One struggle I have, when writing about a day in the life of Ashtyn, is not knowing where to begin. Honestly, she's complicated. Medically: There's a lot going on in her body and a lot of people involved. With her kidney functioning at 60%, she has a kidney doctor. Her liver is struggling so a liver doctor follows her as well as a GI doctor because of her high bilirubin. The bone marrow transplant team follow her because she had a BMT in the past. Infectious disease doctors are helping identify and manage any bacteria, viral, or fungal infections. Then there's the oncologists who manage her cancer and overall health. And that's not to mention her nurses, nutritionist, pharmacy, physical therapy, residents, fellows, techs, and housekeeping. Much gratitude to all of them. At this point her liver is our worry. Her Bilirubin level is continually getting higher and higher without any known cause. It's worrisome. The bili needs to start resolving itself now because any intervention has risks we don't want to face. Back Story: Ten days ago when Ashtyn went into septic shock, blood didn't perfuse to her limps. Pulses could not be found in her feet, legs, wrists, and arms. Her extremities were cold and white. A heel and finger stick gave no blood. We can only imagine blood was not reaching her bowels, kidneys, and liver well. I asked everyone to pray that her organs would be protected. And they were. She is not in kidney or liver failure. However we really hope to see some improvements in her liver and kidneys soon. Mentally and Emotionally: As I sat next to Ashtyn while she laid in bed today, I sensed her mental and emotion struggle. She relapsed. A week later she became deathly sick in the ICU. There was no time to really come to grips with the reality of cancer. Every fiber of her body was then completely drained. Now she sits in bed aware of how sick she is and is able to feel the effects of what her body went through. It's a lot to deal with. So her thoughts keep repeating "I don't want to do this again." Of course she doesn't want to, but the reality is she has to if she's going to live. I'm a huge believer of attitude, optimism, and the power of positive mind over matter. Her doctor Luke believes in it to. That evening he let me know he felt Ashtyn was giving up as well. He has nothing but love and concern for her. Luke talked with her alone and gave her some tough love. Afterwards I went back into the room and talked with her. It went something like this: "I know you don't want to do this again. I know you think it would be easier to die. (She nodded.) What do you want to live for? (Her reply "My kids.") Ashtyn, if you want to live, you'll live. If you want to die, you'll die. When you were on life support, your body did all it could to stay alive. You have hundreds of people praying for you. I told them what to pray for and those prayers were answered. But prayers can only do so much. You have to put the work in too. With your faith and hard work, coupled with the faith and prayers of other, you'll be fine. But it takes both." I was able to escape the hospital from 9-11 pm to watch Chandler (17) play hockey for his high school team. While I was gone a chest X-ray was done because Ashtyn's oxygen needs increased to 3 L from 2 L. Up to this point I had been very easy going not making Ashtyn do much more than she wanted to. But the chest X-ray kicked me into gear. I came back to the hospital all mom in full force. In my stern but loving mom voice the conversation went something like this: "Today I told you to take charge of your body. I told you to take the lead. To do breathing exercises and get out of bed when you can. Eat when you know you should. Start moving your body. You know what needs to be done. But you did nothing today. That's why your oxygen needs are up and that's why you had to get a chest X-ray. You can't sit in bed all day. You know this. I've been walking on egg shells not wanting to push you too hard. I haven't been pushing you to do the things I know you can. Not anymore. I'm going to make you do what I know you are capable of. So get up. You are going to sit in that chair and do 10 breaths in the incentive spirometer." And so she did. (FYI:Ashtyn can't walk without my support and is very weak and unsteady on her feet.) She sat for 30 minutes in the chair before I helped her back in bed. Once in bed her oxygen was able to be dropped back down to 2 L. Ashtyn said to me, "But mom, you told me I was going to live." My response, "You'll live if you do your part and are helped by prayers. You can't just sit here and be in a coma and expect to get better. If you have an easy day, you aren't getting stronger. If it's been a hard day, then you are getting stronger. So let's get to work and get your butt out of here." Her overall appearance and behavior is that she's way sick. She doesn't have it in her to do anything but sleep and lay in bed. She's way too sick to get on her phone, text, and even watch tv. Most visitors are more a stress than a comfort at this point. Talking is such a struggle and I often ask her to repeat herself slowly so I can understand what's she saying. Her anxiety is decreasing and she slept better last night than she has in a long time. Her temperature is always near 102 unless Tylenol was recently given. I'm going to start reading her the Facebook messages she has been receiving so she can understand and feel how much support she has around her. We are in this together and I thank you for that. Prayer for the day: 1. Her bilirubin needs to come down. 2. She's getting a bone marrow aspirate and biopsy. Pray it will show that chemo did its job.
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