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.