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