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.