October 18, 2016

Faith, prayers, and fasting are saving her. Doctors didn't know if she'd make it through the night. They are currently pleased with her slow progression heading in the right direction. Miracles are happening.

October 18, 2016

All I can do is sit in the PICU next to my daughter hoping that God's will is for her to stay on this earth with us. I've read hundreds of comments from Ashtyn's Army, texts, instagram, and others facebook pages, all praying for her. Truly and sincerely pleading to God for this beautiful girl to have the strength to pull through. I know God lives. I know He answers prayers that are for our best good. He is a God of love. Ashtyn has typhlitis, as suspected, and a gram positive bacteria in her blood. At 6 am on Monday, I turned on the lights and saw that Ashtyn's face was bright red. A clear sign she was heading for septic shock. Her vital signs were still ok. As liters of fluid were push into her central line, Ashtyn was taken in her bed to the PICU. There her blood pressure starting dropping and septic shock set in. A very high dose of norepinephrine, a very high dose of epinephrine, albumin, a heart med, six total liters of fluid, were all needed to keep her alive. She was also intubated on a ventilator and started on a slew of antibiotics. By noon doctors gave us the talk that she may not make it through the night. It is now 2:00 am. For over 14 hours, Ashtyn has been stable in her instability. I know why she hasn't gotten worse. It's because of the hundreds, if not thousands of prayers being poured out to God on her behalf. It is because of the fasts from family, friends, and strangers. It is because we are showing God how much we want and need her here. Please pray that her body will perfuse blood properly to her tissues and organs. Please pray that her body will begin to maintain a blood pressure so the epinephrine and norepinephrine can begin to be decreased. Please pray the antibiotic will start killing her bacteria. Pray her bowels will not perforated or necrose and all her organs will be protected. My family sends so much love and gratitude to you for your prayers and loving Ashtyn like your own.

October 17, 2016

Ashtyn was transferred to the PICU at 7 am in septic shock. We have an idea of what's causing it. All measures are being taken to keep her alive. Norepinephrine, epinephrine, lots of fluids, antibiotics, bipap heading towards being intubated. Please pray her body can get a handle on this illness and start progressing towards improvements. Of course I'm nervous. My stomach is in knots. I do have a sense of peace and feel she'll pull through this. Thank you for your prayers.

October 17, 2016

Sunday, Ashtyn hardly spoke a word. She stayed in bed sleeping, trying to keep nausea in check. She also had quite a bit of pain in her throat and stomach. We constantly are doing all we can to keep pain and nausea under control. Saturday, for pain she was given morphine every four hours. Sunday, a PCA pump was started that gives morphine continually plus more if she needs it. Saturday her nausea was controlled by Zofran. Throughout Sunday three more anti-nausea meds were started. Every two hours she rotated IV Benadryl/phenergan, Ativan, and Zofran. After sleeping all day, she was overly conked out at 7:00 pm. I recognized that she had hardly stirred in four hours. Normally night time is when she feels the best. I asked Ashtyn's sweetheart to wake her up so we could see how she was feeling. It was immediately clear that something was wrong. She was pretty out of it, had slurred speech, and was unsteady on her feet. The nurses paged the doctor who quickly came to the bedside. We talked about her continued nausea, pain in her stomach, and total change in behavior. Because her vital signs were perfect, the assumption was she was over sedated. The morphine and nausea meds were stopped and we watched her like a hawk for a couple of hours. Sure enough, after the first hour Ashtyn became so nauseated she threw up multiple times. After the second hour she was still throwing up and wanted the room quiet again. After the third hour she was walking steady on her feet and just felt like crap. After the fourth hour she was asking for morphine for pain and Ativan for nausea. The PCA pump was restarted and Ativan was given. We will continue to work on finding the right balance of keeping her comfortable without snowing her. It's now 1:00 am. The room is dark and soft hymn music is playing from pandora. Ashtyn feels awful and is restless. I'm going to lay beside her and tickle her back, arms, and face until we both fall asleep. She is so loved by many and I thank you for that. Our room is full of peace no matter the hardships going on.

October 15, 2016

Ashtyn woke up early at 10:30 a.m. in preparation for her 1:00 p.m. scheduled visit from the BYU cheerleaders. I was so pleased that she felt well enough to get out of bed that early. On top of that, she felt well enough to eat. Nutrition is obviously an ongoing issue we deal with. As long as her mouth, throat, and stomach can handle food, it's so important that she tries her hardest to eat. For the past week her caloric intake has been minimal. I don't think there's been a day where she's eaten more than 300 calories. Before her cancer diagnosis she had already lost 10 pounds during the past few months. Whether her weight loss was due to cancer, or stress from a full schedule in high school, we'll never know. The important thing is, she needs to eat food as long as possible before we resort to IV nutrition. From the cafeteria menu she ordered a bowl of mash potatoes and a soft pretzel. She ate the mash potatoes and was almost done with the pretzel when her nose started to bleed. Her platelet count was low at 15 and needed another transfusion. For over an hour she kept pressure on her nose to control the bleeding. She was bummed and irritated having to deal with the bloody nose right when she was actually able to eat. By 1:15 p.m. it was still bleeding. Nonetheless, Ashtyn put makeup on and got ready for her visitors. A platelet transfusion was started, the bloody nose stopped, and by 1:45 p.m BYU cheer coach Jocelyn Allan, the cheerleaders, and BYU basketball forward, Eric Mika came to say Hi. What a kind group of people. So sincere. So caring. Ashtyn was physically tired but her spirits were lifted. The visit not only brightened that moment but the memory will continue to bring hope to Ashtyn. That one day she'll be a student at BYU and this cancer crap will be a thing of the past. Thank you so much @jocelyn_allan #ericmika #byucheerleaders You truly brought a spirit that warmed our hearts.

October 14, 2016

Yesterday Ashtyn spent much of the day sleeping. It wasn't until after 3 pm that she woke up for the day. She had chest pain because her lower lungs were slightly collapsing from being in bed for a straight 16+ hours. After walking in the halls with her brothers and some friends, she felt good to socialize with visitors the rest of the night. We know there will be times of fear and devastation. Peace and calm. Crying and sorrow. And fun and laughter. Yesterday she felt all of it. She wants to be home. She does not want to do this again. At the same time, she feels peace and loved. Before she went to bed her Uncle Jared texted "Is there anything that will help take your mind away from the hospital room? Movies? Music? Video games? Sitting in the sun? Let's think of something." Ashtyn texted back, "Something tells me that pretty soon I won't be in the mood for any of that." She was right. Today she doesn't feel up to doing anything. She is officially feeling the effects of cancer and chemo. Another very important lab value we look at is the "Absolute neutrophil count" or ANC. Neutrophils are a type of WBC that fights against infection. A normal number is 1,500 to 8,000. Even though her overall WBC count was way high when she came to the hospital, her ANC was only 1,000 because cancer had made the rest of her WBC immature. Today her labs showed an ANC of zero. That's what chemo does. She now has no ability to fight infections so is required to stay in her room with only healthy visitors. Chemo has also knocked out her platelets and RBC's so she gets transfusions daily. She is sick and hasn't got it in her to do anything but sleep. Prayer for the day: Please pray that her body will not instantly destroy the platelets that she is given. We want the new platelets to circulate in her blood stream for as long as possible before dropping again. Also, please pray that she will remain infection and illness free. She so easy can get sick and I want her to fight cancer without having to fight anything else.

October 14, 2016

A common question I've been asked is, "How did you know Ashtyn had cancer?" On Sunday October 9th, as we sat in our Sacrament Meeting at church, I put my arm around her and whispered, "Your color still looks pale and greenish." She is always a porcelain pale beauty, however for the past week I had noticed she was more grey. We contemplated whether or not I should take her to the nearby Instacare. We had no strong inclinations either way. Ashtyn decided she wanted to wait it out and go to her grandparents that night for a family party. I told her to walk home, get some water and a bite to eat, and then walk back to church. 45 minutes later I got a text, "Mom, I feel so lightheaded to the point where I'm scared to walk to church." I immediately called her. She didn't answer the phone! I panicked and thought the worse "She's passed out." As I ran home, four houses down, I kept thinking "Don't freak. Call 911 if you need to. Don't freak!" But I was freaking. I ran inside the house with my heart racing, hands shaking to find her hanging out on the couch with a friend. I was scared furious and said sternly, "Get in the car! We're going to the Instacare." There they did blood work. The WBC's were 85,000 when normally they should be 3,500. We were sent to PCMC. It was immediately clear to everyone else that she had relapsed. We still had hope. Ashtyn was admitted to the PICU. Her blood was thick and was at risk for a stroke. Three hours after being in the PICU, two oncologists came down and confirmed the diagnoses. Everyone was shocked. After being in remission for 3 1/2 years, it's so unusual to relapse. How did this happen? We will never know. Her bone marrow (which produces blood cells) was destroyed with her last bone marrow transplant. Her new bone marrow is 100% her brothers who was her BMT perfect donor. Her new cancer cells look exactly like her very unique old cancer cells, so they must have come from her. Did one little cancer cell survive last time, and finally after three years start dividing? Who knows. All we knew was, she had cancer again and we never saw it coming. (PCMC waiting room)