Monthly Archives

July 2013

Ashtyn’s Army: Helping Families One At A Time

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Ashtyn has been home from the hospital for six days and is doing remarkably well. It is interesting how perspectives change once you go through an unknown. When I say she is looking so good and doing great, I have to smile thinking back a year ago and wondering what I would have thought then. A year ago, she had hair. During the summer, she swam at the pool by day and ran around the neighborhood playing night games with her friends by night. She lived for snow cones and enjoyed BBQ’s. She jumped in the waves at San Clemente beach and knee boarded in Lake Powell. This summer she isn’t allowed to swim in the pool, go to the beach, or boat in Lake Powell. She isn’t allowed to sip on Slurpee’s or eat snow cones. She doesn’t have the energy to play with her friends, run around the neighborhood, or ride bikes with her Grandma. Her stomach can’t handle food from summer BBQ’s and pizza parties. However, words cannot describe my gratitude for how well she is doing. We could not ask for a more stable bone marrow transplant recovery. She is happy, healthy, and home. What a blessing.

Ashtyn’s first meal in over a month. Corn POPS

Ashtyn’s first meal in over a month. Corn POPS

As of yet, she hasn’t been able to handle much food. Though nausea is minimal, her appetite is nonexistent. Each day, she tries to eat something such as corn POPS, watermelon, mashed potatoes, crackers, or cottage cheese. Throughout the day, she will also drink small portions of apple or grape juice. With no rhyme or reason, she throws up a couple times a day and is still getting over C-Diff. It will be a process getting her stomach well enough to eat meals again. She continues getting IV TPN (total parenteral nutrition) every night. Before going to bed, I hook up a bag of TPN and a bag of lipids to her Broviac central line to infuse 116 ml per hour of fluid over 12 hours. TPN will give her the nutrition she needs until her stomach is ready to handle food.

Have I ever told you how Ashtyn takes pills? It’s entertaining. With a straw she sucks a mouth full of water or juice. She pops one pill at a time into her mouth and swallows each pill with a little of the juice that is already in her mouth. I don’t know where she learned the technique, but that is the way she has always done it. Each morning she takes three cyclosporine pills to help her body not reject Chandler’s bone marrow. She also takes Fluconazole to prevent a fungal infection, Ursodiol to protect the liver, Prilosec to help her stomach, and Amlodipine to treat high blood pressure. She drinks oral Vancomycin three times a day to treat C-Diff and is weaning off Ativan she took for nausea. At night, she also gets an infusion of Ganciclovir to keep cytomegalovirus dormant.

Much of Ashtyn’s day is spent lounging around. Her mind is bored, but her body is weak. She has spent time with her siblings, hung out with extended family, and gone to the park. We had a fun visit with friends from Texas who stopped by and our old neighbor came over to show Ashtyn their pet goats. Life is normal enough.

Ashtyn reading scriptures to the family.  Some normalcy.

Ashtyn reading scriptures to the family. Some normalcy.

When Ashtyn rang the victory bell and was able to come home for good, I knew I wanted to start creating some normalcy for my family. Since the day Ashtyn was diagnosed with cancer, she never slept in a room without me. When we got home, I knew it was time for her to sleep in her own bed. Even though her room is right across the hall from mine, sleeping alone was an adjustment for Ashtyn. She recruited her six year old brother to sleep with her. Ethan has missed Ashtyn so much and was thrilled to sleep next to his sister. Each night they sleep together and I am just fine with that.

I have heard other parents of cancer kids mention how difficult it is to transition back to a “normal” life. I can sympathize. It is a process. Things fall by the wayside when cancer takes priority. There is a lot of catching up to do. The to-do list gets longer and longer with things like: Get an oil change. Fill softener with salt. Replace burnt out light bulbs. Organize all rooms, closets, and draws. Throw away or give to Goodwill anything not being used. Spring clean the house. Organize the garage. Clean my car. Go to the dentist. Catch up on yard work. Clean out kitchen pantry, cupboards, refrigerator, and freezer. Throw away all old food. Make a weekly meal plan, grocery shop, and cook nutritious meals. Reevaluate budget and finances. Go to the gym. The list can go on and on. We all have one. Transitioning back is about balance. I want to balance play time with my kids, work time getting organized, and be open to other things that matter.

AshtynsArmyBanner

One thing that matters is the desire we have to give back. Several weeks ago, I received an email from Jim who is an organizer for an adult soccer league in Cottonwood Heights. They are starting an annual 3 on 3 soccer tournament and wanted to raise money to give back to the community. He contacted me and wondered if Ashtyn’s Army would like to be involved. I met with him a week ago to discuss ideas. Jim has observed Ashtyn’s Army in the last several months and noticed the power they possess to change families lives. Ashtyn’s Army change my family’s life. Ashtyn conquered cancer and continues to thrive because of the motivating factor of the love she feels, the inspiration she receives from those cheering her on, and the miracles that have come from prayers. Ashtyn has been known to say, “I have to fight hard. I can’t let my Army down.” I am sure there are many families in need. Let’s rally together, shifting our focus and prayers, and concentrate on other families in need. We have the love, power, and energy to promote healing and encouragement to continue changing lives.

To start, we would love to find a family as soon as possible who will share their life with us as we do what we can to get them back on their feet. Life is unpredictable. You never know when something unfortunate will happen that may knock your family down. Most of these situations are temporary. A family might just need a little community support to help get their feet back under them. Maybe a child got ill requiring a parent to quit their job for a time, making bills pile up. A fundraiser might just be the answer to their prayers. Let’s join in our efforts and keep Ashtyn’s Army fighting for other families in need. Let’s keep this ball rolling! Let’s keep on keeping on with our focused, prayerful efforts and apply our time and resources to bolstering a single family in need each year. Using the power of Ashtyn’s Army to give back to additional families in need will grant continual support and strength to others and will bond our community together. There are families in need of service right in our very neighborhoods. Let’s keep our eyes open and our ears listening for that perfect family to sponsor at this year’s 3v3 soccer tournament. We need to find a family quick, as the tournament is in late August. Get your brains thinking of that perfect family in need and contact me with your ideas. Time is short this year, but let’s see what we can accomplish with the manpower we have at our disposal. The possibilities are endless. Your ability to change lives is endless. It will be a process to do this great work, but it will be worth it.

Please open your hearts and minds to help us find a family who needs Ashtyn’s Army.

Email me with a family’s story:
[email protected]

Ashtyn Beat Cancer

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Thursday, July 11th, Ashtyn woke up knowing she was going home. In days past she hadn’t felt well enough to be in a hurry to go home. However, by Wednesday she was climbing the walls and didn’t want to be in the hospital another moment. She woke up at 9 a.m. on Thursday morning, “I can’t stand being here any longer. Can we go?” Pleased with her spunk, energy, and fight to go home I reminded her, “Ashtyn, you have been here 33 days, you can handle four more hours.”

Throughout the morning she watched Disney movies to pass the time while I received discharge teaching from hospital staff, loaded my car with our belongings, and gathered her twelve medication prescriptions from the pharmacy. At 12:30 p.m. Ashtyn’s dad (Jason), Chandler, Morgan, and Ethan arrived at the hospital bringing Olive Garden lunch for the staff. You can’t celebrate a special occasion without food, in my opinion.

After lunch everything was in order for Ashtyn to go home. In the hall of the cancer floor there is a bell with a plaque that reads, “Ring this bell, three times real well, it’s toll to clearly say, ‘my treatments done, this course is run, now I am on my way.’” It is tradition that a cancer patient rings the bell for two occasions. One occasion is when a patient is cancer free and completed their last chemotherapy/radiation treatment. The other occasion is when a patient completed their bone marrow transplant and is discharged from the hospital to further recover at home. On the way out the door Ashtyn rang the bell in front of staff and family members for all to congratulate her with clapping, cheers, and hugs. She beat cancer! Ashtyn fought back the tears, happy she was going home but knowing she would miss all the people that took care of her. Ashtyn is done with chemotherapy, radiation, and cancer. Now recovery begins.

We arrived home at 2:30 p.m. and all of our belongings were dumped in the front room as if we had just got home from a long vacation. You can imagine what it’s like to come home after 5 1/2 months. The task of getting everything back in order is grand. It may take a month or two to get organized, but we’ll get there. After all the change, growth, and things we’ve learned, my little family is ready to start a new beginning. A new beginning is appropriate. Not only does Ashtyn have new blood and cells, she has new strength and perspective. All my children have a new outlook on life and a new confidence about them. The idea of a new beginning is exciting for all of us and we look forward to the future.

At 6:00 p.m. I took Chandler to his hockey game. At 8:15 p.m. I got a phone call from Jason informing me that Ashtyn just had a seizure. She had been watching TV, the screen began to move quickly, her vision became blurring and progressed to where she couldn’t see. She then lost consciousness and her body twitched and jerked, appearing like a grand mal seizure. After 30 seconds she regained consciousness, threw up, and appeared normal. The doctor was called and we were instructed to bring Ashtyn back to the hospital. Ashtyn was given a priesthood blessing. I packed up our things, which hadn’t been fully unpacked from getting home six hours prior, and headed back to the hospital. As we drove I didn’t hear one complaint from Ashtyn. She didn’t shed one tear or make one negative comment. We just drove with peace in our hearts. Once we arrived at the hospital, I gathered our belongings and started walking from the parking lot towards the front doors. As she held onto my arm I asked, “Are you ok? Are you going to be able to walk all the way inside?” Her strength and endurance is lacking, however she said, “Mom, God’s with me. I can make it.” After 20 feet I noticed a man walking towards the entrance. I called to him asking if he would run inside and grab us a wheelchair. Ashtyn sat on the curb and rested while a wheelchair was brought to her. Once in her hospital bed I noticed, “You are in such a good mood. You aren’t upset at all to be back in the hospital? Why?” She quickly responded, “Mom, God’s got my back. He just needs to teach me one more thing.”

MRI

The night was uneventful. A CT scan was done of her brain that showed everything was normal. She has had so many CT scans that it has become a humdrum event. In the morning she had an MRI. She has never had an MRI. It is so remarkable how comfortable she is with anything medical. Five months ago the word “cancer” freaked her out. Now nothing seems to phase her. She faces head on whatever comes her way with courage, faith, and trust. The MRI came back normal. The only explanation for the seizure was that it was a drug withdrawal. Ashtyn had been on a medication called Ativan, for nausea, since February. For a day or two prior to going home, she stopped taking it. They instructed us to put her back on a scheduled dose of Ativan and wean it over several weeks. After 33 days in the hospital, 6 hours home, and 18 hours back in the hospital, we were ready to go home again.

Before leaving the hospital I asked, “So what was the one thing that God wanted to teach you?” She said, “Sometimes things don’t turn out the way you plan. You just need to go with it and have trust.”

Ashtyn has learned so much and has grown tremendously. My entire family has. Now that we are starting a new beginning, we are excited to see what new experiences we’ll have. Cancer will forever be close to our hearts and we will never truly leave it behind. Though Ashtyn has triumphed over cancer, this is not the end. She has a long recovery ahead that will need your continued thoughts and prayers. Isn’t that how life is? We always need each others’ support for one thing or another. Because of all the support we received and miracles that came about through Ashtyn’s Army, the need to give back is strong in our hearts. Just as Ashtyn was not able to conquer cancer without the Army, we can’t give back without the Army. Ashtyn’s Army changed our life for good. We want to give back and change other’s lives for good. The next blog post will share with you our ideas on how we will keep our bond with Ashtyn’s Army and continue changing lives together.

We’re Going To Miss Them

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Ashtyn is going home today. She has come so far in five and a half months. I just shake my head at the miraculous course she has had. It is clear to me God’s hand has been in every detail of her life. I have no doubt the power that heavenly and earthly angels have had in helping us. I marvel at the love and support she has received from Ashtyn’s Army. I’m impressed by the blessings we have had and the lessons we’ve learned. If you were to ask if we would give back this trial and never have gone through it, the answer would be no. It hasn’t been easy and will continue to be a fight, however the experience has been life changing for the good.

Ashtyn has lived in the hospital much of the past five months. What has it been like to live in the hospital that long? It has been incredible. There were moments that were difficult, sad, scary, and overwhelming. But more often it was peaceful, calm, and surprisingly enjoyable. We have come to feel comfortable in the hospital environment and appreciate the many people there. Our hearts have grown very close to some of the staff members. Never do we walk the halls without talking to numerous individuals that we have come to love. I have had many uplifting conversations with nurses, as we talk about life, perspective, and love. I have talked with techs about visions and goals. We have interacted with doctors and so many other hospital staff who have known Ashtyn from the beginning and sincerely smile at her progress. There is no place on earth like the cancer floor at Primary Children’s Hospital. It contains a feeling of love and deep perspective that affects all those who spend time there. There is a strong spirit there that I rarely feel anywhere else.

Dave

Dave is a nurse who comes to work with heart and soul. He thought outside the box on how to make Ashtyn’s day better whether teaching her the ukulele or being vigilant with her medical needs. He showed sincere love from the moment he took care of Ashtyn months ago. Dave starts his day with a prayer and then works non stop in doing all he can for his patients. When he would take care of Ashtyn, we always got the warmest good morning greeting and then he would serve me, and Ashtyn if she could eat, hot chocolate and cookies for breakfast. Throughout the day, Dave would come in and out of Ashtyn’s room with a calm, upbeat, and positive spirit. On a hot Saturday morning a few weeks ago I was leaving for Millie’s Princess 5K Run to honor Millie, Ashtyn, and all our cancer kid heroes. Before leaving, Dave ran around the hospital floor getting me water bottles and a spray bottle so I wouldn’t get too hot. Always thinking. Always thoughtful.


Cammie painting her nails

Cammie, another nurse whom Ashtyn loves, has been brought to tears several times as we talk about life and her love for cancer kids. One evening Cammie promised Ashtyn she would paint her nails the following night when she came back to work. She was called off and didn’t come into work. The next day Cammie came in from home and painted Ashtyn’s nails on her day off.

Dylan is Ashtyn’s home health nurse. Even though she was in the hospital Dylan took time out of his day to visit her once a week. He didn’t just come to say hi and leave, his goal was to make her day better. He wanted her happy. He talked to her about fun things just to make her smile, gave her the best foot and leg massage ever, and played cards to help pass the time. Dylan is a familiar face that we love seeing.

A few nights ago I left the hospital to spend time with my other kids. I received this text from Ashtyn, “I’m in heaven. Sara (her nurse) gave me morphine, got more lotion, and is giving me the best foot rub. She’s the best. Also she is putting warm blankets on my feet. My feet finally feel better.” Other nights I have come back to the hospital to find out that nurses and techs had rubbed her feet and pampered her in any way they could.

I could never write long enough to include all the remarkable things we have experienced from our hospital family. There would be a notebook full of experiences written if I had thought to keep one. I will be forever grateful to have met those who have become so familiar to me while in the hospital. We will truly miss seeing their faces. We will miss being around their uplifting spirits. We will miss our conversations and their care.

During this cancer experience I have also formed relationships with parents who have had children with cancer or other illnesses. The bond with these parents require very little time spent together. Few words need to be spoken to express our support, understanding, and empathy we have for one another. I have learned much from these parents and am so grateful for their strength and example. Amanda and Brady lost their remarkable seven year old daughter to leukemia on June 18th. Millie was the strongest earthly angel you could ever know and I’m sure is one of the most powerful heavenly angels out there. Amanda and Brady faced leukemia for 3 1/2 years with a smile on their face. They never lost their faith and trust in God. They never lost their fun smiles and spirit of optimism. Amanda is known for saying, “happiness is a choice”. She is absolutely right. I look back at my life and am extremely grateful. I’m so happy.

Beginning of transplant

Ready to go home

Our view

Room with a view

Doing lung exercises to help get off oxygen

With physical therapy strengthening her arms 

Many hours were spent rubbing her sore feet 

Volunteer therapy dog 

DAY 22: Ashtyn sleeps a lot so I think a lot.

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It is Post Transplant Day 22! It has been 13 days since I last wrote a blog post. What has been going on? On one hand, very little changes have occurred. On the other hand, so many blessings have been manifested and personal lessons have been learned.

Ashtyn has been in the hospital for the last 25 days for her bone marrow transplant. Each day seems similar to the day before. Every morning blood is drawn from her central line for labs. For many days results came back showing very little change. Her absolute neutrophil count (ANC) went from zero to 100 on Post Transplant Day 14. The ANC then went up to 200 on Day 15 and remained that way through Day 19. On Day 19 she was given a medication called Neupogen which helps the immature white blood cells mature into neutrophils. On Day 20 she had an ANC of 700 and yesterday her ANC was 1000! July 1st was the offical day of engraftment and we are so grateful. Ashtyn now has sufficient white blood cells to go home to continue her recovery.

A few things need to happen before Ashtyn can go home. She needs to be able to take all her medications by mouth instead of IV. Nausea has been a big problem for her the last several weeks. Every two hours the nurses give her one medication or another to help with nausea. She still dry heaves several times a day. Nausea is not unusual for bone marrow transplant patients. It wouldn’t be unusual for Ashtyn to go home on IV nutrition until her stomach is able to tolerate a sufficient amount of food. For now she will try to tolerate pills and eat crackers from time to time. Since nausea is ever present, even the thought or mention of food makes Ashtyn more queasy. “I don’t know how I will ever be able to eat again.” It may be a couple months before Ashtyn is back to eating normally, but she’ll get there.

Ashtyn has truly been blessed with a miraculously smooth and straight forward bone marrow transplant. She has remained healthy without infection or complications. It hasn’t been easy. Nothing worthwhile is easy. There have been times where she has cried from feeling so lousy. Her blue plastic barf bag continues to be her constant companion. Leg pain is always a nuisance. Now that her ANC is over 500, she is allowed to walk the halls and even leave the floor, but she doesn’t feel up to it. She has gained close to 12 pounds in fluid and has been given the medication lasix several times to help eliminate excess fluid. She also has been needing oxygen while sleeping, which is likely due to her inactivity and fluid retention.

Ashtyn has been isolated in her room. The most exercise she gets is walking 10 feet to the restroom and back. Physical therapy helps her do exercises that strengthen her arms and legs three times a week. Two days ago, after being in her room 23 days straight, she walked out of her room for the first time. With a lot of leg pain, she walked 30 feet to a window and back. Each day she will build on that. Generally Ashtyn just doesn’t feel well. The only thing I can guess of how it must feel is being in bed with the worst flu imaginable that continues day after day after day.

Ashtyn emerged from her room for the first time in 23 days

Ashtyn emerged from her room for the first time in 23 days

During the bone marrow transplant, she is learning a lot about patience and endurance, trying to stay strong and carry on.

Ashtyn has been sleeping a lot the past couple of weeks. The fatigue is a result of low blood cells, medications, and her body’s need for rest as it is working hard to recover. In the past, while Ashtyn has been hospitalized for chemotherapy rounds, every day was busy. It seemed each day brought changes. Some moments her health was stable. Other times her body struggled in different ways and in varying degrees. During the bone marrow transplant, Ashtyn has been blessed to be able to rest during most of her days. Since Ashtyn sleeps so much, I have had hours to sit and ponder lessons I have learned from so many of you.

Some people have mentioned how inspiring Ashtyn is. I have been told that people admire the way she has faced and dealt with cancer. Several individuals have shared that they look at their own trials differently because of her. If Ashtyn can face cancer with faith, trust, hope, optimism, and patience, then surely they can face their trials the same way.

I have read comments such as: “We admire your family’s courage and optimism.” And “I admire your strength, Suzanne.”

Do you understand that we have learned and been inspired far more by Ashtyn’s Army than they could have ever learned from us? It is interesting how “Ashtyn’s Army” naturally came in full force when she was first diagnosed and it has continued to stay strong. I always knew how much we needed people for prayers and support. I never imagined how personally it would change my life. Not only is my daughter being blessed with health and miracles, we have grown in so many other ways.

I can’t possibly explain all I have learned in just one post. I will start with this: From Ashtyn’s Army, I have learned the importance of being involved in others’ lives and allowing many people to be involved in my life.

I have learned the importance of balance. What an example Ashtyn’s Army has been in balancing their love, thoughts, attention, prayers, and service. I understand now that it’s not enough just to focus on immediate family. It’s not enough just to focus on church or a career or interests. There must be balance. When I leave the hospital I want to be more like Ashtyn’s Army. I want to not only put my heart and soul into my family, but I want to put heart and soul into my community and friends, into my church and neighbors. If I had a career, I’d put my heart and soul into that as well. Balance. I think I was off balance before. I don’t think I had my eyes open to those around me in need. I don’t think I had my eyes open to those around me that I needed. I don’t think I understood the importance of people in my life or the importance of me being in others’ lives. Every interaction can be important and can have a postitive influence on lives.

I’ve learned that Ashtyn’s Army isn’t just about Ashtyn. It’s about all of us. It is about Ashtyn inspiring others and others inspiring her. It is about all of us inspiring and helping each other in what ever struggles we may have. We are all in this together. And it’s not just about cancer, it’s about life. We are all on this earth together for a purpose, for a reason. I stand by what I have said before, every individual matters and contributes to lives in ways no one else can. I need each individual in my life as much as the next because each brings unique gifts and talents that no one else can bring to the table.

For an example, I do not have the talent of giving gifts. Ashtyn and I have received the kindest care packages, gifts, and notes. What an example this has been for me. I will forever be more mindful of opportunities I may have to send an encouraging note or a gift to someone in need. For those who have sent Ashtyn gifts in the past five months, please know we have been touched by every single item received.

I admire Diane who I have never met. She wrote this: “Suzanne – I only know you through Facebook but the glimpses into your life have affected me in ways I was not prepared for. I have been praying for you and Ashtyn since your first posts went out and you both have become very special to me. I was informed that my third recurrence of Non Hodgkins lymphoma had made it’s way back into my life in late February. I am alone here in Utah having moved from Washington three years ago. I chose not to tell anyone what I was going through – I am strong – I can do it alone! What a mistake. Your post today had me in tears. I wish I were as strong as you are. Keep going on. I continue to pray for you and your precious daughter.”

I would say to Diane, “You go girl!!! Don’t ever face life, struggles or joys, alone. Share your life with people. They will be blessed. Let others share their life with you. You will be blessed. And by the way, of course you are strong! Look what you have gone through and where you are today. That’s strength.”

Recently I received the following messages from people thinking of Ashtyn and me:

From Gigi B, who I have never met. She is from Colorado and will be visiting Ashtyn in the hospital in the next day or two: “For two days the Spirit has been very strong. I have increased my prayers and am continually checking the website. I hope it is that you are all crazy busy with good things and not on a roller coaster. None the less, you are in my heart, thoughts, and prayers.”

Sarah from my community: “Our family was just chatting about Ashtyn and wondering how things are going. I thought I’d send along our love and hope that every day is better than the previous.”

Stacy, a friend from the gym: “How are you holding up? What can I do? Take you for a pedicure, dinner, visit in the hospital? I have done nothing and really want to be a support more than prayers. Please let me!”

Charlene, my neighbor across the street. “Are you doing ok? I know you have so many friends and family caring for you but if you need another one for lunch or anything else you know I’m available.”

Jenny was a “stranger” before she read Ashtyn’s blog months ago. Because of her involvement, she is now a lifelong friend. She wrote: “Thinking of you guys today!! Can I bring you anything? How are Ashtyn’s feet feeling? I hope they continue to feel better! Please let me know if/what I can do to help! Sending happy vibes your way.” Jenny then got a babysitter for her kids and drove an hour to visit us in the hospital. She brought Ashtyn thoughtful gifts and gave her a foot massage.

Is it possible to have too many friends and family? Not a chance. I have learned the importance of involving people in my life. I need them, every one. I have come to really know for myself the importance of people in my life. Each friend and interaction brings something unique. I know my days would be different without the simple interaction of individuals that are placed in my life at the right time. Each person teaches me and adds to my life. From Ashtyn’s silent followers to the most outward, you are all involved and I’m grateful for that. Thank you Ashtyn’s Army for helping Ashtyn and I find joy in our journey and for sharing your love for us. You have changed our lives forever.

“Let us relish life as we live it, find joy in the journey, and share our love with friends and family.” President Thomas S. Monson.