Update: Now that her marrow is producing white blood cells, she is on the baby-step, slow recovery road to home of which I’m so grateful to be on. She uses a walker several time’s a day to walk from her bed to the restroom and back. For three days in a row she has eaten! 1/2 grilled cheese sandwich, 1/2 peanut butter and jelly sandwich, and 1/2 cheese quesadilla respectively. She’s not the busiest patient on the floor and I’m grateful for the calm. Everything seems to be moving in the right direction though she is requiring more platelet transfusions than would be expected. Please pray that her body will start producing platelets and that it will stop destroying the transfused platelets so quickly.
Questions/Answers:
•What side effects/complications has Ashtyn had because of all the chemotherapy?
In the span of 5 years I can’t remember them all but include mucositis, mouth sores, oxygen needs, nerve pain, burning eye pain, bone pain, muscle pain, surgery pain, typhlitis, nausea, vomiting, diarrhea, loss of appetite, weight loss, weight gain, taste bud changes, fevers, skin rash and peeling, hair loss, fatigue, headaches, a heart rhythm disorder called prolonged QT interval, muscle weakness, decreased muscle endurance, poor blood circulation, very low red blood cell counts, very low platelet counts, neutropenia, nose bleeds, bruising, low blood pressures, high blood pressures, bacteria sepsis, viral sepsis, incontinence, central line skin infections, delirium and confusion, sleep apnea, electrolyte imbalances, kidney injury, liver problems, lung problems, breathing tube, gall bladder removal because of gall stones, graft-versus-host disease, and ovarian failure.
In the span of 5 years I can’t remember them all but include mucositis, mouth sores, oxygen needs, nerve pain, burning eye pain, bone pain, muscle pain, surgery pain, typhlitis, nausea, vomiting, diarrhea, loss of appetite, weight loss, weight gain, taste bud changes, fevers, skin rash and peeling, hair loss, fatigue, headaches, a heart rhythm disorder called prolonged QT interval, muscle weakness, decreased muscle endurance, poor blood circulation, very low red blood cell counts, very low platelet counts, neutropenia, nose bleeds, bruising, low blood pressures, high blood pressures, bacteria sepsis, viral sepsis, incontinence, central line skin infections, delirium and confusion, sleep apnea, electrolyte imbalances, kidney injury, liver problems, lung problems, breathing tube, gall bladder removal because of gall stones, graft-versus-host disease, and ovarian failure.
•How much does nutrition play in healing and staying cancer free?
Nutrition plays a huge role in the healing process. A dietitian follows Ashtyn’s nutrition daily. Though nutrition can play a role in increasing the risk for other types of adult cancer, nutrition does not play a part in causing or preventing leukemia (abnormal white blood cells).
Nutrition plays a huge role in the healing process. A dietitian follows Ashtyn’s nutrition daily. Though nutrition can play a role in increasing the risk for other types of adult cancer, nutrition does not play a part in causing or preventing leukemia (abnormal white blood cells).
•What’s next for Ashtyn? Will she soon go back to her “normal” life or will recovery continue well into the next few years? Recovery will be ongoing throughout the next several years at the same time “normal” will gradually be incorporated back into her life. Throughout at least a year span, her physical body and immune system will gradually get stronger and stronger which will allow her to over time be more and more active and more capable of being in crowded areas.
•What is some advice you might give to someone considering a career in pediatric/cancer nursing?
If you are willing to work super hard to save a life while playing hard just to see a smile, celebrate joyful occasions and cry during sorrowful times, spend the day focused on being thoughtful to the needs of others where your own need to even eat is often placed on the back burner, and you want to impact and uplift multiple lives in multiple ways every single day then pediatric oncology might be your gig.
If you are willing to work super hard to save a life while playing hard just to see a smile, celebrate joyful occasions and cry during sorrowful times, spend the day focused on being thoughtful to the needs of others where your own need to even eat is often placed on the back burner, and you want to impact and uplift multiple lives in multiple ways every single day then pediatric oncology might be your gig.
•Ashtyn’s favorite food: curry. Favorite dessert: shave ice. Favorite activity: traveling with family. Favorite music: Coldplay, pop, country, spiritual. Where would she like to travel to? Tanzania, Thailand, Paris, Greece, Zimbabwe, Seychelles Island.
•Has each BMT felt different or have they all felt similar?
Each BMT was a new unpredictable experience that is all-consuming. Each are very difficult in their own way and each felt different to Ashtyn.
Each BMT was a new unpredictable experience that is all-consuming. Each are very difficult in their own way and each felt different to Ashtyn.
•Can you remind me of what Venetoclax is? Venetoclax is a target therapy chemo drug. Ashtyn’s leukemia cells contain a higher than normal level of a certain protein that Venetoclax binds to, causing the cells to die. Researchers are continually trying to identify additional cancers that could be affected by Venetoclax. Currently it is a trial study drug for hard to treat pediatric leukemia and is FDA approved for adult chronic lymphocytic leukemia. Ashtyn didn’t experience any side effects from the drug in the past except for possible bone marrow suppression that could lower the levels of white blood cells, red blood cells, and platelets in her body.
•Can she still have kids?
Chemotherapy and radiation caused ovarian failure which means her ovaries don’t produce normal amounts of estrogen or release eggs. Quite likely it also killed her ovarian eggs all together. Her uterus was not harmed. She was 12 years old when she first received chemotherapy and radiation. Consequently she has never had a period and takes estrogen to help progress through puberty. After her first fight with cancer, Ashtyn began seeing Dr. Erica Johnstone at the University of Utah who specializes in reproductive endocrinology and infertility. She will continue seeing Dr. Johnstone throughout her life for hormone replacement and infertility issues. It is well known that Ashtyn loves babies and is excited to be a mom one day. Whether her babies come from in vitro fertilization, other remarkable medical means, and/or adoption we have no doubt Ashtyn will be a mom.
Chemotherapy and radiation caused ovarian failure which means her ovaries don’t produce normal amounts of estrogen or release eggs. Quite likely it also killed her ovarian eggs all together. Her uterus was not harmed. She was 12 years old when she first received chemotherapy and radiation. Consequently she has never had a period and takes estrogen to help progress through puberty. After her first fight with cancer, Ashtyn began seeing Dr. Erica Johnstone at the University of Utah who specializes in reproductive endocrinology and infertility. She will continue seeing Dr. Johnstone throughout her life for hormone replacement and infertility issues. It is well known that Ashtyn loves babies and is excited to be a mom one day. Whether her babies come from in vitro fertilization, other remarkable medical means, and/or adoption we have no doubt Ashtyn will be a mom.
•What were some of the surprising ways you and Ashtyn strengthened each other?
Ashtyn: “My mom has strengthened me by telling me things will be ok. She doesn’t leave me and stays by my side the entire time. She encourages me and will do anything to make me feel safe and comfortable.”
Me (mom): “We see eye to eye on everything and she trusts me. No words need to be spoken to know Ashtyn’s needs, how she’s feeling, and what her wants are. She strengthens me because we believe in and fight for the same things.
Ashtyn: “My mom has strengthened me by telling me things will be ok. She doesn’t leave me and stays by my side the entire time. She encourages me and will do anything to make me feel safe and comfortable.”
Me (mom): “We see eye to eye on everything and she trusts me. No words need to be spoken to know Ashtyn’s needs, how she’s feeling, and what her wants are. She strengthens me because we believe in and fight for the same things.
