Heads Up!

Playing “Heads Up!” with her two aunts and uncle with an absolute neutrophil count of 655!

Good Things Are Happening

In the words of BMT Dr. Scott Furlan this morning referring to Ashtyn’s hospital room, “All sorts of good things are happening in here” and he’s totally right. Yesterday she walked from her bed to the bathroom and took her first shower since the beginning of transplant 1 1/2 months ago. She sat on a shower bench for 45 minutes enjoying the water on her back and independently washed her entire body. After the shower she dressed herself, walked back to her bed, put makeup on, ate chicken noodle soup, drank milk, and brushed her teeth. Those are clear signs of huge progress.

Her absolute neutrophil count is 400 which dropped a little from the previous 455 but ups and downs are expected. The overall white blood cell count went from 0.7 to 0.8 and white blood cells called monocytes and lymphocytes went up. It’s all good and I’m grateful.

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.