Monthly Archives

April 2013

Easter Miracle

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After Ashtyn’s cancer cells didn’t respond to the hideous first round of intense chemo in February, I believed the cancer wouldn’t be killed with the second round of chemo either.  The second round included less intense drugs and up to this point, she had done everything the difficult way.  I simply didn’t think the A.L.L chemo regimen would work.  My thought was that the doctors would have to find a new batch of intense chemo drugs customized for Ashtyn that would be given over another month, and then her cancer cells would respond.  I didn’t want Ashtyn to fear or get frustrated if the second round of chemo didn’t work so I prepared her for that possibility.  I told Ashtyn from the time she started the second round of chemo that I didn’t think it would work.  I was wrong.  Completely wrong.  I have never been so grateful and happy to be wrong.

The results from the Friday bone marrow aspirate came back showing no cancer cells. None. I’m still in slight disbelief. I thought back to the many prayers that have been said for Ashtyn. In the post “Ashtyn’s Army” I wrote, “There are church congregations around the world remembering Ashtyn.  Her name has been added to prayer chains in different religions and is on the prayer lists at LDS Temples in many locations.  She has been enrolled under the special patronage of Our Lady of Lourdes in France and Illinois.  There are many families who pray for her morning and night.  Children include Ashtyn in their prayers daily. Fasting and prayers have been dedicated to her with her specific needs in mind.  Hundreds think of Ashtyn and hope the best for her.” I know for a surety that Ashtyn’s cancer would not have been killed by those chemo drugs had it not been for the faith of her Army.  Of that I am absolutely certain.

Where do we go from here?  The chemo killed all of the cancer cells however it also killed all of her normal white blood cells. Ashtyn’s body needs to produce white blood cells without new cancer cells returning.  The current round of chemo is complete other than one more drug that will be given in four days.  In the meantime she will stay in the hospital as her bone marrow starts making white blood cells.  Now that her bone marrow is not full of cancer cells, there is plenty of room for new cells to grow.  In two weeks the doctors suspect that she will have a steady incline of white blood cell production and will be able to go home for at least a week to further recover.

From years of cancer research and experience it has been shown that once cancer is gone, if treatments stop immediately the likelihood of cancer returning is significantly high.  Therefore the fight must go on.  In roughly three weeks Ashtyn will hopefully have built up a decent amount of white blood cells.  Her absolute neutrophil count (ANC) will hopefully be near 750 to 1000.  She will then have a bone marrow aspirate to determine if her bone marrow produced all healthy cells or if it produced more cancer cells.  If there is still no sign of cancer, a new intense chemo regimen in preparation for a bone marrow transplant will be started.  If her body makes more cancer cells, they now have an idea of what chemo works.  In that case she would go through more rounds of chemo until she is in remission.  Remission is when there are no cancer cells in the presence of a normal amount of white blood cells.

How does Ashtyn feel knowing that currently she has no evident cancer?  The one word she used was “relieved.”  She is relieved, rejuvenated, and happy.  She is no longer climbing the walls to get out of the hospital.  Knowing that she is “kicking cancer’s butt” and that “in a few weeks I get to go home for longer than just a couple of days” makes her content.

Ashtyn is feeling the best she’s felt in two months.  With the steroids she has to take, her appetite is good and she is enjoying food.  Other than the IV antibiotics she has to take during the day, she is not hooked up to an IV pole.  Freedom!  She is steady on her feet and can walk around the room and to the restroom without me by her side.  Most of the day she is wide awake with very little napping.  She does have pain in her legs and stomach probably associated with past chemo drugs.  The pain is controlled easily with medicine.  Her hematocrit, the volume percentage of red blood cells, is very low which affects Ashtyn’s energy and endurance. She is in bed a lot and is constantly bored but it’s “better than being way sick.”

Kids at Easter in the Boardroom

Kids at Easter in the Boardroom

We brought Easter to the hospital Sunday.  Jason and Chandler spent time with Ashtyn during the day.  I went to an hour of church and then home to cook breakfast.  We cooked Belgian waffles, Danish pancakes, fresh hash-browns, bacon, and a huge bowl of fruit.  Orange juice, lemonade, syrup, powdered sugar, and Nutella were packed up.  At 2 pm we headed to the hospital.  I received approval from the doctors to allow Ashtyn to leave her room and spend time with her family in the boardroom right outside the doors of the cancer unit.  Jason and Chandler hid plastic Easter eggs all over the boardroom and Easter baskets in the cupboards.  After the food was set out on the table and the eggs were in place, Ashtyn left her room and walked into the boardroom with the rest of the kids.  As the kids filled their bags with eggs, Ashtyn sat on a comfortable chair and watched.  She had just received a chemo drug four hours prior and didn’t have much energy.  She wasn’t feeling very well so watching the action was good enough for her. After two hours of eating and talking, Ashtyn was ready to go back to her room. Stimulation is very exhausting for her.

Looking back at the last two months, the good has outweighed the bad by far.  We have had moments of great joy.  Ashtyn and I never get sick of each other and have really enjoyed the time we get to spend together.  There have been times we’ve laughed and had fun conversations with staff.  Visitors bring positive energy that is fun to feel.  Acts of service have touched our hearts and lifted our burdens.  When the outside world can be full of stress, commotion, and intensity, her hospital room is consistently peaceful, calm, and relaxing.  There is such an amazing feeling in her room that is so enjoyable to bask in.

We are full of joy and gratitude that the recent chemotherapy has killed Ashtyn’s cancer cells.  Thank you for your continual support.  Thank you for the thoughts and prayers you have given.

“Everything starts from prayer.” –Mother Teresa.  I believe that to be true.  What a difference prayer has made for Ashtyn during this illness.

Mother Teresa was overheard whispering to one that was terminally ill, “you say a prayer in your religion, and I will say a prayer as I know it. Together we will say this prayer and it will be something beautiful for God.”

Hindsight is 20/20 and I Like What I See

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A month ago, on March 3rd, I wrote a post titled “Faith.” In it I wrote, “when I first heard that Ashtyn had cancer some thoughts came to my mind. ‘Suzanne, this isn’t yours. God is the orchestrator. Hand it over to Him.’ Gladly. I instantly handed over my daughter to God knowing He was completely aware of her and had a plan. I was not in charge. I trusted God completely. I had faith in His will.”

Hindsight is 20/20 and I like what I see.

First: Ashtyn went through a very difficult round of chemo in February. From the February 20th post, “Relying on What I Know,” I wrote “today the doctors informed me that she has the worst case of mucositis, the worst side effects from medications, and the worst complications from chemo.” After all she had gone through, her cancer cells were not affected at all. Cancer was still in full force. Was all the suffering a waste of time? No it wasn’t  Was the entire month of February worthless? Not at all. Ashtyn grew a lot from the experience as she wrote in her post “From Ashtyn.” She is also better prepared for what may come in the future. When she was first diagnosed she cried, “I can’t do this!” My response was, “You can do this. You are strong, you just don’t know it yet.” After what she went through in February, she now knows she is strong. Today she mentioned, “I’m scared to do a bone marrow transplant.” The doctor and I assured her that after what she went through with the first round of chemo, she is completely capable of handling a transplant. She knows it’s true.

Second: At the beginning of March we prayed that Ashtyn would recover from the first round of chemo and be able to go to Disneyland before the next round. After prayers and fasting Ashtyn’s white blood cell count didn’t recover at all and there was no Disneyland trip. As I’ve said before, sometimes the answer will be “yes.” Sometimes the answer will be “no.” Other times the answer will be “yes, but not right now.” What a blessing it was to get a “not right now” answer. Now that I have more clarity, wouldn’t it be better to go to Disneyland cancer free right before the bone marrow transplant? That is now our hope. Hopefully in a few weeks Ashtyn will have a bone marrow aspirate that will show no new cancer growth and have an absolute neutrophil count of 1000. (Neutrophils are the white blood cells that fight infections.) At that point Ashtyn would be allowed to go to Disneyland as the doctors prepare for her bone marrow transplant. She would then return to the hospital rejuvenated physically and emotionally, ready to rock the bone marrow transplant. I ask for that to be our specific prayer for the next several weeks.

I am grateful I handed this cancer trial over to God. His vision is much more remarkable than what I would have come up with. His plan is much more merciful than what I could have provided. I am grateful He is in charge. He knows Ashtyn, my family, and my needs more than I do. “For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord.” Isaiah 55:8

In the midst of cancer, what if we would have turned our backs on God and refused His help? What if doubt replaced our complete trust in Him? What if negativity crowded out our peace? What if bitterness replaced our love for Him? What if fear replaced our faith? What if we hardened our hearts toward God preventing His merciful hand to affect our lives? What if we denied our Savior’s goodness not allowing Him to lighten out burdens? What if our hearts left no room for the comforting peace of the Holy Ghost? I shudder to think what life would have been like the last 2 months had we not had Their constant companionship and blessings.

2 Nephi 2:25 “Adam fell that man might be; and men are, that they might have joy.” I now know what that means. In our brightest moments and darkest hours, we can have joy. Our family has experienced that. We have had joy in our darkest hours. How? By simply having faith and trust in God with gratitude in our hearts. To know and be able to say what President Gordon B. Hinckley said. “Things will work out, it isn’t as bad as you sometimes think it is. It all works out, don’t worry. I say that to myself every morning. It will all work out. If you do your best, it will all work out. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. If we will put our trust in Him, if we will pray to Him, if we will live worthy of His blessings, He will hear our prayers.”

Just Another Day

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After Ashtyn’s second trip to the ICU exactly two weeks ago, I wrote, “from now on I will constantly be on high alert with her. My eyes are more wide open for when her body does something out of the ordinary. My heart is more open to when I feel things aren’t quite right.” That philosophy paid off, though there is always more to learn.

For the past few days there were slight and subtle changes in her health. Sunday her stomach started hurting her. She had chemo that day so I wondered if that was the cause. Monday her stomach continued to hurt off and on. Her heart rate started to increase ever so slightly. Tuesday her temperature was higher, though still within normal limits. Wednesday her heart rate was a bit high, temperature remained on the higher end of normal, but nothing to cause alarm.  Though she appeared stable, I felt uneasy.  I asked for them to test her for C-Diff even though there were no signs of it other than occasional stomach cramping. The test came back positive. I continued to be on edge and wondered if I should leave the hospital to take Chandler to dinner while Jason sat with Ashtyn. With tears in my eyes I voiced my concerns to a staff friend. I was reassured that she would be fine and would be looked after.

Thursday started out normally. Ashtyn slept in until 11 am. Upon waking up the staff informed her that she needed to drink 3 cans of rootbeer with contrast for a CT scan. Ashtyn was up to the task and started drinking at noon. By 1:45 pm the rootbeer was in her stomach and she was ready for her CT scan. I looked at her arms and noticed a mottled appearance. Mottling happens when blood vessels change in the skin causing a patchy appearance. I didn’t like what I saw. I pointed it out to the nurse who immediately took her blood pressure. It was 108/38. Not good. The “108” is perfect but the “38” should have been greater than 50. Little did I know that the wide spread in the two numbers is a beginning sign of septic shock and occurs when the blood vessels dilate in a response to illness. A high heart rate is another sign they look for in septic shock. Her heart rate was 130. I immediately posted on Ashtyn’s Army facebook page, “Prayers are needed for Ashtyn right now. She is showing beginning signs of septic shock with low blood pressure, high heart rate, and mottled look to her skin. What’s going on? Let’s pray to find out. Please pray that the cause of this illness will be discovered and all necessary actions will be done.”

The doctors started an infusion of 1 liter of fluids. Afterwards her blood pressure was lower. Wrong direction. They gave her another liter of fluid. In the meantime she needed to go to the bathroom. Since she had a decent top number on her blood pressure, I took her to the bathroom. She felt completely fine and got in bed afterwards. A few minutes later she looked at me, “Mom, I feel weird.” The resident was leaving the room. “Stop.” I told him. “She is feeling weird.” Ashtyn again said, “Mom, I am feeling really weird.” Her eyes rolled to the back of her head, she lost consciousness, and her lips turned blue. I asked the nurse and resident to call a code. They couldn’t find the code button because it wasn’t behind the bed but rather behind the med cart. I ran into the hall. No one was there. I ran down the hall. No one was there. I started yelling “Call a code! Call a code!” A code was called and then canceled before I got back to the room because, in the meantime, Ashtyn woke up and became alert. She was then watched over constantly by doctors until they were able to take her down to the pediatric ICU.

By 4 pm she was in the PICU and everything was calm. Additional antibiotics were started, IV fluid continued to infuse, and vital signs were taken every 15 minutes. Everything looked great. Her blood pressure was completely normal without the need for blood pressure medication. Why was her body able to maintain a good blood pressure at that point? Why were signs of vasodilatation gone? There was no answer to the questions. From then on out, her blood pressure remained normal the rest of the night.

Ashtyn PICUAshtyn PICU

How was Ashtyn during this entire time? Calm, quiet, brave, and she just went with the flow. Initially when she realized we were concerned about her blood pressure she said, “let’s just go to the PICU. I’d rather that than sit here and wait.” Other than that, she didn’t have a lot to say. Once in the PICU she just wanted me to sit with her and rest while all the staff did what they needed to do. She went on facebook and was excited that “Cloudy With a Chance of Meatballs” is coming out with a sequel. I had to leave the room for shift change, based on the PICU rules, and was gone from 7:15 to 8:00 pm. Ashtyn asked me to go to her room and bring back nail polish and The Cosby Show, 5th season. I got a few texts from her while I was gone. “They are going to see if I can do a CT scan.” “They are sending contrast down. Two cans of rootbeer.” Ashtyn truly was at peace the entire day, as if it was just another typical day at the hospital. Having a calm spirit makes all the difference.

At 9:30 p.m. Ashtyn was wheeled to the CT scanner to look for fungal infections that might be hidden. They did IV and oral contrast. Immediately upon completing the CT scan, a surgeon walked by the pictures and noticed right away that she has colitis. He came right into the room and informed me that colitis is dangerous, especially for individuals who have no white blood cells. Colitis is an infection and inflammation of the colon. The risk is that it could perforate, causing a hole in a portion of the colon, requiring surgery and a high risk of infection. His suggestion was for her to not eat for 10 days, rest the colon, and fight the infection with antibiotics. Ashtyn was so sad to hear she won’t be able to eat for awhile. We were looking forward to eating good food while watching LDS conference this weekend. Not eating will be tough and she will need lots of prayers for her stomach and colon this week.

Ashtyn CT Scan

What an amazing day. Miracles. Blessings. Tender mercies. I am grateful that Ashtyn’s unstable blood pressure became apparent right before heading down to the CT scan. I’m grateful it occurred in her room rather than in the halls. After fainting in bed, I am grateful Ashtyn regained consciousness. At first I felt dumb about calling a code. However the charge nurse assured me it was the right thing to do and to be grateful that Ashtyn pulled herself out of it. Once in the PICU, I am grateful her blood pressure remained completely normal. There is no explanation for that. I am grateful that the PICU nurse questioned the doctors, wondering if they still wanted the CT scan since Ashtyn was stable. Without the CT scan, we would not have known she has colitis. She would have been allowed to eat, which wouldn’t have been the best for her. During all of this, the staff on the floor called to tell me that there were new kids coming to the hospital and they needed Ashtyn’s room. “Are you kidding me? You need me to move all of our stuff out of her room to my car even though she will likely go back to the floor tomorrow? We have so much stuff but I totally understand the staffing reason. I will be right up.” So I started packing up her room. Before it was all packed up, I was thrilled to hear that another option was worked out and I didn’t have to move our stuff out of the room.

Ashtyn was blessed today. I am so grateful that she was diagnosed with colitis so she can now be treated properly. I am grateful for her calm spirit. I am grateful Ashtyn felt peace and comfort today.

Ashtyn’s Dreaming About Food

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From Ashtyn:

Friday  afternoon I got back from the PICU. I was starving but the doctors said that it would be best not to eat or drink for about a week. I was very upset and I thought I couldn’t handle not eating for that long. I picked up my phone and texted my Uncle Jared and asked him to give me a priesthood blessing. Jared came with my Grandma and Grandpa Hosenfeld. They gave me a blessing. He blessed me that with my faith I would be able to find ways to distract and control my hunger. Shortly after my stomach started to feel less hungry.  I have had a lot of stomach cramps but my hunger has been manageable. I know I can handle not eating because I got a blessing and prayers are being said for me.

Everyday I know I am closer to going home so it’s easier to be here. It’s fine being in the hospital. I’m getting used to it and I know I’m getting better. My mom keeps me busy. She talks to me and watches movies with me. My least favorite part is being away from family. Texting family members helps. It’s also hard being trapped in a room. My favorite thing about being in the hospital is being with my mom. I also like the staff. They are really nice. I like watching The Cosby Show. It’s funny. I also like watching Disney movies.

I’m not really hungry right now. I feel like something little, like a fruit snack, but not anything big. I definitely don’t think I will be able to eat for at least four more days. When I do get to eat again, these are the things I am looking forward to: Olive Garden, Arby’s, Little Caesars, KFC, In and Out, Cafe Rio, Rubio’s, Lone Star, Taco Time, Chilies, Sbarros, Pizza Hut, Red Mango, Quiznos subs, Wendy’s, Noodles and Company, Iceberg, Panda Express, and the Lion House. Grandpa Hosenfeld’s spaghetti and meatballs, Grandma Hosenfeld’s guacamole, orange chicken, and angel hair pasta. Grandma Poulsen’s macaroni salad and sloppy joes.

I’m grateful that being in the hospital is easier than it used to be. It’s going to be a hard year, but that’s ok.

Progress

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It’s 2:25 a.m. on Tuesday morning. I am sitting on Ashtyn’s comfortable electric blue square chair with my feet resting on my couch bed with a blanket over my legs and a pillow behind my head. Ashtyn is in her hospital bed, with the head of the bed elevated, in her PJ’s, pillows positioned perfectly, reading a book. It is quiet and peaceful. We are rarely interrupted at night other than midnight vital signs and 4 a.m. medications, blood lab draws, and vital signs. Even at 4 a.m., if we are asleep, the nurses will quietly do what they need to do and use a red light to see what they need to see. That is why we love nights. That is why we stay up late.

During the day it is rare to go more than 30 minutes without someone coming into the room. Whether it is nurses, techs, pharmacists, housekeepers, resident doctors, fellows, attendings, physical therapists, child life specialists, the yoga team, social worker, psychologist, or visitors, there are often people in the room keeping us company. That is why we love the daytime. Primary Children’s Hospital is a remarkable place to be with outstanding staff. We have been truly blessed to associate with such gifted and impressive individuals.

Much of today was spent preparing for when Ashtyn goes home. I suspect she will go home before the end of the week. Her ANC was zero again today, however she is looking and feeling well. She has not had anything to eat or drink for four days. On Friday she was very hungry. After prayers were said and a blessing was given, her hunger went away. How did she go from being very hungry with a large appetite all month to being completely content without food? A Miracle. Hunger has not been a problem. To keep up with hydration and nutrition, she has had TPN running continuously into her central line. TPN (total parenteral nutrition) is feeding a person intravenously, bypassing the usual process of eating and digestion. Ashtyn receives IV nutrition that contain nutrients such as glucose, amino acids, lipids, and added vitamins and minerals. Today the doctors allowed her to drink clear liquids such as broth, slushies, and apple juice. After 24 hours, if her stomach tolerates clear liquids well without cramping, nausea, or pain of any kind, she will be allowed to eat bland foods such as rice, toast, applesauce, and mashed potatoes. Slowly she will work her way up to eating normally. Ashtyn can even have TPN at home if necessary until she is eating 1500 calories a day again.

As always, the risk of getting an infection is high. I want to be extra vigilant and do all I can to keep her healthy. If the bone marrow transplant is to take place in several weeks, it is imperative that she remains infection and inflammation free. Today I arranged for my carpet and air vents to be cleaned on Wednesday in preparation for her coming home. Our dog is scheduled to be bathed and groomed and will thereafter be bathed every week. A large supply of disinfectant wipes will be purchased.

Yesterday Ashtyn decided she didn’t want to risk getting sick by going to Disneyland. She instead resolved to go to the beach where there are less crowds. Today she decided that a beach trip wasn’t worth the risk of getting sick either. She wants to play it as safe as possible and opted to stay home during her break from the hospital. “We’ll just go to Disneyland and the beach when I am done with the bone marrow transplant.” With that in mind she stayed up until 3 a.m. Monday morning preparing a meal plan for when she gets home. She wants to cook every night for two weeks. Not only does she like to cook but she also wants to pass off a goal for “Personal Progress”. Personal Progress is a goal setting achievement program that she does with her church youth group. A few meals on her list to make include: homemade burritos with salad, tortilla soup with chip and bean dip, lasagna with salad, fettuccini alfredo with Sarah salad, enchiladas with green beans, and sloppy joes with macaroni salad.

Ashtyn also wrote down a few things she wants to do when she goes home before heading back to the hospital: Little Caesar’s pizza picnic in the park. Family Home Evening. Baking desserts night. Game night. Family BBQ. Go to Park City, Utah. Hang out at Daybreak Lake. Go to the Salt Lake Temple and do confirmations, walk around Temple Square, and go to the Lion House for lunch.

Ashtyn And Suz April 7Based on flu and illnesses that were spreading around the community this past winter, Primary Children’s Hospital implemented the “no one under 14 years old is allowed at the bedside” rule. Once the community has sufficiently less cases, the hospital can lift the rule. Today was that day. From here on out, into the summer, anyone can visit Ashtyn at the bedside as long as they are not sick. Morgan (10) and Ethan (6) have never been able to visit Ashtyn in her room. Tonight Morgan came to the hospital and spent time with her sister. We talked and watched Ratatouille. After Morgan left, Ashtyn and I listened to Les Miserables while I gave her a bed bath. Ashtyn then read a book for a while. In the two months we have sat at the hospital she has not once opened up a book. Tonight she actually felt well enough physically to read and mentally well enough to focus on a book rather than everything else around her. Today was a peaceful day. Peace always comes after every storm.

“Peace is not just safety or lack of war, violence, conflict and contention. Peace comes from knowing that the Savior knows who we are, knows that we have faith in Him, love Him, and keep His commandments, even and especially amid life’s devastating trials and tragedies.” Elder Quentin L. Cook

Update coming soon

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I am so excited to update you on Ashtyn’s time at home. She has been home for five days! The interruptions to write a blog post have been constant during the day. At night I haven’t been able to keep my eyes open long enough to share with you all I want to share. I will have a post up by tomorrow morning.

Thank you so much for going through this journey with us.

Home

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I can’t believe it’s been six days since I last updated the blog. I’m sad it’s been so long and I apologize. I feel like my team has been left in the dark and I need to catch you up so we can continue down this journey together. First off, thank you for reading the blog. Thank you for caring and supporting Ashtyn. I am more grateful than ever that you are standing beside us. I know this cancer course would be completely different without you. We would be lonely and lost. Have you ever ran a race? Running a race is much different than running on a treadmill or outside on your own. During a race you have people on the sidelines cheering. There are other runners that inspire and motivate. The vibe of the crowd is uplifting and makes the experience enjoyable and fun. There are even pit stops to refuel. And there is a finish line where tons of people are cheering for the runners. It’s an awesome feeling. That’s how we feel with Ashtyn’s cancer. We aren’t alone. We have a crowd around us and it feels so good. Thank you. I plan to never go this long without an update again. Ashtyn has been home for 5 1/2 days, and it has been wonderful!

The day Ashtyn left the hospital I was uneasy about her going home. She was still being treated for C-diff and colitis. She had barely started eating after going without food for four days. It had only been five days since being in the ICU. What if her colitis wasn’t healed well enough? What if she wasn’t stable enough to go home? Her morning labs showed the biggest recovery of white blood cells yet. Her ANC went from 100 to 400. There were increases in other white blood cells, as well as her red blood cells and platelets. It was decided that, yes she was ready to go home. I had mixed emotions. Of course I wanted her to go home for obvious reasons. However I was also nervous. For the first three days of being home I took her blood pressure, temperature, and heart rate a few times a day just so I would have peace of mind that everything was ok.

Ashtyn Living Room

Because she had only been eating solid food for a day, I asked if she could continue receiving TPN at home for two nights. I didn’t want to have to push her to eat 1500 calories a day if her stomach wasn’t ready for it. I knew the TPN would make up for the nutrients that she couldn’t quite eat yet. Along with TPN, she was sent home with an IV antibiotic and an oral antiviral medication. She was also given pain medications for her legs.

We got home at 3:30 p.m. Wednesday afternoon. She got out of the car and headed inside through the garage. Without much thought she stepped up the stairs that lead inside. Her legs could not lift her body up the stairs and she almost fell. Ashtyn was surprised that it was no longer easy to step up a stair. She has also had a lot of leg pain. She describes her legs as being achy, painful, restless, and unbearable if touched. I wonder if it feels like growing pains. Her bone marrow has had no white blood cells in it for 3 1/2 months. I wonder if her bones ache because of the new white blood cell production that is being added to her bone marrow. I am not sure the cause of the pain. For four days she took a pain medication every four hours. For the last two days her legs have had significantly less pain and she isn’t taking pain medication very often anymore.

We are both surprised at what little endurance and energy she has. For the first two days, she stayed in my bed all day. Friday I had her walk to the mailbox and back. Afterwards she was exhausted and took a two hour nap. By day three and four we made a bed on the floor in the living room so she could watch TV and be more part of the family. Today she was able to sit in her comfortable blue chair in the family room for a couple of hours. Before leaving the hospital Ashtyn was looking forward to making dinner every night and passing off one of her Personal Progress goals. The first meal she had planned to make was Hawaiian Haystacks. She couldn’t even get off the couch, “Mom, I don’t think I am up to it.” The second night she wanted to make homemade burritos. After cutting up a few black olives and a tomato she realized, “I can’t make meals this week.” She laid back down on the couch.

Whether from her chemotherapy or leg pain, Ashtyn legs have been very weak. The first couple of days she was not capable of walking around alone safely. Her legs felt as if they would just collapse from right under her. With each day her legs have less pain and more strength. She no longer has the rule that she has to have someone right beside her when walking. She is free to roam as she wants. However she does have a rule about running. No running! Yesterday she “ran” to the restroom and fell. It wasn’t a bad fall. She fell on my carpet and we had to laugh. Her brain forgets that her body can’t perform how it used to.

Medical management is going well. The first two days I attached a bag of TPN to infuse into her central line for 12 hours. She is now able to eat all necessary calories without having to use TPN. She continues to get an IV antibiotic every eight hours and an oral antiviral twice a day. A home healthcare nurse comes for labs and vital signs every Monday and Thursday.

We are so happy to be home.

From Ashtyn:

Ashtyn in bed“The past few months have been the hardest I have ever had. Being in the hospital with very little break has been extremely hard and painful. As I prepare to go back to the hospital in about a week, I have been constantly thinking about how many blessings I still have and am gaining. I think about my family and how supportive they are. My mom has been my companion and best friend through this. My dad also helps me in any way he can. I’m so grateful for the timing this is happening. It is so much better to be in the hospital at this time of year, rather than the holidays and my birthday. I have so much to be grateful for. My friends, the awesome hospital staff, a great children’s hospital nearby, a living prophet, but one of the things I am most grateful for, believe it or not, is this trial. No way would I give this up for any other trial. I am determined to beat this cancer, hard. I will fight with all I’ve got. Am I scared for the bone marrow transplant or to go back to the hospital?? Of course I am! Absolutely! But God will help me and I am strong enough to handle it! I am so grateful God trusted me enough to give me this trial and I will be such a better person when I’m done with it! I will be able to help kids with hard times like this. I will be able to be grateful for every day and not worry about things that don’t matter. I can do this! With the help of my amazing family and army, I can accomplish anything and do hard things! Thank you for all your support. I give my love to all!”

Normal, For A Moment

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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 Piano

Ashtyn Playing 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.

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Awaiting Results

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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.

The Results Are In

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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.

Ashtyn And Morgan

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

Oregon Beach Sand Collection

Sand Coming From Friends in Oregon For Her Beach Collection

Ashtyn's Sand Collection Rack

Ashtyn’s Sand Collection Rack

She Shoots, She Scores!

She Shoots, She Scores!