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.