Tag Archives: Ashtyns Army

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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coping

On February 1st, two days after Ashtyn was hospitalized, I received a message from Brady, whose daughter Millie was on the same floor.

“Suzanne,
I’m very sorry to hear about Ashtyn. While I’m no expert, we’ve been dealing with this now for over three years, so I can give some advice on how to deal with it as a parent.

Millie was only four when she was diagnosed, so she was much younger than your daughter, but I still believe this holds true. Our children don’t fully understand what they’re facing. They gauge how bad the situation is by how we react. If we cry all day and are depressed, they will be frightened. If we are calm, confident, and tackle this task like it’s normal, they will feel the same way.

That’s not to say that I’m never sad – Millie and I have cried together many times. However, we are happy nearly all of the time. On a particularly tough day a few weeks ago, Millie and I talked about it, and she agreed with my feelings that although cancer has been the worst thing that has ever happened to our family, it has also been the best. We’ve gone to Disney World with Make-A-Wish, met Justin Bieber, Swoop (the mascot from the U) visits her all the time, and thousands of people have sent her mail/emails. I can’t tell you how many wonderful things have been done for us by friends, family, neighbors, and total strangers.

When I told Millie about your daughter she said ‘Dad, I really wish she didn’t get cancer. Please tell her that even though it’s really bad, a lot of good things happen, so she shouldn’t be too sad.’ Be prepared to be amazed by your daughter’s strength, your own strength, and by how many people love you.”

At the time I got this message I was being bombarded with information. I was completely sensory overloaded and wasn’t able to take to heart what he wrote. Now that I look back at his message I understand with clarity how he felt. I could now write the same letter to someone else with complete honesty and say the exact same things. Children feel and react how their parent’s feel and react. I have observed this with my own children from the time they were born. It continues to be true when dealing with Ashtyn. From the beginning, in my mind, we were not going to shrink while facing cancer. We were not going to lose ourselves. We were not going to soak in sorrow or throw a pity party. No way! I knew Ashtyn was capable. I knew God was fully aware and had a plan for her. As Elder Bednar put it, “Many of the lessons we are to learn in mortality can only be received through the things we experience and sometimes suffer. And God expects and trusts us to face temporary mortal adversity with His help so we can learn what we need to learn and ultimately become what we are to become in eternity.” We were to be strong, confident, and optimistic. Faith and a positive attitude has been empowering.

Today when I read, “she agreed with my feelings that although cancer has been the worst thing that has ever happened to our family, it has also been the best,” I knew Brady was being sincere. In the short time Ashtyn has had cancer, it has been the worst thing that has ever happened to our family, however it has also brought the greatest blessings. We have experienced wonderful things done by friends, family, neighbors, and total strangers. We have experienced feelings of the Spirit, angels, and God being very near. Ashtyn has already experienced what Millie has observed in her own life. “Please tell her that even though it’s really bad, a lot of good things happen.”

It is difficult for some to understand how Ashtyn and I can find joy in this experience. Others have been shocked that we don’t feel anger. There are those that wonder why we aren’t being more “real” with feeling sorrow and doubt. The reality is, our hearts are full of peace and comfort. Our positive vision for the future fills our minds. Our knowledge of God’s presence in our lives fills our souls.

Ashtyn_CopingThe last several days have gone by pretty smoothly for Ashtyn. Her days have been spent eating, sleeping, watching TV, doing physical therapy, and talking to staff and visitors. Physically she has felt well though her body is weak and tires easily. Emotionally she is doing well though she wants to go home and is not even able to leave her room. I know each day can change in an instant. Today she woke up at 9:30 am, the earliest since being in the hospital. She was awake and alert all day feeling good. By 9 pm she started to not feel well. She was nauseated and felt bloated. She informed me, “I just don’t feel right. I am going to rest for a bit.” With that said, she put on the “LDS Hymns” station on Pandora and closed her eyes. As I watched her I sensed how crummy she felt. I was so proud of her ability to cope without complaining as she focused on the words of the music. With her eyes closed, her lips moved along to the words of the song, “Jesus Once of Humble Birth.” Her fingers played along to the piano of “Kiss the Rain” by Yiruma.

The words of Brady ring true and bring a tremendous amount of joy and gratitude. “Be prepared to be amazed by your daughter’s strength, your own strength, and by how many people love you.”


Are We Really Strangers?

Since Ashtyn was diagnosed with cancer at the end of January, we have received many messages on the website and Facebook  Many times we have heard phrases such as, “I don’t know you.” “We have never met.” “I just came across your blog.” “You don’t remember me Ashtyn, but I knew you when you were young.” “Although I haven’t seen you in years Suzanne, I want you to know I am thinking and praying for you and your family.” “I can’t stop thinking about you and Ashtyn.”

“Ashtyn, we haven’t met, but I found your Facebook page by chance. I have read about you and your family, and shared your story with my family.” Angela

“Ashtyn, you don’t know me, but a few days ago I came upon your story. I read some of the entries, cried, read some more and cried more. Ever since then I haven’t been able to get you off my mind.” Stormy

“After seeing your daughter’s name I had to read her story. (I have an Ashtyn too.) Add us to the list of your growing army. Sending more love and prayers your way.” Brooke

“You don’t know me, but I love and care deeply for you and your family. God Bless you, angel girl.” Gigi

“Even though I haven’t met her and don’t anticipate that I ever will, I have felt such love and compassion and sincere prayer for her. It’s been a blessing for me. I have experienced deeper spiritual joy and awareness. Hang in there, Ashtyn! You are amazing!” Brenda

“I have been reading your story everyday for the past month. I think it is about time I wrote a comment. We have never met and I don’t think we ever will. But I’m praying for you! Get well soon Ashtyn!” J.J.

“So many of your brothers and sisters that you’ve not yet met on this earth are rooting for you.” Swann

“Ashtyn, though we are strangers, I want you to know how happy I am for you! You keep being YOU! You are strong. You can do this! Enjoy your time at home sweet girl.” Tara

But are we really strangers? No one in Ashtyn’s Army knows all the members, but I just don’t believe any of us are strangers. At least to me it doesn’t feel like we are. We all have similar feelings of love for this young girl. We all have been inspired and uplifted in some way. We all feel heavy in our hearts when she struggles and overjoyed in her triumphs. We all want the best for her. If you have read all the blog posts from the time Ashtyn was diagnosed with cancer, you know as much as I know. You don’t know any less than I do and are walking beside us every step of the way. Many people feel they know Ashtyn though they have never met her. We too feel a connection to you. When I receive a message from a “stranger” I don’t feel it is from a stranger at all. I feel it is from a friend who cares for and loves my daughter. How can I not love you back?

I have wondered on several occasions why Ashtyn has touched so many hearts. I don’t know for sure but one thing I do know, it’s not me. I can write a blog all day but no one will care unless their hearts are touched. I believe the Spirit is touching hearts because of Ashtyn’s spirit. She needs you and maybe you can benefit from her as well. It really is remarkable and such an amazing feeling to have a literal connection to hundreds of people. You are not strangers to me.

So you know what we should do? Once Ashtyn has triumphed over cancer and the war is over, we need to have a party. We need to gather together, meet face to face, and celebrate what Ashtyn has accomplished through the help and prayers of her Army. It will only be fitting to celebrate a war that has been won with the Army that got us there. We will gather as non-strangers and Ashtyn will be able to see with her own eyes the hundreds of people that rallied around her. She will be able to see those that lifted her up for months and gave her the strength and power to accomplish what she wouldn’t have been able to do alone. A victorious party is what we will look forward to.

Now for the update: Ashtyn and I continue to not be able to sleep at night and are exhausted during the day. It is unfortunate because we are not awake when everyone else is. I was tired during the day and hardly effective around my house. Ashtyn slept the entire time her siblings were at school, however she was awake the rest of the evening. Even though it would be ideal to be on the same day schedule as everyone else, Ashtyn and I do enjoy the peacefulness of the night. I am sure that is the reason we got into this predicament in the first place. The hospital is very quiet and peaceful at night. Ashtyn preferred sleeping through the chaos of the day and enjoyed the nights when she would not be bombarded by people. Tomorrow we have to wake up and go to the hospital for a bone marrow aspirate and biopsy at noon, so hopefully we will start our transition to being on a day schedule.

Ashtyn seems to have a lot of cravings for different kinds of food. She always craves pickles and salt and vinegar chips. Other cravings that are on the list include a grilled cheese and peanut butter sandwich with a pickle from Melty Way. She has asked for a Nutella crape cupcake from The Sweet Toothfairy. Before going back to the hospital she really wants to go to Olive Garden and Bonsai Japanese steak house, where they cook all the food in front of you. Tomorrow she is already looking forward to having a vegetarian subway sandwich with a bag of salt and vinegar chips. I am so grateful she has an appetite and cravings. She is too. Getting a lot of nutrition will help her during the next round of chemo.

FROM ASHTYN: “Today I was thinking about Disneyland and had a feeling I will be able to go. I thought about eating the big pickles and hard scooped ice cream you get on Main Street. I thought about going on rides like Space Mountain, Splash Mountain, Thunder Mountain, and Matterhorn. I pictured going to the Golden Horseshoe comedy show with the chili bread bowl. We will go to Cars Land and get another pickle that they sell at the entrance. I won’t be able to go on the Grizzly River Run because it would get my broviac line wet or Screamin because the seatbelt will hurt where the line is. That’s OK  I pictured walking early morning to Disneyland and going through the entrance. It would be so cool. I really need to have an absolute neutrophil count of 1000 to go to Disneyland. Yesterday I was still at zero. All I really want right now is to go before I return to the hospital. That is my main goal. Please pray that I will be able to get my white blood cells up. I really hope it will go up within a week and a half. I am worried because I think I will have to go back to the hospital in about 2 1/2 weeks.


24 Hour Focus

I couldn’t say it better than Shelley.  “I can’t wait to dedicate our family’s fast for Ashtyn this Sunday so that her white blood cell count will go up and that she can go and spend time with her family, and that her rash and sores in her mouth heal quickly. I have never been so excited to look forward to a day of fasting.  Ashtyn’s Army, here is our chance to fast. I think it would be nice if we all close our fast at the same time and try to get everyone to kneel down (on Sunday) at 5:00 pm and say a prayer. There is power in numbers. Then, let’s sit back and watch as miracles happen!”

Ashtyn is in need of your prayers and fasting.  We are asking anyone who can to fast and pray Saturday into Sunday.  She is in need of three specific blessings.  1. For her rash to go away.  2. For her throat to feel better.  3. For her total white blood cell count to go up and her ANC to rise to 1000.

Please pray that her full body rash will disappear so that she is no longer itchy and uncomfortable.  Pray that her throat will heal and stop hurting so she can eat and drink without pain or difficulty.  Also, Ashtyn really needs to produce enough white blood cells to go home soon, recover further at home, and be able to go to Disneyland in a couple weeks before having to return to the hospital.  The doctors agreed that if Ashtyn’s absolute neutrophil count (ANC, the number of white blood cells that fight infection) increases to 1000, she can go to Disneyland.  Ashtyn has a ways to go.  Currently her ANC is zero.  Our hope and prayer is that Ashtyn will be able to recover from this round of chemo enough to have an ANC of at least 1000.  We would love for her to enjoy a week at home followed by four days in Disneyland before heading back to the hospital for another month of chemo.  As Shelley said, there is power in numbers.  With your faith, fasting, prayers, and positive thoughts, I expect to sit back and watch as miracles happen.

The ODells’ commented,  “Ashtyn and all the family, we are offering our prayers at daily mass (and during the day and night) for a speedy recovery and alleviation of the pain and discomfort. We keep in touch through your daily postings and marvel at the outpouring of love from “your Army.”  We love you all and look forward to the posting of you walking out that door and saying “Disneyland, here I come!”

That’s our goal.  “Disneyland, here we come!”

“There is power in unity and there is power in numbers.” – Martin Luther King

Ashtyn’s daily gratitude journal: “Today I am grateful for socks, the ability to be able to walk, comfy pajamas, nice nurses, and my mom.”


Ribbon Tying to Show Support

Today I was woken up by a phone call from a reporter for Fox 13 News Utah.  From 11:45 am to 1 pm Canyonview Elementary School had plans to tie lime green ribbons around the school to show their support for Ashtyn.  The news channel was covering the story and the reporter wanted to interview me before heading to the school.  She hoped that Ashtyn would want to talk but I knew she wouldn’t feel up to it.  She came to Ashtyn’s room, asked me a few questions, and headed to the school.

Ashtyn’s dad was at the school and had this report. “The school staff, students, friends, and family gathered in green shirts to show their support and love for her.  It began with many friends and loved ones tying green ribbons around every tree and pole on the front of the school grounds.  As each grade finished their lunch all of the kids would come out and tie green ribbons on the fence spelling out Ashtyn’s name.  Many of the kids asked how Ashtyn was feeling and when she would be returning to school.  Some of them gave gifts to be delivered to her, many of them wanted to make sure Ashtyn knew how much they love and miss her, and two boys in her grade even took the time to write and sing a guitar duet they had written for her.  A beautiful banner was hung on the front of the school and the school marquee had a message of encouragement as well.  For those people who were there it was overwhelming to see all the love and support people have for Ashtyn and their strong desire for her to overcome this challenge.  But with every person who was there we know there are countless others who would have loved to be there if possible or who support Ashtyn in other ways.  It was an outward expression of love for her that was overwhelming.  For those of you who were there and for all those of you who were unable to attend we want to express our gratitude for everything you are doing to help Ashtyn recover.  It does not go unnoticed.”

Here are more messages from friends and family that I received:

“Happened to drive by Ashtyn’s school today.  Started crying.  So amazing.” Friend Maria

“I thought it was awesome!  The fence with her name in it looks amazing as does the front of the school.  I pointed it all out to my 9th grade daughter on our way home and she was very moved.  For me it was really special since my kids went there and it was such a coming together of various groups of special people in my life.  Parents like me who no longer have kids there, my fellow gym rats, and of course all of the kids! It is beautiful!” Friend Krista

“I took off part of the end of school so that I could make it.  It was worth it.  It was just really special.  She truly has an army behind her.  Her family, friends, and anyone who supports her are amazing.  You could tell that it wasn’t just that the kids got to climb and jump on the fences but that they really cared and want Ashtyn to get better so that she can come back home.  Every day I see kids walking home with big green A’s on their backpacks or ribbons.  There is also green ribbons on mailboxes everywhere.  It’s also great to see the way that she has inspired everyone.  The entire time I was there I overheard conversations talking about the strength your blog gives them, and how Ashtyn lifts the spirit of their children and their families.  I hope she knows how beautiful she is whether her head is shaved or not, it doesn’t make a difference.” Friend Amber

“Wish Ashtyn was feeling better.  She would have liked to have seen the kids at school cheering her on with chants of ‘let’s go Ashtyn!’” Family Jared

“It was really touching to see everyone come to support her. She has some really great classmates. Everyone was very eager to tie a ribbon for her.” Friend Jennifer

“I was so overwhelmed by the army for Ashtyn.  Our school is limed all the way.  There were so many people there.  It was overwhelming and so awesome. The kids were so awesome and excited.  The kids came in and loved the decorations. My heart is so full tonight for a beautiful young lady who is going through a tough battle. I love this amazing family so much.  There was so much love there for you and Ashtyn and your family.  How can someone not feel the compassion and embrace the spirit that is going on?  It makes you burst with the spirit and energy.  You and Ashtyn were there in spirit. I know Ashtyn feels my love.  I know you feel my love.” Staff Roberta

“I had a wonderful experience today. It was so uplifting to be with a group of people who were outwardly showing their support for a very brave young lady. I had an epiphany while I was there. Yesterday, I spent time whining that I had too much to do. Today, I gave gratitude for all my many blessings.”  Staff Shelley

“I was overjoyed by the turn out and support and donations of ribbons.  I loved seeing the kids and their love for Ashtyn.  It truly warmed my heart. I was excited to see friends and family and neighborhoods showing support.  So much talent.  Alone, trials are impossible but together as Ashtyn’s Army we can do hard things.” Family Kristi

“I think everyone felt good being able to be together and see and feel the unity of love and support that we all feel for Ashtyn, you and your family. It seemed to be very worthwhile for the kids. I could see that they care a lot about Ashtyn and it was a good way for them to show that they care.” Neighbor Julie

“I thought it was amazing how all those people came for Ashtyn, and how many caring hearts are out there.  I knew Ashtyn had an awesome army there for her, but honestly the ribbon tying blew my mind!  Ashtyn is an awesome girl and deserved every bit of what we did today.  Seeing all of those people there for her made me so happy for her.  Really it didn’t make you feel bad for her, it made you happy there were so many smiling faces while helping Ashtyn.” Classmate Nikki

“It was very inspirational and everyone was supporting her.” Classmate Nicole

“I thought it was really amazing and made me feel really happy that so many people are supporting her and in her army! It was so fun to go and tie the ribbons and see all those bright green shirts! I know Ashtyn will feel so glad that she has everyone in her school supporting her.  I really loved it!” Ashtyn’s friend Kaylee

“I thought it was heart warming to see what the parents put together for Ashtyn, and that so many students were happy to participate.  I was glad to see everyone putting so much effort into showing their support for Ashtyn.” Classmate Abigail

How was Ashtyn’s day?  Simply said, she doesn’t feel well.  She did tell me five reasons why.  The worst thing she’s dealing with is a painful throat that always hurts.  There continues to be sores in her mouth.  Her feet and hands feel hot and prickly.  The rash that covers her body is annoying and itchy.  And her body is so tired.  Ashtyn doesn’t complain much.  She’s pretty quiet throughout the day and keeps herself occupied mostly with sleep and the Disney Channel.

Today she went on another walk in the hall.  Her legs got tired easily and her feet started burning and itching.  Still she walked.  Ashtyn wanted to try eating and drinking.  She tried a couple sips of root beer, one nibble of a Milano cookie, one bite of an animal cookie, and considered a sugar baby.  It’s not much.  Still she ate and drank.

“Today I am grateful for sleep, pain medications, Biotene Mouthwash that keeps my mouth clean, pillows, and soft food.” Ashtyn

Today I am grateful for Canyonview Elementary school, the staff, students, friends, and family members that made the ribbon tying a special and successful event.  I am grateful to be a member of Ashtyn’s Army and numbered among the large group of people known already for their faith, hope, love, goodness, tenderness, and positive perspective.

Classmates

Ethan

Morgan

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Chandler

Alisa-and-Millie


Ashtyn’s Army

Ms. Fricker, one of Ashtyn’s teachers at Canyonview Elementary school, commented “Know the saying ‘it takes a village to raise a child?’  Well, it takes an army to kick cancer’s butt out of that village.  Help show Ashtyn she has an amazing army behind her. She is a tough little girl and is fighting one heck of a battle.”  She is completely right.  Ashtyn is fighting one heck of a battle.  More importantly, it is going to take an army for Ashtyn to triumph.  I have never been more sure of anything.

I sometimes fear the spark in the Army will die down.  I panic to think what we would do without you.  I am certain of Ashtyn’s outcome if the Army loses faith or ceases praying for her.  But the moment the fear comes it is replaced with faith in the Army.  I know we won’t be abandoned.  Ashtyn won’t be forgotten.  We have soldiers on the front line fighting.  We have soldiers standing back with prayers in their hearts waiting for the call to attack.  And when the most fierce attacks are needed, I have no doubt that the entire Army will stand together united in strength and faith to pray, serve, and send all their positive energy with determination to not quit until that battle is won.  The Army will then stand on guard for the next battle.  And so it will go until all battles have been won, the war is complete, and Ashtyn stands triumphant with complete health.  But health is not all she will have gained.  She will look around at the thousands of members of her Army.  She will see thousands who have hearts like God and love like her Savior.  She will see thousands with faith that will change the world.  Thousands with hope that will change lives.  Thousands with goodness that seeps into countries and states.  Thousands with tenderness that improves communities.  Thousands with perspective that strengthens families.  Thousands with purety that softens homes.  And then she will know that because of her strength and faith and the strength and faith of her Army, lives were changed for good.  Her life will be changed for good.  And then she will take her health and all that she learned from you, and will press forward to the next war she’ll have to fight.  She will continue on with life triumphing over all that is in store for her.  There will be no stopping her.  And there will be no stopping you.  Together this world will be forever better and forever changed.  That is what Ashtyn’s Army will do.

Who is a part of Ashtyn’s Army?  You.

Ashtyn’s Army includes family members, friends, and strangers.  However we are all “family” bonded together, united in a common cause.  The Army comes from all cultures, religions, and walks of life.  We couldn’t have it any other way.  We need religious and non religious.  We need spiritual and non spiritual.  We need young and old, male and female, rich and poor.  That’s what makes the Army powerful.  Power comes from the unique gifts and talents each individual has to offer.  Power comes from each individual heart and mind.

One thing the Army has in common is each member has a good heart.  Hearts that are sensitive and tender to the suffering of others.  Hearts that rise up to do good.  Hearts that rely on faith in all it’s unique forms.  Hearts that care about others instead of only thinking of themselves.  Hearts that have hope for a better world.  Hearts that know this world is not as dark as some might wish us to think.  Hearts that know the power of prayer.  Hearts that know the power of optimism and positive thinking.  Hearts that are confident and strong, willing to do what it takes to make a difference.  Hearts that know even the smallest act of kindness or the shortest prayer or the slightest bit of hope is power enough to cure a child of cancer.

Thank you for being a part of Ashtyn’s Army.  Ashtyn has recieved letters, messages, cards, balloons, blankets, necklaces, fun activities, books, stuffed animals, and gifts of all varieties.  I have family and friends waiting for word to come to the hospital to entertain, uplift, and support Ashtyn.  There are others actively bringing me meals and taking care of my needs.  Many people work behind the scenes, giving of themselves and sharing their gifts and talents.  Ashtyn’s elementary school has rallied around my family.  Chandler’s school staff are supporting him. There is a photographer documenting milestones and an IT computer expert building and managing her website.  We have amazing friends and neighbors who bring dinner to my children every night.  Each Monday my house gets cleaned by two dear women.  My family tutors, entertains, and carpools my kids to their various activities.  There is a friend who moved into my house to be the at-home caretaker.  Others invite my kids on fun outings, give hugs, and provide them with needed attention.

There are church congregations around the world remembering Ashtyn.  Her name has been added to prayer chains in different religions and is on the prayer lists at L.D.S. temples in many locations.  She has been enrolled under the special patronage of Our Lady of Lourdes in France and Illinois.  There are many families who pray for her morning and night.  Children include Ashtyn in their prayers daily.  Fasting and prayers have been dedicated to her with her specific needs in mind.  Hundreds think of Ashtyn and hope the best for her.

Ashtyn has heard from people all across Utah and the Salt Lake Valley.  Support has also spread around the country and across the world.  She has heard from people in California, Idaho, Nevada, Arizona, Colorado, Missouri, Georgia, Virginia, Florida, Washington DC, upstate New York, Quebec Canada, Ghana West Africa, Botswana South Africa, Japan, Argentina, and Venezuela.

I am in awe at the strength of Ashtyn’s Army and how it has changed her life already.  Every member is valued. Every member is needed.  Indeed it does take a village to raise a child just as surely as it will take an army to kick her cancer’s butt out of that village. Thank you for being apart of Ashtyn’s Army.

“Cancer may have started the fight, but we will finish it.”


This Kind Can Come Forth By Nothing, But By Prayer and Fasting

My last post was written two nights ago.  Ashtyn’s health had been getting progressively worse with each day.  By Tuesday night she was on the verge of having high risk surgery to remove her appendix.  Diarrhea and vomiting seemed to be occurring every couple of hours.  She had lower lobe pneumonia with an increased respiratory rate and oxygen needs.  The color of her extremities didn’t look good.  Even though she was only getting a small amount of pain medication, she seemed more out of it than she should have been.  Ashtyn wasn’t able to talk well, open her eyes well, sleep well, or walk well.  She had even fallen one time because she got out of bed before I could get to her.  I was very nervous and wasn’t alone with my concerns.  The healthcare team watched her like a hawk.  She kept me and her nurse running constantly.  By 7:30 pm I was so concerned about her declining health.  I told the doctors I thought she needed to be move to the pediatric ICU.  PICU?  That’s the last place I normally would want her to go.  It’s a germ nightmare for a neutropenic patient with no ability to fight infection.  It’s also extremely uncomfortable sleeping in a chair when I have been spoiled by my couch-bed.  But I didn’t know what else to do as I observed the direction she was going.  The doctors considered PICU briefly but held on the idea.  I knew if she went downhill any further she would be moved and monitored in the PICU.  It then hit me what I had to do, call upon Ashtyn’s Army for prayers.  Enough was enough.  We needed to get her better.  I texted my family who suggested we fast.  Who would be willing to fast on a Wednesday and Thursday?  I had no choice but to ask because I knew Ashtyn couldn’t wait until Sunday.  She needed to start getting better right away.  I sent a Facebook message that read: “Because of how sick Ashtyn is I am asking anyone who is interested to fast for Ashtyn starting this afternoon or evening and ending Thursday.  She has pneumonia in her lower left lung that we don’t want to get worse.  She has appendicitis that we don’t want to get further inflamed.  We don’t want her to get an infection.  Mostly we want her to make white blood cells so her body can recover fully and then she will feel better.”

There was an immediate response.  Some started their fast right away.  Others’ prayers became more specific and fervent.

Tuesday night I laid beside her until 6:30 am.  She didn’t want me to leave her side. I described the night in my “Relying on What I Know” post: “She sleeps, goes to the restroom, suctions her mouth, sleeps, throws up, suctions her mouth, sleeps, coughs up mucus, throws up, sleeps, goes to the restroom, and on it goes.

After over a week of her getting worse she began to stabilize Wednesday.  I am not saying she got better.  I am saying she stopped getting worse.  With the start of fasting and prayers it seemed as if her decline had halted.  She did become more alert throughout Wednesday and for the first time in over a week she didn’t scare me one time all day.  She simply hovered in calm stability.  24 hours after asking for prayers and fasting, Ashtyn moved from being “stable” to slowly improving.  Wednesday night was restful.  She didn’t throw up all night.  Her trips to the restroom were minimal.  She was completely alert.  I had 4 hours of uninterrupted sleep.  On Thursday morning the first thing she did was get on her phone and with a great amount of effort and concentration she posted to Facebook  “Please fast and pray for me tomorrow.  I have so much mucus in my mouth that it hurts to eat or drink and I am SO thirsty. Thank you so much.” (I don’t think she realized it was already Thursday morning because she went right back to sleep after the Facebook status was posted.)  She clearly has faith.  She clearly has hope in her Army.

It is now early Friday morning.  All the 24 hour fasts, from those who did so, are over.  There have been 48 hours of prayers petitioning for God’s help with her immediate and specific need to get better.  I will tell you, your prayers and fasting have changed her course.  All concerns have dissipated.  She went from heading to the pediatric ICU to sitting up in bed alert and talking during the day.  At night instead of throwing up and getting up and down, she now sleeps restfully.  Ashtyn was heading downhill and now she is on the road to recovering from this round of chemo.

For 10 days Ashtyn’s temperatures have remained above 101 F after taking Tylenol and climbed to over 103 F before the next Tylenol dose was due.  Today? Her high temperatures were near 101 and decreased to 99.5 with Tylenol!  Amazing!

Ashtyn has not had the TV on for over a week.  Today the TV was on all day.  She started the day watching Soul Surfer.  Then she watched The Incredibles, Lion King, Princess and the Frog, and the Disney Channel.  Ashtyn fell asleep during each movie but it doesn’t matter, she had the desire to watch TV rather than lay in bed in silence.

She was awake a lot more today and talked quite a bit.  Her throat and mouth are still very painful when she talks or swallows.  However when she does talk her words are clear and lucid.  Today I didn’t have to keep the lights off and remind everyone to be quiet.  She was fine with noise and the stimulation’s of the day.  Her legs are steady when she walks and she is less shaky as time progresses.  (I do continue to stay behind her with my arms around her back as she walks to the restroom just to be safe.)  Today I was so excited when she asked to open a few presents.  She hasn’t had it in her to open any presents or cards since Valentine’s Day, which even then she was only able to open a few.  After I showered and got ready for the day she said, “Mom I like your shirt.”  That’s my girl!  Since becoming a preteen she is my fashion consultant because I am horrible at knowing what looks good and she has a really good eye for it.

For the past week I haven’t had very many visitors come because she has been so sick and time consuming.  Today I felt perfectly happy and comfortable having visitors.  Ashtyn had a nasal scope today to test for a sinus fungal infection.  She was completely calm and didn’t move at all when they stuck the camera down her nose.  (The test came back negative.)  Another miracle is she didn’t throw up or have diarrhea one time today.  Prior to today she had occurrences at least every two hours.  After many restless nights of sleep, Ashtyn is sleeping peacefully and didn’t need me to sleep near her.

I know it was because of fasting and prayer that Ashtyn triumphed over this most recent hurdle. That I am sure of.  Mark 9:29 “This kind can come forth by nothing, but by prayer and fasting.”  Thank you so much for all your thoughts, prayers, fasting, and positive energy.  I have been told by different people of different religions that they are praying and sending good vibes for Ashtyn.  Whether it is a prayer from a Mormon, Jew, Catholic, Protestant, or positive energy from a Buddhist, it matters not to me or the God in whom I believe.  He answers prayers and listens to all of his children.


Relying On What I Know

Ashtyn Getting A Second CAT Scan

Ashtyn Getting A Second CT Scan

Ashtyn is sick.  Very sick.  She can hardly talk.  Can hardly open her eyes.  Can hardly walk.  Can hardly sleep comfortably.  She can’t eat.  Can’t drink. Can’t laugh. Can’t cry.

She listens.  She understands.  She does what she is asked.  She communicates as best she can.  She is kind.  She says “please” and “thank you.” She feels peace.  She feels hope.  She feels prayers.  She feels God and angels near.  She is faithful.  She is strong.  She is patient.  She is calm.  She wants to go home.  She will do what it takes to get there.

At home my kids and I try to follow three rules individually that collectively help keep peace in our home.  1. Read our scriptures every night and pray morning and night. 2. Give 10% of their time in helping me around the house. 3. Be positive.  I asked Ashtyn today if she was staying positive. When she speaks it is as if you are listening to a pure angel, “I try to stay positive by not dwelling on it and think about when it’s over.”

Today we did all we could to try and ease what she is going through.  Occupational therapy and physical therapy worked on her strength to do daily cares.  Her aunt Wendy spent a couple hours doing guided imagery while listening to yoga music as she imagined herself away from her physical body.  She was then able to imagine herself doing whatever it is she wants to do.  We also used massage therapy, music therapy, touch, and silence.

Ashtyn has had a temperature for over six days which is concerning the doctors.  Each lab work that has been done continues to show no signs of infection.  At noon she had a CT scan to discover whether or not a fungal infection is causing her high temperatures.  The CT scan showed no signs of fungus.  It did show left lower lung pnuemonia and appendicitis.

At 7:30 pm a surgeon came to Ashtyn’s bedside and talked to me about the possibility of having her go to surgery to get her appendix out.  The risks of surgery were high due to her low platlet count, her lack of white blood cells, and her overall post chemotherapy condition.  The risks of not taking her appendix out were infection and decline in her health.  I was told that the health care team would come to a consensus and let me know.  I got very nervous.  My hands shook.  My heart raced.  I cried.  I texted family.  I let Ashtyn’s Army know of her need for prayers.  1 ½ hours later the decision was made to not go forward with surgery.  I understood their reasoning.  Her mucositis is so severe that her appendix may be simply inflamed just like everything else.  Even though she is extremely sick the oncologists think she is still reacting within the spectrum of chemo patients, just on the very severe end of the bell curve.  The thinking was if they went forward with surgery and took out her appendix it wouldn’t help in her recovery from chemo.  The doctors also felt that the risk of rupture wasn’t as high as a normal child because Ashtyn doesn’t have the white blood cells that normally help with inflaming the appendix to the point of rupture.  Interesting.  I asked family and facebook friends to pray that the doctors would do what needed to be done.  I am grateful for the immediate response.

At the beginning of the day I felt peace, and then I didn’t, and then I did, and then I didn’t.  During the night I have felt peace.  It is 6:30 am.  Yoga music from Pandora played all night.  She asked me tonight to lay with her because she sleeps better that way.  She sleeps, goes to the restroom, suctions her mouth, sleeps, throws up, suctions her mouth, sleeps, coughs up mucus, throws up, sleeps, goes to the restroom, and on it goes.  When she did fall asleep in my arms or next to me, I couldn’t help but get tears in my eyes laying next to this perfect earthly angel.  I have always, from the time she was a baby, called her my Angel Ashtyn.  Her soul has always been angelic to me with her tender kind heart, her desire to make people feel loved and included, and her testimony of God and her Savior. I am so proud of her as I know you all are.  She truly is handling this trial with the most admirable character. Through the night I have reminded her how loved she is and what a remarkable example she is to us all.

February 3rd I wrote a post called “The Road to Diagnosis “  It was the day she was diagnosed with undifferentiated Leukemia.  The doctors thought that a possible course to try with Ashtyn was to get her home and treat her for a month using the acute lymphoblastic leukemia (A.L.L) protocol and see how she responded.  In my post I wrote:  I was blunt (with the oncologist doctor) about my motherly instinct feelings. “I know nothing about cancer but I don’t believe she will respond to the A.L.L treatment. I don’t know what she will respond to.  My guess is that she is going to give you a run for your money and eventually get a bone marrow transplant.”

Today the doctors informed me that she has the worst case of mucositis, the worst side effects from medications, and the worst complications from chemo.  If other chemo kids reacted the way Ashtyn has, they would decrease the dose of which they give.  She has the rarest form of Leukemia and has indeed been giving them a run for their money.  I believe she will continue to do so.  I believe she will go through her cancer course the way God wants and according to His plan.  There is a purpose in her struggles.  There is purpose in her taking the most difficult road.  Good and bad days will come.  I feel our faith will be tested and stretched to the max during her journey.  There will be times when we will be tempted to lose our faith and let doubt come into our hearts.  But I believe with everything in me that she will triumph.  And when she does we will have no question how she got there and why she is alive.  It will not be by chance and it will not be by coincidence.  It will clearly and poignantly be because of God’s mercy and miracles brought about by the faith, prayers, and fasting from you.  My prayers alone will not be enough.  I know that to be true.

“Even if you cannot always see that silver lining on your clouds, God can, for He is the very source of the light you seek.  He does love you, and He knows your fears.  He hears your prayers.  He is your Heavenly Father, and surely He matches with His own the tears His children shed.”  Elder Jeffrey R. Holland

*** Because of how sick Ashtyn is I am asking anyone who is interested to fast for Ashtyn starting this afternoon or evening and ending Thursday.  Her heart rate is high.  Her respiratory rate is high.  Her temperature is high.  She has pnemonia in her lower left lung that we don’t want to get worse. She has appendicitis that we don’t want to get further inflamed.  We don’t want her to get an infection.  Mostly we want her to make white blood cells so her body can recover fully and then she will feel better.***


The Routine

I suppose Ashtyn and I are getting into a routine, though it is an unpredictable, unplanned routine that we take minute by minute.

Nausea and pain is constantly on our minds.  “Where’s the barf bag?” is a question she commonly asks.  It’s like her security blanket, whether she is going to throw up into it or not.  When Ashtyn does throw up she likes me to put one hand on her forehead and the other hand on her stomach.  Along with her constant companion, the blue barf bag, a box of Kleenex is always by her side for the moments of coughing up mucus or spitting out saliva that is too painful to swallow.  A new addition to her bedside companions is the suction catheter that she uses to suction spit out of her mouth.  Several times a day she asks for water.  After sucking a bit of water through the straw she spits it out and wonders when she will be able to swallow again.  Throughout the day she is asked to swab with mouthwash which is supposed to help her mouth sores.  I also try to keep Chapstick on her lips.  She always does what she is asked to do.  Ashtyn sleeps off and on all day.  She often pulls her nasal cannula out of her nose.  As I put it back into her nose I remind her that she needs the oxygen.  There are the moments in the day that her temperature reaches 104.  Damp cloths are put on her forehead and tummy.  Tylenol always brings her temperature down to around 101 only to then increase again.  Medicine continues to be given every two hours to help with nausea and pain.  I often ask her, “How painful is your throat right now when you don’t talk?”  “How much nausea are you having?”

There is nothing more humbling than giving your 12 year old daughter a bed-bath when she is too sick to help.  There is nothing like watching her brush her hair as clumps fall out.  There is nothing like helping a perfect young woman walk slowly to the bathroom making sure she doesn’t fall.   There is nothing more peaceful than giving her a foot massage with lotion while listening to LDS hymns on Pandora.

Sometimes Ashtyn likes music.  Most of the time she doesn’t   Sometimes she likes to be talked to.  Most of the time she wants silence.  Sometimes she wants her blanket on her.  Other times she does not.  Sometimes she will look at her phone for texts.  Most of the time she doesn’t have it in her.  Sometimes she asks for the TV to be on.  Most of the time she falls asleep before she is able to watch it.

There are moments when Ashtyn doesn’t feel she can do it.  “You are strong. You are beautiful. You are doing so good.  Do you feel angels helping you?  Do you feel the prayers of hundreds of people that are supporting you?”

At 1:00 am she asked, “Will you tell people to keep praying for me?”  “Yes I will Ashtyn.  They have the faith that you will start feeling better. Do you?”  Of course she has the faith that prayers will be answered.  Of course she knows God is near.  A few minutes later she said, “I want to talk to you but I can’t”.  She is in too much pain to talk and it’s really difficult to understand what she is saying when she does try.  “Do you want me to talk to you?  I can read all the comments you have been getting on Facebook and the blog.”  She nodded her head.  I read comments written for her.

“Ashtyn, we have joined your army since Grandma told us this AM. Ashtyn and Suzanne, you and your family will be in our prayers. Do not despair as God is with you every step of the way and will bring you through this. We will add your name to the prayer list in our community. We will follow you through this. We love all of you more than just friends, you are family! Kisses & hugs.”

”I’m a complete stranger, but I’d like to be part of Her Army. Ashtyn is incredibly strong and is such a great example of faith. :).  I am asking your permission to think, pray and fast for Ashtyn…for her continued faith and strength. I’d also love to put her name on the prayer rolls.
Sleep well, Ashtyn (and mom)”

“Not a second goes by I am not thinking and praying for sweet Ashtyn.  I feel so much love for her and also feel the love God has for her and your family. What an incredible perspective on life and cancer.”

“Ashtyn, you are a beautiful amazing girl that is bringing a community of strength together. I am a so proud of you and your strength. You are in my prayers everyday. I know that you will overcome this and become happier and healthier than ever before. When you have a bad day just know there is an army of people that love you and are here for you. Whatever you need. Big Hug!”

“Ashtyn, you are amazing! I am so inspired by your positive thinking, your kindness during the toughest times, and your strong and determined spirit. You WILL conquer this cancer!”

“Stay strong Ashtyn!!! You can do this!!!”

“We love you Ashtyn! We pray for you every day!!!!!”

“Ashtyn, you are one amazing kid!! I would never have the courage to go through all of that!! No matter what happens, you will always be loved!! You deserve to go to Disneyland!! I wish I could come with you!! I haven’t been there since 2007!! Hang in there!! Hang on to that strength long enough to go to Disneyland!! Love you!!”

“Ashtyn, You have a whole family of cousins in Washington DC that think of you and pray for you throughout the day! Isabelle, your 3rd cousin who is 7, comes home from school wanting to know if you got your pickles and the latest update. Jake, the 4 year old, even puts in a nightly prayer request for you. You are part of our family conversations and prayers daily!”

“Ashtyn, You have been really strong lately. I hope you will never give up and whatever happens to you, I want you to know that my family is praying for you night and day. Ashtyn, knowing you for as long as I have, you are strong and you never give up. I hope I can visit you sometime.  We love you!!!!”

“Ashtyn, you are going to beat it too! I can tell you are so strong and determined and that is going to get you through this. Keep fighting and we’ll keep praying!”

“Hey 🙂 you probably don’t remember me but I was on your brother’s football team.  I was just hoping you’d be alright.  I will try to send you something!  I’m really sorry for what’s been happening lately and I just want you to know I’m here for you and so is your army!!! :)”

“You don’t know me and somehow I feel like I know you. Ashtyn you are in my prayers, thoughts, and heart. You and your family are very strong and can get through anything, you just keep your pretty head up.”

“Ashtyn, you are in our prayers. We are grateful to share this journey with you through this blog and are now proud to be part of your army. You are never alone.”

“Our family is praying lots for you Ashtyn! I know you don’t know us well, but we think of you often, and you are kept in our thoughts and prayers all day long. Your name is in the Oqquirrh Mountain Temple, too!”

“Ashtyn, I was so touched by your words! I am actually a nurse on the unit you are on at Primary’s. We just haven’t met yet… I’m also friends with Nanette. She told me how amazing you are! I can’t wait to meet you! You are an inspiration to so many! :)”

“Ashtyn, We don’t get to see you much but I am glad we got to visit with you and your family at your grandma Susan’s house a month ago. I want you to know that the Jackson family is thinking of you and is following this blog, fasting and praying daily for your quick recovery. Thank you for inspiring us.”

“You are a beautiful, inspiring person and I am lucky to be able to read all about you through this blog. Keep up the strong attitude and you will make it through this! xoxoxo….”

AND ON AND ON AND ON.

Ashtyn fell asleep as I read to her.


Stay Positive

Saturday night… I mean Sunday morning I went to bed at 6 am, after a busy night helping Ashtyn.  At 7:00 am I woke up to about 10 different medical staff surrounding Ashtyn’s bed moving very quickly.  I could sense there was worry in the air.  As I watched the organized commotion, I gathered that her blood pressure was low and they were doing all they could to get it to stabilize. 60 ml after 60 ml of fluid was pushed into her Broviac central line.  A total of 1080 ml was given to her in a matter of 10-15 minutes.  Her original blood pressure was 103/20.  The lower number (diastolic) of 20 was very concerning.  A normal diastolic pressure is around 65.  At 20, Ashtyn was unable to perfuse oxygen to her brain.  I could feel panic surfacing.  Is Ashtyn going to be OK?   Is she going to make it?  I quickly felt calm remembering what I know to be true.  God is in charge, He is watching out for her, He has a plan, and with everyone’s faith and prayers she will be OK.

By 7:30 am we placed a mask over Ashtyn’s mouth and wheeled her bed to the Pediatric ICU and placed it in a room with closed doors and no windows.  She was given norepinephrine to keep her blood pressure normal.  “Mom, I want to go back to the other room.”  Me too.  I asked the doctors what their best case scenario was of getting her back to her room.  They wanted to observe her for at least 24 hours.  Like Ashtyn, I had an immediate appreciation for her hospital room with my comfy couch bed, instead of a chair,  and all of Ashtyn’s Army decorations.  I sent a Facebook message to Ashtyn’s Army “Ashtyn’s blood pressure dropped this morning.  She was moved to the pediatric ICU for monitoring.  Please pray that the medical staff will figure out the cause.  Pray that she can recover quickly so we can return to her home away from home hospital room.”

The doctors’ and the nurse practitioner approach was that she had an infection until proven otherwise.  My approach was that she had too much morphine in her body until proven otherwise.  As I sat beside her I was so grateful for God’s hand in Ashtyn’s daily life.  At the time her low blood pressure was detected, she was getting her second unit of red blood cells transfused.  During the beginning of a transfusion blood pressure is taken every 15 minutes.  Other than a blood transfusion nurses generally take her blood pressure every 4 hours.  The PICU took blood tests and decided she didn’t need that second unit of blood.  I am grateful that her blood pressure dropped at a time that she was being monitored very closely.  Because of that blessing, I know her blood pressure wasn’t low for long and her brain was not compromised.

As the hours of monitoring went on it became apparent that she was overdosed with sedatives and pain meds. Not overdosed because of the medical staff, but overdosed because her body was unusually sensitive to what normally is given.  By 4 pm Ashtyn was stable enough to go back to her room.  Another miracle because of the prayers of Ashtyn’s Army.

Ashtyn’s day continued to be a struggle.  Since she was overdosed with medication, the staff  did not give her any medicine for nausea or pain for 12 hours to help her not be so out of it.  Because of that, she became very nauseated and threw up often, though there was nothing to throw up.  The antibiotics were also affecting her to where so had to go to the restroom a lot.  She was uncomfortable, restless, and unable to sleep well.

Her hair was a matted mess.  I asked Ashtyn if I could brush her hair.  She wanted to do it herself.  As she brushed her hair my heart sank in despair and anger for what she is going through.  Why is it that I can watch her sick and in pain, but when I see clumps of hair coming off her head, it hurts me deeply?  It makes me sick to my stomach.  She has lost so much hair, I suspect it won’t be but a few more days before it will all be gone.  I wanted to validate any feelings she may have about her hair loss.  “Ashtyn, do you know what makes me mad?  That you have to lose your hair.  It’s very sad.  Does it make you mad?”  She nodded her head, but then shook it, “I can’t think like that.”  Her comment pierced me.  She was telling me what I have been teaching her for years.  Be positive.  There is no point in ever stewing over something you have no control over.  It is so much more productive if we push out the negative and focus on the good.

Tonight Ashtyn asked me how long she gets to be home when she leaves the hospital.  I haven’t had the chance to tell her that when she goes home it won’t be for good.  She figured it out.  The girl definitely listens to conversations around her bed.  I told her she would be home for about 1 ½ weeks and in that time we can do whatever she wants to do.  “Do you want to go home or go to Disneyland.”  She thought about it, “Disneyland.”  I asked, “How long do you want to be there?”  Her reply, “As long as possible.”  I gave her the idea of going to Disneyland for 5 days and home for 5 days.  She thought that was the perfect idea.  “Do you want to go to Disneyland first or home first?”  After careful consideration she said, “I want to go to Disneyland first so that there is no way they’ll make me come back to the hospital.”  I understood.  She would have a fear the first couple of days of being home that the doctors would make her go back to the hospital early for one reason or another.  Ashtyn has always been very intuitive of knowing how to cope emotionally.

Ashtyn has been handling her hardship with such dignity and grace.  She remains nice to me and the staff even in her toughest moments.  Her determination never seems to fail.  I told her tonight, “Ashtyn, tomorrow will be a better day.”  “Mom, you told me that yesterday.”  “Well Ash, I think it will be.  Do you?”  She nodded her head.

Ashtyn Going To PICU

Ashtyn Going To PICU


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.