Just a glimpse at what my daughter's reality is and so many kids that are fighting just as much as her. I pray one day for a cure and every penny counts.
Watching her walk into the OR, clutching her favorite pillow tightly to her chest for comfort, and knowing she is terrified of the anesthesia mask that will put her to sleep as well as the pain she will wake up in after her bone marrow aspiration never gets any easier. Neither does waking away from her after she is put under, knowing a 4 inch needle is about to pierce her already multiple-scarred hip area and draw out bone marrow to be analyzed under a microscope to determine what remains of her dwindling healthy cells and what has been replaced with useless cells that fail to produce the blood necessary to sustain her life while simultaneously searching for cells that indicate leukemia. Then I spend the next week waiting on the edge of my seat, while trying to put on a brave face, for biopsy results that will dictate if we get to go back to our regularly scheduled lives or start planning for a 100+ day hospital stay thousands of miles from home and a bone marrow transplant that will be the most grueling, heartbreaking, exhausting and horrific experience of our lives.
This is the reality of what every FA parent endures at least once a year. I hate this disease with every single cell of my body and once again, all I can do is pray one day a cure will be found for this extraordinary, sweet, precious daughter of mine and her fellow Fanconi anemia fighters. #FASucks #CureFA