October 31, 2016

Everyday goes by so fast for me. And each day is full of different emotions that are unexpected at times. Ashtyn had a slow start to the day. She laid in bed complaining of abdominal pain. The room needed to be quiet and low key while she laid in bed trying to sleep. Around noon I asked her if she was fighting today. She said, "No". I knew she wasn't. She was quietly mourning the reality of cancer. To you and me, she's had cancer for three weeks but to her she has only had it for a week. Morgan came to visit today. The first thing Ashtyn said was, "Happy Birthday Morgan". The day before Ashtyn went to the PICU was Morgan's 14th birthday on October 15th. Ashtyn's finally back to reality and she missed two weeks of her life. The first week of diagnoses was spent getting settled into the hospital and trying to wrap her mind around the reality of relapse. Now she needed time to mourn and feel the heartache that comes from facing the reality of cancer. It's so tempting to run from heartache by putting up walls and doing other activities that distract. I've always taught my kids, no matter how painful and difficult, when heartache comes, take the time to truly feel it to then be able to move forward and heal. Ashtyn needs to go through her feelings of sorrow, which will then spring her forward to being able to face each coming day with even more strength. About 1:00 pm Dylan came to visit and the fight within her started coming back. Side note on who Dylan is: Dylan stood by Ashtyn during her first round of leukemia as her home health nurse. Their friendship quickly progressed to a much deeper relationship where Dylan became her cancer rock. They have been close for over three years. When Ashtyn was told she probably relapsed, her first response was, "Call Dylan. I need him here now." And of course he dropped everything and came to the hospital to see her. We now call him her Godfather because there's no better word to describe their spiritual connection and the support he gives her in life. He is her constant cheerleader in all she does. When Dylan got there Ashtyn took a walk. She walked at least double the distance than she did yesterday and with much more strength. She walked to the other side of the unit called the "C" pod. While there she visited Shelbie who just finished her 3rd out of 4 rounds of chemo and is going home tomorrow. Ashtyn met her when she was admitted to the hospital three weeks ago, has seen Shelbie a couple times, and naturally feels a deep connection to her fellow teen cancer fighter. After hugging and talking to Shelbie, Ashtyn sat in a chair nearby and stared at a room down the hall. It was the room her friend Sarah stayed in 3 years 8 months ago. Tears started to come as she cried for Sarah Magera who passed away a month ago at the age of 16, after her long fight with cancer. Ashtyn met Sarah on "C" pod in February 2013 and will always remember her as being the first teen cancer friend she met. She looked up to Sarah for being so brave and so positive during her fight. Ashtyn's heart hurt missing Sarah. After she was done crying, Ashtyn held onto her walker and walked back to her room. Ashtyn's stomach continued to hurt. An ultrasound was done. The results showed no change since Friday. I wonder if a lot of her stomach pain has to do with her emotional pain. Caleb came to visit Ashtyn at 8:00 pm, as he does every night. They watched Cosby Show and Catfish together on the laptop. She then watched Modern Family and Seinfeld on the hospital TV. This was the first time Ashtyn could sit through an episode of anything. Not only did she watch one episode, she was up for watching four hours of TV! That is saying so much. She was not only feeling well enough to handle the stimuli from the noise, but also able to concentrate and stay awake to watch it. The girl is getting better.

October 30, 2016

Today was exactly the kind of day Ashtyn needed. Calm. Giving her a chance to get physically, mentally, and emotionally stronger. It started out after having a great night. She slept pretty much through the night. That was a first in 1 1/2 weeks. Ashtyn was able to sleep in, for the most part, until noon. Physical Therapy stopped by to take her for a walk. The task did not excite her at all. However, she got up and did what she knew was the right thing. It's hard for a healthy person to comprehend how difficult it is to support 100 pounds and walk after being knocked down completely and unable to walk for two weeks. A walker was given to Ashtyn and was told they would walk out into the hall and back. After getting out of bed and situated, a mask was put on her face, she picked up the walker and unsteadily started walking quickly out the door. She obviously wanted to get it over with asap so she could get back in bed. Ashtyn took a break after walking a minute or two and then walked slower back to her bed. I was very impressed with her strength. At 7:00 pm she took a dreamy sit down shower. She loved feeling the warm water spray on her body. Throughout the day she had been thinking about shaving her head. During the shower I asked if this was the night to do it. She said yes. Her boyfriend Caleb and his mom Jacque arrived at that time. I asked them to get a chair ready for Ashtyn. After her shower she walked to the chair, sat down, and with concern asked, "Mom, should I do this?" I asked her if she wanted to look at herself in the mirror. She nodded. A mirror was handed to her. Ashtyn was completely stunned and saddened at what she saw. Last she remembered, her hair was long, straight, and beautiful. Now, there was hardly anything left and had changed her entire appearance. She cried for several seconds and then courageously said, "Yeah, let's shave it." We got the clippers ready and handed them to Ashtyn. She quietly began to shave. After a few strokes she handed the clippers to Caleb and asked him if he would do it. He took the clippers and continued shaving her head. It became a little painful at the end so I finished the job. Once in bed Ashtyn went through several emotions. Sad. I encouraged her to cry. Angry. I encouraged her to be mad. She wants to go home. And that's a good thing. We all want her to go home. The fight is in her. She will fight everyday and each day she'll be one day closer to going home. Prayers of the day: 1. Keep progressing without any set backs. 2. For a healthy liver. 3. To get in remission as soon as possible so she can get a bone marrow transplant and go home for good.

October 29, 2016

Looking back at the pictures of Ashtyn during the last two weeks, to me they don't convey her level of sickness. When Ashtyn went to the PICU in septic shock, she became completely dependent on a breathing tube and medications to stay alive. She got off the ventilator and started to breathe on her own with the help of 4 L of oxygen given in her nose. She is now down to 1.0 L of oxygen. At her sickest, Ashtyn could not open her eyes. We were so excited the first few days she would open them, even when it was only for a few seconds. I would ask her to please open her eyes. With my camera ready I would fast burst so I could catch a picture with her eyes opened. Her eyes are now open every time she's awake. Ashtyn couldn't talk for awhile. When she did start to talk we couldn't understand a word she said. I would get real close to her face, concentrate on her lips, and try really hard to make out what she was saying. Once in awhile I'd understand a word or two but not much. She was also disoriented, not really able to distinguish dreams from reality. Each day Ashtyn gets better and better at talking. I remind her to slow down her speech and enunciate each word at a time. I can understand her so much better today. Since getting really sick, most of Ashtyn's days and nights were spent sleeping or trying to sleep. She would lay on her back with the head of her bed slightly elevated. Her butt started to have skin breakdown so we've used pillows to try to get pressure off her back side. Sometimes she would want to sit up to cough or throw up. I would have to sit her up and then help her back down. Just today she started sitting up on her own and sleeping in different positions. She's definitely getting stronger. As you might imagine, Ashtyn is too sick to realize or care when she has to go to the bathroom. She wears a diaper that I change about every two hours. This to me is one of the biggest indicators of how sick she is. My modest, independent almost 16 year old doesn't have it in her to care that her mom and nurses clean her. She has a bedside toilet for when she is awake and well enough to use. That time is coming. Ashtyn's been too weak to walk since being in the PICU. Sometimes she'll move from her bed to the toilet, to a wheelchair, or to a chair. The process of her getting up includes me helping her sit up in bed and swing her legs to the side. Then I encourage her to scoot until her feet touch the floor. Her arms lightly go on my shoulders while I wrap my arms around her back and slowly help lift her to standing. The farthest she's walked is about 17 feet to her shower. It took two people walking with her to make sure she didn't fall. She did awesome and it was a big accomplishment. She hasn't eaten for twelve days. For nutrition Ashtyn is given IV nutrition called TPN and lipids. Two days ago she started feeling thirsty. She likes Gatorade, apple juice, chocolate milk, and root beer. I have had to hold the drink for her as she sips through a straw. Yesterday was a big day! At 7:00 pm she asked for a root beer slushee, which the cafeteria doesn't have so we ordered a root beer float instead. I actually didn't think she'd eat it but it was worth a try. Once it got to the room I fed her a bite of vanilla ice cream. Ashtyn's not an ice cream girl but she loved it. After feeding her one scoop she got upset because she wanted to feed herself. With very weak and uncoordinated hands, she held the cup and ate the last scoop of ice cream. This weekend she will have minimal procedures and medical tasks to do. It will be the perfect time to strengthen her physically and emotionally. It's obvious Ashtyn needs to shave her head. I brushed clumps of hair out for several days and she doesn't have much left. She's been too sick to care or even notice. Shaving her head is a big deal. It's a day that emotionally she has to let go of any appearance of normal health and succumb to being a cancer patient fully. It takes a lot of courage and strength to shave your head. Currently Ashtyn isn't alert or herself enough to do it. Her hair will stay the way it is until she is well enough to look in the mirror and make the decision to let the hair go. In the last 24 hours her progress has been so amazing to me. She's getting there.

October 28, 2016

Ashtyn is nothing but yellow. But guess what?! Her bilirubin went down from 27.7 to 22.3 in one day. That's an impressive drop. I knew your prayers would work! Her bilirubin has been increasing for days but because of prayers, in whatever form they came, her bilirubin came down and things are looking better. What this all boils down to is this: the liver is obviously a vital organ. Once it fails there's no turning back. In addition, when the liver is struggling as much as Ashtyn's is, no chemo can be given. The big picture is to get her cancer free but we can't do that with her liver the way it is. I'm so grateful for your thoughts and prayers. Ashtyn's liver needed to make an immediate turn for good to get her on the right path of healing and total health. I promise, her liver's immediate response to your prayers is a miracle. Yesterday her liver was heading in the wrong direction. Today it is heading in the direction we need. God is definitely still a God of miracles. Love to you all. Ashtyn has a full day ahead of her with a scheduled CT scan, ultrasound of the liver, comprehensive chest X-ray, and a PICC line placement attempt. I will definitely update at the end of the day. *Sitting with her godfather Dylan trying to watch Office. Don't let this picture fool you. Ashtyn struggles to even walk a few steps. To get out of bed and sit in a chair is hard work for her. I always say to her, "It's hard because it's making you stronger."

October 27, 2016

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.

October 27, 2016

This is cray cray! Seriously! One complicated thing after another. This morning at 9:00 a.m. Ashtyn went down to "same day surgery" to get a bone marrow aspirate and biopsy. The procedure allows them to get a sample of her bone marrow to check out the cells and get an idea of how her body responded to chemo so far. As we wheeled her past families sitting in the waiting room, I saw the stares Ashtyn got and noticed even more how deeply sick she looks. On arrival I talked to the anesthesiologist, who took time yesterday to look over her charts. (She was suppose to have the procedure yesterday but we forgot to put her NPO so it was postponed to today.) He was very aware of her days in the ICU and wanted to be very cautious in what medications he gave. "I'm just going to go very slowly with her." I mentioned that a chest X-ray was done at midnight so he might want to take a look at it. Ten minutes later he returned with the news. The procedure was not urgent so he felt they should not go forward with it. He was too scared doing anesthesia on her, fearing it would send her back to the PICU. That would be devastating. "I don't want to hurt her. If I send her back to the PICU, she has no reserves to handle it." I thanked him profusely and choked up with tears of gratitude for being so thoughtful, so caring, and so cautious with my daughter. Ashtyn's oncologist Luke came down to discuss a couple other issues. Her bilirubin is climbing. Because of her kidney issues, Ashtyn's not stable enough to do an MRI or PET scan with contrast. She's also too unstable to get a liver biopsy. Everyone's doing the best they can with what we have. One thought is that she may have veno occlusive disease aka Sinusoidal obstruction syndrome which requires the drug Defibrotide to fix it. One problem with the drug is 5% of those who take it have bleeding issues. Ashtyn already has low platelets so she would regularly need platelet transfusions and monitored closely. Another problem, she needs a second double lumen central line because the med is given every four hours infusing over two hours. Luke wanted her to go to the OR today to get the second central line. On one hand, going to the OR is risky and might get her sent to the PICU. On the other hand, he doesn't want her getting worse and really wants to start that med. I was seriously sweating bullets. Should we do surgery today with the risks? Should we wait for tomorrow and hope the diuretics improve her lungs throughout the day? Or will she be worse and less stable tomorrow? All I really really knew was I did not want her going to the OR today. We discussed that the IV team placed her first PICC line in her room while in the PICU. She handled it well so that was the new plan. To get her back to her room, place a PICC line, start Defibrotide, and hope it works without any bleeding complications. Once we got back to her room, the IV team was already there to take a look at her. I was so happy to see that the woman who placed her PICC line in the PICU was there to place her second PICC line today. They took a look at her veins with an ultrasound, marked the vein, put numbing cream on her arm, and an hour later they were back to place the PICC. Her first PICC line took 20 minutes. Today the IV team was at her bedside for 1 1/2 hours and walked away without success. The catheter of the PICC line would not thread to the proper place. Here's the deal: I need every amount of prayers to petition to God that her bili levels go down immediately showing us that she does not have veno occlusive disease, does not need the medication defibrotide, and does not need that extra PICC line. I don't care what God you believe in or where you find your spiritual strength. Each and every one of us has spirituality within. Search deep and send those prayers and energy to help get her liver on the right path. By morning we need to see some indication her bilirubin is coming down. And ideally see some lung improvements as well. Please don't push this aside thinking your prayer doesn't matter or that she has enough people praying for her already. Your individual prayer does help so please join us no matter how short your prayer it might be. My heart is full of faith in your prayers and know that God is still a God of miracles. The power of prayer in numbers can bring about the miracles we want. Please share this with as many people as you can and even email it to those you think would be interested in helping but don't get on Facebook.

October 26, 2016

Lots of emotions go into one single day at the hospital. Tuesday October 25th: Morning: started with Ashtyn wanting me to get in her bed and hold her in our classic comfort position. The head of her bed inclined, me sitting on a 120 degree angel while Ashtyn sits in front of me, between my legs, and lays back against me. Her stomach hurt and wasn't feeling well at all. Ashtyn was told she needed an nasal gastric tube (a tube that goes in her nose and down into her stomach. It would then infuse formula into her stomach.) She has a history with NG tubes from her previous cancer diagnosis. Getting them inserted is a nightmare for her. Once in, the tube just makes her depressed. After getting bummed about the tube for a little while she asked, "Can I just eat the calories myself and not get the tube?" With the understanding that her energy is low and she hadn't eaten in 10 days, the determination was there to do all she could to not get that tube placed. The rest of the day she sipped on chocolate Carnation drink. She probably drank close to 1,000 milliliters. Not bad for her first day. Afternoon: Recovering is hard work. Lungs need to be strengthen: Ashtyn's suppose to do breathing exercises. Muscles need to get stronger: Physical and Occupational therapy encourages muscle strengthening exercises and flexibility movement. Nutrition is important: She's often asked to drink "one more sip" of her Carnation drink. Even the basic task of getting up to the bathroom is a chore. She noticed, "A few weeks ago I could walk upstairs. Now I can't even walk one step forward." Hygiene: She's suppose to do oral care four times a day and get a bed bath or shower every other day. There's never a shortage of tasks to do and healthcare providers coming in and out of her room. Evening: Ashtyn was moved to the cancer floor after nine days in the ICU. Even though she was very happy to leave PICU, anxiety kicked in. There is so much going on in her body and around her that she is over stimulated. Night: Ashtyn had a temperature of 102 degrees. A blood culture was drawn. There's really nothing we can do for her fever. She's already on large spectrum antibiotics. Tylenol hasn't been helping to bring it down. We ended the day like we started it. Ashtyn wanted me to get in bed with her. She's feeling anxious and awful. At 2:00 a.m. she laid in front of me, I held cool cloths on her forehead to try to decrease her temp. At 3:00 I laid beside her trying the ease her anxiety further. At 4:00 am she still couldn't sleep. It's 5:00 am: Her temperature is gone but she's still restless, anxious, and unable to sleep. They say that ICU's can really mess up ones psyche. I would say that's the case with Ashtyn. Nights are rough and we are doing all we can for her. All in all we are still three steps forward so I can't complain. God is good. Prayers of the day: 1. For her liver. 2. That her nights will improve with less anxiety and more normal sleep. 3. That her appetite and ability to eat will increase. 4. Her doctors and nurses will be inspired to know when there's a red flag that needs to be looked into. **Ongoing prayers that she will remain healthy and get into remission as soon as possible**

October 25, 2016

Ashtyn's definitely going places!!! That's a big thumbs up for getting out of the ICU today! She's heading up to the cancer floor, her home away from home. Can't wait to write a more detailed update tonight! Much love to all of you for getting her this far 

October 24, 2016

As Ashtyn is recovering from septic shock, it's been 3 steps forward, 1 step back. That's pretty good odds in my opinion. She's getting there. A few days ago her kidneys were not functioning well. Her BUN was 80. Once the level hits 100, they consider dialysis. She also had 8 liters of fluid that she had retained in her body. Her hands, arms, face, eyes, and really everywhere else were puffy. The kidney doctor wanted to see a urine output of 1 to 1 1/2 liters of fluid a day. Hundreds of prayers were said to specifically help Ashtyn's kidneys. After a 24 hour focus of prayers for her kidneys, rapid improvements were seen. In fact, her body exceeded the 1 1/2 liter fluid a day output. Diuretics were quickly not needed to help her body get rid of fluid and was even given extra IV fluid to offset her urine output to make sure her body doesn't get dehydrated. Her kidneys are doing well. Now her liver is in need of prayers and attention. In the last several days she has had upper abdomen pain. A lab value called bilirubin doubled from 10-20 in probably 16 hours. A common cause for an increase in Bili is a blockage of some sort in the liver, whether from inflammation, abscess, or a number of other things. This morning an ultrasound was done of her liver and abdomen. Absolutely no abnormalities were seen. The liver team was called and are now putting into considerations other factors that may be causing it. Other then Ashtyn's liver, she is doing so good!! Your specific prayers to help her sleep are being answered!!! She's sleeping well and her restlessness is gone. Hence the reason I'm able to write this. Prayers for the day: 1. That her liver will start healing. 2. That her pain will lessen and she'll begin to feel less malaise 3. That she will remain infection free so recovery will continue. **One standing prayer that is needed Every Single Day is that the chemo will kill her cancer so that she can get into remission and be able to get a bone marrow transplant** The chemo is still in her body. Let's pray it's doing its job. Thank you for your faith in God and your faith in Ashtyn.

October 24, 2016

The last several nights have been rough dealing with restlessness and pain. Ashtyn had extreme abdominal pain. Because her total bili lab value had doubled, we figured there must be a blockage of some sort in her liver. An ultrasound was done of her liver and abdomen this morning. We are still waiting for the results. I'm not going to lie. Watching her struggle severely the last several days wore me out. Yesterday I hit a wall of exhaustion. Brad, Ashtyn's step dad, has come up every night to sit by her bed and help her with whatever she needs. That has allowed me to sleep pretty good from 2:00 - 6:00 am. Jason came to the hospital this morning and I slept restfully from 9:00-12:00 pm. I do sleep better at Ashtyn's bedside than I would at home. So I recline my comfortable chair and snuggle into my pillow with the fuzzy Brighton High School blanket that was given to her. I'm now going to go take a much needed shower, in the hospital of course, and then face the day with energy again to do what is needed for Ashtyn. Side note: I'm a nurse and worked in the NBICU for 10 years. Her dad Jason is an anesthesiologist. With Ashtyn, it's easy for me to be the mom, not the nurse. All my questions and concerns come from being a protective mom and knowing her. Jason as well has no problem being the dad, not the doctor. He has no interest in managing her medically. Today Jason got Ashtyn up to sit in a chair for the first time since being in the ICU. She said, "What happened to you being my dad and not my doctor?" His response, "Well I'm just doing what your doctors told me to do." Once Ashtyn sat up she said to him "If this goes wrong, I'm suing you." Even when she feels more miserable than any of us could comprehend, Ashtyn's still a sweetie and still funny. Currently I'm waiting for results back from the ultrasound to see what's wrong with her liver. I will update tonight on her progress of the day. Thank you for loving her.

October 24, 2016

I'm so exhausted and fried but I want to updated a little of what went on Saturday (22nd) and Sunday (23rd). I wish there was a camera in the room so you could see everything that goes on. There is so much I'd like to share. I'd love to share all the ways Ashtyn shows her determination and strength. Some of the things she has said: "I feel awful. I'm going to get better fast and then get out of here." "Thank you" every time someone does something for her. "I'm sorry" when she feels she wants to be more herself. "One breath at a time" when she's coaching herself to calm her anxieties. "I'm so tired. I can't function like this. I need morphine so I can sleep." She can't have narcotics right now so she came up with another idea. "Can I have ben/ phen?" A medication she knows helps her sleep. The answer was yes. Ashtyn's not always coherent but is becoming more and more so. Her short term memory struggles which is completely understandable. Saturday (22nd) night was the first night she asked me, "Mom, what happened to me?" I asked what her last memory was. She remembered Sunday night the 16th, the night before she went into shock and was taken to the PICU. I explain how the following morning she went to the PICU very sick, needed a breathing tube, and had worked so hard for days to get better. On Sunday 23rd she had no recollection of that conversation and asked again what had happened to her. I reminded her again. My mind is jumbled so I will simply jot somethings down that have occurred this past Saturday and Sunday: Her kidneys started to show great signs of improvement. Her central line was taken out and replaced with a picc line. Her art line was taken out. She's still on oxygen but because of restlessness is moving around more which is good for her lungs. It's been both joyful and difficult watching Ashtyn transition back to life. We are so happy watching her improve and become more herself. On the other hand, it's difficult to watch the hardships necessary as she heals and recovers. It's been exactly one week since Ashtyn almost died. I know this was a week of miracles. I don't say that lightly. Ashtyn knows hundreds of people have prayed and fasted for her. We know that Primary Children's Hospital is a phenomenal hospital with the most capable staff. We needed both their expertise and the grace of God to get Ashtyn to where she is today. She is a miracle because of you. I hope each of you feel that your prayers matter and are affecting Ashtyn's life for good.

October 23, 2016

I've been wanting to give an update all day but haven't had the time or energy. Ashtyn is extremely restless, anxious, uncomfortable, and in pain. She feels horrible and exhausted. All she wants to do is sleep but her body isn't letting her. Surprisingly this is a good thing. It means her body is recovering and she is coming back to reality. As Ashtyn gets medically better and better, she is able to feel the effects of what her body went through during shock and also the effects of the chemo that is still in her body. I will give a more detailed update hopefully by morning. But for tonight, please pray that she will sleep well. Pray that her stomach pain will go unnoticed during her sleep. Pray that her mind will calm and her body will relax allowing her to get the REM sleep she hasn't had in nine days. Have a good night everyone.

October 22, 2016

Ashtyn has been sleeping so good today and her kidney's are on the mend! She's being blessed with exactly what we asked for ❤️ As she sleeps I wanted to share some of my thoughts and feelings. It's been almost two weeks since we found out Ashtyn's cancer has relapsed. Obviously, it's been quite the two weeks. Our vision of the near future is much different now than it was. This week we were suppose to be in New York. My dad was born and raised in upstate New York. Ashtyn's grandma, grandpa, aunts, uncles, and cousins from my side had planned this trip for a year. Last Tuesday we were planning on flying to New York City for a few days, a place Ashtyn has never been. We were then going to head up to Rochester to visit her great great aunt, walk around Palmyra, see her great grandparents grave and the house her grandpa was raised in, and just enjoy the fall colors of upstate NY. Today we probably would be riding our bikes along the Erie Canal after visiting the Sacred Grove. This week ended up different than we thought. Ashtyn had other plans as well. Several weeks ago she was working on finishing her drivers ed. She turns 16 on November 25th. Three weeks ago as Ashtyn was driving around she said, "Mom, I've been waiting to be 16 since I was 8." It's true. From the time she was little she couldn't wait for her 16th birthday. She mostly looks forward to school dances and driving. In November she was planning on applying to be a volunteer at Primary Children's Hospital helping kids on the cancer floor. She also couldn't wait for January. Ashtyn had a countdown on her phone of how many days left before our Disney Cruise with her stepdad, dad, stepmom, step siblings, and siblings. Side note: When her dad and I got a divorce we promised the kids it would not break up the family more than it had to. Ashtyn and her siblings loved family cruises so we promised we would all go on one together some day. We ended up booking a cruise for April 2013. She got her first diagnosed cancer in January 2013 so we had to cancel the cruise. Finally we were able to plan it for a new time in January 2017. We will have to postpone it again. Well, here we are in the hospital with a new reality... and it's ok. Change is inevitable. We have to just go with it, roll with the punches, and make the most of every moment. At the beginning of the post I said our vision of the near future has changed. However our vision of years to come is the same. After Ashtyn had cancer the first time, this song really hit home for me and is something I try to live by. "In the blink of an eye, just a whisper of smoke, you could lose everything. The truth is you never know. So I'm gonna love you like I'm gonna lose you. I'm gonna hold you like I'm saying goodbye. Wherever we're standing I won't take you for granted, 'cause we never know when we'll run out of time." Time is always running out in whatever phase of life we're in. So I say, live with no regrets. At the end of the day, what really matters is our relationships with others and doing the best we can with what we have.

October 22, 2016

There rarely is a dull day in the hospital, unfortunately. Much of Friday was trying to keep Ashtyn resting as she experiences ICU delirium. I read that about 2 out of 3 patients in ICUs get delirium. 7 out of 10 patients get delirium while they are on a breathing machine or soon after. Well, it's a no brainer why she is delirious. Number 1. Ashtyn hasn't slept well at night for a week straight. That would cause me to be delirious too. She was extremely sick and constantly being woken up, day and night, for one thing or another. 2. Her BUN and creatinine are high because her kidney's aren't functioning properly which could cause delirium. 3. The amount of drugs she's on and having a room without any windows I'm sure affects her sleep cycle as well. What does delirium look like with Ashtyn? Ever since getting her breathing tube out 40+ hours ago, she is restless, incoherent, and talks in her "sleep" regularly. It's exhausting to watch so I'm sure it's exhausting to her not being able to get into a nice deep REM sleep. Yesterday she was moved to a room with a window. She seemed happy in her new room and asked, "Can I walk?" Not yet. "I just need some fresh air." I don't blame her! Last night she was started on a sedative called Precedex to see if that would help the delirium. Crossing our fingers and praying that she'll start getting over her delirium today so she can sleep restfully and feel more herself. Sometimes she notices how out of it she is. By what she says, I know she doesn't like the feeling. With all her effort she said, "You. Are. Crazy." I asked, "Who's crazy?" Her response. "Ashtyn." Though she is commonly confused, at the same time is lucid. One moment she'll say things that don't make any sense and then I can bring her back to earth with questions like, What's your favorite Disneyland ride? "Splash Mountain." Who am I? "Mom." Do you know everyone's so proud of you? "Really?" and then smiles. Along with the delirium, there is also other medical issues being watched and managed. Yesterday she got a blood transfusion and platelet transfusion. In the less than two weeks she has been in the hospital, I have lost track of how many blood product transfusions she has gotten. I've wondered if I should go back and try to count them all. Yesterday she also got a CT scan of her head to see if there was fluid in her brain caused by the bacteria that was in her blood. No fluid was found. She got a chest X-ray which did show fluid outside her lungs and will keep an eye on that. She got an EKG to check her heart rhythm to see if she could take a certain anti-delirium med. The test showed a prolonged QT rhythm so the first drug of choice couldn't be given. I just have to say, every healthcare worker in the PICU is amazing. Today: Please pray she'll start getting over delirium, so she can sleep soundly. Please continue to pray that her kidneys will take a turn around and function to where she won't need dialysis. Please pray she will remain infection free and able to continue her healing processes. Thank you. She couldn't do this without you.