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.

Unpredictability And Cancer Go Hand In Hand

Yesterday did not end up how I thought it would, but unpredictability is a partner to cancer. Throughout Sunday and Sunday night, nerve pain was impossible to manage. At Ronald McDonald House, she took the strong narcotic Dilaudid as well as a 1:1 tincture of CBD and THC, both recommended by her doctors and both provided little relief. I also gave her Tylenol and Benadryl hoping something would help. Nothing. We kept thinking the pain would improve when really it just got worse and worse and eventually took away her ability to walk and function. At 8:00 a.m. on Monday I called the oncology clinic to let them know she needed to be admitted. We took the suitcases that were packed the night before and headed to the hospital. In an attempt to lessen pain immediately, a couple doses of IV Dilaudid were given which had zero effect on bringing comfort. By noon she was in a hospital room and by 1:30 p.m. the pain team had a plan. Gabapentin was stopped and another nerve pain medication called Pregabalin was added. She was hooked up to monitors and a continual low dose infusion of Katamine was started, which is an analgesia drug that’s known to help neuropathic pain. While those drugs continue to take effect, oral Dilaudid is used with the occasional IV Dilaudid when needed. After 16 hours in the hospital, pain gradually came down from a 8/9 to anywhere between 5-7. Her legs continue to be weak and painful requiring help to walk but we are relieved to see some progress. I’m impressed with how Ashtyn has handled it all. Though I personally have felt some frustration and sadness, she has never gotten down on God, complained, or wanted a pity party. She quietly endures with remarkable grace, patience, and strength. I’m really proud of her. My friends flew back to Salt Lake City. I will forever be grateful to them. Ethan is staying in Seattle with us and is our sunshine. Please pray she remains healthy in the hospital.

Nerve Pain

My two girlfriends, Kathy and Holly, and son Ethan have been in Seattle visiting for the past six days. During that time Ashtyn has been struggling with nerve pain. Everyday the location and level of pain has been unpredictable. The effectiveness of pain medications has been sporadic as well. Sometimes medications help, other times they don’t. We have been taking each day as they come and were fortunate to be able to go on one outing everyday except yesterday. Yesterday’s pain was constant and most severe. She could not walk to the restroom without assistance and sleeping was impossible. Two men from the local LDS church came to the Ronald McDonald House at noon and gave her a priesthood blessing. Afterwards she slept well for a couple hours and then woke up with pain again. I didn’t leave her bedside all day so I could help her walk when needed and give different medications in hopes that something would work. Holly and Kathy never left either except to make us dinner. They provided the most calming support. By 11:00 p.m. pain was excruciating and something needed to change. Tears filled my eyes as I felt such sadness seeing her in pain and such frustration not seeing prayers answered. Right then and there I said a prayer out loud. We really do trust God. I told Him that I would start getting ready to take Ashtyn to the hospital. I asked if He would make sure her pain remained high if it was best to take her in. If it was better for her to stay at the Ronald McDonald House then I wanted her pain to ease a bit. After ending the prayer I began preparing to be inpatient. I gave her all the night medications, called the hospital on-call resident who gave the ER a heads up that Ashtyn was coming, two suitcases were packed, and I took a shower for the long day ahead. I was ready to leave for the hospital at 1:00 a.m. and found her sleeping. She slept for a couple hours before waking up and decided to continue trying to manage the pain outside of the hospital. Please pray that 1. her nerve pain will decrease 2. her steroid weight gain will decrease. 3. she will be cancer free by the end of the week.