While With Dad

The day before I left to fly home I talked to a charge nurse wondering what nurses were working over the weekend. While gone I knew Ashtyn would need help going to the restroom and showering. Not being as independent as she’d like, obviously it would be more comfortable receiving help from nurses she knew. The charge nurse wrote down the nurses we wanted and then said, “Ashtyn has been in an assignment where her nurse has three patients. While you are out of town we are going to have her in an assignment where the nurse only has two patients. We want Ashtyn to get the attention she needs and we know what you do.” Isn’t Seattle Children’s Hospital so good to us? I was extremely touched and grateful for her thoughtfulness. Ash also had her dad with her the entire time. While home I got a few texts from Jason including, “Tons of sleep. Physical and occupational therapy Friday. Walked about 25 yards. 2100 cals Friday. Saturday did her makeup, ate 1300 cals including a Jamba Juice. Went outside for a wheelchair around the hospital grounds.” “Ate part of a hash brown and sausage biscuit from McDonald’s. She is really doing good today. Nausea seems better. Talkative. Laughing at tv shows.” “Went outside again. Walked 50 yards. She is a ton more steady on her feet than she was when I got here. Used commode only once during the day, walking to the bathroom the rest of the times. Watched a bunch of Friends and Office.” “She is struggling more with nausea today.” “She also orders me around step by step to get things for her and do things for her. Put blankets on her feet or put them away on shelves. Clean up her end table, put her makeup away, pour drinks, keep fridge stocked, etc. I love doing it!” “What I could never guess on or understand is how you are not in the hospital with back surgery from the bed you have been on all year.” “I have no idea how you do this all day every day. Stressing about every little thing. How have u avoided the looney bin?” Ashtyn loves her dad. I appreciate him coming up to be with her. On the plane I texted Ash, “I’m taking off!” She responded, “Yay! I have not been feeling well at all today and I need my mommy!”

Weekend At Home

Friday afternoon I left Ashtyn with her dad and nurse, and flew to Salt Lake City. Aside from Ashtyn and Chandler not being there, the 72 hours home closely mirrored what it would’ve been like if I wasn’t living in Seattle, and it was wonderful. Friday night: Family sushi dinner for Morgan’s birthday with my parents and siblings followed by girlfriend night at my house with Morgan, her friend Sienna, and my friends Holly and Kathy who stayed until 4:45 a.m.. Saturday: We watched Ethan’s hockey game in the morning; he scored a goal. I then took him to get a birthday present, his first suit. Afterwards we went across the street to the mall so I could clothes shop for Ashtyn. The evening, from 6:00 p.m. until 10:00 p.m., was spent at Top Golf for Ethan’s birthday party. Sunday: We went to church. Ethan received the priesthood which gives him the opportunity to pass the sacrament on Sundays and go to LDS temples to do baptisms for the dead. It’s a big milestone for a young man in our church. After church Morgan, Ethan, and I made homemade pumpkin pie from a pumpkin Ethan grew in our garden. The recipe was amazing, courtesy of Dr Faucette from Seattle Children’s Hospital. We took the pies to my parents house for our traditional Sunday birthday dinner with my siblings, nieces, and nephews. Today is Morgan’s actual birthday. Because of the limited time I have with Morgan and Ethan, they are taking the day off from school. I’m going to spend 1 hour in the morning at the hair salon with Candice to hide all the gray and then take Morgan to get her drivers license. She can then drive us to lunch before taking me to the airport and that will wrap up my 72 hour weekend home. I know I’ll be pumped flying back to Seattle with so much excitement to get Ashtyn home. There’s really no place like it. Next update will be what Ashtyn did while I was gone.

Birthday Party

Grandma and Grandpa Hosenfeld

Grandma and Grandpa Poulsen

Thinking of Chandler

Garden

Pumpkin that became a pie

Happy Birthday Morgan and Ethan 

Pumpkin Pie

If you don’t like pumpkin pie, you’ll like this one. I thought it was even better the next day.

•32 oz of ground up fresh pumpkin (not the skin nor guts obviously)
•6 eggs
•1 1/2 cups sugar
•1 tsp salt
•1 tsp ginger
•2 tsp nutmeg
•1 tsp cinnamon
•1 can (18 oz) condensed milk
•6 oz regular milk
•Mix all together till almost liquid.
•Makes two pies
•Cook at 375 deg, for 1 hr, check with a knife, should come out relatively dry. May need 5-10 more minutes.
•I like to use tin fool on the crust edge so it doesn't overcook.
•Enjoy!
Thank you Dr Kelly Faucette.

I Want To Feel What She Feels

The reason I rarely leave Ashtyn’s side is because I want to understand as personally as I can what she goes through each and every day. I want to feel what she feels, see what she sees, talk with those she talks to, eat what she eats, and sleep where she sleeps. I want her to know that I know what the journey has been like. I want her to know that if she can’t come and go, then neither can I. I want her to know that we are in this together entirely. Yesterday was Ethan’s 12th birthday and Monday is Morgan’s 16th birthday. I felt it was important for me to spend the birthday weekend with them. I’m flying to Salt Lake City today while her dad takes my place with Ashtyn. How do I feel about leaving for three days? I’m happy to be able to have a birthday party for Ethan and be there when he receives the priesthood. I’m happy to have a family dinner party for Morgan and take her to get her drivers license. I’m sad to walk out of the hospital when Ashtyn can’t and leave her behind. I am deeply grateful that when I do go home for good, I won’t be going without my Ashtyn.

BMT Day 65

BMT Day 65: Ashtyn engrafted over 3 weeks ago. We’ve been in the hospital 72 days with no idea when she’ll be able to leave. She is doing all that is asked of her; eats when her stomach doesn’t want food, exercises when her body is thoroughly exhausted, interacts when every ounce of her soul screams for constant sleep. Her physical body needs to turn a corner for good pronto before she can progress further. The adenovirus needs to disappear so Cidofovir is stopped so her kidneys will stop getting injured so the insanely high IV potassium needs will decrease so she won’t need constant cardiac monitoring and regular lab draws. Her kidneys also need to heal so she can lose 30 pounds of retained fluid so she can walk and breathe better so she can get stronger and more independent. Her stomach needs to heal so she’s not nauseated so she can eat calories so IV nutrition won’t be needed. See the conundrum? Her biggest medical problem currently is adenovirus, Cidofovir, kidney injury, and hoping she doesn’t have gut graft verses host disease. Her physical and morale biggest problem is having so much fluid in her body that she’s 140 pounds when she’s normally 100 pounds. Mostly I’m totally patient but today I’m getting impatient. I shed tears for her today. I pray that God will help her body do it’s part as she is doing hers.

Current Facts

Some current facts:
•Adenovirus level is down to 34,000. 🙌 
•Still needs antiviral drug Cidofovir which continues to affect her kidneys negatively.
•MMF, one of two immunosuppressant drugs, was stopped (still on Sirolimus). No signs of graft vs host disease 🙌 
•Continues on a bone marrow stimulant Filgrastim until ANC reaches 2500. 
•White blood cells are increasing with a current absolute neutrophil count of 1282. 🙌
•Needs platelet transfusions daily to every other day and red blood cell transfusions near twice a week.
•A large amount of IV potassium in still needed in her IV nutrition.
•Yesterday she drank a protein drink for breakfast, 1/4 a cheese quesadilla for lunch, and chicken noodle soup for dinner while drinking calories throughout the day.🙌
•Needs oxygen when she sleeps.
•Participates in two hours of physical/occupational therapy a day plus walks to the restroom 1/4 of the time, showers with a bench, and has wakeful moments throughout the day and evening. 🙌
•Feels nauseated and neuropathic pain all of the time, and is tired most of the time.
•Feels happy most of the time and grateful all of the time. 

Grandma, Grandpa, and Aunts for the weekend 

plus a wheelchair trip to the cafeteria 

on a low traffic Sunday right before closing time.

The Power Of Thoughts

Two years ago today Ashtyn started her second fight with cancer, and since then had a 2nd BMT, 3rd fight with cancer, and 3rd BMT. Ash and I have no concept of time. We’ve been in the hospital 70 days straight which feels like 6 months, and lived away from home in Seattle for 7 months which seems like 2 years.

When engraftment happened 3 weeks ago there was no hesitation getting Ashtyn on the recovery road. She was encouraged to eat solid foods, get out of bed, sit in a chair, walk, and exercise with physical and occupational therapy. At first she progressed everyday but it didn’t take long before she became overwhelmed by the to-do list. Her thoughts then turned to doubt rather than hope. “I don’t want to get my hopes up to go home. Something always happens that prevents me from getting my own way.” And with those factors, she subconsciously stopped trying. It was pretty obvious through my eyes because I’ve seen it in times past. Her face was expressionless, her personality didn’t show, she stopped walking to the restroom, was more wobbly when standing, fitness ability completely declined, and no longer ate solid food. After two weeks of a lack of progress it was time for daily mother moments. For several days I pointed out the facts I saw and remind her of the power our mind and thoughts have. When I woke up yesterday her nurse observed, “Ashtyn seems so much more steady on her feet and is showing some personality.” I responded, “You noticed! I had a feeling she was getting that fire back in her.” During the day she walked to the restroom with a walker, stood for a record 2 minutes straight, excelled during her physical and occupational therapy, and ate 3/4 a pancake plus drank milk and other calorie drinks. I’m so grateful she always finds the strength within to stand back up every time she’s knocked down.