The Siblings Side

Chandler and Suzanne

CHANDLER (14 years old): When my mom and Ashtyn are in the hospital, I don’t get to see them as much. I don’t like it. It feels like there is an emptiness. It feels different. You can tell someone’s not there. The family’s not whole. Sometimes I can tell a difference even when I’m not thinking about them being gone. It’s sad not having my mom and Ashtyn around. I just try to ignore it and play XBOX.

It feels really weird that Ashtyn has cancer. I didn’t expect it. I never thought it would happen. Some people have cancer that runs in their family but no one in my family has had it. It’s really weird. It has affected my school year pretty bad. My grades have suffered. I don’t have my mom to help me. I have felt sad and depressed and have not wanted to do homework. I’m just really sick of school. When my mom is home it seems like things are almost back to normal. It feels good having them home. Our family feels whole when they are home.

I miss my mom and sister most of the time but I’m spiritually stronger. I rely more on God now for help with everything. My prayers are more meaningful. I know God can do anything. I pray for help to get through this. He is blessing me to have strength. I feel better because of Him. He comforts me. I don’t freak out when there are trials. I’m calm about it. I have been blessed with comfort. When I don’t feel comfort I pray and then I feel better. I don’t worry about Ashtyn cause I know she can do it. I’ve always known everything will be alright. I’m glad to be the bone marrow donor. I’m happy to do it. I don’t know why people say it’s brave of me because it’s not a big deal. In my perspective, even though I don’t know much about it, anyone should be able to do it. Life with cancer is different. I think it will change my life in the future but I don’t know how.

Morgan Ice Skating

MORGAN (10 years old): When I first heard that Ashtyn had cancer my mind was blank and my heart dropped. I didn’t know what was going to happen. Ashtyn and my mom were in the hospital. I wasn’t used to my mom and sister being gone. I didn’t see them for a long time. I really missed my mom not kissing me goodnight or taking me to school. I really missed Ashtyn. I thought about her all the time. I wanted to see her really really bad. I asked her to Facetime me but she didn’t want to. I didn’t understand why. I now understand that she missed me too much and didn’t want to be reminded of home. She didn’t want to think about the outside world because it was too painful. It must have been harder for her than it was for me because I was home and she wasn’t  When we used to fight it was a waste of time. I shouldn’t have fought with her. I’ve been thinking about her needs more. When she asks me to get her water or food it gives me the opportunity to help her in any way I can. I am trying to help. I really like serving her.

When Ashtyn got cancer everyone at school would ask me how she was. On the first day I went to school, one girl kept crying and bawling. Everyone kept asking me if I thought Ashtyn would live. It was weird. I don’t know why they would ask that because I’ve always had faith that she’ll be OK.

I’m glad my mom and Ashtyn get to be home for awhile. I like knowing that when I come home from school I am coming home to them. I like that I get to see them everyday. I like having my mom in the house. I like that she can say goodnight to me every night.

During this trial I have been keeping my faith, reading my scriptures, and praying every night. I’ve been feeling the Spirit more and connecting to God more. I’ve been thinking about the song “If the Savior stood beside me.” If the Savior was in every room that I am in or anywhere that I am, I just imagine Him standing there. What would I do? Would I do the things I do? Would I say the same things? Would I act differently? I’ve been feeling the Holy Ghost and what I should be doing. If I am laying around watching TV or something, I wonder if there is anything else I should be doing around the house instead of watching TV.

I’ve been doing better in life spiritually and physically. I’m grateful that nothing really really bad has happened to Ashtyn. Really bad things could have happened to her, and they haven’t. I am grateful I have other siblings that I can play with when Ashtyn doesn’t have energy to hang out. I’m grateful for other people around us that care about our family. I feel really blessed. Cancer has helped me look at the positive things instead of the negatives. I am grateful for what I have.

Ethan at Nickel Mania

ETHAN is 6 years old. I can only imagine what he has gone through and what is in his tender heart. Being the baby of the family, he was my shadow, my buddy. I’m a stay at home mom. Wherever I went, Ethan went. I was always there in the morning to make him oatmeal and at his bedside at night to kiss him goodnight. What was it like for him to all of a sudden lose all that he grew up to know? He is a young boy that doesn’t have many words to express his thoughts and feelings. I do know he longs for one on one time with me. He made a list of activities and asks me often when we get to do the next thing on the list. His list included, Chuck E Cheese, Nicklecade, Classic Skating, Ice Skating, miniature golf, Planet Play, and the movies to watch Cloudy With a Chance of Meatballs 2. So far we have done five of the seven activities and have had a great time together. When talking about cancer and the long hospital stay, the only thing he says is, “it makes me sad.” He has never been outward with emotions when he gets hurt or is sad. Ethan has never been a crier and rarely makes a fuss. Possibly to a fault, he keeps his sadness and pain to himself. If he skins his knee, he’ll hold it, fight through the pain, and then move on. When he gets an immunization shot, he might say “ouch” and that’s about it. Though he is quiet and brave, I can see pain by just looking in his eyes. When he gets hurt physically or emotionally, his eyes cry and his face drops. Ethan has always been a boy with a constant smile and a sparkle in his eyes. When Ashtyn and I got home after two months in the hospital, I noticed his pure and bright smile wasn’t there like it once was. I could sense he was weighed down. After being home for almost five weeks, I have noticed his heart has been lightened and his carefree smile is back.

While Ashtyn is the one who has to deal with the brunt of the challenge that cancer has brought, all four children are learning and growing through this experience. I am grateful for the faith and personal strength of each of my children.

On the Doorstep

Ashtyn has been home for almost five weeks and it has been wonderful. I can’t complain. It has been quite uneventful. What does she do all day? Normally, she doesn’t do much. She sleeps in, eats lunch, and relaxes in bed. In the evening she’ll usually sit on the couch and watch a few episodes of Chopped. Sometimes she will walk up and down the stairs for exercise, play the piano, hang out with her siblings playing Rock Band, and make funny jokes with her pre-teen attitude. Sunday she went to my moms for our Mother’s Day BBQ. She is living a mellow life.

Friday we went to the hospital for her normal check up. On our way there we picked up two small pork salads at Costa Vida. Once settled in the clinic room, we opened our salads and began eating lunch but soon lost our appetites. Within a few minutes the doctor and bone marrow transplant coordinator walked in. Greetings were exchanged. I was then handed the pre-transplant schedule and plans were discussed on what to expect in the next couple of weeks.

SCHEDULE:
Friday May 17th: 11:30 a.m. Chandler gets his lab work done with a medical history and physical examination. He’ll also meet with a child life representative and have a conference with the bone marrow transplant doctor. Ashtyn will go to clinic for labs and chemo.

Monday May 20th: 9 a.m. Ashtyn will have a four hour neuropsychological evaluation followed by a pulmonary function test.

Tuesday May 21st: 8:30 a.m. Ashtyn and I will go to Huntsman Cancer Institute for a radiation consult and planning session.

Thursday the 23rd: 10 a.m. Ashtyn has a chest, abdomen, and pelvis CT scan scheduled. Afterwards she will have a heart Echo and EKG done, followed by a hearing test.

Friday the 24th: A bone marrow aspirate and biopsy will be done as well as a lumbar puncture with chemo.

Tuesday May 28th: 9 a.m.- 3 p.m. We will be educated every 30 minutes by different health care teams including physical therapy, nursing, dietary, pulmonary, social work, child life, and finance. We will also have a family conference with the bone marrow transplant doctors.

Wednesday May 29th- June 1st: Ashtyn will have radiation twice a day for four days. She will be admitted into the hospital around that time.

Chandler will donate his bone marrow around June 5th, the same day Ashtyn will receive it. Ashtyn is expected to be in the hospital about two months as her body accepts Chandler’s bone marrow and successfully produces a functional, cancer free immune system.

They also mentioned that surgery will be scheduled before the transplant for Ashtyn to get a new broviac central line. Because the current central line has recently been infected, they want to pull it out and place a new one to not risk going into a transplant with any type of infection or inflammation.

All that information was presented in about five minutes. Ashtyn began to cry with the disappointment and fear of the pain that is associated with a new central line placement. She no longer could eat her lunch. Simultaneously I was filled with emotions as I faced the reality that the transplant was at our doorstep. By the look on my face the doctor knew exactly what I was thinking. “It’s feeling real now that you have the schedule.” It was as if I am facing the monster of all monsters, the Goliath of medical procedures. I couldn’t help but feel nervous. There are negative things that could be dwelt upon, however the positives must be in the forefront. Ashtyn is greatly blessed to be clear of cancer enabling her the chance to have a bone marrow transplant so soon, or at all. Having Chandler as a matched sibling donor brings comfort. The faith and strength of Ashtyn’s Army has been and will continue to be an incredible blessing. Ashtyn has an excellent team of doctors and nurses caring for her and coordinating the transplant. Most importantly, we have the faith that God is watching over her. Nothing is better than that.

On the Doorstep

Ashtyn has been home for almost five weeks and it has been wonderful. I can’t complain. It has been quite uneventful. What does she do all day? Normally, she doesn’t do much. She sleeps in, eats lunch, and relaxes in bed. In the evening she’ll usually sit on the couch and watch a few episodes of Chopped. Sometimes she will walk up and down the stairs for exercise, play the piano, hang out with her siblings playing Rock Band, and make funny jokes with her pre-teen attitude. Sunday she went to my moms for our Mother’s Day BBQ. She is living a mellow life.

Friday we went to the hospital for her normal check up. On our way there we picked up two small pork salads at Costa Vida. Once settled in the clinic room, we opened our salads and began eating lunch but soon lost our appetites. Within a few minutes the doctor and bone marrow transplant coordinator walked in. Greetings were exchanged. I was then handed the pre-transplant schedule and plans were discussed on what to expect in the next couple of weeks.

SCHEDULE:
Friday May 17th: 11:30 a.m. Chandler gets his lab work done with a medical history and physical examination. He’ll also meet with a child life representative and have a conference with the bone marrow transplant doctor. Ashtyn will go to clinic for labs and chemo.

Monday May 20th: 9 a.m. Ashtyn will have a four hour neuropsychological evaluation followed by a pulmonary function test.

Tuesday May 21st: 8:30 a.m. Ashtyn and I will go to Huntsman Cancer Institute for a radiation consult and planning session.

Thursday the 23rd: 10 a.m. Ashtyn has a chest, abdomen, and pelvis CT scan scheduled. Afterwards she will have a heart Echo and EKG done, followed by a hearing test.

Friday the 24th: A bone marrow aspirate and biopsy will be done as well as a lumbar puncture with chemo.

Tuesday May 28th: 9 a.m.- 3 p.m. We will be educated every 30 minutes by different health care teams including physical therapy, nursing, dietary, pulmonary, social work, child life, and finance. We will also have a family conference with the bone marrow transplant doctors.

Wednesday May 29th- June 1st: Ashtyn will have radiation twice a day for four days. She will be admitted into the hospital around that time.

Chandler will donate his bone marrow around June 5th, the same day Ashtyn will receive it. Ashtyn is expected to be in the hospital about two months as her body accepts Chandler’s bone marrow and successfully produces a functional, cancer free immune system.

They also mentioned that surgery will be scheduled before the transplant for Ashtyn to get a new broviac central line. Because the current central line has recently been infected, they want to pull it out and place a new one to not risk going into a transplant with any type of infection or inflammation.

All that information was presented in about five minutes. Ashtyn began to cry with the disappointment and fear of the pain that is associated with a new central line placement. She no longer could eat her lunch. Simultaneously I was filled with emotions as I faced the reality that the transplant was at our doorstep. By the look on my face the doctor knew exactly what I was thinking. “It’s feeling real now that you have the schedule.” It was as if I am facing the monster of all monsters, the Goliath of medical procedures. I couldn’t help but feel nervous. There are negative things that could be dwelt upon, however the positives must be in the forefront. Ashtyn is greatly blessed to be clear of cancer enabling her the chance to have a bone marrow transplant so soon, or at all. Having Chandler as a matched sibling donor brings comfort. The faith and strength of Ashtyn’s Army has been and will continue to be an incredible blessing. Ashtyn has an excellent team of doctors and nurses caring for her and coordinating the transplant. Most importantly, we have the faith that God is watching over her. Nothing is better than that.

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.