Interview

My friends daughter interviewed Ashtyn for a paper she had to write. I thought I’d share:

Questions for Ashtyn:
1. What type of cancer do you have?
Acute undifferentiated leukemia (AUL)

2. When were you first diagnosed?
January 30, 2013. Then October 9th 2016. And February 14th 2018.

3. What stage were you diagnosed with?
Leukemia does not have stages. You either have leukemia or you don’t. However AUL is the most rare form of leukemia and less than 1% of leukemia patients have it.

4. What was your first reaction when you were told that you had cancer? When I was 12 years old I freaked out and was so scared. I couldn’t even handle the word cancer. For two weeks, as I wrapped my brain around it, I didn’t want anyone in my hospital room talking medical talk or using the “c” word. When I relapsed in February I was scared, in denial, and disappointed. I knew the routine and the basic process but each cancer fight is different so you never know what to expect.

5. How many times have you relapsed?
Three times fighting. Two relapses.

6. What is your treatment process like? My treatment process includes high doses of chemotherapy to get rid of leukemia as soon as possible. Once I’m in remission, the next step in the treatment process is to receive a bone marrow transplant because of how high risk my cancer is. A BMT provides the best chance for me to stay in remission. It takes my body at least one year to recover from a BMT.

7. How do you find the strength to go through the treatments?
One: I try to look forward to what life will be like when I’m finished. Two: I have so many people around me who encourage me and believe I can do it. Because people believe in me, I am able to believe more in myself. This helps me try my best. Three: I’m not alone because God helps me and is there through it all.

8. Do you live your life differently than you did before you were diagnosed?
Yes. When you are isolated from the world for so long and restricted from things you want to do, I’ve learned what’s important and what’s not. When I get back to the real world, it sticks and I find myself not worrying about things I would have worried about had I not gotten sick. I’ve learn to appreciate life more and savor the little things instead of waiting for big occasions. I’ve learned to treat everyday like it’s a special occasion.

9. What’s the best part of spending time in the hospital? One: Talking with the nurses and doctors. Two: Knowing if something goes wrong, I’m in the safest place. Three: Being able to spend so much time with my mom. She knows me more than my doctors. It’s nice to have someone who understands and has my back. She’s seen it all in the past five years so she knows better than anyone what’s best for me and can advocate for me.

What’s the worst? Knowing there’s nowhere I can go. I’m trapped until they discharge me. Also, being far away from and not seeing family or friends.

10. What message would you like to provide for others? To be patient no matter how long or hard the road seems. Things will get better and then you’ll be able to look back and see your growth.

11. What do you like to do in your free time? In the hospital there’s a lot less free time than one might think. Doctors and therapist and nurses and techs and many others come into my room everyday and keep me busy. If I do have a few hours to myself, I take advantage and sleep before the next person comes in.

12. What do you hope for the future?
I hope that my cancer never comes back and that I can live the normal life I’ve always wanted. I hope to go to college and become a pediatric cancer nurse. I hope to travel the world on humanitarian missions. I want to get married, have kids, and enjoy a healthy life.

Questions for Ashtyn’s mother:

1. What was your first reaction when you were told that Ashtyn had cancer?
I felt that it was in God’s hands. I felt to ask people to pray for her, do my part by standing by her through it all, and then trust God that He would take care of her.

2. How has this affected you and your children? We are much more simple and calm. We appreciate the very small things and don’t worry about things that don’t matter. We have always been very united and close but we each are individually stronger and more capable of handling hard things.

3. Have different things become important to you since your child has been ill? What’s important to me is the same: God, family, and impacting others for good. What is different is that everything else isn’t important anymore.

4. How did you find the strength to get through this? Faith, hope, and trusting God has given me strength I would have never had otherwise. Also, being optimistic and looking at the positive side of everything is crucial. There’s never a bad day, just bad moments. Complaining and negativity is never helpful. It’s important to feel and process pain, fear, anger, disappointment, and whatever other feelings that come. Without soaking too long in the negative, there’s a time to let go of negative thoughts and focus on noticing all the good because blessings and happy things are always present.

5. How have your values changed?
My values are the same. I’ve learned so much through the cancer fight that I hope I’m a least a little better at living those values.

Breakthroughs

There have been some breakthroughs in the last two days. 1. Her bone marrow aspirate came back showing 0.00% leukemia! That’s the purpose of a BMT and we’ll celebrate it every time! 2. Even with Adenovirus, and after two months, she is no longer strictly isolated to her room. She can be wheel-chaired off the unit, go to the outside patio, and walk the halls when ready! 3. She was accepted into the SPRINT program: Short-term Pediatric Rehab Intensive Therapy where rehab doctors partner up with BMT doctors and utilize physical and occupational therapy to help Ashtyn improve her abilities to walk, move, and get dressed. Over two months ago Ash walked, without help, into the hospital, showered and used the restroom on her own, and was completely independent. Within one week she couldn’t walk and by week two (August 10th) she was as dependent as a baby. She is now working on gaining it all back. At this point she can only walk a few steps with a walker with someone by her side in case she falls, and becomes out of breath getting in and out of bed to use the commode. We’re bringing independence back! 4. Ashtyn has had a blank expression on her face for awhile, hasn’t verbalized ideas, feelings or opinions, and doesn’t get on her phone to socialize. In connection, her physical therapy progress has declined. Surrounded by love and support from nurses and a nurses aid, Ashtyn opened up tonight about some of the things she’s been thinking and feeling. I’ve always gone in-depth explaining the medical implications of fighting cancer and getting a BMT. It’s important to talk about the psychological effects as well. This is a topic I will definitely go into in the near future. Until then, Ashtyn is going to start seeing a psychiatrist who specializes in pediatric oncology!

You would not believe how much love and care surrounds this girls and for that I am grateful. Tonight I asked Ashtyn what she’s grateful for: 1. Nurses 2. this hospital 3. my siblings. 4. Marlie (dog) 5. modern technology.

Physical Therapist Madeline 

Nurse Ashley
And outside.

Nurse Jen

CNS Teresa

Doctor Adam Lamble

Nurse Bri

Doctor Faucette

Nurse Anna

Doctor Babcock

BMT Day 57

Ok everyone! A lot of prayers are needed to get us home!!! From the moment we arrived in Seattle on March 5th, the cancer fight has been a battle from the get-go with the current recovery stage being a beast of its own. Ashtyn has been in a hospital room for 65 days straight. Her body is recovering, deconditioned, exhausted, and has very little endurance. We finally see the finish line of going home but her body and mind have nearly run out of fumes. There are still things that need to happen for her to be safe to go home. I believe prayers can bless her and give her the boost to get there. Please pray: 1. That her bone marrow aspirate obtained yesterday will come back with zero leukemia. 2. She needs energy energy energy! It’s so difficult to do physical and occupational therapy when her body is exhausted to the core but it’s difficult to recover and gain independence without doing physical activities. 3. Adenovirus will not be detected in her blood ASAP. It’s currently at 94,000 which is a great improvement from 2,400,000 but the sooner adenovirus and Cidofovir (anti-viral medication) is out of her system the better. 4. Her gut will heal allowing her body to absorb water and medications properly. Also that nausea will decrease so she can eat more. 5. Her kidneys will heal. They are still showing signs of injury. 6. Graft verses host disease will continue to not be an issue. GVHD can cause all sorts of problems that would prevent her from going home on time.

***All six of these prayers are extremely important and very much needed. I’m grateful to have you all by Ashtyn’s side. Thank you. ***

My Kids Are My Heroes

I loved spending the weekend with my three youngest in Seattle and am always missing my oldest who’s in Florida. Ashtyn looks way better than she feels but eats even though she has no appetite and exercises even though her body just wants to sleep. Ethan quietly cried when he left to the airport for home leaving me and Ashtyn. He misses us but is staying strong. Morgan can’t wait for November but that hasn’t stopped her from being productive doing good things. Chandler is far from home in a season of life where he focuses each day entirely on others. 

It's Not Easy And That's OK

Anything of value and meaning is not going to be easy. Embrace the hard and get it done.

BYU Football Visits

BYU football is playing a big game tonight 1.2 miles away from the hospital verses Washington. They didn’t hesitate visiting Ashtyn and cheering her on as she always cheers for them. On a couple occasions we’ve met the team, and sports fan or not, these men have hearts of gold. We appreciated them bringing their loving vibe into Ashtyn’s room this morning.

Brighton Alumni

BMT Day 53

BMT Day 53: I’ve learned that patients are always in the hospital for reasons that cannot be managed at home. Ashtyn will be discharged the very moment she is safe to do so. Even then she’ll have to go to Seattle Cancer Care Alliance 2 to 3 times per week to have labs drawn and be seen by the BMT team until Day 100 when she’ll hopefully be cleared to go home to be followed by the BMT team at Primary Children’s. At this point though a lot still needs to happen before she can leave the hospital and small progress is being made everyday. What’s keeping her in the hospital? 1. Her IV nutrition has a lot of potassium in it to keep her levels from dropping too low. Because of the high potassium needs and the danger abnormal potassium can have on heart rhythms, she has to be on a heart monitor and get potassium levels drawn every two to four hours. Her unusually high need for potassium is probably because Cidofovir, the antiviral that’s fighting Adenovirus, causes potassium wasting, though acute kidney injury may also be adding to the problem. 2. Her stomach needs to heal enabling it to handle more nutrition as well as oral potassium. Ashtyn just started taking Marinol to increase her appetite. Though not hungry, she is currently able to eat one small meal a day. For almost two months TPN (IV nutrition) provided 100% of her nutritional needs. Because she’s working on eating and drinking, TPN now provides 2/3 of her nutrition. 3. When a marrow engrafts, it first starts producing white blood cells, then red blood cells, and then eventually it will start producing platelets. While we wait for her body to make platelets, which are blood cells that help form clots, she is currently requiring daily transfusions. Looking at her legs, arms, and stomach, there’s more petechiae and bruising than I’ve ever seen on her. She had a nosebleed a couple nights ago that was a beast to get to stop. Blood was sent to a lab yesterday to determine if her body has made antibodies that are destroying the transfused platelets. Result will come back today. 4. Increasing her strength and mobility is also a priority to promote more safety when leaving the hospital. Please pray for 1. Decreased potassium wasting. 2. Absence of Adenovirus. 3. Platelet transfusions won’t be needed as often and platelet engraftment will occur.