Recovery In Full Swing

Today is BMT Day 45. Absolute neutrophil count is 444!

On July 31st 2018 Ashtyn walked into Seattle Children’s Hospital to receive her 3rd BMT with a hunch it would be difficult but didn’t know exactly what to expect. She ended up going through what I describe as “the life cycle”, something I’ve seen several times during the five year cancer fight when her body is pushed to deaths door and back. It’s a cycle that made my independent 17 year old as dependent as a baby and now she’s working on becoming independent again. She started the transplant being able to walk, get dressed, go to the restroom, shower, eat, drink, talk, and text. Within a week of being in the hospital she needed help walking, then could only stand briefly to pivot to a bedside commode, which declined further to being bed-bound not even able to sit up. She couldn’t dress or wash herself, talked very little, and stopped using her phone. Her health deteriorated further where she was too sick to be aware of modesty. Clothes were impractical to work around so she wore a hospital gown. She was also incontinent and used a diaper that was changed every 2 hours around the clock. Each day it took anywhere from two to four people, and sometimes a patient-lift device, to weigh her, do a bed bath, and change her sheets. I would change her diaper, keep her clean, brush her teeth, manage skin breakdown, do passive range of motion, positioning, and stretching. (It’s hard to believe that was only 3 weeks ago.) Her stomach quickly became incapable of handing any food so all nutrition came from IV fluids. When drinking or eating ice chips, she could not hold a cup let alone coordinate a spoon. Ice was spoon fed and a cup of water was held for her while she used a straw. Ashtyn was as trusting as a baby and doesn’t remember most of it. The cycle is now turning towards independence again. Currently she can walk short distances with someone right beside her for fall precautions. She can stand to the bedside commode, wash herself, get dressed, hold a cup to drink, and lift a spoon to eat. Her stomach and gut are really struggling. It will still be awhile before her intestines absorb water properly and her stomach tolerates more than simple liquids. Every single day Occupational Therapy comes to her room and works with her at 11:00 a.m. and Physical Therapy comes at 3:00 p.m.. Recovery is in full swing with home being the focus.

Onto The Next Stage

We are starting BMT Day 44 with an absolute neutrophil count (ANC) of 355! Woot woot! A couple weeks ago I mentioned the rare and serious complication called graft failure which is when the donor stem cells do not go into the bone marrow and multiply like they should by Day 42. Ashtyn has not technically engrafted with an ANC of 500 yet but stem cells are multiplying which indicates that her graft did not fail. What a relief! 

When leukemia was in Ashtyn’s body on January 30th 2013, October 9th 2016, and February 14th 2018, the goal and hope was to get a BMT that would keep her in remission for life. I think of the process in four stages. Stage One: Receive one month of combination chemotherapy and repeat each month with different chemotherapy regimens until 0.00% leukemia is detected in a bone marrow aspirate and biopsy. Stage Two: Prepare for a BMT with a full two weeks of tests and workups to qualify, be admitted into the hospital for one week of conditioning chemotherapy and radiation, followed by receiving the donor cell transplant transfusion. Stage Three: starts on BMT Day 1 when the body no longer has an immune system. While waiting for the transplant to start producing white blood cells, countless medical interventions and critical care is used to manage side effects from the conditioning chemotherapy and the natural consequences of not having an immune system. Stage Four: White blood cells start multiplying. Healing and recovery begins. This stage lasts for at least one year as the immune system develops and the body recovers. Initially this stage includes slowly coming off IV nutrition as the gut starts tolerating food. Gradually less medications are needed as the body becomes more independent. With decreased medications and the ability to eat and drink, her central line will eventually be taken out. Physical and occupational therapy are used to build back strength, conditioning, and endurance. An anti rejection/ immunosuppressant drug called sirolimus is currently crucial and in months to come will be weaned off. Since recovery lasts over a year, it entails a lot. I’ll write about the process as we go along but for now, I want to give gratitude to all of you for helping us get to stage four.

Physical Therapy

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.