Find Joy In The Work

The blessing that Ashtyn has white blood cells on BMT Day 42 will not be taken for granted. Her adenovirus level that was 980,000 four days ago is now 2,000,000. Yikes, however remarkably her absolute neutrophil count went from 193 to 251. I’m grateful for a marrow that is producing white blood cells and pray that adenovirus will start being destroyed. All in all the day was pleasant with a good vibe. Outside the hospital window was blue skies and sunshine. Inside the room my heart was not troubled and everything was calm. It was Monday so we received several emails from my favorite 19 year old son in Florida. “I have been doing good. Times are tough sometimes but I find joy in the work and in everything I do. I love you mom.” I’m grateful that each of my kids are in a good place emotionally right now and are finding joy in this season. From Chandler, “My sister, Ashtyn, has been going through Cancer Treatment for the entirety of my mission. I know that the most I can do for her and my family is to be out here, serving others and serving God. One of the most important things we can do in this life is set aside our own desires and put others before ourselves. I have seen the blessings that come from that.”

The One Matters

Preface: As you probably can guess, I’m an open book. Aside from it being my personality, I feel it a waste and purposeless if I suffer or have joy in silence. I learn, grow, and evolve from knowing others journeys so maybe someone can benefit in some way from knowing mine. If I ever error in making someone feel uncomfortable, it’s probably because I share too much. Tonight I need to error on the side of being more vague than I’d like because the experience I had Sunday early morning is one that could be skewed unless we were to speak face to face, and even then I can’t explain impressions very well with words. 

Story: Sunday around midnight, my thoughts turned spiritual in nature as I contemplated Ashtyn’s years of suffering and my belief that God is a loving God. I asked if He would compensate by bringing her some unusual light and love that would give her added hope and excitement. My desire for her was that she could receive a reminder that He is still mindful of her. While expressing my thoughts and hopes for her, I had an experience unlike anything I’ve ever had which gave me a perspective I had never considered before. The only way I can explain is by saying, I knew that Ashtyn was being specifically thought of by name. Almost two hours later her nurse Anna came into the room with the most excited look on her face. After 6 weeks, Ashtyn had white blood cells in her peripheral blood count and her absolute neutrophil count was 193! We are excited and hopeful to be on the path leading home and to a full recovery. Thank you for not doubting. Official medical engraftment is when her absolute neutrophil count (the most abundant white blood cell) reaches 500 or greater for two days. She has not engrafted yet but seems to be engrafting and that is something to be grateful and excited about.

The “No Data” results were seen for 6 weeks indicating no white blood cells. Notice the changes on 9/16.

Accomplishing The Impossible

Happy Sabbath and BMT Day 41. On February 22nd Ashtyn and I sat at Primary Children’s Hospital with oncologist Luke Maese facing her 3rd fight with cancer. He had just spent one week researching, contemplating, and collaborating which led him to say, “For the first time in 5 years, you qualify for a clinical study. It’s a drug called Venetoclax.” I know he was heartbroken to advise, “Ash, you need to go to Seattle.” Her plans to go to Prom, run for student body officer, do volunteer work, and start senior year healthy were taken from her. On top of that, we left home and flew to a city where we didn’t know one person. Dr Maese commented on several occasions, “Ashtyn’s in an impossible situation” and boy was she. Miraculously we began accomplishing the impossible, one situation at a time. 

On August 24th, the day she went to the intensive care unit pushing the edge of needing dialysis and a breathing tube, a package arrived at our home addressed to Ashtyn. It contained a book called, “Accomplishing the Impossible” with a note from the author, “A gift from President Russell M. Nelson.” Handwritten and signed, “To dear Ashtyn! With best wishes. Love, Russell M. Nelson.” What a perfect title from our biggest hero, the president and prophet of The Church of Jesus Christ of Latter Day Saints. I could never list all the impossible situations we have faced over the years. The reason we’ve been able to accomplish the impossible over and over again is because of earthly and heavenly angels, prayer, peace, faith, and hope. Last night President Nelson, his wife Wendy, and President Eyring spoke at the Safeco Field in downtown Seattle. I contemplated leaving the hospital to attend but didn’t want Ashtyn alone. Three friends from Seattle contacted me while at the field. Nadine sang in the choir and offered me a ticket in the section where choir member families sat. Shauna sent videos of the choir and congregation singing where I got to totally feel the vibe. Kylee Facetimed me so I could watch and listen to President Nelson’s talk. I’m so grateful for all the angels that surround us. Today let’s keep believing and praying that whatever needs to happen will happen for the transplant to engraft.

Connected To Family, Friends, And Strangers

BMT Day 39: The bad news: 1. There continues to be no white blood cells seen in her peripheral blood so there’s no sign of engraftment yet. 2. Adenovirus levels continue to rise. When adenovirus was first detected a couple weeks ago, the viral lab result was 18,000. The virus continues to be checked twice a week and the number keeps going up. I don’t remember the exact numbers of each result but basically the adenovirus level went from 18,000 to 100,000 to 400,000 to 600,000 and now it’s at 900,000. What those numbers are telling us is that adenovirus is not getting under control with the antiviral medication she’s on and is probably affecting engraftment. The good news: 1. Her kidneys are well enough that the Cidofovir antiviral medication was increased to a much larger dose. We are really hoping this new dose will be effective and the virus results on Monday will show a decreased number. 2. Other than the delayed engraftment and the virus, Ashtyn remains stable and nothing immediately scary has happened in a week. This weekend my supportive and kind sister Jen is in town and we also got to spend a few hours with my two friends Megan and Hilary who I adore. 

Side note: I’ve read many comments that start out, “You don’t know me but...” Now let’s stop there. Ashtyn and I both feel a connection and familiarity with every single person who reads her posts and knows her story. If we are ever lucky enough to run into an Ashtyn Army “stranger”, a hug would not be awkward. The feeling would be, “We totally know each other! Thank you for keeping track of Ashtyn and praying for her. Tell us more about you.” Further more, when Ashtyn and I fly home to Salt Lake City, which we will whether it’s Day 100 on November 14 or a little later, anyone not sick is invited to the Salt Lake City airport to literally cheer her through the finish line. She obviously wouldn’t be able to talk to and hug everyone but having her go down the escalator and see a baggage claim full of her Army cheering will be priceless. We will then have a BMT one year birthday party in August 2019 where everyone will be invited to come celebrate. She will then have time and health to hug and thank everyone. 

I haven’t mentioned her Go Fund Me account for awhile. The donations so far have been generous and we are so grateful. Since Ashtyn’s been alert, I’ve been able to talk to her about her dreams for the future. I know we can never give her high school experiences back but we can give her the future. She really wants to go on humanitarian trips and help other children around the world who struggle with health issues. Any money raised will allow her to dream big and do remarkable things that otherwise wouldn’t be possible. Never feel pressured. Only donate if you feel to. gofundme.com/ashtynsarmy

Venmo @Ashtyn-Poulsen

Megan and Hilary

Aunt Jen

BMT Day 38 and 100% chimerism

BMT Day 38: The last several days have been the most calm in Ashtyn’s room since the beginning of her bone marrow transplant process that started on July 31st. Her nurses stay busy but tasks are scheduled and there haven’t been any recent outlandish complications. Ashtyn obviously really really really needs neutrophils (a type of white blood cell) which solidifies engraftment and provides a beginning immune system. Despite her delayed engraftment and ongoing lack of neutrophils, everyone in the hospital is very pleased with how well she is doing. A lot of credit for her staying alive during this waiting period is given to the BMT and infectious disease teams who discuss Ashtyn’s circumstance all. the. time. Her plan of care is ever changing as they balance infection prevention and  management, being mindful to not push her kidneys into failure, and at the same time provide precise nutrition and hydration while keeping all her electrolytes at safe levels. She also requires blood products regularly because her marrow is not currently making red blood cells or platelets. Our bodies are mind blowing intricate and, as of this moment, Ashtyn is in a good place because of the efforts of many people. Most recent, she had a sleep study from 8:00 p.m. until 5:00 a.m., where she was attached to I don’t know how many wires and probes. Results haven’t come back yet but her sleep apnea is improving and using 2 liters of oxygen while she sleeps seems to do the trick. She had a recent heart echo and EKG, showing a good heart. She had a recent chest X-ray that showed good lungs. She took an actual bath, which was paradise for her, and had the strength in her legs and arms to get in and out of the tub. Most results from her bone marrow aspirate and biopsy have not come back yet to determine if there are viruses, or cell mutations, in the marrow. So far results have come back showing no leukemia! The scarce cells that are in the marrow have also been determined to be 99% new donor cells and 1% old donor cells. Her peripheral blood also showed 100% genetics (chimerism) from the donor and 0% from Ashtyn, her brother (1st donor), and Dad (2nd donor). It’s complicated but simply put, we want the blood cells that are produced in her body to be 100% donor cells, so all of that info is very good news. On top of being physically well, Ashtyn is doing emotionally great. We both feel patient, calm, and certain that engraftment will occur. We are happy and hopeful.

Sleep study set up. What you don't see are all the probes on her head, chest, arms, and legs. 

Check out the wires on her right. This girl endures it all. 

Occupational therapy.

Blood products save lives. 

She Believes

The word I naturally use to describe my kids relationship to one another is “tight”. They are super tight. From the moment each were born, time together was the norm. Seven months ago they were swimming in the Caribbean together unaware that one week later they would find out leukemia was back. One week after hearing that devastating news, Chandler hugged his siblings for the last time for two years and left on an LDS mission to serve people in Florida. Two weeks later Ashtyn and I left to Seattle to fight cancer. Life can definitely change quickly for the bad but can most certainly change quickly for the good. I’m looking forward to life changing quickly for the good where Ashtyn engrafts and we can go home. I’m also looking forward to when my four kids are together again. Until then, I’ll be grateful for this season. Chandler is a total home body... and really doesn’t like hot weather ha ha! I’m grateful for his love, dedication, sacrifice, and unselfishness to be in Florida serving others. I’m grateful for Ashtyn’s courage, faith, and patience to endure all that she does with hope for a healthy life. I’m grateful for Morgan who is staying true to herself where I don’t have to worry if she’s making good choices. I’m grateful for Ethan who, after his surroundings were suddenly without his mom, sister, and brother, he is learning that he too can do hard things. 

This afternoon Ashtyn woke up suddenly, asked for her phone, and wrote this down. “There’s a well known story in the Bible about a sick woman who believed she could be healed just by touching Jesus Christ. (Mark 5:25-34) She struggled with her health for a long twelve years, seeing doctors and doing everything she could to get better. Still, her condition only got worse. I can empathize with her frustration caused by being sick for so long and seeing little to no improvement. The fact that this woman believed there still could be a miracle for her amazes me. Jesus was walking with his disciples on a crowded street when she reached out and lightly touched His clothes. Immediately, she was healed. “Daughter, thy faith hath made thee whole; go in peace.” Sometimes I think about this story and wonder when He will make me whole. I have faith. I know a healthy life is possible for me.”

Three years ago. September 2015

7 months ago. February 2018

Goodbye to Chandler for a little while. 2/21/18

Ethan 8/7/2018

Morgan  8/17/2018

Mother Moment

BMT Day 36: I woke up today not getting my own way again with the news that white blood cells are still not seen in her blood counts. I decided I was going to have a good day regardless. The day seemed to be pleasantly uneventful with our really cool nurse Bri and awesome nurse-aid Megan. Ash had the appearance of not being in a very good mood but didn’t complain much that she wasn’t allowed to drink all day while waiting for the bone marrow aspirate and biopsy that didn’t ended up happening until 6:30 p.m.. By 8:00 p.m. the procedure was done, we were back in our room, and she still looked gloomy. I had to pipe up. “Ash, you can’t be in a bad mood all the time.” She responded, “I’m not.” I pointed out, “You haven’t been yourself in awhile. I get that you don’t feel well. I understand this sucks. It’s hard and all you want to do is go home. It’s healthy to feel those emotions for a time but then turn your focus on the good. Notice the tender mercies and miracles that happen everyday. Look! You don’t need oxygen! Awesome! Notice, you aren’t nauseated and pain isn’t too bad! Wonderful! Appreciate that you can drink anything you want right now. Finally! You have the strength to get out of bed every couple hours to use the bedside commode. Remarkable!! Your central line infection looks so much better where it doesn’t have to be pulled! There are miracles and tender mercies every single day. Expect them, keep your eyes open to recognize them, and then be grateful.” I ended my “mother moment” and she ordered a chocolate shake, lemonade, and hot chocolate from room service. Her vibe totally changed and we watched “Peter Pan” while she enjoyed her drinks.  Btw: I am AMAZED she hasn’t thrown up the chocolate shake yet and it’s been 3 hours since she drank it! Today was a good day. 

Each day I tend to ask for specific prayers. I think it’s important to be specific when praying and expect miracles. It’s also important to recognize the different blessings, tender mercies, and miracles that come when the specific prayer I want doesn’t end up happening. When I don’t get my own way from the prayer I really really beg for, I want to be grateful and trust the blessings that come instead. All your prayers have brought many miracles. Thank you. Please continue praying for engraftment and the end of adenovirus.