Hoping Not To Return Home For 120 Days

It has been over four months since Ashtyn started cancer treatment in Seattle. During that time there were several occasions we flew to Salt Lake City to enjoy home for a few days. Each time was a last minute opportunity and each time we wondered if it was going to be our last time home for awhile. Eleven days ago we left the hospital to fly home for what we thought would only be four days. Because of schedule changes, we ended up being home for eleven nights and eight full days. What a blessing. Most of that time Ashtyn didn’t feel as well as she would have liked but nothing beats being home. Yesterday we flew back to Seattle with every hope and prayer that she won’t be going home again until November 7th. A bone marrow transplant is terrifying but having leukemia is even more so. Being away from home for 120 days straight is not ideal but it’s the only way to get her home for good. With the news that her last bone marrow aspirate showed 0.00% leukemia cells, today she is moving forward with a two week transplant preparation process. Her body must pass all requirements to qualify for a bone marrow transplant including healthy lungs, heart, kidneys, and liver. She will also receive another bone marrow aspirate and biopsy next week that must show 0.00% leukemia cells with 25% cellularity. Please pray that in the next two weeks 1. she’ll remain in remission with no evidence of leukemia. 2. her marrow will increase to 25% cellularity. 3. her body will be infection free and healthy enough to qualify for a transplant. 4. the bone marrow transplant will begin on July 24th without delays.

Heaven Is Shining

It seemed like Heaven was shining down on Ashtyn today. She woke up feeling well and energetic. Her favorite friend and home health nurse came over to give her a central line dressing change because no one can do one like Dylan. He got blood for labs and started an IV fluid bolus and medication infusion. She drank 7 ounces of the study drug Venetoclax which normally makes her want to cry but today she hardly tasted it. Throughout the afternoon she felt motivation to work on school packets while we waited with calm anxiety for the results of her bone marrow aspirate and biopsy. At 5:41 p.m. I got a phone call from Dr. Adam Lamble informing us that results came back showing 0.00% leukemia cells. Unbelievable! We are extremely relieved and deeply grateful. It wasn’t that we were hopeless but we definitely anticipated and had our guard up to receive results showing cancer. I give full credit to insightful doctors and medical interventions coupled with everyone’s prayers and fasting for Ashtyn’s 0.00% leukemia results. There is no doubt in my mind that modern medicine and miracles continue to save Ashtyn’s life. Thank you to everyone for being a part of it. As of now we will return to Seattle on Monday and begin the two week bone marrow transplant preparation process. Around July 23rd she’ll be admitted to Seattle Children’s Hospital for chemotherapy and radiation and receive a bone marrow transplant around July 30th. Ashtyn will then remain in Seattle for a minimum of 100 days before returning to Salt Lake City to further her recovery. Her marrow cellularity is currently 10%. Please pray that her marrow will continue to recover from past chemotherapies and reach 25% cellularity in the next two weeks with zero leukemia growth so that she’ll qualify for the BMT. Thank you for walking this journey with us. Much love to you all.

Crazy Awesome

My life is crazy. Sometimes it’s crazy difficult but so many times it’s crazy awesome. Today was crazy awesome! Ashtyn and I arrived at the airport in Salt Lake City at 7:00 a.m., got to the gate in 20 minutes, an airline service personnel moved our seats near the front of the plane, the flight left on time, and Ashtyn felt relatively well. Once we landed in Seattle and exited the plane, an airport worker was right there waiting for us with a wheelchair, the gate was near the airport exit, and we quickly got to our car. We drove directly to the hospital arriving 20 minutes early to our 11:00 a.m. appointment. I was unaware that a Snickers bet was made in clinic of whether or not we would make it to our appointment on time or be late due to flight or traffic delays. I’m happy to know our nurse coordinator Shauna put her bet on us, stalked our flight in anticipation, and won the Snickers bar. Lesson learned, don’t ever bet against us. Ashtyn got platelets, anti-nausea meds, had her bone marrow aspirate and bilateral biopsies, central line dressing change, and a 2 hour Ambisome infusion. We left the hospital at 4:30 p.m. because the nurses and Dr Lamble were super efficient and worked together to get everything done. We had time to go to Walgreens for multiple medication prescriptions, grabbed a few things from Ronald McDonald House while Ashtyn drank her disgusting study drug, drove to the airport, and easily boarded the plane for home. Another really cool thing about the day was that my 2nd cousins from my dad’s side, who I’ve never met, were in Seattle and came to the hospital right before Ashtyn’s procedure to visit us. It definitely didn’t feel like the first time we’ve met. We hugged and chatted. They are my family and we were grateful to have them there when Ashtyn fell asleep for her bone marrow aspirate. I am now on the airplane flying home with Ashtyn sleeping beside me and I couldn’t be happier about the day.

Nothing Is Set In Stone

Several days ago a CT scan of Ashtyn’s lungs showed two small nodules. Extra caution is being taken because of the hope she’ll receive a transplant this month so an anti fungal drug called Ambisome was started. It is a two hour IV infusion done in the hospital so our three days home were spent with family as well as a daily four hour visit to Primary Children’s Hospital. Monday we were able to see Dr Luke Maese along with other staff we love. We appreciate them so much and are grateful for their continual support and care. At 4:00 p.m. I received a phone call from the BMT coordinator in Seattle informing me that her scheduled appointment on the 5th was moved to the 10th. We had been planning on flying to Seattle on Tuesday morning for Ashtyn’s bone marrow aspirate. Wednesday she and I were going to spend 4th of July kicking our feet up at the Ronald McDonald House. Thursday and Friday were going to be spent at Seattle Cancer Care Alliance to start the BMT process while hopefully receiving cancer free results by Thursday. With the change of not having any appointments for six days, the only logical thing to do was to fly back to Salt Lake City after her Tuesday aspirate in Seattle. There was a lot of communication between the doctors and nurse coordinators in Seattle and Salt Lake City. The new plan: We are flying to Seattle today at 8:30 a.m., will drive directly to the hospital for Ashtyn to get a platelet transfusion, her bone marrow aspirate, and the Ambisome medication infusion. We will then drive back to the airport and catch the 8:45 p.m. flight home. If results come back Thursday showing 0.00% leukemia cells, we’ll fly back to Seattle on the 9th and stay there for four months. My way of life has changed completely from when my kids were young. I used to be a Day-Planner girl who would look three months ahead, have a packed schedule, and was pretty confident things would go as planned. Now I look ahead one week, guess what may happen, and then take life two hours at a time never being surprised with the surprises. Nothing is certain in life except the actual moment I’m living. It’s very freeing to let go of all control and simply move wherever the current takes me.

A Surprise From God

Thursday I got super stressed. I was worried about Ashtyn’s current health and her future. My heart ached because of all she’s been through and all she’s missed out on. I wondered what more could possibly be expected of her. There was nothing more she could sacrifice when everything (in my mind) had already been taken from her. I felt her situation was cruel and very much on the level of Job. I reviewed in my mind possible side effects a cancer patient could experience and figured she had dang near experienced them all. A number of emotions dug into my heart including fear, anxiety, defeat, and submission. One thing I didn’t feel was anger. I wasn’t angry with the situation or with God, I just felt hurt and worried. For some reason I started singing church songs in my head which I have never done before. Words like, “Heavenly Father are you really there? And do you hear and answer every child’s prayer?” And, “I need thee every hour, stay thou nearby.”  And “Where can I turn for peace? Where is my solace?” I’ve never experienced this before but within minutes the pit in my stomach calmed and the weight of worry lifted. I enjoyed watching a movie with Ethan and went to bed near 4:00 a.m. with trust that things would work out. Little did I know what that meant. I was completely surprised and in total awe as Friday unfolded before my very eyes. Ashtyn’s health had dramatically improved to where it was clear she was ready to leave the hospital. From 8:30 a.m. until 6:00 p.m. more hospital staff than I can list worked together to get everything in order for us to go home for three days. Procedures were moved around, orders were quickly written, her oncologist Adam was contacted who then contacted her Salt Lake City oncologist Luke to coordinate care while home. Nurse Becky from SL called me to schedule Ashtyn’s daily anti-fungal infusion that will take place at Primary Children Hospital. While behind the scenes logistics were being taken care of by doctors, Ashtyn had a procedure in the OR, a medication infusion, blood transfusions, and central line dressing change. Everyone worked together to do what they could to get us home and thought nothing about what a hassle it was on them. We left the hospital as soon as her blood transfusions were complete at 6:15 p.m. and easily made our 8:45 p.m. flight. I’m grateful for individuals who literally change my life with small acts of kindness. (Small and simple things really do bring about great things.) I’m also grateful to God. There are times I wonder where He is and why He’s not helping me more. I try to keep my walls down with Him because sure enough He always comes around and makes His love known. We are grateful to be home. We are grateful to have seen God’s love. Sunday we are fasting and praying for Ashtyn to have cancer free results next week. We would love if you would join us. Her entire journey has been a group effort and we’re grateful for every single prayer and fast. We definitely have been blessed and strengthened.

A Lot Can Change In One Day

Thursday the general vibe was defeat. Ashtyn cried several times throughout the day feeling disappointment. She was sad her body wouldn’t allow her to be awake longer than 5 minutes. Anytime she was awakened to do a task, a few minutes later she’d fall back asleep. At 3:00 p.m. she was wheelchaired to the hospital gym for occupational therapy and fell asleep while doing arm exercises. At midnight Ethan and I watched The Martian. She was too sedated to join us. Ethan was going home the next day and Ashtyn was disappointed to have missed so much time with him. Friday morning her exhaustion lifted. Ethan saw it in her eyes immediately and said, “Hi Ashtyn!” as if he hadn’t seen her in days. The Friday afternoon bronchoscope to check for a possible fungal lung infection was moved to 10:30 a.m. The bone marrow aspirate that was scheduled for today was bumped until Monday because of the bronchoscope. The oncology team wanted to give Ashtyn the chance to go to Salt Lake City so they moved the bone marrow aspirate to Tuesday afternoon giving her three days at home. With all of the moving parts of the last two weeks, I’m shocked that we are able to fly home tonight. After going under anesthesia for a lung procedure, getting two units of blood, and a two hour fungal medication infusion, we’ll leave the hospital, go straight to the airport, and sleep in our own beds tonight.

Progress And Side Effects

It’s been three days since Ashtyn was admitted into the hospital with severe and debilitating neuropathic pain. The drug Pregabalin was started, which helps with nerve pain, but takes time to become effective so in the meantime Ketamine, Dilaudid, and Ativan have been used. The benefit of all these medications is that they lessen the intensity of pain. The downfall is Ketamine has caused some hallucinations, drowsiness, and tearful emotions while Dilaudid and Ativan makes her super sleepy. Pregabalin also has caused a few side effects including fatigue, jerking and twitching muscles, difficulty paying attention, and forgetfulness. Comparing her to a few days ago, she was in a lot of pain, alert, sleepless, and unable to walk. Yesterday she was in less pain, slept most of the time, had unclear thoughts and speech, and continued needing complete assistance to walk. It’s difficult for me to gauge improvements when she went from not being herself because of pain to not being herself because of sedation. Ethan has been at her bedside for 3 days straight. I know she wishes she had it in her to watch movies and hang out with him but at this point she hardly notices he’s there. With pain decreasing, the goal is for her to become more mobile, less sedated, and off the IV continuous Ketamine. She and I were suppose to fly to Salt Lake City with Ethan on Friday. I wish it were in the cards for her to go home but I don’t know if it is. Please pray that if one door closes, a better and brighter door will immediately open and that peace will continue to be felt.