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.

Questions and Answers Part 2

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.

•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).

•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.

•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.

•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.

•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.

Questions and Answers Part 1

Questions people have asked me:

•Has there been a difference between Ashtyn's three BMTs? The conditioning chemotherapy and radiation the week before each transplant was different. All three donors and type of transplant were also different. 1st was a perfect sibling match donor. 2nd was a half match parent donor. 3rd was an unrelated umbilical cord donor. It’s also never known how a body will handle each BMT. It was different every time as far as how sick she got and how she physically felt.

•What will make this bone marrow transplant successful when the last two weren't? How is this process so different? Her first transplant was mostly relying on intense chemo and radiation, given a week before transplant, to kill hidden leukemia and the perfect sibling match donor would provide a new cancer free marrow. Unfortunately the leukemia wasn’t destroyed and the transplant cells didn’t recognize and kill her lingering leukemia cells. Her second transplant used mild chemo and radiation before the transplant thinking that the half match donor cells from her dad would kill the remaining leukemia, which it didn’t. The current transplant provided moderate chemotherapy and some radiation before transplant to kill hidden leukemia and it provided an unrelated umbilical cord donor that should provide more ability for the new cells to kill remaining leukemia cells because the news cells are not related to the leukemia cells.

•What sort of treatment plan is expected now? There is an amazing cutting edge approach that is being discussed for Ashtyn. Venetoclax, which was shown to kill her leukemia, will be used for possibly several years with the thought that it will keep leukemia at bay while her immune system becomes strong enough to fight any lingering leukemia cells. If needed doctors could also promote enough, but not too much, graft verses host disease trying to encourage graft verses leukemia that would hopefully kill leukemia that may become present.

•What would have happened treatment-wise had the BMT failed? A functioning marrow that produces blood cells is required to live so she would have had to receive a 4th bone marrow transplant. I don’t know if I would have been the half match donor or if another umbilical cord donor would have been used. I’m so grateful we didn’t have to go down that path.

•During a BMT, why can’t blood be transfused that has white blood cells in it to minimize the effects of no immune system? Different white blood cells from different immune systems would fight each other. A body can only have one type of white blood cell that is produced by one marrow. Ashtyn’s old immune system was destroyed by conditioning chemo and radiation prior to the transplant. The body had to be without an immune system while the new marrow started producing cells.

•What are her virus levels now? The adenovirus level peaked at 2,100,000 a week ago. Four days ago the level was 1,500,000. Today results came back at 600,000. We are very happy the virus is getting under control.

•Any more chemo? No. But Venetoclax will be started as an innovative idea to keep any hidden leukemia at bay until she has a strong immune system.

•What made you want to start a Facebook page for the purpose of supporting Ashtyn? I felt from the beginning that prayers from many would greatly influence Ashtyn’s health and outcome. The Facebook page informs others of what prayers are needed and how to cheer her on.

•What are the greatest needs you find you have for your family during the times when you and Ashtyn are in Seattle for extended periods of time? Attention to my other kids, helping them feel loved and supported. Reaching out with activities to do, friends to hang out with, dropping off treats, and just asking them how they are.

•What are ways your family back home copes while you're gone? Attitude and positivity. “We can do hard things.” “Don’t let this change you into someone you’re not. Be the best you.” “This won’t last forever.”

•How has Ashtyn managed school these last 5 years? 1/2 of 6th grade was missed. 7th grade she did online home schooling. 8th grade she attended middle school. 9th grade she enjoyed the entire year getting a 3.9 GPA. She currently does school packets to make up 10th grade, one trimester of 11th grade, and her entire senior year.

•What are her future plans for school? She’s going to go to college to be a pediatric oncology nurse.

•It seems like Ashtyn and Ethan have a special bond. Has it always been like that or do they bond over a common like? Ashtyn has always loved babies. She was 6 years old when Ethan was born and was a tender, sweet mini mom to him from the beginning.

•Where is the first place that Ashtyn would like to travel to for a humanitarian mission? Tanzania

•Have you tried cell based gene immunotherapy? No. Her type of leukemia and cell mutations would not respond to that treatment.

•When Ashtyn has no immune system and is allowed outside visitors, wouldn’t she be in danger or at risk of catching an illness? As long as visitors are healthy and everyone washes their hands, the risk of getting sick from visitors is low. The danger and risk of getting sick comes primarily from the viruses and bacteria that are already naturally in her body.

•In Ashtyn’s point of view, what has been the biggest challenge for her? Being far away from home, being patient with getting into remission and engraftment, and feeling really sick.

•What is Ashtyn’s favorite movie? Romantic Comedies and anything Disney.

•When does she come home? Hoping for around November 14th.

•When does she go back to school? She is not suppose to go back to school for one year. She’ll do school packets to make up for all the school she’s missed, including senior year, and graduate with her Class of 2019. She does plan on attending Seminary and Student Government when she returns home.

•Who was the donor? An unknown umbilical cord donor. In one year the donor can let us know who he is if he wants.

•Is she having a lot of pain? Not currently.

•When does her hair grow back? I’m guessing we’ll start seeing some hair growth in November.

•Are her kidneys okay? She definitely has some acute kidney injury that requires her to receive a lot of potassium in her IV fluids. However, they are hanging in there keeping up.

•What type of cancer does she have? Acute undifferentiated leukemia

•What do you do for self care? Shower and eat. I want Ashtyn to know that we are in this together. I want to be on her level and understand as much as possible what she’s going through. She is not allowed to leave the hospital so I rarely leave. All her interests are on hold so mine are too.

•As a mother how have you kept yourself motivated and strong? From the beginning I had to hand over Ashtyn to God trusting that He would take care of her. She was not mine to keep and I had to trust His purpose for her. I not only trusted but expected Him to ease mine and Ashtyn’s burdens when they became too much to bare. Faith and trust in God gave me strength I would have never had otherwise. Complaining is never present and optimistic positive thoughts are a must. It’s important to feel and process pain, fear, anger, disappointment, and whatever other feelings that come, but I don’t soak in the negativity too long. It’s a recurring process of working hard doing my part, at the same time letting go and handing over to God what I don’t have control over. I’ve had to hand over situations to Him with trust over and over again, while keeping my thoughts positive, noticing all the blessings and good that surrounds us.

•What are her chances of surviving?
Medical data: <1%. She should have never survived.
Mom data: 100%. Get ready for our girl to go to college, travel the world, do humanitarian trips, be a pediatric oncology nurse, get married, have kids; never once letting cancer get in her way but rather having it pave the way for good.

Engraftment Day

BMT Day 49. It is medically official. Ashtyn engrafted today with an absolute neutrophil count of 1020. She did it!!! In 6 1/2 months she got into remission with 0.00% evidence of leukemia for the 3rd time, survived her 3rd bone marrow transplant, and engrafted where the transplanted stem cells found their way to her bone marrow spaces and have started making cells. I am amazed and I am grateful. Now what? A long, involved recovery. The miraculous journey continues as she will face one struggle, one goal, and one feat at a time just like she always has. Currently the struggle is extreme nausea. The goal is to eat needed calories, drink required fluids, and swallow all necessary medications in order to graduate from IV nutrition, IV fluids, and IV medication. As of right now nausea is preventing her from eating and drinking much. It will take time but she’ll get there.

My brother Jason and two sisters Wendy and Alisa flew to Seattle to visit me and Ashtyn over the weekend. We loved having them here. I really enjoy having family and friends sightsee around Seattle, a city I have a tender place in my heart for, and then spend time with us at Seattle Children’s Hospital being around our remarkable fighter and the staff I love. Thank you to everyone for getting us to this point. Please pray for a safe recovery and that Ash will leave the hospital at the right time.