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.

The Low Down

We’ve been home from Seattle for 17 days and have incorporated home life with medical life without skipping a beat. How is she doing? Here’s the low down: Ashtyn’s bedroom is across the hall from mine. Each night I hook up a 1 liter bag of IV fluids with electrolytes to her central line and an IV pump infuses it over 10 hours. She wears a nasal cannula hooked up to a machine and is given 2 liters of oxygen during the night to prevent her from desaturating. There’s a baby monitor in her room. About every three hours during the night she asks me to help her to the bathroom. I always walk closely behind her to prevent any type of fall as she uses a walker to get to and from the restroom. During the day oxygen is not used and instead she focuses on deep breathing exercises hourly. A walker is always used inside the house and a wheelchair is used for all outings. She needs help getting dressed and I assist her with showers using a shower chair. Currently she has 19 scheduled prescription medications and swallows 55 pills every single day. She goes to the hospital Monday, Wednesday, and Friday for medical appointments, and Tuesday and Thursday an occupational therapist comes to our house. Physical therapy will soon be added to the schedule. Recovery is hard work and a 24/7 job. The long and slow recovery road does not surprise us or the healthcare team. Ashtyn’s body has gone through more than we can fathom. Our hope is that she will gain back all that was lost so she can start living the life she envisions. Ashtyn feels her recovery starts now. We are wondering if you all would be willing to help jump start her recovery by joining us this coming Saturday and Sunday to pray and fast for Ashtyn to bring further miracles into her life. Please fast and pray that 1. she remains cancer free. 2. she’ll be able to walk independently. 3. her gut will heal and absorb properly. 4. her kidneys will start showing signs of recovery and not need IV fluid. 5. her marrow will produce more cells to decrease transfusion needs and allow her to start the anti-cancer drug Venetoclax. 6. her lungs will regain their abilities and not need oxygen. 7. her steroid weight will melt away.

From Ashtyn

2018... I have gone back and forth on what to say about the past year. It actually gives me anxiety to even think about it because I haven’t even wrapped my head around it yet. And I don’t think I will for a while. Guys, it was CRAZY.

The year started off amazing with going to my favorite place, Disneyland, from January 20th - 24th. I then got to go on a dream trip from January 28th-February 10th to Disney World and a Disney Cruise. I had never felt healthier. I walked around Disney World for five days with no difficulty. I was on a cruise boat for a week afterwards where I scuba dived in Cozumel Mexico and river boarded in Jamaica. When I got home, I was psyched to tell my doctors and nurse practitioner about how great I felt on my trip from being 11 months after my second bone marrow transplant. I had my routine clinic appointment at Primary Children’s Hospital in Salt Lake City on February 13th. When my nurse practitioner walked into the room, I had a smile on my face but she didn’t. “Are you sick?” “Um... No.” My white blood cells, platelets, and red blood cells were much lower than they were a month prior. The next day I got a bone marrow aspirate and biopsy that showed my cancer was back for the third time.

My brother left to serve a 2 year mission for the Church of Jesus Christ of Latter Day Saints on February 21st, one week after we got the news. One week after hugging Chandler goodbye I left for Seattle to start treatment. It felt like we were both leaving for our individual missions that the Lord had prepared for us long ago. Very different missions, but both with more in store than either of us could have imagined.

The next 10 months were so. freaking. hard. I would post pictures but I can’t even stand to go through them. It was hard the whole time and I give all credit to God for getting me through it. Now, it’s time to start the recovery process. I’m in total amazement that I get to experience 2019. Let’s hope it’s polar opposite from this past year: Full of healing, patience, love, peace, and new beginnings. Only the best of wishes for you, my friends!

Christmas

Christmas Day was exactly how it should’ve been. Ashtyn, Morgan, and Ethan were home and healthy. Chandler, who’s in Florida on an LDS mission, was allowed to Skype us from 9:00 a.m. until 7:00 p.m. (except for a dinner he went to from 1:30 p.m. to 3:30 p.m..) Here are my kids thoughts. ASHTYN: Being home in Salt Lake City + getting to see and talk to my brother all day = best Christmas ever. After the rough year that we have all had, our family was able to bond and reflect on how blessed we are. In Seattle I made the goal to be home for Christmas. Hundreds of people prayed that this would come true and I begged my doctors to let me leave much earlier than they wanted. My heart could not be more full that everything worked out. We stayed in the warmth of our home and enjoyed our gifts and each other. I don’t think it could have been more perfect. MORGAN: I feel very blessed that my family was able to be united for Christmas. For the last 10 months, the date for Ashtyn and my mom to come home was postponed many times but they were able to finally come home for our favorite time of the year. Being able to see Chandler’s smile and talk to him all day was really special. It’s not common to have a missionary who is able to spend the entire day with their family. He told us stories of his experiences and we were able to reconnect until the next time we’re able to talk to him. The whole family was together and it was a Christmas to remember. ETHAN: It would be very weird if Ashtyn wasn’t home for Christmas, so I’m very grateful that she was home so we could spend time with each other. My favorite part of Christmas was that Chandler could talk all day. When we said goodbye I think we were all very satisfied that we got to ask/say everything we needed to. ME: Every year, unanimously our absolute favorite Christmas tradition is the sibling gift exchange my kids have done since they were little. The gifts always come from the heart and this year was no exception. While watching my kids interact, there seemed to not be a care in the world. Struggles of the year were forgotten, normalcy for Ashtyn was felt, and Chandler didn’t seem 2,260 miles away.

Christmas Eve

This man is one of our Christmas Eve miracles. At 1:00 a.m. this morning Ashtyn had another nose bleed despite the fact that she had just received a platelet transfusion 12 hours prior. The problem with bloody noses is a platelet transfusion is needed if it doesn’t stop and there is always a risk for a bad reaction. A bloody nose can also drop her hematocrit, requiring more red blood cell transfusions. Blood transfusions are not only time consuming, but they also raise the iron level in Ashtyn’s blood. Because of all the blood transfusions she’s had in the past her iron level is getting too high so the fewer transfusions the better. Ashtyn always quietly endures everything while I can be outwardly expressive. Enough was enough with the nose bleeds so I contacted her dad to help us get Ashtyn in to see an ENT doctor by morning. He got ahold of this wonderful man, Dr. Amir Allak, who told us to bring Ashtyn in at 11:30 a.m. to his office. When we walked into his empty office, he was waiting for us with the most calm, friendly, and laid back demeanor. Ashtyn’s septum in her left nostril was red, tender, and irritated. It’s no wonder her poor nose was having problems. There were two spots that showed dilated vessels that needed to be chemically cauterized. Within 30 minutes, Ashtyn’s nose was fixed. We were then educated on how to best treat any future nose bleeds. When we thanked Dr. Allak for being so flexible and kind, he of course said, “It’s no big deal at all.” To us it was a huge deal. On our way home I ran into a super busy Target to grab a last minute gift. The lines were packed. A gentleman in front of me asked, “Is that all you have? You can go in front of me,” I responded, “Thank you so much! My daughter is waiting in the car so that would be awesome!!!” These men are heroes who show that selfless, thoughtful, small acts of kindness make a huge impact. Merry Christmas Eve everyone!

Now What? Clinic Visits As Usual

We’re home! Now what? After a wonderful arrival in Salt Lake City Tuesday night, Wednesday morning we went to Primary Children’s Hospital and spent 4 1/2 hours in the outpatient oncology clinic. Hugs were exchanged with our hospital family who welcomed Ashtyn home with admiration and love. Medically we got right on track with where we left off in Seattle. She received a platelet transfusion, got her central line dressing changed, and reviewed with the team where Ashtyn currently is in her recovery and the plan to continue moving forward. She’s going back to the hospital today (Friday) to receive a red blood cell transfusion and talk with her healthcare providers. We are scheduled to return to the hospital Sunday for an IVIG and platelet transfusion and then a clinic visit Wednesday. Even though medical appointments occur often, it’s all good. We get to see people we love at the hospital and then go home and see family and friends there! Morgan and Ethan have been so grateful to have us home. They genuinely appreciate the time we have together. On Wednesday they hung out with us at the hospital and will do the same today. Morgan is completely present and incredibly helpful with anything we ask of her. Ethan has had a permagrin since being home and seems so relieved. We feel very blessed. Ashtyn of course loves being with her dog Marlie, family, and friends. She feels healthier and stronger from just being home. It does continue to be a struggle for her to not feel herself. Her outward appearance looks very different than when she first started her third fight with cancer. She told me, “I think if I could lose the steroid weight and be able to walk, my recovery would fly.” Please pray to our loving God that 1. she’ll lose steroid weight so she can feel herself again. 2. be able to walk so she can be independent. 3. her kidney’s will recover so she won’t need nightly IV fluids. 4. remain cancer free.