BMT Day 98

Today is BMT Day 98, 105 days straight in the hospital, and over 8 months in Seattle away from home. I’m grateful for where we are in this journey. I’m grateful for Ashtyn’s brain, which is sharp and clear. I’m grateful for her eyes and ears that work perfectly. I’m grateful for her heart, though it has a mild rhythm disorder, it functions as it should. I’m grateful for her lungs, still in the process of healing, but no longer needs oxygen even at night. I’m grateful for her liver that took a dangerous hit in 2016 during a time of decompensated septic shock, but regardless tolerated this 3rd transplant without a problem. I’m grateful for her kidneys that still have a ways to go to fully recover. They aren’t functioning at 100% but I’m grateful Ashtyn didn’t, and continues to not need dialysis. I’m grateful for her stomach and bowels, which aren’t absorbing water and functioning as well as we’d like but they could be so much worse. She is able to take over 50 pills everyday, eat all necessary calories, and drink all required fluids with minimal nausea. There’s also only mild, if any, graft verses host disease in her gut. I’m grateful for her bone marrow that is far from being robust, still needing frequent help from blood and platelet transfusions, and has a good year before it provides a strong immune system, but it’s cancer free which makes it perfect in my eyes. I’m grateful for God and for so many people who made this all possible. I don’t know exactly when we’ll get out of the hospital and exactly when we’ll get to go home. Those unknowns are out of my control. I have found it beneficial to let go of what I don’t have control over and be grateful for what’s placed before me. We are definitely not miserable, feel a lot of happiness, and will continue enjoying the people we have come to love until we join those we love at home.

RN Jen

RN Katie

RN Courtney

RN Bri

CNA Sam

CNA Megan

Metabolic Acidosis

The medical field amazes me with how much is understood despite how complicated and intricate the body is. For the last several days something called metabolic acidosis has been addressed and is being tackled. Our bodies ideally maintain an acid-base balance and the kidneys play a major role in regulating it. Because Ashtyn’s kidneys are damaged from all the chemotherapy and countless medications, they are not maintaining enough bicarbonate, which is the most important chemical to maintain acid-base balance. Without IV acetate (which converts to bicarbonate in the body) her bicarbonate level dropped to 9 with a low, acidic pH of 7.10. Normal levels are 23 and 7.35. Having metabolic acidosis made her feel awful from head to toe a couple days ago. She stayed in bed all day with zero appetite, zero energy, and a headache. Once the team knew how low her pH could go before becoming symptomatic, acetate was added back into her IV fluid, bringing her levels up to where she felt good again. The information enabled the team to know how much acetate to give Ashtyn so she’ll feel good and at the same time keeping the level low enough to remind the kidneys to work.

At this point it cannot be predicted whether or not her kidneys will fully recover or not. In the meantime, she’ll receive IV fluids with sodium acetate, magnesium, and phosphorus for twelve hours each night, even at home. In addition, she takes oral potassium and bicarbonate. Her stomach needs to heal further to be able to tolerate oral magnesium and the high level of bicarbonate she needs in order to get off IV electrolyte fluids all together. I suspect Ashtyn will get out of the hospital by Thursday. We will then stay at the Ronald McDonald Apartments, which is different from the Ronald McDonald House. The apartments are for BMT patients, isolating them from germs and anyone who could be sick. The day after leaving the hospital we will meet with the outpatient BMT team at Seattle Cancer Care Alliance to talk about the possibility of getting her home before Thanksgiving. A few things to pray for: 1. That the Adenovirus will stay under control. The level recently jumped from 1700 to 8500. 2. That she’ll need platelet transfusions only 1 to 2 days a week instead of the current 3 to 4 days a week. 3. Her stomach, bowels, and kidneys will heal.

Nurse Practictioner Stephanie

Physician Assistant Deanna 

Physical Therapy 

Out Of Isolation And No More IV Fluids During The Day

Yesterday, for the first time in over 3 months, Ashtyn was allowed to bust out of her hospital room and roam the halls of the cancer unit. Up to this point she had been on “contact precautions” because of Adenovirus, which meant she was isolated to her room. A few weeks ago, she was allowed to be wheelchaired off the unit to walk the halls with physical therapy but now she gets to leave her room and freely walk, or ride, around the cancer unit halls whenever she wants. It’s also awesome that those who go into her room won’t have to wear yellow gowns and gloves anymore! 

Another exciting thing that happened yesterday is that she’s off IV electrolyte fluids from 9:00 a.m. until 9:00 p.m.. On Tuesday, the 24 hour IV acetate was decreased by over 1/2. On Wednesday the acetate was entirely taken out of the IV fluid leaving only potassium, phosphorus, and magnesium to be given over 12 hours at night. For the first time in over 3 months, Ashtyn is not hooked up to an IV pole during the day and her kidneys are handling it pretty well. The team is fine-tuning the amount of oral and IV electrolytes that will be needed outpatient while her kidneys fully recover.

Riding bikes with her BMT nurse practitioner Stephanie and BMT physician assistant Deanna.

Grateful To Be A "Calm" Patient

Ashtyn is currently one of the “calm” patients on the cancer unit and has totally earned that title. In August we probably could have nominated her as being one of the more complicated, busiest, most medication heavy patient ever requiring a 1:1 nurse + 1:1 nurses aide + a 1:1 mom for several weeks. She has come far. As we inch our way closer to getting out of the hospital, the complications keeping her here are gradually diminishing. Currently it’s almost entirely her kidneys we are waiting on. Whether her kidney function has decreased and/or there’s tubular kidney injury, her kidneys are not balancing electrolytes properly causing her to have metabolic acidosis. Daily she gets IV fluids that provide a moderate amount of electrolytes, namely bicarbonate. After consulting with nephrology yesterday, the BMT team is going to make a bold (and nerve wracking) move today and decrease the IV electrolytes drastically. Frequent blood labs will be checked to prevent values from going too low and to determine how much IV plus oral electrolytes are needed to keep her body balanced. Before being able to leave the hospital, her electrolytes need to be stable with manageable oral supplements, and IV fluids if necessary, to help balance her body until the kidneys recover. We already received a kidney miracle when she didn’t require dialysis in August. Please pray for another kidney miracle that they will recover and will need minimal, if any, IV supplement. 

In August Ashtyn was so delirious she hit nurse Kyla. 

We all laughed later when we told Ashtyn what she had done. 

They still love each other 

Talking electrolyte balance with these 

two brilliant pharmacists on Halloween.

Babysteps All The Way Home

What a toddler feels like.

For Thy Good

Thursday night was miserable. Ashtyn had been getting up to the bathroom every 1 1/2 hours since that afternoon and by 4:00 a.m. she was in tears with exhaustion. I said an out loud prayer with Ash asking for her intestines to start doing their job. It didn’t immediately help. Throughout the night we both had a continual prayer in our heart for healing to only have her cry in despair having to get out of bed again. At the moment it was easy to feel unloved by God, question His kindness, and be disappointed in unanswered prayers. We had no choice but to push through the night. By noon she was still struggling, drank a small protein drink for breakfast, immediately vomited 900 ml, and hasn’t had intestinal problems since. I have no answers yet why her intestines were acting up but we are grateful it’s now been 12 hours of feeling better. I also don’t know why we have to go through the things we go through. I always talk to the healthcare team about why Ashtyn’s body does the things it does. When she’s medically being stretched, tests are done to find out the whys and what needs to be done to fix it. I rarely ask God why we have to go through the things we do. When our spirits are stretched, the only thing that fixes a hardened heart is trust that “all these things shall give thee experience, and shall be for thy good.” I know this is true. Friday night has been much better than Thursday night. Ashtyn ate dinner, relaxed while texting people, and watched Disney movies. Please pray for no graft verses host disease in her gut. Please pray that her kidneys will make a huge turn around this weekend so that her blood bicarbonate level will increase.

Cancer Impacts Siblings Too

During the months and years of fighting cancer, the life of each of my kids has been greatly affected. Through it all, I have never felt a negative vibe from any of them. I find it interesting that the feelings of positivity and gratitude are always there even during moments of stress, sadness, and disappointment. When unpleasant emotions come, I’m grateful they don’t linger too long before fading away where peace is felt again. 

Yesterday Ashtyn bawled several times throughout the day. “I don’t think anyone wants to go home as badly as I want to.” In the afternoon I got a text from Ethan. “I miss you.” “I’m at the point where I’m done with this.” Ashtyn cried again, “I feel so bad for Ethan. I’ve never had to live without you and he does. Sometimes I think you need to go home.” In the evening Morgan texted me, “how was your day? i wanted to let you know i didn’t go to 1st and 2nd today. i’m trying to find something to tell myself in the morning to help me get up. it’s hard to explain but i get this “morning depression” in a way. and it makes it really hard for me to get out of bed. i need to find a better reason to get up in the morning other than just school cause it doesn’t work very well. anyways just letting you know. what did you do today?” Chandler is in Florida sacrificing all that he has to serve others with the belief, “I know that the most I can do for her and my family is to be out here, serving others and serving God.” 

Before going to bed, Ashtyn and I listened to a talk by Elder Jeffery Holland called, “Lord, I believe.”: He quoted from Mark 9:22-23 “but if thou canst do anything, have compassion on us, and help us. Jesus said unto him, If thou canst believe, all things are possible to him that believeth.” We will keep believing.