How are we doing?

How are we doing? We're trying. We are ok and ready or not, going to fight this thing. We are not in denial and unaware of what we are facing. We may not know what this battle is going to look like but we do know it is a battle we'll fight with as much positivity and optimism as we can. You may wonder how that is possible. The answer is, there is no other choice. Worry and fear are such a waste of emotions that are not productive and will change nothing. Why worry about things we have absolutely no control over? Why worry about things that may or may not happen? We are going to live in the moment, day by day, and let go of the rest. We know Ashtyn needs to do her part, I need to do mine, her doctors and nurses will do theirs, her family will, and hopefully her Army as well. So we will let go of worries of the future and things we have no control over and instead live each moment for what it truly is, leaving the rest to God. 

Today Ashtyn went to school because she doesn't know the next time she will be able to. It was physically exhausting and emotionally draining. With the school trimester ending on March 1st, her counselor is going to freeze Ashtyn's current grades so she can get credit for the trimester. In a week or two we will determine whether she can finish out the school year or not. Chandler and Morgan left for Las Vegas this morning. Brad, Ashtyn, Ethan, and I are going to pack up and leave in a bit. We will enjoy this last week we have with Chandler before his mission and enjoy the moment. Please pray that the oncology doctors and staff will be guided, educated, informed, and enlightened as to what the best course for Ashtyn will be. Thank you for the love you are already sending through visits, texts, messages, and phone calls.

Third Time Fighting Cancer

On Tuesday I took Ashtyn to the cancer clinic for her monthly check up. We were both so confident in her health. She has been feeling strong, energetic, and better than ever. We were shocked to find her complete blood count lab came back abnormal. Her red blood cells, white blood cells, and platelets were all quite low. Of course our first thought was that she relapsed. My body's stress response kicked in where I shook and felt freezing cold. Ashtyn cried and fear overtook her. We then started thinking that it must be a virus affecting her marrow and its ability to produce blood cells. The decision was made to check her for Leukemia as well as a slew of viruses.

Today she went to the hospital for a bone marrow aspirate, biopsy, and lumbar puncture to check for leukemia. She also got a bunch of blood work done to test for viruses. Ashtyn was cautious and nervous all day thinking she had a 50/50 chance of having cancer again. I was uneasy but hopeful it was a virus and she would bounce back in no time. We got home at 3:30 p.m. and by 5:10 p.m. I got a phone call with "Oncology" on my caller ID. I walked away to be alone as I answered the phone. One of Ashtyn's bone marrow transplant doctors let me know that she had relapsed. I felt surprisingly calm as I asked a few questions and then hung up the phone. I walked into the living-room, sat down next to Ashtyn, and looked at her. Her eyes widened and she cried, "No!!!" Yes, it's true. Cancer is back. She sobbed, screamed, freaked, and was devastated. It's been a few hours now after finding out the news. Ashtyn is terrified and calm and hopeful and scared and every other emotion. If you were to ask her how's she doing the answer would be, "It's a mix of emotions. Ask me in a few days because right now I feel different every 5 seconds."

The facts are: We have no idea what to expect in the coming weeks and months. Tomorrow we are leaving to Vegas for Morgan's cheer competition. The doctors need a week to figure out what to do anyways. We get home on Tuesday and will take Chandler to the Missionary Training Center Wednesday where he will be serving a two year mission to Orlando Florida. Thursday we will meet with oncology doctors to discuss options and plans. For now we will just go day by day trusting God's wisdom, perspective, and love with complete faith in the miracles the Lord wants for her.

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.