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.

We All Did It!

Today we are going home. My heart is torn to tears. It aches as we leave Seattle locals who became instant forever friends. We were rallied around by them and never felt abandoned. My heart aches as we leave a hospital community that not only saved Ashtyn’s life but made the journey joyful and sweet. We felt cared for from the moment we arrived at Seattle Children’s Hospital on March 6th. From the very beginning, each person we interacted with bent over backwards to support me and Ashtyn in whatever way they could. How my heart hurts to leave people I deeply love with an insufficient ability to say Thank You. At the same time my heart rejoices and is almost in shock with the fact that we are really going home. WE ALL DID IT!!! ASHTYN DID IT, accomplishing everything she set out to do. She got cancer free after five months of the darkest times of her life. She survived over four more months for the bone marrow transplant that sank her to rock bottom. She’s now recovering and seeing herself as the strong, graceful, powerful, tender, independent, kind, fierce, loving, unstoppable woman she is. I DID IT, succeeding not only at walking side by side Ashtyn but was fully immersed in the hell and heaven of it all. As her mom I want her to know that I saw it, walked it, felt it, lived it, and am a witness to the suffering and miracles that occurred. HER ENTIRE HEALTHCARE TEAM DID IT giving Ashtyn the chance to live a long life. They turned their doubts to hope and believed in her, giving every tool she needed to beat cancer for good. MY KIDS AND FAMILY DID IT, taking this trial and becoming better because of it. ALL OF YOU DID IT. You prayed, hoped, encouraged, felt our burdens, lightened our load, believed, loved, fasted, commented, lifted us up, and prayed some more. GOD DID IT. He was there every step of the way, no question about it. He fulfilled His promises that I felt almost six years ago when Ashtyn was first diagnosed with leukemia on January 30th 2013. I felt my Heavenly Father say, “Suzanne, do your part and ask everyone to pray and do their part. Hand over Ashtyn to Me with trust and I will orchestrate something beautiful.”

Dr. Adam Lamble

Before going home tomorrow, I need to write about our main man in Seattle, Ashtyn’s oncologist Dr. Adam Lamble! Adam is not only brilliant but also funny, down to earth, involved, and super friendly. We first talked with him on March 1st 2018 during a conference call when Ashtyn was approved for a clinic trial in Seattle. Adam lead the call where he introduced the high risk leukemia team and we introduced ourselves to them. I remember liking him right away. We met in person on March 6th and he has walked side by side Ashtyn ever since. Because of her medical history, the prognosis was grim that she would get into remission let alone survive a 3rd transplant. Adam quickly became an “Ashtyn believer”; never doubting her even during very concerning times. Throughout it all he was involved in every big discussion and decision, making sure she knew he had her back. He guided each chemotherapy treatment getting her into remission by July. Once in the hospital for the bone marrow transplant in August, he continually stayed informed and involved. I’m grateful for the part he played in saving Ashtyn’s life. I will also never forget the respect he had for her. Often I would praise him and the high risk leukemia team for how amazing they are. His response would always deflect back to Ashtyn expressing how amazing she is and his gratitude for her. He would praise her for being such a remarkable fighter and for giving them the opportunity to explore cancer treatments that they hope will one day be mainstream for other patients. He commended her for bringing hope to others. We are grateful for Adam bringing hope to us. We will love him forever.

Shauna

Shauna is the second person we met at Seattle Children’s Hospital. She is the nurse coordinator for the high risk leukemia team and is adorable! I will never forget meeting her March 6th 2018. After we checked in with David and got blood labs, Shauna greeted us with the biggest smile. I noticed immediately her friendly, super fun, laid back vibe as she led us into a conference room to meet the high risk leukemia team from 9:00 a.m. until 1:00 p.m.. Ashtyn also had a bone marrow aspirate and biopsy scheduled for 2:30 p.m. and we knew it was going to be a long day for her. Having a marrow full of leukemia cells, Ashtyn felt awful and had zero energy. I will never forget Shauna’s thoughtfulness as she noticed Ashtyn’s quiet struggle and quickly brought a bed into the conference room. That act of kindness made all the difference. Ashtyn slept comfortably all day while I talked with her healthcare providers. There’s no way she could have tolerated the day any other way. From that moment on, Shauna has been a bright light for us. Each time we went to clinic she would find us to say “Hi”. We’d always laugh and have such fun conversations. While Ashtyn was in the hospital for 3 1/2 months during her transplant, Shauna would visit us weekly just to check in. There’s something about her that would always bring familiarity into our life. I appreciated the time she spent looking out for us. She is one of my heroes. Ashtyn and I have definitely been changed for the better from many significant interactions during our fight with cancer. I often wonder how I could possibly thank individuals for having such a positive impact on our life and haven’t figured out the answer to that yet.

David

Saying goodbye to David, who works at the front desk of the outpatient oncology clinic. He was literally the first person we met when we walked into Seattle Children’s Hospital for the first time. It was on March 6th 2018 at 8:30 a.m., 17 hours after arriving in Seattle. It was a day that started with a dark and heavy feeling as I navigated a city I didn’t know with a daughter sick with leukemia. Ashtyn had just left home and everything she knew to fight cancer for the third time. I felt the weight of being her rock while finding out where we were going to live, meeting everyone we needed to meet, and making sure I was one step ahead of the demands. With those feelings, we got off an elevator and approached the first desk I saw. “I’m looking for where I need to go to get my daughter’s blood labs.” David responded with the most genuine happy smile, upbeat energy, and a total friendly vibe. “Hi! You’re in the right place!” That day, and many days after, I mentioned to him what a ray of sunshine he is. The cancer fight can be overwhelming and drag on me sometimes, but when David was there to welcome us to clinic any heavy feelings would immediately lift. He talked with Ashtyn as if they were the best of friends and could always find common interests. He consistently showed genuine interest in her life and excitement each time he saw her. It wasn’t just Ashtyn he impacted with each appointment, I watched David connect to every single patient he checked into clinic. I would be amazed and in awe at how he opened his heart and life to everyone and everyone responded by opening up to him. He’s one of my heroes. I hope to be more like David.

Planning The Homecoming

After nine and a half months in Seattle, Ashtyn is returning home to Salt Lake City!!!! CAN YOU BELIEVE SHE DID IT? It’s been such an unbelievably long battle, and they’ve got a long way to go, but they’re coming home!! We invite all those to the airport who would like to welcome her home. Let's cheer for her as we celebrate what she accomplished and give her support as she starts the months of recovery ahead. She is arriving on Tuesday, December 18th at 7:04 pm (DELTA FLIGHT 198.) This is our chance to gather together and celebrate this miraculous young woman. We hope it’s a moment Ashtyn will never forget. *If anyone has a cold, cough or fever, please stay home and show your support when you’re germ-free. (Bring extra hand sanitizer and pass it along as you wait!)

Being days before Christmas, we thought it would be extra special to shower Ashtyn with Christmas ornaments. Friends will be collecting cards and ornaments at the airport for Ashtyn to put on her tree for years to come. If you can’t make it to the airport, please pick out a special ornament for Ashtyn and send it in the mail! (Even if it arrives after Christmas!) We hope to give Ashtyn a collection she can keep her entire life and hang each year to remember this triumphant homecoming. Please send your ornaments to this address: 6666 S Cristobal St, Cottonwood Heights UT 84121. #ornamentsforashtyn

 Xoxo, Janet

When In Doubt

If I were to write a book titled, “Pediatric BMT: Caregivers Guide 101”, one of the topics would be: “What to do when your child has a bloody nose that lasts longer than 20 minutes.” Simple. Don’t keep thinking it will stop. Call the hospital and take them in for a platelet transfusion. It’s a no brainer and something I’ve known for years but Wednesday night confused me. It all started at 6 p.m. when Ashtyn’s left nostril started to bleed. That isn’t uncommon and in fact happens daily. The thing that threw us off was that it wouldn’t stop like normal but wasn’t persistent either. It would slowly bleed, clot and stop, then bleed again. Several times I had the phone in my hand to call the team but then it would stop again. I figured her platelets were decent with the clots I saw. Should we go to the hospital? Ashtyn and I could not make up our minds, mostly because she had a platelet transfusion scheduled for 9:40 a.m. and the bleed was so unimpressive. Side note: Ethan had also just arrived in town, which really wasn’t a factor in the decision. Anyways, all night we slept super light, dreaming of nose bleeds and hospitals. By 2 a.m. we regretted our decision to not go to the hospital but by that time it seemed more of a hassle than to just wait until morning. All night was stressful. When she’d get up to the restroom blood would drizzle out. When she laid down the bleeding would stop though I’m now convinced it was slowing going into her stomach. Morning could not come soon enough. At 8:45 a.m. she packed her nose with tissue and we headed out the door for clinic. Once there she wore a face mask so no one could see her nose and got blood labs. Her platelet count was 21 which really wasn’t horrible; sometimes kids don’t get transfusions until less than 10. Her hematocrit was quite low at 21 and her pale skin showed it; blood transfusions are given when her hematocrit is less than 25. We spent 8 hours on Thursday getting a platelet transfusion that stopped the nose bleed and a red blood cell transfusion that gave energy and color to her face. I will say, Wednesday night was super stressful but we kept reminding ourselves that, that particular moment was not going to last forever. Sure enough it didn’t. Lesson learned, when in doubt don’t drag our feet with a nose bleed.

The Recovery Road

As we prepare to go home, we had a bone marrow transplant summary conference with BMT Dr. Summers to go over where Ashtyn is in her recovery and what the plan is moving forward. All the information discussed will be sent to Primary Children’s Hospital in Salt Lake City to further her care there in one week. It’s only been 128 days since the transplant. Almost every organ system has been affected negatively by all of the chemotherapy, radiation, and three transplants. She’ll be going home on 21 total medications, 53 oral pills a day, as well as potassium, phosphate, acetate, and magnesium IV fluid every night. Once home she’ll continue to be seen by a BMT team, and follow up with her oncologist, nephrologist for kidney issues, pulmonologist for decreased lung function, cardiologist for rhythm and fluid monitoring, endocrinologist for hormone replacements, neurologist for neuropathy and nerve function, metabolic bone specialist for bone health, and physical therapist to help her walk again. She will continue receiving platelet transfusions at least twice a week and occasional red blood cell transfusions until her marrow can recover better than the current 5% cellularity. Because of how incredibly rare a 3rd transplant is, there’s very little medical data; but even so, the complications and slow recovery comes as no surprise to anyone. Her body has been through a lot. It’s going to take a long time to recover but no doubt she’ll get there.

Bone Marrow Aspirate and Biopsy

Pictures are from two weeks ago when my mom and dad flew to Seattle for a visit. We enjoyed downtown Seattle and the Bellevue Festival of the Nativity. Ethan flew back home with them 10 days ago and since then our time has been spent going to medical appointments and staying occupied in our apartment. Last week a bone marrow aspirate and biopsy was done that brought about prolonged bleeding from the procedure hole in her back. I think it’s an extremely rare complication. Despite a platelet transfusion and constant pressure dressings, the bleeding continued with no signs of stopping. After 38 hours of continual bleeding, I decided to pinch the hole shut with my fingers while Ashtyn prayed the 3 steri strips I put over the hole would keep it closed. It worked and her back hasn’t bled since. On top of that, ultimate good news is that her aspirate came back showing another 0.00% leukemia result! Finding out she continues to be cancer free will always bring tears of relief and gratitude. (The cellularity results will come back in a few days.) Please pray 1. Her health will continue to be stable allowing us to go home on December 18th. 2. Neuropathy will resolve and she’ll be able to walk.

Biopsy Complication

This is Ashtyn’s nurse Devyn and physician assistant Sarah. Believe it or not, we have a lot of fun together in clinic. We laugh a lot and have great conversations but when it comes to keeping Ashtyn safe and healthy, these women are no joke amazing. Yesterday Ashtyn had a bone marrow aspirate and biopsy, a quick and easy procedure. We went to the hospital, got vital signs, walked down the hall to the procedure room, laid on her side in the bed, received anesthesia medication, slept for 25 minutes while the aspirate and biopsy was done. In the meantime I sat in the recovery room, only separated from her by a sliding door. Once the procedure was done her bed was moved 5 feet to where I watched her wake up and then wheel-chaired her back to the car. We were in and out of the hospital in 1 1/2 hours. Once back to the apartment the hole in her back started bleeding and hasn’t stopped. It’s now been well over 30 hours. A pressure dressing of gauze and tape has been attached to her back but continues to soak through. We spent seven hours in the ER last night. Her platelets are 67 which should totally be high enough to clot such a small hole. During clinic today a new pressure dressing was placed that I hopefully won’t have to take off for 48 hours. Early Saturday morning she’ll get another platelet transfusion, not wanting her count to drop much. The bleeding from her procedure site has definitely been a nuisance with the pressure dressings, soiled linens, ER visit, and added platelet transfusion Saturday, but long term the bleed will eventually stop; it will just be another complication she experienced and a thing of the past. What does ultimately matter is the results of the bone marrow aspirate and biopsy. Please pray the results will show that she remains cancer free with zero leukemia. Please pray for at least 30% cellularity which would indicate a more robust bone marrow that would allow Ashtyn to start taking Venetoclax as a post transplant therapy to keep any possible hidden leukemia at bay while her immune system becomes strong enough to do the job. And, please pray her procedure site will stop bleeding and heal properly.

Get Your Hopes Up

Ashtyn’s in the ER tonight. She had a bone marrow aspirate and biopsy this morning. After the procedure we went back to the apartment, took a nap, and woke up to a decent amount of blood on the shirt, sheet, and mattress pad she was laying on. I took off the saturated dressing and found blood was still coming out of the biopsy site after five hours. We were told to go to the ER, check her platelet count, and get a platelet transfusion. We are still waiting to get lab results and talk to the doctor. Ashtyn has had countless bone marrow biopsies in her lifetime and not once has one bled. My son Chandler emailed this quote a week ago. “Hope is manifest in confidence, optimism, enthusiasm, and patient perseverance. It is believing and expecting that something will occur. When you have hope, you work through trials and difficulties with the confidence and assurance that all things will work together for your good." I’m grateful Ashtyn perseveres through everything with remarkable optimism and patience. I have hope and confidence that this is her last fight with cancer. I believe miracles will continue to occur. I believe she will get stronger with each week. I believe she has a beautiful, healthy future ahead of her. I believe there is a purpose to all of this. I believe all the difficulties we have faced will work together for our good. I don’t know any other way to live than to believe.

Communication Between Seattle and Salt Lake City

There’s no question that Ashtyn is alive today because of hundreds of healthcare professionals in Salt Lake City and Seattle. She got into remission twice and survived two bone marrow transplants at Primary Children’s Hospital. She was able to get into remission a 3rd time and survive her 3rd BMT at Seattle Children’s Hospital. For the past several weeks there has been communication between PA Sarah, Dr. Mallhi, and Dr. Lamble from Seattle with NP Laynie, Dr. Shyr, and Dr. Maese in Salt Lake City. Preparations are being made to transition Ashtyn’s care to Primary Children’s, a BMT hospital 20 minutes from our home. Even though Ashtyn is no longer in the hospital, she continues to require quite a bit of outpatient follow-up care. We are grateful to have a team in Seattle who supports Ashtyn’s desire to go home and a team in Salt Lake City who are capable and more than willing to manage her health issues. Several days ago Dr. Mallhi, Dr. Lamble, Sarah, Ashtyn, and I had a conference call with Dr. Shyr and Dr. Maese. The purpose was to make sure everyone was on the same page regarding the plan to move forward with recovery in Salt Lake City. It was decided that we can go home December 18th! We are so excited to have an actual planned date to go home! I think the next two weeks are going to fly by. There’s packing to do and a lot of medical appointments. Ashtyn will be getting a bone marrow aspirate and biopsy tomorrow to check for leukemia and cellularity. Next week she’ll see a kidney doctor to discuss her high blood pressure, electrolyte needs, and abnormal urine test. She’ll also see a lung doctor about her abnormal pulmonary function test. Platelet transfusions are still needed at least twice a week. I’m just in awe that Ashtyn accomplished what she set out to do; go to Seattle, get into remission, and receive a 3rd bone marrow transplant. Because of what I’ve seen, I will never doubt this world is full of remarkable people who have a great purpose to impact lives for good.

Medical Update

HEART: Echocardiogram showed a wonderfully functioning heart. There’s some fluid around the heart since being sick in the ICU in August and is expected to eventually resolve. Also her recent EKG showed a normal QT heart rhythm.

GI: No signs of gut graft verses host disease which would include cramping, diarrhea, and lack of appetite. Ashtyn eats well and doesn’t have any GI problems. Also, signs of bleeding in her stomach is gone and is on a medication that decreases acid to help prevent ulcers.
SKIN: No signs of graft verses host rash. She has lots of bruises from previous low platelets but are resolving. 

INFECTION: Last Adenovirus level came back showing <300! Her level at it’s highest was 2.4 million! The current level is so remarkable that the doctor wonders if the result is correct. We have another level pending and are hoping for zero trace of Adenovirus! She continues to be on an anti fungal and antibacterial medication for possible infection in the lungs. She’ll have a CT scan in the future to follow up on a couple little growths that were previously seen. She will also continue taking an antiviral medication for a year to help prevent several viruses. 

KIDNEYS: There are still signs of injury but electrolyte balance is finally stable with a very precise oral and IV electrolyte therapy. 

BONE MARROW GRAFT: A red blood cell transfusion has not been needed since she had internal bleeding one week ago. Her hematocrit has stayed stable at 34! Her platelets are doing well also. With platelet transfusions 3 times a week, her platelet level went up to 70! That’s much higher than it’s been for many months. Next week she’ll get platelets Monday and Thursday. As the marrow produces more platelets and red blood cells, less and less transfusions are needed. Her white blood cells are increasing too! Her absolute neutrophil count is 2490 without any marrow stimulant drug! 

NEUROPATHY: is still present in her feet and legs, which prevents her from being able to walk. She takes Pregabalin to help. I’m not sure how or when the neuropathy will resolve. Please pray neuropathy will go away so she can walk again.

We are grateful for her progress.

Exhausted but Good

Morgan flew home a few days ago to not miss school and cheer. Ethan stayed in Seattle and possibly won’t go home until Ashtyn can. Yesterday I woke up exhausted and was grateful to have zero medical interactions and no obligations! That’s a first since mid July! Another thing that contributed to us being so tired was that Ashtyn and I never get more than 2 1/2 to 3 hours of sleep at a time because the fluids she gets at night makes her get up to the restroom often. With nowhere we had to be, I stayed in bed throughout the day, any chance I could, while Ashtyn relaxed on the couch hanging with Ethan. There were still medications to give, meals to eat, walking Ash to the restroom, helping her with a shower, apartment cleaning, laundry, and driving 30 minutes to her favorite Spaghetti Factory to get three nights worth of to-go meals. But all and all it was a rejuvenating day. Life is good. Today started at 8:00 a.m. for lab work, a platelet transfusion, EKG, and heart echocardiogram. She’s been out of the hospital for four days and things are looking good!

Small Glimpse

This is a small glimpse of what it was like to walk beside Ashtyn yesterday, a newly 18 year old recovering from a 3rd transplant. The morning started at 9:00 a.m. when her nighttime 1 liter electrolyte fluid infusion was complete. I handed her supplies so she could unhook the IV bag and flush the central line. She ate cereal in bed and waited for me to shower. As soon as I was ready I helped her get dressed, put compression socks on to help her puffy feet, and put my Nike shoes on her since her shoes are currently too small. I grabbed a bag full of daily pills, anti-bacteria wipes to wash any toilet she sat on, barf bag, paperwork telling me the medication and appointment schedule, snacks, drinks, and Cup of Noodle soups for lunch. At 10:50 a.m. she walked to the car using her walker with me right behind her in case she lost balance or her legs gave out. We drove to Seattle Cancer Care Alliance where Ethan wheel chaired her inside to have blood work, a check up with her amazing physician assistant Sarah, nurse Devyn, and Dr. Mallhi. We talked with the nutritionist, got a central line dressing change, and received a platelet transfusion while we ate our soup. At 5 p.m. Ethan wheeled her back to the car. We drove to Walgreens to pick up medications while Ashtyn enjoyed wheel chairing around and shopping with Ethan. We got to the apartment at 6:30 p.m. where medications and dinner were given. Ethan and Ashtyn watched Disney movies and were on their phones while the apartment and medications were organized for the next day. At midnight her IV fluids were started for the night and the to-do list was done. It’s busy recovering from a BMT. This week she has multiple appointments Monday, Wednesday, Thursday, and Friday. We are extremely grateful for where she is today so it’s impossible to complain. She also doesn’t complain about her complete lack of independence. Ash is wheel-chaired everywhere we go except in the apartment where she uses a walker. I walk behind her every step she takes including the restroom morning and night. She is not fazed by her current situation. We are thrilled with the life and freedom she does have and have total hope for complete recovery in the future.

It's My Birthday

From Ashtyn:

GUYS. I can’t believe I actually made it to 18!!
I never could have imagined the literal hell that 17 would bring. But my gosh, I couldn’t be any more grateful than I am right now.

I moved to Seattle from Salt Lake City in the beginning of March, not knowing when or if I would ever come home. I already knew cancer too well, I knew my circumstances were not good. My mom reminded me of a marathon and how the hardest part is the last few miles when each painful step makes you want to cry and the finish line seems to only get farther from you. I don’t think I could comprehend the magnitude of the miracles that were ahead of me or the amount of encouragement I’d get from the sidelines.

Tonight, I am thankful. I have more scars and bruises on my body than I can count, I can’t walk on my own, my face is beat up, I have neuropathy, and I weigh 30 pounds more than I was before because of steroids and IV fluids, but I’m ALIVE. I’ll be able to look at my scars for the rest of my life and be proud of the body I have. I’ll be able to walk again, and when I do I’m going to look down at my steps with gratitude I never would have had, had I not gone so long relying on other people to get me everywhere. My neuropathy will fade one day and the weight will come off and I will be grateful to feel myself again.

Thank you for getting me here. Thank you for your support and prayers. I know that I am alive today because of it. Because of you and the grace of God, I got to celebrate my 18th birthday... OUT of the hospital. What a freaking MIRACLE!!❤️

“For by grace are ye saved through faith; and that not of yourselves: it is the gift of God.” -Ephesians 2:8

Walking Away One More Time

We’re leaving the hospital and I actually suspect Ashtyn won’t be inpatient at Seattle Children’s Hospital again. We are walking away with way more happy memories than sad because of all the wonderful people who work there. Thank you! We have big plans for the night and are going to start celebrating her birthday immediately. We’re going to pick up food from her favorite Thai restaurant, get a Ben & Jerry’s ice cream cake, and hang out at the apartment watching football and playing games.

Happy Thanksgiving

We are grateful for the many family, friends, healthcare workers, and strangers who have impacted our lives for good. Ashtyn is out of the intensive care unit and spending Thanksgiving on the Cancer Care Unit at Seattle Children’s Hospital where we are always treated unbelievably well. Morgan went to Metropolitan Market and picked up some turkey, stuffing, mashed potatoes, gravy, rolls, mac and cheese, scallop potatoes, pumpkin pie, cookies, chips, dip, and way more food than we could ever eat. I feel very blessed to have had a calm and enjoyable Thanksgiving with Ashtyn, Morgan, and Ethan while also knowing Chandler is well in Florida on a mission. Ashtyn is feeling so much better after her internal bleeding was discovered and successfully fixed. Remarkably she feels more strength and less depleted than she has felt in months! We will spend one more day in the hospital, making sure everything is stable, and will likely leave on Saturday just in time to celebrate her 18th birthday on Sunday the 25th at our Ronald McDonald apartment. Some may think we have more bad luck than good but we don’t see it that way. If you could walk side by side us on a daily basis you would see how truly lucky we are. Our luck just looks different and comes in different ways.