Emotional Update: Finding out Ashtyn wasn’t in a deep remission and that leukemia cells came back so quickly was just as difficult to hear as if it were a new relapse. The news knocked me down and I wondered if I would ever again smile and feel joy during this cancer fight. Concern for my family grew and light at the end of the tunnel dimmed. I cried to God hoping I never have to live life on earth without her. At the same time, Ashtyn was processing the information in her own way. She quietly felt anger and then sadness as hopes were again taken away. So much normalcy has been stripped and all she really wants is to enjoy her senior year in high school. That reality is moving further and further from her reach. Sorrow sucked energy out of us and we spent the majority of the past two days in our room. As we read over comments that were written on social media, I felt such gratitude for the support, prayers, and love given. We were touched by your empathy. “I’m so sorry.” “This is heartbreaking!” We were comforted by your hope. “You will conquer this trial.” “We won’t give up hope.” “Next round of chemo will get rid of them forever!” We were uplifted by your encouragement. "Today I will cry with you. Tomorrow we fight.” “You got this." “We aren’t giving up on your girl.” "They will get you to that transplant I just know it!” We were inspired by your faith. “I KNOW the Lord has a plan for you and Ashtyn.” “I guess we just have to pray harder!” “I’m going to pray so hard that God will be a little sick of me.” “We will pray pray pray!” “Take therefore no thought for the morrow, for the morrow shall take thought for the things of itself." We appreciate all the comments, thoughts, and prayers. Sure enough it didn't take long for peace to come to our hearts and smiles to return to our faces. Isabelle's words came true. “Christ will bare the pain in time and Ashtyn will rise again, stronger than ever.” April wrote, “I know the two of you will tighten those boot straps and get back to the work needed to get through this next phase in life.” Thank you to everyone for giving us strength. We are back to work.
Medical Update: We met with Dr. Todd Cooper, director of the Pediatric High-Risk Leukemia Program at Seattle Children’s Hospital. His biography states his “interests and expertise focus on the development of new therapeutic strategies for the treatment of acute leukemia in children. He’s dedicated to offering hope to children with complex blood cancers by providing access to the most promising and innovative therapies.” My experience with him was exactly as described. Our united goal: find a treatment that will get Ashtyn into deep remission where she’ll maintain a 0.00% leukemia cell result in her marrow for at least one month off treatment. She would then qualify for a cord blood BMT, the only option that could destroy cancer for a lifetime. Dr Cooper discussed five treatment options that may get her there and then assured us that we could take time before making a decision. I asked, “Just focusing on knowledge, no one can ever be sure what the best option is. I think it comes down to following your gut. Dr Cooper, what’s your gut feeling on what option is best?” He agreed with my thoughts and knew what his gut wanted to do, an option that uses two drugs, Daratumumab and Venetoclax. Daratumumab was FDA approved in November 2016 for relapsed multiple myeloma, cancer of plasma cells that produce abnormal amounts of the protein CD38. Ashtyn doesn’t have multiple myeloma but her cancer cells have the protein CD38 that Daratumumab targets. Venetoclax was FDA approved in April 2016 for relapsed chronic lymphocytic leukemia (CLL) a slow growing cancer of white blood cells. She doesn’t have CLL but Venetoclax had an affect on her leukemia cells when on the trial study. Those two drugs have never been used together and is an off study option completely tailored for Ashtyn. Dr. Cooper felt it was best to try something different while we can and is willing to do the legwork to try to make it happen. If he can get insurance approval and the drugs within 7-10 days, we will move forward with the above option. If he can’t make it happen for one reason or another, Ashtyn will do the same chemotherapy round she did last month.
Please pray that 1. Dr. Cooper will be inspired and guided. (He’s going to Finland today for a medical conference with leukemia experts from around the world). 2. Doors will open and insurance will approve the best treatment to get her into deep remission.
