Mom, Tell Me What It’s Going To Be Like When We Get Home?

“Mom, tell me what it’s going to be like when we get home?”

“You’ll get off the airplane in Salt Lake City and won’t believe how you accomplished what you set out to do in Seattle and are actually home. You’ll walk into the house where Marlie will jump at your legs in total excitement to see you. She’ll follow you into your bedroom which will look exactly how you left it. November and December will be cold and hopefully super snowy. We’ll spend time at home with the fireplace and heater on while those who love you come to visit. We’ll snuggle on the couch with blankets and enjoy calm time with Morgan and Ethan. We’ll have small dinner parties with family and friends, and have little cousin sleepovers.”

From the beginning of the bone marrow transplant, Ashtyn’s heart has been set on going home on Day 100, November 14th. It’s going to take a much bigger miracle than I thought to get her there. Not only does her body have to perfectly cooperate, but the BMT team in Seattle has to feel comfortable with her going home in two weeks and the BMT team in Salt Lake City has to be on board with the decision as well. At this point I have not sat down with a BMT doctor to talk logistics. Her body still has to prove a few things before a serious discussion is appropriate. 1. Her adenovirus level needs to remain below 10,000. It currently is. 2. Graft verses host disease in her intestines needs to stay minimal. It appears to be. 3. Her marrow needs to show robust recovery, which needs improvement. Her ANC is 2080 which is great but platelet transfusions are still required every other day. 4. Her kidneys need to be super stars so IV potassium, magnesium, and bicarbonate are no longer needed. That’s coming along. 5. She needs an “iron stomach” that will handle all needed oral potassium and magnesium without having diarrhea. We haven’t tested the stomach yet for this but it probably needs to be a little more healthy. Unfortunately her body doesn’t have long to prove itself to give the BMT team confidence that she is safe to go home. One thing we have in our favor is that we live 20 minutes from Primary Children’s Hospital, which has a BMT accredited program. Both programs have to feel it is safe and in her long term best interest to go home as early as she’d like. Until I’m told “No” we will shoot for the stars. Why not? You can never go wrong with having hope, faith, and belief. Everyone, there’s a lot to pray for. Let’s get it done.

She may want to go home but in the mean time, 

she’s surrounded by a whole lot of love.

Hanging with Doctor Faucette.

10 Steps Forward, 0 Steps Back

I would say that yesterday was a 10 STEPS FORWARD, 0 STEPS BACK kind-of a day. That hasn’t happened in the last three months and I have a feeling the tide has turned. 1. Last weeks bone marrow aspirate showed zero leukemia. 2. The bone marrow biopsy showed very minimal (<5%) cellularity however all cells are 100% genetically matched to the donor and her absolute neutrophil count went up to 3780 allowing the marrow stimulant medication Neupogen to be stopped. 3. No viruses were found in her spinal fluid. 4. Platelet transfusions are needed every other day instead of daily. Saturday morning she had a random moderate reaction to a platelet transfusion that required two shots of epinephrine. Yesterday she needed another platelet transfusion and completed it without a reaction. 5. Adenovirus level came down to 1,900 so the kidney toxic antiviral medication Cidofovir was stopped! 6. Her extremely high IV potassium needs are coming down. For those who like numbers: when a patient requires over 100 meq of potassium in their IV fluids, that’s a lot. Heart monitoring and frequent lab draws are required. In the past she needed 200 meq of potassium. Yesterday they dropped the IV potassium to 99 meq. Her kidneys are doing much better. 7. Bowels have greatly improved. 8. Slurred speech is gone. 9. Walking well with a walker. 10. She slept without needing oxygen. *One thing that has kept us going during the last eight months is summed up by my Optimistic Hero President Gordon Hinckley. “Be believing. Be happy. Don’t get discouraged. Things will work out.”

Awesome Doctor Beth. What’s not to love? 

She’s got a heart of gold and loves Disneyland as much as Ashtyn does.

Awesome nurse Katya. She has loved and cared for Ashtyn 

so many times, she actually memorized her 

seven digit medical number without trying.

Walking the hospital halls. 

Saying Goodbye Is Hard To Do

BMT Day 84: Ethan flew to Seattle and stayed with us in the hospital for 10 days straight without leaving one time. Sunday, as they hugged goodbye before he flew home, she cried, “I don’t want him to leave without me.” Ashtyn has cried everyday for the past two weeks. She wants to go home. This breaks my heart as my entire soul feels for her and wants to go home too. At the same time I’m grateful for the fact that she is healthy enough to feel appropriate emotions. What humanbeing wouldn’t cry feeling homesick after being away for eight months fighting the biggest battle anyone could ever imagine? Her tears show health. Her tears show strength. Yesterday, for the first time since being in Seattle, plans to go home to Salt Lake City were discussed. It is a bone marrow transplant standard of practice to stay within 30 minutes of the BMT hospital for at least 100 days after the transplant. Ashtyn is in a very unique situation. She will likely be discharged from the hospital close to her 100th day compared to many BMT patients who leave the hospital near Day 30. Our dream come true would be to leave the hospital and instead of staying in Seattle for close observation, drive directly to the airport and fly home to be closely watched by the BMT team at Primary Children’s Hospital. Has that ever before been done? Probably not. But this is Ashtyn we’re talking about and she never does anything typical. What would allow her to go home? 1. Her central line needs to be taken out of her chest. She can’t be more than one hour away from a hospital, let alone on an airplane with a central line. We are hoping she won’t need the central line once IV potassium is not needed, which is being decreased everyday. 2. Under control graft verses host disease. She has mild GVHD in the intestines which currently is being managed and not causing a problem. Let’s keep it that way. 3. Good marrow cellularity, decreasing the platelet transfusions needed to less than twice per week instead of daily. She didn’t need a platelet transfusion on Sunday with a value of 33 instead of less than 20, and her ANC was 3158! She’s on the right path! There are a few other details that need to be in order before going home but let’s focus on the three mentioned. I’ve said it before, it will take a miracle to get Ashtyn home by November 14th but I’m a total believer.

My Wish For You

My wish, for you, is that this life becomes all that you want it to,

Your dreams stay big, your worries stay small,

You never need to carry more than you can hold,

And while you're out there getting where you're getting to,

I hope you know somebody loves you, and wants the same things too,

Yeah, this, is my wish.

*Thank you for the live concert Megan. We love you and are your #1 fans.*

I'm Happy

Each day goes by fast and seems to never have a shortage of things to do. It’s now 3:30 a.m.. Ashtyn slept a lot today because of her bone marrow aspirate and biopsy procedure and is currently awake listening and singing to her worship/spiritual iTunes playlist while reading the Book of Mormon. That’s totally her style and for the first time in 3 months feels up to staying up late, listening to music, and reading. Nighttime has always been our favorite and tonight was extra awesome. For dinner Ashtyn ordered cheese pizza, a vanilla shake, cantaloupe, grapes, and pineapple. She ate one slice of pizza, drank the shake, and didn’t absolutely hate it which is a total win. Ethan sat in her bed and ate his dinner right beside her. Afterwards we watched Survivor, our longtime family tradition. At one point in the evening I left to do laundry and saw Whitney right outside our room! Whitney is a nurse who took care of Ashtyn while fighting cancer in Salt Lake City. She now lives in Seattle and teaches nursing students while getting her nurse practitioner degree. It was so joyful having someone from our Primary Children’s Hospital Family at the beside in Seattle. To top off the night we had Kelsey as our nurse who we love and Ashtyn’s night lab values all came back phenomenal. Her potassium blood level remained perfect after two days of starting to decrease the IV potassium given. Her kidney creatinine level went down to 1.0 from yesterdays 1.3 which is huge and tells us her kidneys are “happier” with the goal to get the number down to 0.6. AND her absolute neutrophil count went up from 2300 last night to 2907! What??!! She’ll be off Neupogen and starting Venetoclax in no time! God is a God of miracles. Up Next: I’m hoping and praying her ability to walk will increase, weight will start to normalize, adenovirus will no longer be an issue, and the bone marrow aspirate and biopsy results will come back A-OK. I’m heading to bed so happy. I have four kids that are progressing and finding joy in their journeys so of course I’m happy.

Whitney was one of the wonderful nurses 

who took care of Ashtyn in Salt Lake City.

Kelsey is one of the wonderful nurses 

who takes care of Ashtyn in Seattle.

Love and Miss my boy Chandler.

Morgan sprained her ankle and can’t cheer for awhile but still smiling.

3X's

When one unsettling issue gets under control another problem shines in my face, and it’s generally accompanied with a little uneasiness. Throughout the entire bone marrow transplant process, there have always been concerning health problems being addressed which is why she’s still in the hospital. There are quite a few issues we are currently dealing with. Ongoing, I can’t wait for her to get off the antiviral medication Cidofovir so we can really start focusing on kidney recovery which will improve her potassium wasting and fluid retention problems. Most recently I’m on edge with my observation that Ashtyn’s speech is definitely slurred and her thought process is notably slow. Last night we played the games “Sets” and “Heads Up!”. She even noticed her brain wasn’t able to process or speak very quickly. It seems like everyone else is talking, thinking, and speaking triple the speed she is. I’m not sure how concerning these findings are. Her brain MRI and CT scan were normal. Today she’s going to get a routine BMT Day 80 bone marrow aspirate and biopsy procedure to check for cellularity and leukemia in the bone marrow. At the same time she’s going to get a lumbar puncture to check for viruses that might be affecting her brain. The most pressing prayers for the day is: 1. No leukemia. 2. A healthy recovering marrow. 3. No viruses in her cerebral spinal fluid. 4. Improved kidneys. 5. Resolved slurred speech and quickened thought process. 6. Ability to steadily walk.

With this being Ashtyn’s third BMT, the recovery is certainly 3X’s as slow, 3X’s as complicated, 3X’s as difficult, 3X’s as heart wrenching, 3X’s as miraculous, and I’m 3X’s as grateful. 3X’s the Charm for this girl.

I'm Not Worthy

Ashtyn is such a rockstar and it’s remarkable to watch. I shake my head a lot in amazement and want to raise my hands up like in Wayne’s World and say, “I’m not worthy! I’m not worthy!” She is on BMT Day 78. Everyday there are a handful of issues going on. Yesterday she had a bone density test to determine how her bones were effected from the chemotherapy, radiation, and bone marrow transplant process. She also had a endoscopy and sigmoidoscopy to check for graft verses host disease in her stomach and intestines. Results have not come back yet. The current issue on the forefront of my mind now is the severe numbness she feels from her waist to toes making it impossible to walk and really difficult to stand. I don’t have any answers as to why she had painful pins and needles feet nerve pain several weeks ago that resolved and was soon replaced with numbness that took over both legs. Walking is so important for not only independence and strength but would also help her puzzling decreased lung function. We’ll get to the bottom of it. I hope you all aren’t tired of praying and pleading her cause. There are so many things to pray for. Will you please add “lack of numbness in her legs and feet” to your prayers. We have so much gratitude. Thank you.

Bone density test

Waiting for her scope procedure

Tackling dinner

I agree Russel WIlson

Now You See It, Now You Don't

YESTERDAY: Ashtyn has “severe numbness from her waist to toes making it impossible to walk and really difficult to stand.”
THIS MORNING: “Will you please add ‘lack of numbness in her legs and feet’ to your prayers.”
THIS AFTERNOON: See video. Numbness went down from “severe” to “medium”.

Adenovirus And ANC

Tammy from Georgia, who is part of Ashtyn’s Army and has become a good friend of mine though we’ve never met, asked, “Will you give us an update on Adenovirus levels and her ANC?” ANC stands for “absolute neutrophil count”. Neutrophils are a type of white blood cell that are particularly important in helping the body fight infection. Engraftment, when the new marrow produced an ANC number over 500, happened on September 24th. Since then the ANC has made a very slow increasing trend as the new marrow builds and produces new cells. Every day the ANC is checked. The daily past two weeks results are as follows starting on October 8th: 1440, 1282, 1260, 1323, 1064, 1204, 1290, 1771, 1696, 2369,1911, 1560, 2035, 2150, and today at 2235, The GOAL is to have two consecutive days of over 2500 so Neupogen, a bone marrow stimulant, can be stopped. Venetoclax will then be started to keep any possible remaining leukemia cells at bay while her immune system becomes strong enough to do the job. ADENOVIRUS can be a life threatening virus to immunocompromised patients like Ashtyn. Currently there aren’t any FDA approved medications that effectively treat adenovirus. Even though the antiviral drug Cidofovir is being given, ones own immune system is the best way to get rid of the virus. Adenovirus levels are checked twice a week. For over a month the levels are as follows chronologically starting on September 23rd: 600,000, 450,000, 91,000, 150,000, 38,000, 110,000, 11,000, 21,000, and yesterday’s was 5,000. The GOAL is to have the level be less than 5,000 for one week in order to stop Cidofovir and hope her kidneys recover and potassium needs decrease. Her ANC, which goes hand in hand with the slow PLATELET engraftment requiring almost daily transfusions, and ADENOVIRUS are two of several issues that are keeping Ashtyn in the hospital. As you can tell from the numbers, the progress is slow but definitely headed in the right direction.

In The Loop

I feel like we are all in this together so I want to keep everyone in the loop. The past weekend went by fast. My parents flew back to Salt Lake City. Ethan’s staying in Seattle at the hospital with us for the week. Ashtyn is neurologically doing better. Her speech is no longer slurred and doesn’t feel buzzed anymore. At this point we’ll figure the drug Marinol, which was suppose to help increase her appetite and lessen nausea, was the culprit. It was stopped in addition to a couple of other medications. She is more steady on her feet but continues to struggle walking (I suspect neuropathy/numbness of her feet has a lot to do with that). The concern on the forefront right now is abdominal cramping and diarrhea. We’ve been trying different approaches to help the problem but decided it was time for her to get a endoscopy and colonoscopy to check for graft verses host disease in her gut, which is when the donated cells attack her tissues. The procedure will be done sometime this week. Graft verses host disease would present a handful of unwanted issues. Best case scenario is that zero graft verses host disease will be seen and her intestinal difficulties will resolve as adenovirus and electrolyte needs resolve. Please pray for no graft verses host disease. We notice and are grateful for the small steps forward that happen each day. Most recent, Ashtyn has had energy to stay awake for around 12 hours a day, without a nap, for three days straight! That really is unreal and totally awesome!

Ups And Downs

Thursday and Friday were nonstop with ups and downs, and we are ready for a calm weekend. Such is life, right? THURSDAY DOWNS: I noticed Ashtyn’s speech was slurred, her thought process was slow, and her ability to stand unassisted was non existent. Why was she able to walk and stand days prior and then change to not being able to get from her bed to the commode without a lot of assistance? Maybe it was all the loose stool... so we decided to cut out protein drinks and work on eating solid food. THURSDAY UPS: My Mom, Dad, and Ethan flew into town arriving after a very tearful day for Ashtyn. Her embrace with Ethan lasted for 5 minutes as they cried. FRIDAY DOWNS: When Ashtyn woke up I noticed slurred speech again. It became apparent that she had no ability to walk and couldn’t stand well either. When she interacted with a nurses aid, she laughed and smiled briefly in a way I knew she was feeling loopy. It bugged her as well. She felt like she was “dazed”, “buzzed”, and “high”. I mentioned my concern regarding her neurological change and within a minute her charge nurse, nurse, nurses assistant, and physician assistant were there. The following hours Ashtyn was assessed by a neurologist and had to get a CT scan and an MRI of her brain. By the end of the day she was in tears, missing and wanting to go home. FRIDAY UPS: CT scan and MRI were normal. Her grandma, grandpa, and brother were there all day. Prayers are still needed for 1. more cellularity in her marrow 2. Healthy organs. 3. Progress that would allow her to go home by her November 25th birthday.

First Hug

Grandma

CT Scan 

I'm Here For You

Grandma, Grandpa, and Ethan flew to Seattle. This is a video shortly after they walked in Ashtyn hospital room. The hug and interaction lasted for over 5 minutes. She misses home more than ever.

A Lot Of Emotions Along The Way

BMT Day 73: Our thoughts and feelings are different depending on the moment of the day. Sometimes I’m nervous when I notice something is “off”. We get frustrated and impatient with two steps forward, one step back. My heart seems to not have any reserve for set backs and am extra sensitive to any struggle she faces. We don’t want anything to be difficult anymore. I want this recovery to be smooth for her. We want continual progress with a guarantee that Ashtyn’s body will be safe to fly home mid-November before her 18th birthday. Other moments we’re calm and at peace with the situation and God’s timing. I notice the improvements. She’s unsteady on her feet still needing assistance and a walker, continually working hard with physical therapy. Her stomach cramps often and has diarrhea but she’s off IV nutrition and consumes all her calories with protein shakes, while trying solid food at least once a day. She still has adenovirus and needs a lot of IV potassium but her adenovirus level came down to 11,000 with a hope it can get to less than 5,000 so Cidofovir can be stopped. Her marrow has been so slow at producing cells. She still needs platelet transfusions almost daily and her absolute neutrophil count has hovered near 1000 to 1500 for weeks but today her ANC is 2300 with a hope it can rise above 2500 for two days so she can get off the marrow stimulant Neupogen. Emotionally Ashtyn has better moments than others. A lot of the time she finds peace and happiness in her environment. Other times she’s tearful. All of the time she misses home tremendously. Her heart aches with the thought that something will go wrong that will prevent her from going home in the next month. She wonders if the day will ever come where she’ll actually be in her own bed with her dog sleeping beside her. I do believe it will take a miracle to get her home before her November 25th birthday. I figure, why not put the icing on the cake of this miraculous journey and finalize it with one more cherry on top miracle. Please pray 1. she’ll be safe to go home by her birthday. 2. Specifically her struggling lungs, heart, bowels, and kidneys will heal properly allowing for full health. 3. Her new marrow will continue to produce new cancer free, wonderful functioning cells. 4. Her muscles will strengthen so she can stand and walk independently.

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.