Anniversary

It was 6 years ago today Ashtyn was admitted into the hospital and told she had acute undifferentiated leukemia, the rarest form of leukemia. I remember how terrified my 12 year old daughter was to hear the word “cancer”. I also remember, within a few days she accepted the reality and started to tackle each day with strength, faith, hope, and kindness. That’s when we took this picture together. From the beginning we were not going to let cancer ruin us, but instead allow the experience to enrich our lives. (Her story from the beginning is written at ashtynsarmy.blogspot.com.)

2013 she was first diagnosed with leukemia, got into remission, and received a bone marrow transplant. 2016 she relapsed, got into remission, and received her 2nd BMT. 2018 she relapsed again, got into remission, and received a 3rd BMT. I’ve been asked why three transplants are so extremely rare. It’s complicated but simply put: Most leukemia patients don’t require a BMT with their first diagnosis. Ashtyn’s leukemia cells did not respond to her very first month of chemotherapy which indicated the need for a BMT once she was in remission. The fact that she then relapsed after a first and then again after a second BMT is also rare. Most remarkable, leukemia cells become more and more difficult to kill with each relapse but Ashtyn beat the odds again and again, getting cancer free for a 3rd time allowing her to receive a 3rd transplant, which is almost unheard of. She really has done what almost no one has done.

January 30th 2013 will always be the anniversary of when it all began. This date is one that I do not dread or meet with anxiety. Instead it’s a day I can’t help but feel amazed as I contemplate all that has occurred. I’m touched to think of the many hearts and hands who have impacted and enriched our lives. I’m humbled to think of the countless people who care deeply for Ashtyn. My heart is full of warmth thinking of the wonderful hospital staff we’ve met over the years who continue to cheer her on. All the good I’ve seen during the past 6 years fills my heart with such awe and gratitude that there’s hardly room enough to feel the sufferings of the past.

Accomplishments

I love how we all have different lives but we all have the same emotions. Excitement, disappointment, relief, discouragement, anxiety, calm, stress, peace... you get the point. We can all relate to one another, not because we walk the same lives but because we feel the same emotions. Each day we all have accomplishments. It could be that I actually cooked dinner for my family, or Ethan did all his reading and homework, or Morgan balanced her school, family, cheer, fitness, and spiritual goals well, or Chandler had a difficult conversation he would have rather avoided, or Ashtyn wore her boots that stretch out her ankles and did breathing exercises throughout the day. Whatever the case may be, each and every day there are accomplishments to notice and celebrate. Friday we celebrated that Ashtyn left the hospital after being there for a virus. Before leaving I gathered our three suitcases (mostly blankets), two backpacks, a wheelchair, and her walker. Kathy, who had been her nurse for the three hospital days, was at our side along with my wonderful friend Angie and her dad. Because Ashtyn had been isolated to her hospital room with very little space to move, I thought it would be good for her to walk some of the way to the car. At first she hesitated thinking of how embarrassing it would be to walk in public using a walker with tennis balls, connected to a oxygen tank, with a IV fluid bag hanging and hooked up to her central line, and being much heavier than she once was before having been on steroids. I’m sure to her it was like an episode of “My 600-lb Life” combined with “The Golden Girls.” With tears in her eyes, she walked out of her hospital room. We all figured she’d need to sit down after walking to the doors outside the cancer unit, but instead the tears were gone and she kept going. Once we got to the elevators I offered for her to sit in the wheelchair. “No. I’m fine.” She stood in the elevator as it descended from the 4th floor to the 1st floor. We proceeded to walk to the hospital exit doors where she then sat down so I could pull up the car. Ashtyn accomplishes more than she realizes. I think we all do.

No Complaints

I have no complaints after Ashtyn’s first full day in the hospital fighting a virus. Yesterday was a calm and pleasant day. Her fever is gone, blood pressure is perfect, oxygen requirements seem to be decreasing, and we got to be around hospital staff who are like family. We will stay a couple more days to make sure her health doesn’t worsen. 

There are definite benefits living 15-20 minutes from Primary Children’s Hospital. After school Morgan drove Ethan to the hospital before she went to cheer. Ashtyn got to spend time with her siblings while I read with Ethan and helped him with homework. Jason, their dad, dropped off D.P. Cheesesteaks for dinner. At 9:00 p.m. Ashtyn started watching Ratatouille while I drove Ethan home, tucked him in bed, hugged Morgan goodnight, and took a shower. The movie was over not longer before I returned to the hospital for the night. (Morgan will get Ethan to school in the morning and again drive him to the hospital after school.) 

The last couple of weeks Ashtyn and I have definitely felt more weary and run down. We’ve been tired and felt we didn’t have much reserve to handle bumps in the road. It turned out, when facing this stumbling block virus, we had more energy and ability than we thought. The unexpected hospital stay hasn’t been miserable at all. It’s given Ashtyn’s body the support needed to handle the Coronavirus remarkably well. It’s also given us rejuvenating energy we didn’t expect to get. Thank you for your prayers.

Coronavirus

Ashtyn continues to go to BMT clinic appointments Monday, Wednesday, and Friday. Tuesday’s she has physical therapy and Thursday’s is occupational therapy. Our hope is that she will literally walk, without assistance, with the rest of her Brighton High School graduating class of 2019 in June to then move forward to other life adventures. Until then we keep busy trekking forward with the slow recovery taking one day at a time. Yesterday morning I felt weary. Ashtyn’s oxygen saturation’s were low making me realize she not only needs oxygen while sleeping but also during the day. Also her temperature was 99 degrees, not technically a fever but higher than her normal temperature of 97. By 2 p.m. I called the hospital because her temperature increased to 100 degrees and I had an uneasy feeling. It was agreed that it would be best to admit her into the hospital. Morgan was a lifesaver. She helped me remain calm as she stayed with Ashtyn while I packed suitcases. She then helped me get Ashtyn to the car and drove behind us with Ethan to the hospital. The moment we got to the oncology floor, vital signs were taken. Ashtyn’s temperature was 101.5, her oxygen saturation’s were in the 70’s without oxygen, her capillary refill time was prolonged, and her blood pressure was low. She was given 600 ml of IV fluids over 30 minutes, labs were drawn, antibiotics given, heart echocardiogram and chest X-ray done, all within an hour. It was remarkable to see nurse practitioners Hilary and Laynie, and nurses Dave and Shannon, who we have loved and known for years gather around Ashtyn with so much dedication and care. I can’t even explain how good she is treated. By 6 p.m. we were settled in the hospital room. We hung out, ate dinner, and studied John 1 as a family before Morgan and Ethan left for home. I’m now laying on a couch bed next to Ashtyn and am grateful to have Kristin, a nurse we adore, keeping a close eye on her tonight. Tests to check for bacterial and virus infections are still pending but so far she tested positive for Coronavirus. Please pray 1. Her body will handle and fight the virus. 2. Her blood pressure will stay in a normal range. 3. Oxygen needs will go down.

Don't Feel Bad For Us

We just had a weekend to be grateful for. Friday morning, clinic day at Primary Children’s Hospital, started off good when one of the three bone marrow transplant front row parking spots was available. I love when that happens. Ashtyn’s platelet count was high for her at 60 so she didn’t need a transfusion. Woohoo! Her heart echo showed good heart function and stable pericardial effusion. Awesome! I love walking into clinic and being around our hospital family. It’s an added bonus of joy when we get to talk to cancer families who have become forever friends. I wish everyone could spend a day or two with us interacting with those involved in pediatric oncology. I’m confident that afterwards you wouldn’t feel bad for us because of how amazing it is being around patients, parents, nurses, techs/aids, doctors, NP’s, PA’s and so many other remarkable people we deeply love. We all talk about our lives outside the hospital and often times have stories to laugh about. We talk about sad things, happy times, deep thoughts, and light humor. It has been such a privilege to be around the pediatric cancer community in Seattle and Salt Lake City. I have never seen such goodness in any other environment. Everyone puts their heart and soul into caring for others so it’s never a drag to go to clinic appointments. Saturday was full of the things we love. Morgan had a cheer competition, Ethan had a hockey game, and Ashtyn hung out with two cancer fighting friends. Sunday was wonderful. Our church building is within view of my house, 1/2 block away, so we left Ashtyn home away from germs and went to church for two hours. The afternoon was spent together playing Rock Band and cooking before going to my mom’s house for dinner with extended family. It was a rejuvenating weekend. I hope we all can tackle this week and make it meaningful.

A Down Day

Ups and downs are a part of life. For me, the ups always outweigh the downs, but today I’m going to tell you about a down day. Wednesday Ashtyn’s BMT clinic started at 10:30 a.m.. In addition to blood labs and needing a platelet transfusion, a CT scan was done to follow up on a previous lung infection. The CT scan showed that the lungs looked healthy but unexpectedly showed a moderate amount of fluid around her heart. Fluid can put pressure on the heart preventing it from pumping properly. She got a heart echo right away. If fluid around the heart decreases it’s function, she would need to be admitted into the hospital, have a drain placed in her chest, and start taking steroids to treat the problem. We were relieved the echo showed good heart function and were able to go home. Today she’ll get another heart echo to check heart function and see if the fluid is more, less, or stable. In the meantime, if Ashtyn begins to feel pressure in her chest making it difficult to breath, I’ll take her to the hospital immediately. After hearing the news about her heart, Ashtyn left the hospital at 5:30 p.m. feeling pretty down. We aren’t immune to other life issues and the night only got worse when a conversation, she immediately regretted, happened with a cousin. By the time we went to bed, I don’t think we had felt that troubled and exhausted in a long time. The next day there was still some sadness in the air but Ashtyn’s hopes were high that the fluid around her heart would stay stable. Physical therapy came to our home for over an hour followed by occupational therapy for another 1 1/2 hours. Ashtyn has two wonderful therapists who are extremely skillful and caring. The goal is to help her gain back strength, endurance, and flexibility needed to walk again. During OT we found out that a dear family in the cancer community is losing their child. I received a text in the morning from his mom, “Hope to see you guys tomorrow (in clinic).” Five hours later things changed unexpectedly and a text was received, “he is not going to be here much longer.” Ashtyn slept the rest of the evening. Please pray the Dansie family will feel peace and fluid around Ashtyn’s heart will decrease.

Get's Your Hopes Up

Sometimes Monday’s are a dreaded day but I’m going into it feeling a lot of excitement. I’ll explain why. Friday was a scheduled clinic day with an 11:00 a.m. appointment. At 10:15 a.m. I received a text from my neighbor Kat. Being away from home, she and I hadn’t communicated for 10 months. At 10:50 a.m. Ashtyn and I were ready to head out the door for the hospital when Ash told me she felt too weak to walk. That was entirely unusual and in fact has never happened before. She’s always able to walk short distances using a walker or putting her arm around me. At first I didn’t know what to do. I wouldn’t have thought Kat was home but since I had just heard from her I texted asking if she could help me get Ashtyn to the car. I don’t know exactly why but Ashtyn sobbed when Kat walked into our house. Kat just held her. I wish I had a picture of the tender moment. After several minutes Ashtyn put one arm around Kat, one arm around me, and we walked to the car. Kat told us she would pick up lunch and then drove to the hospital to hang out with us for a couple hours. She has such a fun, refreshing, genuine vibe with the most captivating personality. What a last minute blessing she was for us. At clinic, Ashtyn’s labs were less than ideal. Her hematocrit dropped quite a bit from two days prior and her kidney creatinine level was heading in the wrong direction. She needed a platelet transfusion and two units of red blood cells. At 2:30 p.m. I called Morgan and asked her to pick up Ethan from school. “We will be at the hospital for awhile. You and Ethan can stay home or come hang out with us.” They chose to come to the hospital. We ended up having to stay until 10:00 p.m. but that was ok because we talked to wonderful nurses, doctors, and nurse practitioners... plus we got to go home and sleep in our own beds! We are very grateful for all the prayers said for Ashtyn over the weekend. Today she has another clinic appointment. We are going into Monday so much different than Friday. I sense more stability and strength in her. It’s subtle but it’s there. I’m excited to start seeing progress these coming weeks that’s been absent the past month. My philosophy, “Get your hopes up!” Why not? It never hurts to expect good things.