Today is BMT Day 45. Absolute neutrophil count is 444!
On July 31st 2018 Ashtyn walked into Seattle Children’s Hospital to receive her 3rd BMT with a hunch it would be difficult but didn’t know exactly what to expect. She ended up going through what I describe as “the life cycle”, something I’ve seen several times during the five year cancer fight when her body is pushed to deaths door and back. It’s a cycle that made my independent 17 year old as dependent as a baby and now she’s working on becoming independent again. She started the transplant being able to walk, get dressed, go to the restroom, shower, eat, drink, talk, and text. Within a week of being in the hospital she needed help walking, then could only stand briefly to pivot to a bedside commode, which declined further to being bed-bound not even able to sit up. She couldn’t dress or wash herself, talked very little, and stopped using her phone. Her health deteriorated further where she was too sick to be aware of modesty. Clothes were impractical to work around so she wore a hospital gown. She was also incontinent and used a diaper that was changed every 2 hours around the clock. Each day it took anywhere from two to four people, and sometimes a patient-lift device, to weigh her, do a bed bath, and change her sheets. I would change her diaper, keep her clean, brush her teeth, manage skin breakdown, do passive range of motion, positioning, and stretching. (It’s hard to believe that was only 3 weeks ago.) Her stomach quickly became incapable of handing any food so all nutrition came from IV fluids. When drinking or eating ice chips, she could not hold a cup let alone coordinate a spoon. Ice was spoon fed and a cup of water was held for her while she used a straw. Ashtyn was as trusting as a baby and doesn’t remember most of it. The cycle is now turning towards independence again. Currently she can walk short distances with someone right beside her for fall precautions. She can stand to the bedside commode, wash herself, get dressed, hold a cup to drink, and lift a spoon to eat. Her stomach and gut are really struggling. It will still be awhile before her intestines absorb water properly and her stomach tolerates more than simple liquids. Every single day Occupational Therapy comes to her room and works with her at 11:00 a.m. and Physical Therapy comes at 3:00 p.m.. Recovery is in full swing with home being the focus.
