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.”

Hoping Not To Return Home For 120 Days

It has been over four months since Ashtyn started cancer treatment in Seattle. During that time there were several occasions we flew to Salt Lake City to enjoy home for a few days. Each time was a last minute opportunity and each time we wondered if it was going to be our last time home for awhile. Eleven days ago we left the hospital to fly home for what we thought would only be four days. Because of schedule changes, we ended up being home for eleven nights and eight full days. What a blessing. Most of that time Ashtyn didn’t feel as well as she would have liked but nothing beats being home. Yesterday we flew back to Seattle with every hope and prayer that she won’t be going home again until November 7th. A bone marrow transplant is terrifying but having leukemia is even more so. Being away from home for 120 days straight is not ideal but it’s the only way to get her home for good. With the news that her last bone marrow aspirate showed 0.00% leukemia cells, today she is moving forward with a two week transplant preparation process. Her body must pass all requirements to qualify for a bone marrow transplant including healthy lungs, heart, kidneys, and liver. She will also receive another bone marrow aspirate and biopsy next week that must show 0.00% leukemia cells with 25% cellularity. Please pray that in the next two weeks 1. she’ll remain in remission with no evidence of leukemia. 2. her marrow will increase to 25% cellularity. 3. her body will be infection free and healthy enough to qualify for a transplant. 4. the bone marrow transplant will begin on July 24th without delays.

Heaven Is Shining

It seemed like Heaven was shining down on Ashtyn today. She woke up feeling well and energetic. Her favorite friend and home health nurse came over to give her a central line dressing change because no one can do one like Dylan. He got blood for labs and started an IV fluid bolus and medication infusion. She drank 7 ounces of the study drug Venetoclax which normally makes her want to cry but today she hardly tasted it. Throughout the afternoon she felt motivation to work on school packets while we waited with calm anxiety for the results of her bone marrow aspirate and biopsy. At 5:41 p.m. I got a phone call from Dr. Adam Lamble informing us that results came back showing 0.00% leukemia cells. Unbelievable! We are extremely relieved and deeply grateful. It wasn’t that we were hopeless but we definitely anticipated and had our guard up to receive results showing cancer. I give full credit to insightful doctors and medical interventions coupled with everyone’s prayers and fasting for Ashtyn’s 0.00% leukemia results. There is no doubt in my mind that modern medicine and miracles continue to save Ashtyn’s life. Thank you to everyone for being a part of it. As of now we will return to Seattle on Monday and begin the two week bone marrow transplant preparation process. Around July 23rd she’ll be admitted to Seattle Children’s Hospital for chemotherapy and radiation and receive a bone marrow transplant around July 30th. Ashtyn will then remain in Seattle for a minimum of 100 days before returning to Salt Lake City to further her recovery. Her marrow cellularity is currently 10%. Please pray that her marrow will continue to recover from past chemotherapies and reach 25% cellularity in the next two weeks with zero leukemia growth so that she’ll qualify for the BMT. Thank you for walking this journey with us. Much love to you all.