Basic BMT Summary

We are packing our bags and getting ready to face the upcoming bone marrow transplant. I’ll give a basic summary of what the BMT entails and then we’ll all face the unknowns as they come. Starting Tuesday morning Ashtyn will be admitted into the hospital and is expected to stay 30+ days. She will immediately start 5 days of chemotherapy and one day of total body radiation. The purpose of chemo and radiation at this point is to obliterate her marrow. On August 6th a bag of umbilical cord stem cell blood will be transfused into her blood stream through her central line. The stem cells will make their way to the empty marrow space, build a new marrow, and begin making blood cells, DNA matched to the donor. Throughout the month, as we wait for a new marrow, the healthcare team will constantly manage Ashtyn’s health, keeping her alive. She will have zero ability to produce red blood cells needed to stay oxygenated. She will have zero ability to make platelets required to clot blood. Most risky, she will have zero ability to make white blood cells leaving her with absolutely zero immune system. Without an immune system, our body can easily die from many different types of fungal, virus, and bacterial infections. Because of the risks, she will be given antiviral, antifungal, and antibiotic medications hoping to prevent infection complications. She will be given regular red blood cell and platelet transfusions. The side effects from the 5 days of chemotherapy will be managed and great care will be given to keep her organs as healthy as possible. She will have the best of the best nurses, doctors, pharmacists, dietitians, physical therapists, and other specialists watching her closely. Before leaving the hospital, she must have a marrow that produces enough cells where she can live outside the hospital with support from clinic visits 3 times a week. She will stay in Seattle until November 14th. Her body should then be stable enough to move back to Salt Lake City where Primary Children’s Hospital will take over her care as her body and marrow recovers over one year. She will then have a fully functioning immune system that will not only keep her healthy but will also kill remaining hidden leukemia cells. This is an unpredictable, dangerous, bumpy, crazy train that we really want to get on because it’s a train that’s heading home where Ashtyn can start living a healthy life and finally be able to pursue her dreams.

GoFundMe.com/ashtynsarmy

Venmo: AshtynsArmy

Ashtyn hates her steroid cheeks but absolutely loves oncologist Dr. Adam Lamble. He got Ashtyn into remission with his brilliant contemplation always looking ten steps ahead. He not only took care of her health but also her emotions as if she was his own. Adam always wanted the best for Ashtyn so whatever made her happy was what he would shoot for. Forever grateful for this man's love. 

Packing up our Ronald McDonald House room. It served us well. After the hospital we will move to an isolated apartment.

Saying goodbye to drinking 32 dissolved pills in 7 ounces of apple juice everyday for over four months. We will forever be grateful for Venetoclax which got Ashtyn in remission but it will not be missed. Ashtyn will never drink another drop of apple juice either. 

Ashtyn is always missing her dog. 
Thank you Savas’s for sending some Marlie love to our room.

From Janet:

The left photo is Ashtyn about to go on a date in February 2018. The right photo is Ashtyn and her doctor in July 2018, after five months of chemo and steroids. Can you imagine being a 17-year-old girl having to deal with what Ashtyn has on her plate? All she really wants is to be starting her senior year of high school, worrying about makeup and boys and a dress to wear for the next dance. I bet she'd love having a regular job and even babysitting her cousins on the weekends.. (btw, Ash is a total baby whisperer!) Ashtyn's reality is nothing like peers her age. She has literally spent YEARS fighting in the hospital, day after day visiting with doctors, gulping down gross medicine, prepping for tests and surgeries. She does it all with the most amazing attitude. She is not only an example to other teenagers who struggle with their self-esteem, but to grown adults who aren't happy with the cards life has dealt. She is an inspiration to other cancer patients, doctors, nurses and everyone who reads her story online. She's in the middle of her biggest battle yet. Our goal today was to get news stations interested her story and that goal was accomplished. Stay tuned for details! Until then, YOU can help us spread the word about her GoFundMe campaign and get more momentum behind her story. What is the money for? It's for Ashtyn to make plans for her future. Is visiting orphanages in Africa a possibility? You better believe it. Those babies need a baby whisperer to cuddle them to sleep. All you need to do is get yourself better, Ashtyn. Eventually you will be able to focus on ALL of those people you eventually want to serve. Your future is so bright and we can't wait to see how you use this money to change the world.

Can't I Just Be Depressed For A Couple Days?

Ashtyn and I have been in Seattle for five months. The last time we were able to fly home was 20 days ago, though it seems like months. In the last three weeks, all of our time has been spent preparing for the bone marrow transplant. In 17 days she had 28 appointments at three different locations, Seattle Cancer Care Alliance, Seattle Children’s Hospital, and University of Washington Medical Center. Ashtyn is so patient and pleasant with everything she’s asked to do. I can’t even begin to tell you all the things that have been expected of her but she does it all with not one complaint. Yesterday we had a day off from appointments so we went on a short walk. I sensed she was down and asked her about it. She started to quietly cry. “I haven’t cried in a long time. Can’t I just be depressed for a couple days?” Of course she can and her emotions are completely valid. It dawned on me that we haven’t had any family visits in 3 weeks. We definitely feel in a rut like we’re stuck in an isolating, confined, constant, medical world. We need a change of energy that family can bring. I’m extremely grateful for a couple things regarding this. One is the GoFundMe/Venmo donations that will allow us to fly Ashtyn’s Dad, stepmom, siblings Ethan and Morgan, or even friends to Seattle every weekend for the next 3 1/2 months. These weekly visits will be something to look forward to and will also bring new life each and every week! I’m also grateful that on Monday Ashtyn’s dad Jason will be flying up to Seattle to spend five days at the hospital with her. She will get one on one time with her dad, have a different vibe and energy in her room, and I will fly to California for four days to join Ethan, Morgan, my parents, and siblings for a beach trip they planned one year ago. It’s the best scenario we can do right now. Ashtyn would love to escape her cancer fight and spend time at the beach. Since that’s not possible, she knows what needs to be done and is ready to get this bone marrow transplant started. One remission Goliath down, one BMT Goliath to go.

gofundme.com/ashtynsarmy

Venmo: @AshtynsArmy

Less Than 1%

Today was such a big day! It was the day we had a data review conference with a bone marrow transplant doctor and signed final consent forms for the BMT. The reason this is such a big deal is because it’s a step in the process that only occurs once a patient completely qualifies for the transplant. It’s not easy for someone in Ashtyn’s situation to qualify. In fact, less than 1% of leukemia patients have ever been in this situation. Less than 1% of leukemia patients have Acute Undifferentiated Leukemia, which provides very minimal research on how to treat it. Less than 1% of relapsed leukemia patients achieve remission after a 2nd transplant, which would explain why less that 1% of BMT patients have a 3rd transplant. Seattle is home to one of the largest stem cell transplant centers in the world. Last year they did 85 pediatric BMT’s. In the past 6 years there has only been 4 or 5 patients at Seattle Children’s Hospital who received a 3rd transplant. The requirements to receive a 3rd transplant includes 1. complete 0.00% remission. 2. The transplant must be different than the two previous received, which is why she will have an umbilical cord blood donor. 3. must be enrolled in a BMT clinical trial which contributes to bettering transplant outcomes for future patients, which is why she is receiving a study chemotherapy drug Treosulfan for transplant conditioning. 4. Her organs must be healthy. With all the chemotherapy, radiation, and complications she has gone through in five years, her liver, kidneys, heart, and lungs are normal enough. It’s all so miraculous. On the 31st she will be admitted into the hospital to receive five days of chemotherapy, one day of total body radiation, and have the actual bone marrow transplant on August 6th.

It's All Miraculous

This is a picture of a procedure nurse, the nurse practitioner who obtained Ashtyn’s aspirate and biopsy sample, another nurse, and Oncologist Adam Lamble. They are some of the earthly angels rooting for Ashtyn every step of the way. 

I’ve been familiar with a scripture that says, we “are willing to bear one another’s burdens, that they may be light.” Now at the age of 43, I understand what it feels like to have people bear my burdens that they feel lighter. Fighting cancer is an overwhelming burden. We thought it was tough fighting cancer in years past in Salt Lake City. Being in Seattle and away from home has brought the burden to an even more intense level. In 2013, while at Primary Children’s Hospital with the new diagnosis, I remember feeling prayers surrounding us allowing me to stand. Five years later I am even more attuned, feeling my burdens are being lightened by everyone bearing them for me.  How is this possible? I have no idea. All I know is how I feel. I know every single prayer, fast, thought, comment, text, and act of service lifts the weight of worry, stress, and hardship. We feel a portion of the burden being taken from us and placed on others. It’s remarkable. We are all carrying this burden together. It makes the journey so much easier and we couldn’t do it any other way. Thank you for all your prayers and for putting your hearts out there to bear some of our burden. It’s real and it’s literal. On top of that, your prayers have been heard. Ashtyn remains in remission with 0.00% leukemia cells and enough cellularity. She has been cleared to move forward with the bone marrow transplant on July 31st. It’s all miraculous.

Mom's Will Do Anything

As you can imagine, it can be very scary, heart breaking, stressful, nerve wracking, and heavy being the primary advocate and caregiver for my daughter. There’s so much I don’t have control over but so much that I do. Ashtyn’s doctors are completely responsive to any idea, thought, feeling, observation, or suggestion I have. She probably has 100 medical specialists who contemplate, plan, and discuss her care. They are the most brilliant minded people in the world and have the most genuine love, concern, and care as if she is their own. It has taken a remarkable team effort with those in Salt Lake City and Seattle to get Ashtyn to where she is today. I’m grateful for how much influence and say I have, and feel honored to be part of the team. It’s not news to anyone how complex her health is and how quickly her status can change. It is not uncommon that something happens which causes an immediate high stress response in me. I’m always on guard and feel it’s my responsibility to keep her as safe and healthy as I can. Because of this, my eyes are ever watchful and my ears are peeled for any sound of trouble. My hands and nerves shake more than I’d like, but it’s totally worth it because mom’s will do anything for our kids. I have come to accept and embrace my life and the things I can’t control. What I don’t want to do is spend time and energy trying to control, change, fight against, or fear the course life takes. What I do want to do is invest all my time, energy, and passion into living the best I can with what I’m given. I want to work hard and kick butt in the present moment never wasting time wishing things were different or feeling like the Universe is being unfair. I want to own my life and conquer each day with the attitude, “Let’s do this!” Philippians: “I can do all things through Christ which strengtheneth me.” Micah: “No matter how many times life may knock us down, we will always have the option to stay down and accept defeat or get up and say “Is that all you’ve got?!” We are enjoying each day for what it is and gearing up for whatever lies ahead. We will know Friday whether leukemia is back or if we can proceed with a bone marrow transplant.

One Step Enough For Me

Friday I begged Heaven, with as much faith as I thought needed, for the most recent bone marrow aspirate and biopsy to not only show zero leukemia but also have 25% cellularity. I knew the chances that her marrow would be 25% cells was at that point medically impossible but I was hopeful that the situation would be a great opportunity for us all to witness a grand miracle and “see and know of the goodness and glory of God.” Friday evening I heard back from the BMT doctor informing us that Ashtyn’s marrow remains cancer free, a tender mercy and greatest blessing. Results also showed that her marrow was 15% cells putting the transplant on hold until 25% can be achieved. We are very grateful and relieved that she remains cancer free. At the same time I was initially frustrated with the cell result. I questioned why my prayers and desires were being ignored. I didn’t understand why moving on to a bone marrow transplant has to be so uncertain. In the midst of my disappointment, I felt an obvious and noticeable calm feeling regarding the results. I have been so on edge lately that I knew the peace was not coming from me. I was reminded, “Lead, kindly Light, amid the encircling gloom; lead thou me on! The night is dark and I am far from home. Lead thou me on! Keep thou my feet, I do not ask to see the distant scene. One step enough for me.” The logistics of the 25% cellularity is because Ashtyn will be receiving a study conditioning chemotherapy drug called Treosulfan for her bone marrow transplant. Because Treosulfan is not currently FDA approved in the US and instead is part of a clinical trial, it is required that her marrow has 25% cells when other BMT’s don’t have that requirement. Ashtyn’s in a tricky situation right now. The marrow has to recover showing 25% cells and 0.00% leukemia to qualify for a transplant. Friday she stopped taking Venetoclax to help cell production, which also means she’s no longer taking anything that will keep leukemia at bay. At the same time cell’s increase, she needs to remain cancer free. Please continue praying for 0.00% leukemia growth and 25% healthy cells in her marrow. We don’t feel alone and are being comforted. Thank you.

Focus On The Moment

The last several days have been packed full of appointments preparing for a bone marrow transplant. Everything has to go perfectly the next week allowing for a bone marrow transplant start date of July 24th. Today Ashtyn had another bone marrow aspirate and biopsy. The most miraculous thing that needs to occur is to have results come back tomorrow evening showing 0.00% leukemia with an increased cellularity from the previous 10% to a required 25%. As of right now her blood work does not show good signs of much cell production. For example, a few days ago her platelet count was low enough that she needed a transfusion and her white cells/absolute neutrophil count was 300 when we would love the number to be near 1500. It’s a total long shot that the marrow will be 25% cells tomorrow. Someone described Ashtyn as a “miracle magnet” so I’m still hopeful. If her marrow is less than 25% cellularity but remains cancer free, the BMT will be on hold and they will recheck in one week. It’s difficult to put into words the array of thoughts and feelings surrounding the very complex situation we are currently facing. Ashtyn and I are very similar in our emotions. Throughout each day we feel moments of anxiety as if we are being pushed to our limits. We want so much to move forward with the BMT, which is necessary in allowing us to eventually go home for good and live a cancer free life. Other times we feel strength that whatever the results show, things will work out in the end. Sometimes my strength and courage feels fragile and weak where I find my soul begging for an easier path where complications cease. I have found it more important than ever to stay focused on positive thoughts and what I ultimately believe. I regularly tell Ashtyn, and myself, “We need to focus on the moment we are living and not worry about what tomorrow brings. Today is all that matters and right now you are doing ok. Not only are you ok but so am I, as well as Chandler, Morgan, Ethan, and the rest of our family. Everyone’s doing good right now and there’s a lot to be grateful for.” I believe that we can handle whatever the future brings as long as we focus on the immediate moment and take it day by day.

I can’t even begin to explain all that Ashtyn goes through in a day. She has constant medical interventions and conversations. In just the last three days she’s talked with a nutrition specialist, social worker, home health staff, pharmacist, BMT attending, nurse practitioners, oncologist, and many more. She’s had three platelet transfusions, aspirate and biopsy procedure, and a continual infusion where she’s constantly hooked up to a liter bag of penicillin and an IV pump. Once a day she drinks 200 milliliters of Venetoclax, twice a day she takes a handful of oral pills, and three days a week she has a three hour anti-fungal IV medication infusion. In the next coming days she’ll meet with a cardiologist, radiologist, gynecologist, nephrologist, infection disease specialist, get a CT scan of her chest and abdomen, an ultrasound of her kidneys and liver, and perform a pulmonary function test. This is just scratching the surface. Tonight she said, “As impossibly difficult this is, I’m just glad it’s me going through this instead of someone else I love. I think it’s easier to go through this myself than if I had to watch Ethan, Morgan, or Chandler go through it. I couldn’t even stand to watch my little cousins go through this either. So I’m glad it’s me.”