As Social As She Can Be

Things are ever changing. Three days ago (Thursday) Ashtyn had surgery. She was so brave. On the way to the hospital we discussed whether or not she should get a new NG tube. Knowing that in the near future she would have days of radiation, chemotherapy, and the transplant, she wondered if she would be able to have the energy and desire to eat the needed 1500-1800 calories a day. “What will make you more happy?” I asked her. She decided that an NG tube would take the stress off of having to eat all the needed calories. The plan was that she would eat what she wanted during the day and a pump would infuse formula through her NG tube into her stomach while she slept at night. Ashtyn felt good about this decision because it was her decision. And what made it most appealing is that the tube would be placed into her stomach while she was under anesthesia during her scheduled surgery.

Waiting to register, waking up at 7am is early!

An oncologist talking to Ashtyn 

What was she having surgery for? The bone marrow transplant team wanted her to have a new Broviac central line to be sure she started the transplant with an infection free central line. While under general anesthesia, a catheter was inserted by a surgeon under the skin of her chest wall and into a large vein that leads to the heart. A small incision was made near the collarbone where the tip of the catheter enters the vein and then it is threaded into the superior vena cava, right above the heart. The central line allows her to receive all the needed IV fluids, medications, and lab draws without having to be poked.

After surgery staying warm!

Along with the surgeon placing the central line, the oncologist performed a lumbar puncture and injected chemo into her spinal fluid. Also a bone marrow aspirate and bone marrow biopsy was done. Bone marrow has a fluid portion and a more solid portion. With the bone marrow aspirate, the doctor used a needle to withdraw a sample of the fluid portion. For the bone marrow biopsy, a larger needle was used to take a sample of the solid part. Pathologists then examine the sample to see if Ashtyn’s bone marrow produced any cancer cells. The initial results came back as having no cancer. Final results come back Monday. The two hour surgery went perfectly without a problem. We arrived at the hospital at 7:30 a.m. and headed home by 2:30 p.m. In and out. 

The following day, Friday, we discussed what we should do that night. Ashtyn’s time at home is limited and I felt it would be good for her to get out. At 4:10 p.m. Chandler suggested we go to a movie. I got on-line and noticed the movie “Ephraim’s Rescue” was playing at 4:30 p.m. and it appeared to be have a fairly empty theatre. The movie theatre was 15 minutes away. “We better hurry.” I am so glad we made it. The movie was a must see and Ashtyn enjoyed being out of the house way more than she thought she would. Saturday Ashtyn agreed to go to the pool. Upon arriving, we placed her chair under the shade, got her a large Powerade and chicken strips, and she relaxed in the peaceful setting for 1 1/2 hours.

Since being diagnosed with cancer, Ashtyn rarely has had energy and endurance to be social. There have been occasions where she has enjoyed friends, however the majority of the time she has been overwhelmed in social settings. That is why I was shocked when on Saturday night she voiced her desire to have a party. She wanted a party where anyone and everyone was invited. “It’s my last chance until next summer.” And that’s true. Tomorrow Ashtyn is starting radiation therapy, which I consider to be the first day of the bone marrow transplant count down. Monday was the only option for a party. What have I learned about cancer? Just go with it. No matter how crazy it might be, her dad and I quickly agreed to have a last minute BBQ for anyone who would like to come. She also wanted a party with her grandpas, grandmas, aunts, uncles, and cousins. I immediately sent out a mass text asking if family would come the next day for a dessert party. Sunday, she had two grandpas, two grandmas, seven aunts, five uncles, and eight cousins show up.

I am grateful and proud of Ashtyn for not losing herself to cancer. She is a social girl who has always thrived when she is around people. Her body is tired and it’s difficult for her to handle a lot of stimuli, but she is letting her spirit take charge.

Ashtyn Invites the Army to a Party

Since I will be back in the hospital shortly, I would like to have a BBQ to celebrate the beginning of my bone marrow transplant. I would like to invite anyone who would like to join. I would love to see my army there. Use the contact link and email my mom if you need my address. It will be at my house on Monday the 3rd from 6-9 pm. We will be serving hot dogs and hamburgers. If you aren’t able to find a parking place, park at the church. Bring a chair or blanket to sit on. If you want to bring something to share, you can. For those not in the area and those who are not able to come, your support definitely means a lot.
Love, Ashtyn

RSVP poulsensuzanne@gmail.com so we can get an approximate count on how much to buy.

From Ashtyn

I was really in a funk. I was sad and depressed. I was wasted. I was empty. Totally drained. The past few months took all my fight in me. I didn’t have the urge to keep fighting anymore. I was tired of fighting. Tired of spending time at the hospital. Tired of being sick. Tired of having cancer in my life. But after I threw up my NG tube I realized I have to snap out of it, build up all the energy I can, and do three more months. I am going to get rid of this cancer for good and keep building up to be a better person. I am going to not let my body tell me what to do. I am going to be in charge of my body from now on. I am not going to let it win. I am not going to let this cancer beat me. I am not going to let it get the better of me. I am not going to let it ruin who I am. It almost ruined who I was. I wasn’t taking care of myself. I wasn’t making my body fight. Instead I was laying around, letting my body be sick.

Before, I tried so hard to avoid the NG tube. When they told me I had to get one placed I thought, “well this means I’m not strong anymore.” That one thought added to more and more thoughts, “I can’t do this” and “I am not strong enough.” The transplant was scaring me too. I thought, “How can I do it?” I didn’t understand why I had to do all of this. I wished I could just be done with it all and just quit. Just say, “I am done,” drop it, not do the hospital stuff, and not do the transplant. What I really need to do is build up all my strength and just go through a couple of months of this, be done with it, and say “I officially beat cancer!” It will be a short little memory.

Since I have to do a few more months I want to make every day count. I want to do my best every day. I want to try and exercise and try to get all the nutrients I can. I want to try and find positive things in everything because I know there are positives in everything. When I’m not in the hospital I want to get out and enjoy the world outside of the hospital. When I am inside the hospital I want to have a laptop and write a book about my trials and my journey. I know it sounds weird, but I want to enjoy being in the hospital. When I am done with the bone marrow transplant I won’t spend nights in the hospital anymore. While I am in the hospital I want to enjoy all the nurses and staff. I want to enjoy the really deep spiritual, temple-like feeling that is there. I want to enjoy spending so much time with my mom because when we are out of the hospital I won’t constantly be in the same room as her. One of my favorite nurses gave me the idea to learn to play the ukulele or guitar in the hospital. That thought has always stuck as a fun idea. I think it would be fun to learn to play and then show him what I can do.

I have really good and positive thoughts about the transplant. I know that God will have my back and it’s all going to be ok. I am going to have my mom there the whole time. Right now I can imagine my future. I can see myself going to my mom’s house to visit her while my kids are at school. We will sit on the couch and talk. She’ll say, “Ashtyn do you remember all those months we spent in the hospital?” And we can just talk about it. She was there with me through the entire thing and knows more than anyone what I went through.

When I feel down during the transplant I will be able to read all the comments on my blog and Facebook which will give me that extra boost. It really comforts me to know that I have so many people out there following me and supporting me. Whenever anyone comes up to me and tells me they have been reading my blog, I feel like I know them. They know what I have been through and it makes me so happy to have people care. When someone tells me that they are following me, I have an instant love for them. I wish I could reply to all the comments I get. I do read all of them. I care about all of them and they make me happy. I don’t think of people who follow me as strangers. I think of them as part of my Army and my close friends. We are all in this together. I can’t wait to have a big party. I am going to invite every single person in my army and would love to talk to all of them. Without Ashtyn’s Army, this trial would be so much more hard to deal with. They take such a load off my shoulders. I am really grateful I have so many people supporting me.

When I’m really sad or sick, not only do I have the Army fighting with me I also have angels. It’s like what Mattie and Kim commented about on Facebook about the pioneers who felt angels pushing their handcarts when they didn’t have the strength to do it on their own. Francis Webster said, “We suffered beyond anything you can imagine, we came through with the absolute knowledge that God lives, for we became acquainted with Him in our extremities. I have pulled my handcart when I was so weak and weary from illness and lack of food that I could hardly put one foot ahead of the other. I have looked ahead and seen a patch of sand or a hill slope and I have said, I can go only that far and there I must give up, for I cannot pull the load through it, the handcart began pushing me. I have looked back several times to see who was pushing my cart, but my eyes saw no one. I knew then that the Angels of God were there.” I really do feel angels have been pushing my cart along the way.

I am surprised that going under anesthesia doesn’t scare me anymore. I am surprised that I’m not scared to go to surgery to get my new central line tomorrow. I am surprised I can drive to the hospital without flipping out and not being insanely scared. I can talk to people without being shy. I can do amazing things, much more amazing than I thought I could do. I now know all these medical terms. I can talk to my dad about all these medicines. It’s so weird. It’s so surprising what I can do now. I thought I was strong before this. The divorce made me so strong but now words can’t describe how amazed I am with myself. I wouldn’t be anywhere near like this without God. I am nothing without Him.

Mind Over Matter

I had a short lecture with Ashtyn in the hospital when she woke up Monday. “When Michelangelo painted the Sistine Chapel ceiling and sculpted David, he had a vision of what he wanted it to look like. He knew what it was going to look like before he even started. Ashtyn, you need to have a dream of what you want and then you can make it a reality. Without a vision of where you want to go, you aren’t going to go anywhere.” The short conversation ended. An hour later the doctor came into the room as he had done each afternoon over the weekend. “Ashtyn, what are your plans today?” he asked. “I don’t know. Just rest I guess.” I turned to her, “Seriously Ashtyn, what are your plans today? What are you going to do?” She thought about it for a few seconds and asked the doctor, “Can I go home?” Pleased and with a smile on his face he said, “Yes.”

The day before, as Ashtyn was curled up in her bed, sleeping deeply in the middle of the day with the blanket partially over her head, I asked the doctor, “What needs to happen for her to go home?” Pointing at the inanimate girl, he frankly said, “She just can’t be like this.” The following day, her simple question, “Can I go home?” was enough for him to observe that, “Ashtyn, you’re much more here today than you were yesterday. I see no reason why you need to stay in the hospital.”

Straight to the pool from the hospital

Three hours later, she left the hospital and was taken directly to the pool. It was Memorial Day which is a day we love to spend at the swimming pool. Ashtyn wanted to go home but I insisted she spend some time outside. She spent 30 minutes sitting by the pool, not particularly happy, sad she couldn’t swim, and sick to her stomach. Shortly after getting home her Uncle Casey and Aunt Alisa came to visit. Alisa jumped on the trampoline with her daughters while Casey had Ashtyn sit on a camping chair next to him. Watching her adorable cousins would have normally brought much joy to Ashtyn, but she continued to not feel well. Casey and Alisa brought cookie dough and made cookies while Ashtyn slept on the couch. Their efforts for Ashtyn were perfect, but she was in a funk that was proving to be difficult to get her out of.

Ashtyn had an IV pole that hung a bag of formula with a tube that fed into a pump and then hooked to her NG tube. The goal was to have the formula infuse at a rate of 75 milliliters every hour, 24 hours a day, to give her the calories and nutrients needed. She couldn’t handle any more than 25 ml’s an hour, which was a problem in the hospital as well. At 5 a.m. she asked that I put the pump on hold so her stomach could calm down. Shortly after waking up Tuesday morning we talked about the importance of getting to the point where her stomach would handle 75 ml an hour. It had been 2 weeks since she first got sick from gallbladder stones and she hadn’t eaten well since. It was imperative that she got off the starvation path. I left the room and shortly came back as she was throwing up in a bag. Before we knew it, she had thrown up her NG tube. The tube went in her nose and out her mouth. My head raised to heaven as I shook my head asking God, “Why? After two weeks, why is she still throwing up? After two weeks, why does her stomach still not handle food? She needs food desperately. Losing more weight would be detrimental. Why? What is the purpose? So far, after each stumbling block, I have seen a purpose and blessing in all things. I honestly see no purpose in this.” She attempted to put the tube back down her throat and into her stomach. “Mom, if I eat all the calories I need, can I not have the tube? I learned my lesson about avoiding food. I will eat.” I took the tape off her face and pulled out the tube.

With the tube out, I immediately saw Ashtyn come to life. Her smile was back, her sense of humor was back, her energy was back. My question was answered. The purpose? It was time and Ashtyn was ready for the tube to come out. She had thrown up many times before with the tube in her nose. Why did she throw up the tube this time? It clearly was the right day for her to throw up the tube to get rid of it. I shouldn’t have doubted God. Before going to bed she shared this insight, “Before, I tried so hard to avoid the NG tube. When they told me I had to get one placed I thought, ‘well this means I’m not strong anymore.’ That one thought added to more and more thoughts, ‘I can’t do this’ and ‘I am not strong enough.’”

The tube pushed her over the edge and played a part in her losing her fight within. With the tube gone, she ate as much as she could during the day and didn’t throw up once. She ate more calories than she was getting with the NG tube. Much of the day she felt very full. Tonight before laying down, she sat on the bed with her legs crossed and head in her hands. “What are you doing?” I asked. “Hold on. Mind over matter.” Several minutes later she explained, “I was visualizing my stomach stretching out and my body absorbing all the stuff I ate today. When I do this, it’s weird. My stomach doesn’t feel as full. I can also see little baby cells maturing into bigger and better ones. This was one of the best days I have had in a long time.”

“The tests of life are tailored for our own best interests, and all will face the burdens best suited to their own mortal experience. In the end we will realize that God is merciful as well as just and that all the rules are fair. We can be reassured that our challenges will be the ones we needed, and conquering them will bring blessings we could have received in no other way.” ~ Jeffrey R. Holland

Saturday: Feeling worn out and spent

Sunday: Siblings trying to cheer Ashtyn up

Monday: Casey trying to cheer her up
but she continues to feel down

Tuesday: Tubes out and feeling good!

Tuesday Night: Going to bed happy with positive
thoughts and ready to fight

Emotionally Spent

Here are some statistics: It has been 116 days since Ashtyn was diagnosed with leukemia. She has spent 77 days and nights in the hospital as an inpatient. She has spent 39 days at home. Of the 39 days at home, 12 were spent at the hospital for doctor’s visits and other procedures. A total of 89 days out of 116 days, Ashtyn has spent at Primary Children’s Hospital.

Just off the top of my head she has had four CT scans, three heart echos, three EKG tests, an abdominal ultra sound, chest X rays, hearing test, nasal scope, central line placement, and two nasogastric tube placements. She has had two surgeries under general anesthesia; one to place a central line into her heart and one to take out her gallbladder and flush stones through her common bile duct. Seven times she has been under general anesthsia for bone marrow aspirates, biopsies, and/or chemotherapy. She has had more chemotherapy drugs than I have kept track of and more red blood cell and platelet transfusions than I can count. Medications have been given for sedation, anxiety, pain, fevers, mouth sores, constipation prevention, antibiotics, antivirals, antifungals, and eye drops. IV and nasogastric tube nutrition have been given. She has lost her hair, lost her appetite, thrown up bile, thrown up blood, thrown up food, had nose bleeds, nausea, mouth pain, throat pain, leg pain, back pain, stomach pain, central line surgery pain, gallbladder surgery pain, central line infection, blood transfusion reactions, C-Diff, a full body rash, weak legs, had multiple IV starts and lab draws. There have been times she has had low blood pressures, high blood pressures, high temperatures, high heart rates, and low heart rates. She has had one “rapid response” with a severe low blood pressure and two “code blues” losing consciousness, all three requiring her to spend time in the pediatric intensive care unit. She has dealt with the isolation that comes from being immnocompromised and unable to socialize how she loves to do. That’s just the beginning and doesn’t include the many daily rituals that have become part of her life as she battles cancer.

Ashtyn is currently in the hospital and has been here nine days. Recovering from having her gallbladder out has been rough. What normally is a very simple surgery, where most bounce back quickly, has really taken a toll on her. The first several days, Ashtyn experienced a lot of incisional pain and was given pain medications regularly. She didn’t have an appetite and had been losing weight for some time, so two days after surgery she got a tube placed in her nose for food to be infused into her stomach. Three days after surgery she started to have a great amount of nausea along with her surgery pain. The surgery pain subsided after five days but her stomach continued to feel sick. Each day it seemed a medication was added or changed trying to help relieve her nausea. After giving food through the tube for four days, the feedings were stopped because she kept throwing up. Each day seemed a mystery as to why she felt so horrible and perplexed the surgeons and oncologists. From the surgical standpoint, her lab work showed that the surgery was a complete success. From the oncology standpoint, his best guess was that she has a stomach virus. The doctor said, “Ashtyn is very unique. She keeps us humble. I think I am really smart, I’ve been doing this for years, however patients like Ashtyn remind us that we don’t know everything.”

Yesterday I realized that her emotional well-being was affecting her physical comfort. I realized that Ashtyn was emotionally down. Even at home she had mentioned that she was worn out and didn’t think she had it in her to go through as much as she used to. With those feelings, she had to get her gallbladder out because of random stones, got a stomach virus, and has experienced pain and nausea for eleven days. She is physically and emotionally spent. A few hours after my realization, the doctor visited us in her room. The first thing he said was, “I thought about Ashtyn last night and this morning. I believe she doesn’t feel well and is experiencing a great deal of nausea. Along with not feeling well physically, I don’t think she is feeling well emotionally. I can’t blame her. She has been through a lot and has every reason to feel this way. I wouldn’t like to be sick to my stomach for as long as she has, and I haven’t been through all the other things she has gone through. Physical and emotional wellness is connected. Emotional wellness will help her recover physically.” I responded, “You and I woke up on the same wavelength this morning. I totally agree.” Team effort is now being implemented to try and help her feel both physically and emotionally well.

Ashtyn has received many words of encouragement in the last several months such as, “keep fighting” and “don’t give up.” Up until this week, she didn’t understand what those phrases meant. Because she never has had a large group of people rally around her, she didn’t fully understand the concept of having others cheer for her with such amazing support. Her thoughts previously went along the lines of, “Keep fighting? Don’t give up? It’s either fight or die. Of course I won’t give up cause I don’t want to die. How do I keep fighting anyway? I just do what I have to do and what the doctors tell me to do.” After this week, she now interprets those phrases differently and understands on a deeper level why people are on the sidelines cheering for her. She understands more fully the rejuvenating strength that comes from having family, friends, neighbors, and strangers rallying around her.

She started understanding after I pointed out to her, “Ashtyn, you aren’t fighting anymore. You need to keep fighting. It seems like you are giving up. Don’t lose yourself by just laying in bed and letting each day pass. As all your supporters say, keep fighting. Remember what Shelby wrote:
‘I hope you look at the scars you may have- not just physically- and feel proud for all you have survived- endured- and overcome. You can do this!! You are Amazing Ashtyn!!’
And Jocine, ‘Ashtyn, you are so strong! Your army is praying for you & you CAN do this!’
And Tonia, ‘Hang in there sweetie!’
And Lori, ‘I look up to you, for all you have gone through, and your fighting spirit you have!!’
And Holly, ‘Stay strong!! You can beat this you are a tough tough girl!’
And Briana, ‘Just remember, you are not alone! You CAN do this.’
And Dawn, ‘Ashtyn you are so strong, you will fight this and win!’
And Laura, ‘Keep going. You are a warrior.’
And Betsy, ‘NEVER give up Ashtyn!!’
And Billie, ‘Hang in there. We’re all here with you!! You have so many people fighting with you! You’re an amazing girl!’
And JoAnn: ‘Love your courageous strong spirit!’
And Jared, ‘You’re not alone so you know we can get through this.’
And Alisa, ‘I am in awe of your perseverance and determination. I hope you realize all the incredible qualities you possess.’
And on and on and on…

“Ashtyn, do you now understand what it means to keep fighting?” She does.

It will take a little more time for her stomach virus to go away. It will also take some time for her to build back up her inner emotional strength that has been so valiantly and courageously used the past four months. With help from God and her Army, she will build back her strength within and fight on. Everyone uses emotional energy to get through trials. Along with that, everyone needs to emotionally refuel and rejuvenate allowing us to press forward. Thank you for helping Ashtyn replenish her fight within.

Roll With the Punches

In the post “Opposition Is Not a Bad Thing” I wrote, “In life and in cancer I have learned to ‘just go with it.’ I have to plan for the future and then roll with the punches as they come, adjust plans, adapt to the unexpected, embrace change, and face head on whatever life brings. It’s all good. Or eventually it will be.” In the more recent post, “On the door step” I wrote out the upcoming schedule leading to Ashtyn’s bone marrow transplant. With her unexpected gallbladder surgery the schedule has been changed. No biggie. We’ll just go with it.

NEW UPCOMING SCHEDULE:

Tuesday May 28th: With the idea that Ashtyn’s bone marrow will start producing white blood cells, she will have a bone marrow aspirate and biopsy, making sure there are still no detectable cancer cells. It is absolutely imperative that there is no evidence of cancer. We all have abnormal cells in our marrow, however Ashtyn needs less than .01% abnormal cells.

Friday May 31st: The results will be back.

Saturday June 1st: The Primary Children’s Hospital KSL yearly telethon will be held at the hospital from 7 p.m.- 10 p.m. If Ashtyn feels up to going, she will. Either way KSL will broadcast a story about Ashtyn. While playing the Phillip Phillips song “Home” (which Ashtyn picked) there will be a slideshow of photos of her shown and a couple minute recording of Ashtyn telling her story.

June 4th, 5th, 6th, and 7th: Ashtyn will go to the Huntsman Cancer Institute twice a day for a low dose of full body radiation, killing any remaining cancer cells as well as Ashtyn’s bone marrow.

June 8th and 9th: She will be given a high dose of chemotherapy in the hospital where she will remain for nearly two months. The chemo will aid in completely destroying Ashtyn’s bone marrow and immune system.

Tuesday June 11th: The bone marrow transplant will take place. Chandler’s stem cells will be infused into Ashtyn’s blood stream where they will then find their way to her bone marrow, and hopefully within 28 days engraft themselves by producing their own blood cells.

A bone marrow transplant is a very complex procedure that takes the body a year to fully recover. I will soon write a post dedicated to answering all the questions of what a bone marrow transplant is.

Currently Ashtyn is in the hospital recovering from her gallbladder surgery. Efforts are being made to get her to feel well enough to go home. Her surgical pain needs to get under control without using IV narcotics. We hope her stomach becomes less nauseated allowing her to handle the continuous nasogastric tube feeding without throwing up. Overall, we want her to feel relatively well. Currently she isn’t in a hurry to go home because she feels so crummy. This morning she said, “I don’t mind if I have to stay in the hospital until the bone marrow transplant.” That’s not the goal and hopefully she will feel well enough to go home soon. Her recovery is being prolonged due to the fact that she has close to no white blood cells to help in the healing process. From the last round of chemotherapy her blood counts have not recovered yet. It is suspected that her bone marrow should start producing cells in the next several days.

Today was post op day 3. My observation was that, instead of feeling better each day, she was feeling worse. Yesterday she was able to walk in the halls. Today any time she moved, nausea flooded over her. Walking to the restroom was enough to make her fight to not throw up so walking the halls was out of the question. There was one time that her willpower wasn’t enough. She panicked thinking she would throw up her NG tube. Luckily the NG tube stayed in her stomach as she threw up in a plastic blue bag. By 7:30 p.m. Ashtyn was the most miserable she had been all day. The surgical pain seemed out of control even with morphine and oxycodone. Even with the medication zofran, her stomach was failing at handling the food she so desperately needs. I wrote a quick Facebook message, “Ashtyn is having a very difficult time keeping food in her stomach. She feels so sick. The determination is strong in her eyes but she needs some prayers. We couldn’t do this without you. Thank you.”

Lab work was done to see if she had pancreatitis. Results came back showing her pancreas was fine. It was only a couple hours after I posted the Facebook message that I saw a difference in Ashtyn. Her pain was gone. She said, “I’m the most comfortable I’ve been all day.” Her stomach was calm. Since she was getting up to go to the restroom I asked if she would be willing to walk to the nurses desk and back. She complied. I walked behind her as she pushed her IV pole down the hall, past the nurses desk, down another hall, turned around, walked back the way she had come, past her room to another window, turned around, and walked back to her room. She worked up a sweat walking farther and faster than I would have ever encouraged. Once in bed she looked at Facebook and smiled at the 33 comments and 110 “likes” that accompanied the previous request for prayers. She knew those prayers were answered. At 10 p.m. she played Fish with her favorite tech and told the nurse that the infusion rate of her NG food could be increased because her stomach felt fine. Unbelievable, yet totally believable. Prayers are answered. Tender mercies are real.

Smiling at Facebook comments and likes

Playing cards with her favorite tech

Post Op

I would say for the two days following surgery, Ashtyn has felt lousy.  She is given Morphine and Oxycodone to help with her abdominal pain.  She  spends her day in bed moving as little as possible.  Of course it is the most painful when she has to walk.  Every three hours she gets out of bed and painfully walks slowly down the hall, wearing a thick mask, using her IV pole as a walker.  Once back in bed she quietly rests or sleeps with very little emotion.  She’s worn out.

Worn out

Not only does Ashtyn not have energy, she also doesn’t have an appetite.  She has struggled with eating enough calories for over a month.  It was finally apparent that it would be in her best interest to get a nasogastric tube.  An NG tube is placed into her nose, down her throat and esophagus, and into her stomach.  With liquid food and a pump, Ashtyn can be given 100% of the nutrients needed to build her body up for the stresses that are before her.  If she feels like eating, she can.  If she doesn’t feel up to eating, she doesn’t have to.  The food given through the tube can be increased or decreased, compensating for whatever she chooses to eat.  From now on she won’t have to stress about forcing herself to eat.  The bad part was, she had to get the tube placed.  That was one procedure she has always feared.  After some discussions and pep talk, the time had come to get it done.  She was given some medicine for anxiety but still laid in bed with fear.  I climbed in bed with her.  “Ashtyn, you can do this.  Ten seconds of bravery, that’s it.  You can do anything for ten seconds.”  The nurse then placed the tube in her nose and tried to advance it down the throat.  It didn’t take 10 seconds, it took a lot longer.  The tube wouldn’t advance down.  Another nurse was brought in to try.  With tears running down her face, she allowed the nurse to put the tube in her nose.  He quickly advanced it down her throat as he directed her to swallow.  She was brave and cooperative.  Her gag response kicked in.  Once the tube was in the stomach she threw up several times on her gown and all over the nurse’s hands and arms.  The nurse didn’t even flinch having his hands bathed in her throw up.  He washed his hands and announced that they were now “throw up friends.”  The nurses that care for Ashtyn are truly phenomenal people.  So caring.  So loving.  The NG tube will take a while for Ashtyn to get used to.  She doesn’t like how she can feel it move inside her nose and throat.  However she knows she will get used to it and it is a great comfort to both of us knowing that she’ll receive all her needed calories.

CT Scan

heart echo

Prior to the unexpected gallbladder surgery, this week’s schedule was full of outpatient hospital visits to prepare for the upcoming bone marrow transplant.  We decided to get what we could done while in the hospital so Ashtyn wouldn’t have to do as many day trips to the hospital when she is home.  She had an echocardiogram (cardiac echo)  and an electrocardiogram (EKG) to make sure the heart is functioning properly for the transplant.  She also got a CT scan of her chest, abdomen, and pelvis to rule out any abnormalities.  The CT scan required her to have about three cups of contrast (a special dye to help highlight the areas of the body being examined) in her stomach.  Three cups doesn’t sound like very much liquid, but for Ashtyn who hadn’t had anything in her stomach for six days, it was a lot to ask.  Luckily she already had her NG tube secured.  The nurse started to infuse the contrast into Ashtyn’s stomach at a rate of about one cup an hour.  A little over an hour later, when Ashtyn got up to use the restroom, nausea poured over her.  We did all we could to help calm her stomach so she wouldn’t throw up.  The rate at which the contrast was infusing was dropped.  The nurse gave her medicine to help with nausea.  Ashtyn and I laid in her bed without moving as I prayed and she concentrated, mind over matter.  Three hours later it was time for the CT scan.  She was wheeled downstairs, laid on the CT scanner bed, and quietly got through the procedure.

By 8:30 p.m. Ashtyn was back in bed with a promise that she could rest the remainder of the night.  It was a tough day.  Again Ashtyn amazed me with her bravery and endurance.  She knows there is no point in whining or complaining.  She must and is moving forward.