From Janet

We've been in Seattle for 24 hours and there are still no words to describe what we've witnessed. I am humbled and grateful that we've been able to spend such sacred moments with these two unbelievably strong women, but I'm emotionally and physically exhausted by what I've seen. Ashtyn and Suzanne were both in tears because the situation is SUCH a battle. During radiation, Ashtyn's body was twitching and shaking in pain making the process much longer than expected. She cried with the sweetest tears saying, "I can't do this anymore. No one understands." Suzanne and I each took Ashtyn's side and said, "We don't know what you're going through, and neither do the doctors and nurses. But there are Angels in Heaven who do. Call them to your side to help you get through radiation.” Suzanne started naming specific Angels, one by one, and Ashtyn began to breathe in slowly and her body started to relax. Every hour seemed like a new mountain to climb. For my two healthy kids, it's been eye-opening to realize that every "complaint" or frustration that we had before coming here was nothing to complain about. This brave girl is fighting for her life and giving every ounce of her energy to get better. And this Mama Bear is fighting with everything she has too. It's so inspiring and so special to be around them. Keep sending your love and support and good vibes and prayers. They need them to get through tonight. Tomorrow is a big day. Bone Marrow Transplant number three, Ashtyn's ready.

From Janet: The mood and lighting in the hospital room last night was pretty romantic. We had the Bachelorette playing in the background, trying to get caught up before the Final Rose ceremony (the most dramatic one ever, of course.) These two were apart last Monday night and Suzanne told Ashtyn to watch it without her. Ashtyn said in all seriousness, "I would never do that to you." Their bond is really amazing. It doesn't take away or compare to the relationships Suzanne has with her other children, it only shows how deeply a mother can love and what she is willing to sacrifice to be there for her child. Suzanne and I had some pretty intense conversations yesterday. I hope she will elaborate more on this topic, but she said that there comes a point when too much is TOO MUCH. She has always been willing to fight and she will do whatever it takes to bring her daughter home healthy and strong. But there is a breaking point and she's near done watching Ashtyn suffer. She said that never once in their 5 year battle has she felt ready for God to take her, but if it came down to leukemia coming back, she would wave her white flag of surrender. It takes a pretty strong and selfless mother to admit this. It’s a good thing cancer is never coming back. Ashtyn is no where near giving up. Despite all she went through yesterday, I saw zero signs of surrender from either one. The thought of food made Ashtyn sick, but she gulped down medicine and ate enough calories like it was her JOB, no complaints. When heading to another hospital for radiation, Suzanne tried to convince Ashtyn to stay in her pajamas because she would have to change into a hospital gown anyway. Ashtyn wouldn't listen and wanted to pick out her outfit and look her best. Wherever effort could be made, Ashtyn was giving it her all. It's so inspiring. Even though she is missing her senior year and all of the student government activities that she should be involved in, she continues to stay updated with what is going on at school. Suzanne asked her if it would be better if she was taken off the group texts because sometimes knowing what you're missing is more painful than being oblivious. Ashtyn explained, "it hurts, but I need to stay in the loop. I want to be as involved as I can be." Suzanne is allowing her daughter to be a teenager and make her own decisions. These two are ultimate mother-daughter GOALS.

Total Body Radiation

So much goes into one day. Sunday started with Elders from our church who stopped by at 11:15 a.m. to give us the sacrament. Upon request, they also gave Ashtyn a blessing. She expressed how heart broken she was that school was starting and wasn’t able to be there. She wants to see her friends, help decorate for dances, and be involved in school activities. Instead, “I’m being pushed to my edge and I’m missing out on everything.” At 12:30 p.m. a critical care nurse and paramedic picked us up and transported Ash by ambulance to UW Medical Center to receive total body radiation. Total body radiation required her to lay on her left side, with shields placed directing over her lungs, and be perfectly still for 8 minutes while the front of her body received radiation. Afterwards the bed would be rotated with her back facing the machine, kidneys protected by shields, and another 8 minutes of radiation was applied to her back side. Sounds pretty simple, however it wasn’t simple at all. Laying still with pain is difficult but her body involuntarily shook from medication side effects making stillness impossible. I will forever be grateful for Ashtyn’s radiation oncologist, Dr Ralph Ermoian who moved her radiation appointment from 9:00 a.m. to 1:00 p.m. so he could come in on his day off and oversee her radiation. He wanted to make sure everything was done perfectly. With how impossible it was for Ashtyn’s body to stay still, we needed his expertise. After successfully receiving radiation, we returned to Seattle Children’s Hospital and tackled the next issue, pain. Managing her neuropathy pain, due to cyclosporine, is still a work in progress. Cyclosporine is an anti rejection medication and is most important for a transplant. The level of the drug has to be within a specific range to ensure a successful transplant. Throughout the night her pain climbed to where she shut down. She no longer can walk, hardly talks, constantly sleeps though her blood pressure and heart rate are well above her normal. She doesn’t respond to conversations in the room or even care about modesty. There must be many prayers being said and concerned hearts bearing the burden because she remains peaceful. I have a different calmness, one I don’t know if I’ve had before. In the early morning before the medical team could come see Ashtyn, I sat in her room helpless and alone. My prayer to God was, “This is not my problem. This is Yours. I can’t do anything for her so it’s up to You.” With a child beside me in such pain I felt calm, “Everything’s going to be ok.” Soon after, her doctor decided to take her off the IV form of cyclosporine that causes the pain and switched to an oral pill. That change is happening right now. Within a few hours the painful side effects should start to decrease. In 2 hours she’ll get her bone marrow transplant infusion!!! 

Ashtyn's pain went down from a 9.7 to a level 6 with her PCA pump, but she is still unstable walking on her own. She's headed to the University hospital a few miles down the road for radiation today.

FROM JANET:

The trip to University Radiation was so much longer than it should have been. Radiation that could have been done in 30 minutes took 3-4 hours. Ashtyn was miserable and Suzanne couldn't do anything to comfort her. When they got back to the Children's Hospital, Suzanne cried with the doctors and nurses and wanted a better plan. They are in one of the best facilities in the world and it takes collaboration and team work. The doctors are so AWARE of Ashtyn and her situation. (The radiologist wasn't supposed to work on Sunday but he came in especially for her. Had this particular doctor not been there, things would have been much worse, I'm sure of it. He was so kind and considerate of her situation. Afterward I regretted not taking a photo of him, but it was stressful and not time to take out a camera. Dr Ralph, you were the bright spot of the day!) No one is unaware how rare Ashtyn's situation is and it's an uphill battle figuring out what route is best for her. Back at the Children's Hospital, everyone thought Ashtyn had fallen asleep because her eyes were closed and her body had relaxed a bit. One of the doctors apologized to Suzanne because of the frustrating situation and Suzanne said, "I'm not frustrated. If I knew a better plan and we weren't doing EVERYTHING we could, then I'd be frustrated. Everyone’s doing all we can and I'm just sad.” Ashtyn listening in on every conversation said, "Well I'm frustrated.” She is so sweet and funny and her mind is totally alert. When we were leaving her room around 11pm, she apologized to us because our trip wasn't more fun. With tears in her eyes she said, "I want you guys to have a good time in Seattle and being at the hospital is no vacation." We stopped her, but it broke my heart because she is ALWAYS thinking of others and not having a pity party for herself. Ben and I left the hospital feeling sick to our stomachs because the weight of the day was a lot to take in. I didn't even know what to write or share about it, and I'm not overwhelmed or speechless often. I'm in awe that Suzanne can go through what she does day in and day out and then share it so eloquently.