100 Days Post Bone Marrow Transplant

By September 17, 2013Daily Life, Uncategorized

It has been 100 days since Ashtyn received her bone marrow transplant. She has been home from the hospital for 69 days. From the time Ashtyn got home, recovery has been slow and steady – always improving. From a day-by-day perspective, her progress seems almost nonexistent. It would be easy to let the days go by not recognizing the miraculous improvements that have been before our eyes. However, looking back, there is a clear difference of where Ashtyn is today as opposed to where she was just two months ago.

Progression A few weeks after diagnosis vs A few weeks after a bone marrow transplant.

Progression
a few weeks after diagnosis VS a few weeks after a bone marrow transplant.

“We are not transformed, as you know, overnight, these things come over process of time; changes are incremental and people don’t see them until they look back and see where they are as opposed to where they were.” Elder D. Todd Christofferson

I am extremely grateful for the astonishing course and progress she has had since being home. Looking back there have been incredible improvements in her emotional stability, social adjustments, physical strength and endurance, nausea and appetite.

After being in the hospital for nearly six months, we did not anticipate the emotional struggle it would be transitioning into a life outside the hospital. To some degree, Ashtyn wasn’t the same 12 year old girl that she was in January. What had mattered to her six months before wasn’t at the forefront anymore. For instance, the many pictures she had of Justin Beiber covering her bedroom walls were taken down, replaced by uplifting quotes and pictures of sandy beaches. Her once social spirit, that loved being surrounded by friends from school, had become accustomed to being around health care “friends” and having conversations centered around the topic of cancer. In the past, she would have participated in the usual, fun family interactions, but noticed that the normal noises of chattering and playing were too much for her already overstimulated senses. Upon coming home, Ashtyn was very tearful for several weeks. She was depressed. She felt frustrated, hopeless, sad, lonely, irritable, and anxious. At times throughout the days, I would see her punching a pillow in frustration or crying quietly in sorrow. It got worse before it got better. Ashtyn wished she had someone who knew exactly how she felt and would cry with her. After a couple weeks of being home she started talking with the hospital pediatric oncology physiologist. It was helpful for her to talk to someone who validated her emotions. What was even more helpful in gaining peace was time. Over time she became less tearful, her frustrations and irritability lightened, and her emptiness was replaced by comfort in her new post-cancer life. She slowly gained inner strength to adjust to her broadened perspective, deepened maturity, and a completely spent body and mind. Light gradually flickered back into her soul. She is getting into her new groove, continually finding more and more joy in life.

Emotional Battle

Emotional Battle

For months, Ashtyn had very little contact with kids her own age or younger. The hospital had a rule from February through April that no one 13 years or younger could visit patients because of the community flu season. She also had no desire to communicate with friends and siblings via Facetime, Skype nor phone calls because it was too painful to think of life outside the hospital and what she was missing out on. The easiest way for her to face her circumstances was to live in her hospital room and block out anything that may be going on out in the “real” world. When she was finally able to come home for good in July, the desire to be social was nonexistent. What was there to talk about with people? Did anyone understand what she had just gone through? So much had changed within her – who was she anyway? Slowly, social opportunities were placed before her and gradually has become more and more comfortable.

Sunday School comes to her.

Sunday School comes to her.

Ashtyn is not allowed to go to church until Spring. Her teacher had the brilliant idea to bring the Sunday School class to her each week. Every Sunday, her teacher evaluates the health of the class. If everyone is well, they all walk to our house and participate in the 40 minute lesson together. What a blessing it has been for Ashtyn. There have also been a few occasions where she has gotten together with friends. She went to the pool with Spencer, a childhood friend, who also had cancer a few years ago. She visited Hunter in July, a friend she met at the hospital who would soon be having a bone marrow transplant. After a few weeks of being home, friends from school came over for a couple of hours to help ease her into socializing again. Last weekend, she went to a friends house for over three hours for a birthday party. Sunday, she asked if I would invite her grandparents over for dinner. Her need for social interaction is growing as she continues to discover her new normal.

Hunter and Ashtyn

Hunter and Ashtyn

He wouldn't swim since she couldn't

He wouldn’t swim since she couldn’t

School Friends

School Friends

Alpine Slide with Siblings

Alpine Slide with Siblings

Walking to Clinic

Walking to Clinic

It has been remarkable to look back at how far Ashtyn has come physically. When arriving home two months ago, her endurance was minimal. Walking out to the driveway and back inside was a strain. She then was stretched to her limits by walking two houses down the street and back. Each week, when she went to the hospital for her clinic check up, I would valet park and have her walk 30 feet to a bench inside. I then would find a wheelchair to push her the rest of the way to the clinic office. At first there was no way she would be able to stand in the elevator and then walk 100 yards down the hall to clinic. Gradually she was able to do more and more. After a month, a wheel chair was no longer needed. She was able to walk from the car to the elevator door. Then, after sitting and resting on a bench, she could stand in the elevator with painful, weak legs and wait for it to ascend to the 4th floor. Once out, she would sit and rest to gear up for the walk down the hall. As she slowly walked, we would eyeball chairs that lined the hall and have a goal to walk a certain distance before resting. What would take you and I three minutes, start to finish, was over a 10 minute exercise opportunity for Ashtyn. She continues going to the hospital weekly, however the picture looks much different from two months ago. This week, she will get out of the car and put on her blue, thick mask like always. She will then walk easily to the elevator, stand in the elevator without pain, and then walk down the hall to clinic without any need to rest or sit. She will even try to increase her speed and balance as she walks. Every Tuesday and Thursday physical therapy comes to my house and works on building Ashtyn’s strength and endurance. What a blessing it has been to see visual progress as her body is becoming stronger and stronger.

PT - Balance

PT – Balance

PT - Strength

PT – Strength

Appetite!!

Appetite!!

Nausea and a lack of appetite have been an issue since the time of diagnosis. A blue plastic barf bag became her trusted constant companion. It was like a security blanket that she never went without. Looking at past pictures you could play the game, “Where’s the blue barf bag?” because it was ever present. When Ashtyn was discharged from the hospital, she was given IV nutrition and fluids during each night to ensure she was getting enough calories and fluid. Twice a day she took a medication that helped increase her appetite. During the first month of being home, she ate close to 300 calories a day and threw up almost daily. As with all her progress, her nausea gradually decreased and her appetite increased. On August 21st she no longer needed TPN and lipids (IV nutrition) during the night. She was able to eat enough calories on her own during the day. For several more weeks IV fluids continued to be infused during the night to keep her hydrated. September 18th was the first night all IV fluids were stopped and she slept free of IV tubing. Nausea still comes and goes and seems to occur mostly in the morning. We have found that (probably from getting her gallbladder out in May) her stomach also doesn’t feel well when she eats fattening dairy products such as cheese and ice cream. To this day she still takes a medication Zofran to help control nausea and an appetite stimulant. We could not be more pleased that her stomach is tolerating real food. Whatever she craves she gets. Why not? She deserves it. A month ago, when starting to eat sufficient calories, she felt a difference in her body. “When I wasn’t eating food for so many months, even though I wasn’t hungry I felt my body was starving. I feel so much better with actual food.”

Ashtyn and I had a short conversation last week about her progress. She mentioned that she literally feels her body working hard to rebuild and regenerate. We thought of all the work her body is doing from the outward physical, emotional, social, and mental tasks to the deepest fiber demands that we can’t even see. I mentioned, “You have never worked harder in your life than right now.” She agreed.

“There is a purpose in life far beyond living comfortably.” D. Todd Christofferson
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