Thank goodness that she had the foresight to bring her favorite cozy blanket with her, the one that I made (I am not a good seamstress) with Rita's help. That blanket went everywhere with her, the entire time she was in the hospital, to every scan, procedure, room change and appointment, as a shawl, a cover, a cloak, a mask & an air filter. It is now on our bed. She was funny about it: there was a "right" side and a "wrong" side, an "up" side and a "down" side. I am the only one who understood this. And I keep it the way she liked it, on my bed. She would never let me mend it. It has some holes in it, and it is wearing thin, but I was not allowed to sew it up. I was allowed to wash it, as long as it was back with her by the end of the day.
It would be hard to describe the quality of our fear. I could tell you about it in several ways, but the one that comes to mind is this: at this hospital, with the combined resources of the University of Washington Medical Center, the Fred Hutchinson Cancer Research Center, and Children's Hospital's own renowned doctors, we were told, "We never see this." "In 25 years, I have never seen this." "This is very rare in adults, and even more rare in children." "It is inoperable, and it is not chemo-responsive." Here we had a perfectly healthy child, who just happened to slow down and have a slight fever, on and off for 3 weeks, and --WHAMMO!-- it is revealed that she has a tumor extending throughout her abdomen. One, huge, invasive tumor, and it has entered her heart.
So on this day, this year, I need to stop and say, oh, how I recall the awful feelings of that day. So much has happened since then. The world has become a darker place, for me, yet I learned & saw many important things along the way. The worst thing I learned, at least as I see it today, is that you can work as hard as you know how to work, with all of the experts and expertise available, with the best of intentions, surrounded by good will in amounts that you never dreamed possible, with a love so great that it's hard to believe it flows through one human heart, and you may still have to watch your child suffer and die. That is why the world looks so different to me now; that, and the fact that the light of one lovely, feisty, gorgeous, hilarious, spritely, creative 12-year-old girl is no longer with me in this place.