to bed for the night they tried a dose of morphine which really did the job. She fell asleep pain free.

Ashtyn’s mouth is beginning to show signs of mucositis with a greenish/white tongue and reddened throat. Her tongue is also beginning to have ridges on the edge instead of being smooth. Four times a day she swishes different mouthwashes to help control mouth infections and hopefully lessen the mucositis to some degree. Though there are signs that mucositis will soon be rearing its ugly head, she ate fruit loops for breakfast, 1/4 of a cup of noodle soup for lunch, and 1/2 serving of Top Ramen for dinner. She is getting IV nutrition, TPN and lipids, to make up all the nutrients she needs.

Day one is behind us. It was a good day. We will take each day as they come and continue to see our blessings in all things.

One of the most precious blessings during Ashtyn’s battle with cancer has been the interactions we have had with people. We have been able to interact with many inspiring and loving people, through email, messages, and visits. Two of these interactions happened in the last couple of days.

The first was with Julie. She wrote a message on Facebook, “Hi Ashtyn! I just saw your story on KSL. My little boy is here at the hospital waiting for a new heart. We learned about him just a couple of weeks before you learned about your cancer.” Julie and I decided to meet at church on Sunday and then spent over an hour talking in Ashtyn’s room. Monday, Julie and I ate lunch and dinner together in the hospital’s family lounge and talked as if we had known each other forever. Ashtyn was facing her bone marrow transplant the following day and Julie didn’t know if her son Zack would live long enough to receive a heart transplant. On Tuesday morning, as Chandler was getting ready for surgery to donate his marrow, Julie found out they had found a perfectly matched and sized angel heart for her son. Our children were diagnosed the same month with life threatening health problems and were both getting a transplant the same day. Her son will be in the hospital for close to the same amount of time Ashtyn will be in the hospital. Once home they will both experience the same “bubble boy/girl” precautions and will forever share their transplant birthday on June 11th. Tonight I received a text from Julie. “I know it’s late. Hope I don’t wake you! Just wanted to send my love and let you know I’m here if you need me. Sending prayers for a restful night your way. xoxo.” Oh how that warmed my heart.
(Zack’s facebook link https://www.facebook.com/zacksbiglittleheart)

The second interaction I had was last night. I went to dinner with a few of my girlfriends for a girls night out. (“Women thrive both emotionally and physically from close friendships with other women. These bonds are important for female well-being and livelihood.” UCLA study) The night built me up. Not only did we eat yummy food with great conversation, I was able to meet Kathy. Kathy’s 7 year old, Alex, was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma, a tumor located in the middle of the brain stem) in November. He passed away April 11th. The ladies and I sat at the restaurant table for four hours talking and talking and talking, the way only girls do. I was so impressed and touched by my friends’ love for each other and also by Kathy’s tender faith and strength.

My heart overflows when I think of all the interactions I have had with family, friends, neighbors, staff members, and strangers since Ashtyn has been diagnosed with cancer. A lesson I have learned is that all paths are crossed for a purpose. Interactions and relationships that may seem random are in fact there to bless our lives. I have instantly felt connections with so many who love and support Ashtyn. I can’t possibly think we are strangers. I can’t possibly think those who are and have been in my life, or are a part of Ashtyn’s Army, came about from a random coincidence. I can only assume that the people we interact with on earth are those we interacted with in heaven. What a blessing you have been in my family’s life. That is the way God intended, for His children to take care of each other and be instruments in His hands to bless others. I have learned the importance of sharing my life with others as Julie and Kathy shared their life with me. I know Ashtyn is where she is today because of all those who have come into her life with love and support. Her army. No matter how dark the world may seem, I think there is more good than bad. I see it every day.

“I know that relationships are not just serendipitous happenings or coincidences. All of these events happen for divine purposes. God truly blesses the details of our lives. These interactions and relationships, which might seem random in the moment, are ordained to bless and perfect our lives.” John Pontius

Happy Bone Marrow Transplant Birthday!

IV for surgery

Chandler arrived at the hospital with Jason. I met them in pre-op while he was getting ready for surgery. Chandler was calm and completely fearless. I became a little nervous when I found out that Chandler had woken up feeling sick. He had a sore throat, body aches, and a slight fever of 100.4. I wondered if it would affect him during surgery or the stem cells he was giving to Ashtyn. Before checking in, Chandler prayed that he would start feeling better. He didn’t want them to say he couldn’t do the surgery. Chandler was not at risk so the doctors weren’t concerned. The surgery took a little over an hour. They poked both sides of his lower back with a large needle and obtained 550 ml of fluid from his bone marrow. Chandler woke up with back pain but it was soon controlled with Oxycodone and Tylenol. He also woke up not feeling sick anymore. “I feel perfectly fine.” I checked his temperature and indeed it was normal. Chandler truly enjoyed recovering in the post op clinic because “they take care of you really well.”

and he's off!

he's ready for surgery

This isn’t the first or last time Chandler will change the world for good.

Chandler’s surgery was at 8 am. By 9:30 a.m. he was relaxing in the post-op unit. At 12:30 p.m. his bone marrow blood had been processed with the plasma filtered out and was in a bag ready to be infused into Ashtyn. I pushed Chandler in a wheel chair upstairs to Ashtyn’s room. The room quickly became full with staff members to express congratulations and to sing “Happy bone morrow transplant birthday to you.” The staff then presented a few gifts. One of the things given to Ashtyn was a t-shirt that said, “Bone Marrow Transplant Recipient.” Chandler got a t-shirt that said, “Bone Marrow Transplant Donor.” On the front of each t-shirt was written, “A Gift Of Love.”

now thats a bandage!

Done with his donation procedure

Thats the perfect bag of Chandler's bone marrow

happy bone marrow birthday to you

The marrow transfusion went into Ashtyn's central line fairly quickly and without a problem. A few family members came to celebrate with us including Ethan and Morgan, my two younger children. There was a happy and light spirit in the room. By 3 p.m. everyone left. Chandler went home to rest and play XBOX. Ashtyn stayed in the hospital and took a nap.

Today was a big day. The next big day we are waiting for is Engraftment Day. We will all be watching for signs of engraftment which usually takes 14 to 21 days after the transplant. Once engraftment occurs, Ashtyn will begin to feel better and will be on the road to going home. Engraftment is when Chandler’s stem cells start to grow and make healthy blood cells in Ashtyn’s body. Each day Ashtyn will have blood tests while waiting for the donated cells to engraft. A complete blood count (CBC) test will show the kinds and numbers of healthy cells in her body. The types of blood cells that are counted to measure engraftment are neutrophils, which are a type of white blood cell that are important for fighting infections, and platelets, which help control bleeding. An absolute neutrophil count (ANC) of 500 or more for three days in a row is a sign of engraftment. A platelet count of 20 to 50, without a platelet transfusion, is a mark of platelet engraftment.

the count to engraftment

The staff and bone marrow team use a number system to keep track of days after the transplant. Transplant day was Day 0. The day of engraftment will be a day of great celebration and gratitude. Each day we will pray for a quick and smooth engraftment. The transplant team gave Ashtyn a calendar to tape on her wall so we can keep track of what day post transplant we are on. It is a tradition that people place bets on what day they think Ashtyn will engraft. The name of those who guess is written on the predicted day. Whoever wants to can bet one dollar and place it in an envelope below the calendar. The winner gets recognition, Ashtyn gets the money. Four days ago, when Ashtyn and I were driving to the hospital to be admitted for the transplant, she said, “I think I am going to come home on July 14th. Actually, I think it will be the Sunday that is closest to July 14th.” I looked at my calendar. “July 14th is a Sunday.” She said, “Well then that’s the day I think I will be going home.” Ashtyn guesses she will engraft July 10th and will go home on July 14th. What’s your guess?

a gift of love

my brave donor and recipient  

Ashtyn felt fairly well today. The night before her transplant she threw up her NG tube. She no longer has a tube and is no longer getting tube feedings in her stomach. Though her nausea has decreased from yesterday, she doesn’t have an appetite to eat much so IV nutrition (TPN and lipids) will be started. Her ANC is currently zero and will remain that way until engraftment. To help prevent infection, she was started on an antibiotic called Cefepime for bacterial infections and Amphotericin B for fungal infections. It is just a matter of days before mucositis will start affecting her. In February Ashtyn had severe and extreme mucositis. Every day we pray that her mucositis will be less than it once was. Every day we pray that she will be safe.

D&C 122:7 “Know thou, my son, that all these things shall give thee experience, and shall be for thy good.”

Chandler and his bone marrow infusing into Ashtyn

She Is Ready for the Transplant

Ashtyn has finished her second day in the hospital finishing up her preparation for her bone morrow transplant that will occur tomorrow. She is experiencing the effects of her eight previous radiation treatments and does not feel well. Nausea comes and goes. Sometimes it’s a mild, lingering feeling. Other times the nausea comes as an intense wave. All in all, she has a generalized “icky icky” feeling. Her will-power is impressive. Most of the time she can breathe through the nausea as I sit behind her with one hand on her forehead and one hand on her stomach. She has only thrown up twice in the last two days. She continues getting nutrition through her NG tube in the form of formula. The longer she can tolerate feedings in her stomach the better.

Supporting her with what she needs.

Medications she is currently taking include: Prevacid and Reglan to help with digestion. Dexamethasone, Ativan, Benadryl, Phenergan, and Zofran to help with nausea. Flagyl to treat her current C-Diff diagnosis. Acyclovir to keep her cold sore virus from flaring up. Mesna to help prevent damage to her bladder from the chemo that was given. Pentamidine was given to help prevent a certain type of pneumonia seen in immunocompromised patients. She also received a high daily dose of the chemo drug cyclophosphamide for two days. A transfusion of IVIG (intravenous immune globulin) was given which is a collection of antibodies that may help to prevent some viral and bacterial infections. Cyclosporine is a medication she gets to prevent rejection of Chandler’s new immune system. It will be given to Ashtyn for roughly a year and stopped when there is clear evidence that rejection is no longer a threat.

In about five days she will start feeling the complete effects of the radiation, chemo, lack of marrow, and absence of white blood cells in her body. The doctors and nurses will spend their time giving supportive care to prevent and treat infections, side effects of treatments, and complications. They will deal with side effects of medications, radiation, chemotherapy, and neutropenia (low white blood cells). They will support her while she is deficient in nutrition, experiences pain from mucositis, deals with high blood pressures from excess fluid, and other possible issues with her lungs related to fluid and/or narcotic effects. They will give red blood cell/platelet transfusions and monitor for reactions. Medications will be given to try to manage bacterial, viral, and fungal infections, nausea, transplant rejection, pain, liver stress, and high blood pressure. They will give care in multiple ways as we all wait for her body to accept Chandler’s stem cells and build a functional marrow producing the healthy blood cells she needs.

Done with radiation 

Last Chemo!

I will communicate with hospital staff and try to be in tune with her needs. I will spend my time taking her to the restroom often, helping her with mouth care four times a day, giving her a bed bath and keeping her lotioned once a day, and making sure her room is clean and hands are washed. I will lay with her, tickling her arms, face, stomach, and back.

Ashtyn will watch Disney movies, listen to calming music and the audio book “The Candy Shop War”, and sleep. She will spend her time being patient while she endures the things that lay before her. I sense a powerful inner strength about her. We feel peace that she is ready and has all the tools she needs.

D&C 84:88 “And whoso receiveth you, there I will be also, for I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up.”

Last night at home

First day in the hospital 

What is a Bone Marrow Transplant

Bone marrow is a spongy tissue found inside of bones where all of the blood cells are produced. Every type of blood cell in the marrow begins its life as a stem cell. A stem cell can be called a “parent cell” because it divides and forms the different cells that make up the blood and immune system. Stem cells produce white blood cells that fight infection, red blood cells that carry oxygen, and platelets that are clotting agents.

Ashtyn has a high risk, rare leukemia. She was very blessed the chemotherapy used during her 2nd round in mid-March was effective and killed all her cancer cells. Though the cancer is gone, there is always the risk that the cancer will come back (relapse). With each round of chemotherapy, cancer cells become more resistant making it more difficult to kill them if they do come back. If Ashtyn were to relapse, there is no guarantee that the chemo would completely kill her cancer again. In order to do a bone marrow transplant, a patient should be 100% cancer free. Since Ashtyn is cancer free the idea is to do a bone marrow transplant now to minimize the risk of relapse and provide Ashtyn with the best chance for a long-term recovery.

The idea of a transplant is to replace someone who has unhealthy marrow with marrow from a healthy donor. Chandler, Ashtyn’s 14 year old brother, had a blood test in February and was found to be a perfect 10/10 genetic match for Ashtyn and will be donating his stem cells to her. Each sibling has a 25% chance of being a match. Only 25 to 35% of bone marrow recipients are matched with a sibling. We are very blessed. The transplant is the transfer of healthy stem cells from Chandler to Ashtyn.

In two days (Tuesday) Chandler will go under general anesthesia in an operating room where his stem cells will be collected from the bone marrow in his hip bones. A large needle will be inserted into the back of his pelvis and marrow will be withdrawn. After the procedure Chandler will experience some discomfort in his lower back/pelvis for a few days, but he will go home that day. There are no long-term effects of the procedure or donation on Chandler.

A bone marrow transplant is a difficult procedure to go through. Ashtyn received eight rounds of total body irradiation June 4th- June 7th. She is now receiving high doses of chemotherapy June 8th and 9th. The purpose is to eliminate whatever bone marrow and stem cells she has left and make room for the new marrow to be transplanted. On Tuesday June 11th, the stem cells from Chandler will be put into Ashtyn through her central line like a blood transfusion. The stem cells will then find their way to Ashtyn’s marrow and mature into different blood cells. “Engraftment” occurs when Chandler’s stem cells begin reproducing enough new blood cells that they are measurable in the peripheral blood. Engraftment usually occurs between 15 to 30 days. Engraftment day is a huge day for Ashtyn. She will physically begin to feel much better when engraftment occurs. When engrafted, her immune system will be Chandler’s immune system. Her cells and blood will be Chandler’s cells and blood. They will have exactly the same blood, 100% DNA matched.

Supportive care is needed while Ashtyn has an ineffective bone marrow, waiting for her new marrow to mature. Antibiotics, anti-fungals, and antiviral medications are given to help prevent infection. Blood tests will be done frequently to check medication levels, blood counts, signs of infection, side effects, and a host of other things. Red blood cell and platelet transfusions will commonly be done while Ashtyn’s marrow is unable to produce cells and as Chandler’s marrow is maturing enough to do so. Nurses and doctors will also monitor Ashtyn’s vital signs closely and strictly measure the fluids she receives and puts out. Great effort will go into providing the most protected and sterile environment possible. Ashtyn will not be allowed to leave her room. Everyone will wash their hands meticulously. Physical therapy will help Ashtyn exercise a few days a week.

There are quite a few complications and side effects that can occur with a bone marrow transplant. Here are some of the things you can pray will be minimal for Ashtyn: Infections, mouth sores, mucositis (inflammation of the mouth and GI tract), nausea, vomiting, pneumonia, high blood pressure, low blood pressure, respiratory distress, blood transfusion reactions, graft failure, graft vs. host disease (when Chandler’s immune system attacks the tissue of Ashtyn’s skin, liver, or digestive tract), and liver, kidney, or heart damage.

When Ashtyn’s absolute neutrophil count is above 500 for several days, if she is free of infection, and if she is able to take necessary medications by mouth, she can go home. It will be required that she stay within 30 minutes of Primary Children’s Hospital in case of an emergency for at least 100 days after the bone marrow transplant. She will also return to the outpatient clinic frequently for blood work, exams, and potential blood transfusions. As time passes after the transplant, the frequency of clinic visits will decrease. If a fever ever arises, Ashtyn will be admitted into the hospital for antibiotics until the fever is gone. We are grateful to live 20 minutes from the hospital. I admire the strength of families with bone marrow transplant kids who live further than 30 minutes from Primary Children’s who must relocate for 100 days to ensure their children are safe.

Ashtyn is on a very restricted “antimicrobial diet” and she will continue to be on that diet for several months. She is not allowed to eat certain cheeses, deli meat, deli or restaurant food, uncooked herbs or spices that are added to food after cooking, bleu cheese, commercial salsa, certain raw vegetables, fruits, berries, raw nuts, soft-serve frozen yogurt, ice cream, milkshakes, frosties, slurpees, snow cones, and movie popcorn. She has to have individual, single-serving containers of things like butter, mayonnaise, chips, cookies, candy, and anything else that is bulk, typically left opened, and used more than once. If a food item is cooked or opened and not eaten within 30 minutes, the remainder of the food or drink must be thrown away. Anything that is cooked must be heated to 165 degrees to assure it’s safety.

To fully recover from a bone marrow transplant takes a while. It will take months for Ashtyn to regain her energy level and a minimum of 9-12 months for her immune system to return to its normal function. She will not be allowed to return to school, crowded events such as church, movies, parties, or restaurants, or to swim in lakes or pools until her immune system shows significant signs of recovery.

As you can see, the next several weeks and months have the potential to be very challenging and stressful. Even though there are many reasons to worry or be scared about what might or could happen, our family still is experiencing the peace that has come to us as we know God is watching over Ashtyn. He has been in charge from the moment she was diagnosed, and long before that. The prayers and support you continue to offer on our family’s behalf are physically and spiritually felt. We feel immeasurable strength from all you continue to do for us. With your continued prayers and God’s loving care, it is all going to work out.

Radiation Week

Monday followed a pattern that Ashtyn and I have become very used to. It was unpleasant and tough, then enjoyable and fabulous. It started out at noon when we went to Primary Children’s Hospital for a check up, final transplant teaching, and paperwork. By 1 pm we had not been seen by the transplant team. I informed the nurse that we needed to be at the Huntsman Cancer Hospital at 2 p.m. for measurements. At 1:30 we finally met with the transplant doctor to start the paperwork and transplant discussion. By the time we got to Huntsman, we were 20 minutes late and because of that were pushed to a 4:30 p.m. appointment. They were kind to get Ashtyn a room where she slept while waiting.

Trying to align the leads right over her chest

A few days earlier, Ashtyn went to Huntsman where measurements were done for her upcoming radiation treatments. From the measurements they made lead lung protectors. Ashtyn is getting total body radiation except for her lungs, and the lead protects her lungs from damage due to the radiation. The goal for the Monday appointment was to align the lead lung protectors directly and perfectly over Ashtyn’s lungs. Her skin would then be marked so that, with each radiation treatment, they would know where to place the lead. Ashtyn was to stand on a platform, perfectly still, back straight, with a saddle between her legs for “support”, holding onto handles at the side of her body. The process: The lead plates were positioned in front of her lungs. Everyone would leave the room, an Xray was done, and we would go back into the room. Ashtyn leg’s were blue from poor blood perfusion so I would rub and move her legs around as she stayed strapped to her standing position. After about five minutes the Xray would come back showing that the plates were not perfectly positioned. The lead would then be adjusted, everyone would leave the room, an Xray done, and we would go back into the room. This process went on for 1 1/2 hours when normally it takes 30 minutes. Ashtyn stood with true strength during a very difficult task. At one point I could see the misery in her eyes. “Ashtyn, if you want to cry, you can.” She responded, “I will cry when this is over.”

By 6 p.m., after countless Xrays and lead repositioning, they were still unsuccessful. The concern was that the next morning Ashtyn was to come in for her first radiation treatment and the lead needed to line up perfectly by then. However, Ashtyn had been enduring the procedure long enough and she had a BBQ that was just starting. Ashtyn left the hospital feeling that the day was a waste and she was very worn out.

Ashtyn with friends

Before transplant BBQ

We arrived 30 minutes late to her pre transplant BBQ. It didn’t matter. The greeting from friends, family, neighbors, and strangers was enough to help us forget our day. Ashtyn sat in the middle of the grass on her chair, and spent 2 1/2 hours surrounded by a lot of love. How do I express in words my appreciation to those who took time out of their evening to come to the party and show such love and support? How do I express my gratitude to all those who were unable to come but care so deeply for Ashtyn and keep her close in their hearts? We know this would be a much more difficult experience if we didn’t have all the thoughts, love, care, and prayers that we get from you.

Total Body Radiation Front Side

Total body Radiation Back side

Tuesday was the first day of Ashtyn’s total body radiation treatment. We arrived at 7:30 a.m.. The first task was to succeed in getting the lead lung protectors positioned properly, which had been such a struggle. Ashtyn stood straight and still as she had done the day before. The lead plates were lined up in front of her chest, an Xray was done, and we were thrilled when it showed that the lead matched up perfectly with her lungs. First try! Tender mercy. She then turned around to line up the lead to the back side of her lungs. It took only two tries to make it perfect. The radiology techs were very pleased that it went much smoother than the previous day. It was then time for Ashtyn to get her first radiation treatment. It is difficult to explain the fatigue that comes from all Ashtyn has to go through. To stand still for 20 minutes is very difficult and feeling even the slightest of nausea makes it that much harder. I left the room leaving her alone watching “Finding Nemo”, strapped in a standing postion for 15 minutes as her entire front body received radiation. I silently prayed that God would help her. When the 15 minutes were up, we were able to go back in the room as she took a break to prepare for another 15 minutes of radiation to her back side. “How was it Ashtyn? Are you ok?” I asked. She responded, “It wasn’t as bad as I thought it would be. I felt angels helping me. I could have stood for longer.”

Moroni 7:29 “Have miracles ceased? Behold I say unto you, Nay; neither have angels ceased to minister unto the children of men.”

It is now T-minus 5 days until Ashtyn’s bone marrow transplant. She is on her third of four days of total body radiation, the purpose of which is to kill her bone marrow. Each morning she goes to Huntsman Cancer Hospital at 8 a.m., dresses in a gown, is strapped to the contraption for front body radiation for 20 minutes. She is then turned around and stands for another 20 minutes to do her back side. Afterwards I drive her home where she sleeps and relaxes in bed. At 4 pm we head up for another radiation treatment, two hours later we drive back home, and she rests in bed the remainder of the night. Nausea is a common side effect people get with radiation. To help, I give her anti-nausea medications before heading to the hospital and also throughout the day. Other than being very tired and nauseated off and on, she has tolerated radiation well. She is the bravest girl I know.

*Please pray that she will continue tolerating radiation with minimal side effects.
*Please pray for a safe bone marrow transplant.

Ashtyn was given a “heart attack” from her youth group Tuesday. So sweet of them.