beautiful Ashtyn

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My good friend, Lisa Harbertson Photography, took these photos of Ashtyn soon after we were released from the hospital following her bone marrow transplant. We knew Ashtyn’s hair would grow back and we wanted to capture her as she was at that moment. I am so grateful for these photos of my brave girl.

If you like these photos of my sweet girl, go to Lisa Harbertson Photography’s FB page and give her more LIKES, she is an amazing photographer…
https://www.facebook.com/lisaharbertsonphotography
You can also find her website at www.lisaharbertson.com
Below are her words and photos about Ashtyn…

“This is Ashtyn and I am blessed and lucky to call her my friend. I have known her since she was born. My husband and I met her parents when we moved next door into our first apartment as newlyweds. 14 years ago! We became bosom friends. When Ashtyn and her 2 siblings were babies and toddlers they filled up a big hole in our hearts caused by infertility. We loved them like our own children. Years have passed and life is busy, distance in miles has come between us, we have had 4 children of our own (hole in heart is gone thank you to the heavens!) – but we will ALWAys have a special place in our heart for these children. When Ashtyn was diagnosed with a rare form of leukemia this past February, our hearts were broken and humbled in prayer for this sweet girl. The things Ashtyn at 12 years old has endured will be more than many of us endure and overcome in a lifetime. Her current health and continued life has only come about with modern medicine and lots and lots and lots of prayers and faith. If you want to be inspired and strengthened, read her story in her own and her mother’s heartfelt words at Ashtyn’s Army.

Ashtyn was recovering from her chemo and bone marrow transplant and was barely home from the hospital when she asked me to capture her in photographs. I really have never felt more honored as a photographer. Not honored that I was asked, but honored that I had the privilege of spending time with her and photographing her at this significant moment in her life. She had beat cancer. Overcome the odds. Was living proof of miracles. When I was alone with her in the room I really felt like I was with an angel. I know that’s what an angel would be like. I asked her to write a few things on paper. She couldn’t write so I wrote for her. After all the pain, grief, and trial she’s endured, she told me to write, “God is Good.” What an example. She walked into my studio as feeble as a 95 year old lady. She had her throw up bag next to her the whole time. We took lots of breaks for rest. In the picture by the tree we were cheering and screaming “you beat cancer!!” – it took her all the energy she could muster to lift her arms up high. It was the middle of Summer and she was shivering with cold and needed a blanket. Yet! Yet here is this 12 year old girl, with a smile on her face and a true sparkle in her eyes. Angel Sparkle!! Like I said, lucky to know her, lucky to spend the evening with her.

I love you Ashtyn. You have made more of an impact on my life than you could ever know. Now you go girl and travel many more roads and watch many more sunsets! You Are Strong.”

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100 Days Post Bone Marrow Transplant

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It has been 100 days since Ashtyn received her bone marrow transplant. She has been home from the hospital for 69 days. From the time Ashtyn got home, recovery has been slow and steady – always improving. From a day-by-day perspective, her progress seems almost nonexistent. It would be easy to let the days go by not recognizing the miraculous improvements that have been before our eyes. However, looking back, there is a clear difference of where Ashtyn is today as opposed to where she was just two months ago.

Progression A few weeks after diagnosis vs A few weeks after a bone marrow transplant.

Progression
a few weeks after diagnosis VS a few weeks after a bone marrow transplant.

“We are not transformed, as you know, overnight, these things come over process of time; changes are incremental and people don’t see them until they look back and see where they are as opposed to where they were.” Elder D. Todd Christofferson

I am extremely grateful for the astonishing course and progress she has had since being home. Looking back there have been incredible improvements in her emotional stability, social adjustments, physical strength and endurance, nausea and appetite.

After being in the hospital for nearly six months, we did not anticipate the emotional struggle it would be transitioning into a life outside the hospital. To some degree, Ashtyn wasn’t the same 12 year old girl that she was in January. What had mattered to her six months before wasn’t at the forefront anymore. For instance, the many pictures she had of Justin Beiber covering her bedroom walls were taken down, replaced by uplifting quotes and pictures of sandy beaches. Her once social spirit, that loved being surrounded by friends from school, had become accustomed to being around health care “friends” and having conversations centered around the topic of cancer. In the past, she would have participated in the usual, fun family interactions, but noticed that the normal noises of chattering and playing were too much for her already overstimulated senses. Upon coming home, Ashtyn was very tearful for several weeks. She was depressed. She felt frustrated, hopeless, sad, lonely, irritable, and anxious. At times throughout the days, I would see her punching a pillow in frustration or crying quietly in sorrow. It got worse before it got better. Ashtyn wished she had someone who knew exactly how she felt and would cry with her. After a couple weeks of being home she started talking with the hospital pediatric oncology physiologist. It was helpful for her to talk to someone who validated her emotions. What was even more helpful in gaining peace was time. Over time she became less tearful, her frustrations and irritability lightened, and her emptiness was replaced by comfort in her new post-cancer life. She slowly gained inner strength to adjust to her broadened perspective, deepened maturity, and a completely spent body and mind. Light gradually flickered back into her soul. She is getting into her new groove, continually finding more and more joy in life.

Emotional Battle

Emotional Battle

For months, Ashtyn had very little contact with kids her own age or younger. The hospital had a rule from February through April that no one 13 years or younger could visit patients because of the community flu season. She also had no desire to communicate with friends and siblings via Facetime, Skype nor phone calls because it was too painful to think of life outside the hospital and what she was missing out on. The easiest way for her to face her circumstances was to live in her hospital room and block out anything that may be going on out in the “real” world. When she was finally able to come home for good in July, the desire to be social was nonexistent. What was there to talk about with people? Did anyone understand what she had just gone through? So much had changed within her – who was she anyway? Slowly, social opportunities were placed before her and gradually has become more and more comfortable.

Sunday School comes to her.

Sunday School comes to her.

Ashtyn is not allowed to go to church until Spring. Her teacher had the brilliant idea to bring the Sunday School class to her each week. Every Sunday, her teacher evaluates the health of the class. If everyone is well, they all walk to our house and participate in the 40 minute lesson together. What a blessing it has been for Ashtyn. There have also been a few occasions where she has gotten together with friends. She went to the pool with Spencer, a childhood friend, who also had cancer a few years ago. She visited Hunter in July, a friend she met at the hospital who would soon be having a bone marrow transplant. After a few weeks of being home, friends from school came over for a couple of hours to help ease her into socializing again. Last weekend, she went to a friends house for over three hours for a birthday party. Sunday, she asked if I would invite her grandparents over for dinner. Her need for social interaction is growing as she continues to discover her new normal.

Hunter and Ashtyn

Hunter and Ashtyn

He wouldn't swim since she couldn't

He wouldn’t swim since she couldn’t

School Friends

School Friends

Alpine Slide with Siblings

Alpine Slide with Siblings

Walking to Clinic

Walking to Clinic

It has been remarkable to look back at how far Ashtyn has come physically. When arriving home two months ago, her endurance was minimal. Walking out to the driveway and back inside was a strain. She then was stretched to her limits by walking two houses down the street and back. Each week, when she went to the hospital for her clinic check up, I would valet park and have her walk 30 feet to a bench inside. I then would find a wheelchair to push her the rest of the way to the clinic office. At first there was no way she would be able to stand in the elevator and then walk 100 yards down the hall to clinic. Gradually she was able to do more and more. After a month, a wheel chair was no longer needed. She was able to walk from the car to the elevator door. Then, after sitting and resting on a bench, she could stand in the elevator with painful, weak legs and wait for it to ascend to the 4th floor. Once out, she would sit and rest to gear up for the walk down the hall. As she slowly walked, we would eyeball chairs that lined the hall and have a goal to walk a certain distance before resting. What would take you and I three minutes, start to finish, was over a 10 minute exercise opportunity for Ashtyn. She continues going to the hospital weekly, however the picture looks much different from two months ago. This week, she will get out of the car and put on her blue, thick mask like always. She will then walk easily to the elevator, stand in the elevator without pain, and then walk down the hall to clinic without any need to rest or sit. She will even try to increase her speed and balance as she walks. Every Tuesday and Thursday physical therapy comes to my house and works on building Ashtyn’s strength and endurance. What a blessing it has been to see visual progress as her body is becoming stronger and stronger.

PT - Balance

PT – Balance

PT - Strength

PT – Strength

Appetite!!

Appetite!!

Nausea and a lack of appetite have been an issue since the time of diagnosis. A blue plastic barf bag became her trusted constant companion. It was like a security blanket that she never went without. Looking at past pictures you could play the game, “Where’s the blue barf bag?” because it was ever present. When Ashtyn was discharged from the hospital, she was given IV nutrition and fluids during each night to ensure she was getting enough calories and fluid. Twice a day she took a medication that helped increase her appetite. During the first month of being home, she ate close to 300 calories a day and threw up almost daily. As with all her progress, her nausea gradually decreased and her appetite increased. On August 21st she no longer needed TPN and lipids (IV nutrition) during the night. She was able to eat enough calories on her own during the day. For several more weeks IV fluids continued to be infused during the night to keep her hydrated. September 18th was the first night all IV fluids were stopped and she slept free of IV tubing. Nausea still comes and goes and seems to occur mostly in the morning. We have found that (probably from getting her gallbladder out in May) her stomach also doesn’t feel well when she eats fattening dairy products such as cheese and ice cream. To this day she still takes a medication Zofran to help control nausea and an appetite stimulant. We could not be more pleased that her stomach is tolerating real food. Whatever she craves she gets. Why not? She deserves it. A month ago, when starting to eat sufficient calories, she felt a difference in her body. “When I wasn’t eating food for so many months, even though I wasn’t hungry I felt my body was starving. I feel so much better with actual food.”

Ashtyn and I had a short conversation last week about her progress. She mentioned that she literally feels her body working hard to rebuild and regenerate. We thought of all the work her body is doing from the outward physical, emotional, social, and mental tasks to the deepest fiber demands that we can’t even see. I mentioned, “You have never worked harder in your life than right now.” She agreed.

“There is a purpose in life far beyond living comfortably.” D. Todd Christofferson
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Hope for Presley

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It has been 53 days since Ashtyn’s bone marrow transplant. She has been home from the hospital for 22 days. I plan on having a post up by Monday morning giving you an update on her. I will let you know details on how she is doing and what she’s been up to. Overall she is doing great. There have been some emotional battles trying to get back into the swing of things, but there’s been improvements each day.

“Every life has peaks and shadows and times when it seems that the birds don’t sing and bells don’t ring. Yet in spite of discouragement and adversity, those who are happiest seem to have a way of learning from difficult times, becoming stronger, wiser, and happier as a result.” Elder Wirthlin

Thank you for sharing with me some touching stories of families in need of Ashtyn’s Army. It is our desire to help many families with the efforts and prayers of our cause. The stories I received touched my heart, like the story of Presley Claverie. After I familiarized myself with the Claverie family and their story, I was compelled to call Alysa, Presley’s mom, and tell her about Ashtyn’s Army and our desire to do a fundraiser on their behalf. I explained that someone had contacted me regarding Presley and the trials she and her family were facing. Alysa was so grateful for my phone call and for a chance to share her story. She needs the help of Ashtyn’s Army to bolster their family during this trial. We hope to focus and put efforts into helping them as Presley battles Leukemia.

Here is Presley’s story written by her mom:

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Presley Ann Claverie was born on December 8, 2009 to Paul and Alysa Claverie. She is their first child and is adored by all who know her. Especially, her baby brother, Crew, age 2. She is an active little girl who loves being outside, riding her bike, playing games, reading books and playing with her little brother. From a very young age this lovable little lady has won the hearts of all who meet her. Her sweet and content personality, bouncing curls, and beautiful smile are captivating.

On March 10, 2013, Paul and Alysa’s world was turned upside down. Their darling little girl was sick, and they received the devastating news no parent ever wants to hear. “Your child has cancer.”

Presley was diagnosed with Acute Lymphoblastic Leukemia (ALL) at just 3 years old. In order to receive the best care for their precious daughter, they moved their family from Cedar City to Salt Lake City to begin treatment at Primary Children’s Hospital. Although doctors have given Presley a good prognosis, the devastation of this cancer is still prevalent. Presley will undergo treatment for over two years. This includes multiple lumbar punctures (chemo inserted into the spine), bone marrow biopsies, blood transfusions, and countless trips to Primary Children’s for chemotherapy and other procedures. In addition to the stress and heartache of Presley’s illness, her daddy, Paul, sadly lost his job just 6 week after her diagnosis. The financial strain on this little family is more than anyone should have to bear.

This trial has been, and will continue to be, a long and overwhelming journey for Presley and her family. With a lot of love, prayers, and community support we believe that brave little Presley will come out on top!

You can follow her courageous journey at www.hopeforpresley.blogspot.com

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We have collaborated with Jim Geurts, the charity organizer, and through AYSO he set up a charity for Presley’s family. Please read his information below:

In an effort to give back to our local community, we the organizers of the CHASL are organizing a 3V3 Soccer tournament to be held on August 17 entrance fees will all be donated to 2 local charities. Some of the collected money will go to a Scholarship Fund for the AYSO youth league region 126 to help sponsor kids with an interest in soccer but not the means. We would also like to team up with Ashtyn’s Army to begin a annual partnership to seek out a local family in need of financial assistance from the likes of unexpected tragedy or medical costs. This is in an effort to fuse our local community to a common goal, and do our part to reach out to our neighbors in need. We will seek to get as much of the material needs and people power donated from AYSO region 126, 5030 and any members of Ashtyn’s Army looking to lend a hand locally. We foresee this year as a learning experience and expect the event to grow each year. Hopefully this will engender a sense of giving and service from those of us who can, to those who are in need.

This tournament will be open to Men, Women and kids age 14 (by the date of July 31 teams will be randomly selected with a cross section of all players on each team. We expect 100-200 + participants and are looking to charge $15 for participation, with a T-shirt given to each participant. We are also looking into holding a raffle and selling raffle tickets for items to be donated by local businesses.

Cottonwood Heights Adult Soccer League is hosting an open invitation 3 V 3 soccer tournament for charity. The tournament will be held Saturday August 17 8:30 in the morning. You are welcome to register a full team, or as a single participant. Each participant must complete an individual registration form, whether they are a part of a team, or registering as an individual. The registration fee is 15.00 per player, and this includes a T-shirt, and a guarantee of a minimum of 3 games. If registering as a complete team, each team must consist of 1 player U21, 1 player over 30, and 1 female player. Each team can have a maximum of 6 players, and each player must register and pay the 15.00 to participate. If you register as a single player you will be placed on a team before the start of the tournament. The registration deadline to participate is Thursday August 15 minimum age to participate is 14 years old as of July 31th 2013.

If any of you would be willing to volunteer during the soccer tournament on August 17th, there is a need. Please let me know. Thank you Ashtyn’s Army!!!

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.

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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]