beautiful Ashtyn

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

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

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

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:
poulsensuzanne@gmail.com


Ashtyn Beat Cancer

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.

Victory Bell Victory Bell
Congratulations

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

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.

READY TO GO HOME

READY TO GO HOME


LEAVING HER HOSPITAL ROOM TO SLEEP IN HER OWN ROOM

LEAVING HER HOSPITAL ROOM TO SLEEP IN HER OWN ROOM

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

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.

Cancer Unit

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 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.

Making her Smile

Making her Smile

Dorks

Dorks

Best foot / leg massage EVER

Best foot / leg massage EVER

Dylan playing cards with Ashtyn

Dylan playing cards with Ashtyn

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 Beginning of transplant

Ready to go home Ready to go home

Our view Our view

Room with a view Room with a view

Doing lung exercises to help get off oxygen Doing lung exercises to help get off oxygen

With physical therapy strengthening her arms With physical therapy strengthening her arms

Many hours were spent rubbing her sore feet Many hours were spent rubbing her sore feet

Volunteer therapy dog Volunteer therapy dog


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

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.


Day 9: We Are Never Alone

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

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

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

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

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

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

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

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

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

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

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

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

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

We are not alone.


Day Five

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

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

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

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

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

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

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

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

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

Ashtyn’s view for awhile
My view from a chairMy view from a chair


Day 3 and 4 Is Behind Us

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

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

Soaking her painful feet

Soaking her painful feet

Achy feet wrapped in cold rags

Achy feet wrapped in cold rags

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

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

Enjoying UNO with Morgan

Enjoying UNO with Morgan

Ethan

Ethan

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

Chandler is feeling good

Chandler is feeling good

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

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

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

She is remarkably and noticeably being blessed.

Hanging with Wendy with a sucker that "tastes like water. That takes the fun out of eating a sucker."Day 3: My sister Wendy sat with Ashtyn for two hours. They had a very engaging conversation about scuba diving. Bonaire, here we come! One day.

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

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


Ashtyn Poulsen was diagnosed with undifferentiated leukemia on January 30th 2013. She spent 70 days in the hospital during her first two rounds of chemotherapy treatment. During the third round of chemo, she was able to spend 1 1/2 months at home. June and July, Ashtyn will be in the hospital facing and fighting the Goliath called a bone marrow transplant. Ashtyn has been greatly blessed during her war with cancer. The prayers and love received by all those who support her have brought strength, peace, comfort, and miracles. Thank you for going through this journey with us.