October 10 - Year 1

This is the day, one year ago, that we went to Children's Hospital in Seattle through the Emergency Room entrance, and stayed. We were terrified. We were questioned for hours, by many teams of doctors. We waited. We tried to help Katie relax. We called our parents.

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.

A Hard Time of Year

We are heading into a difficult season, for me. It's early October, the time when Katie was first admitted to the hospital, one year ago.

Last year at this time, Katie was sick with what we (and her doctor) thought was a virus. Mono was going around our area, and her symptoms resembled mono symptoms, except that she tested negative for it, twice. She was weak and tired, and had dark circles under her eyes. She slept alot. I kept her home from school due to her lack of energy and her low-grade fever. I took her to the doctor for blood tests and other tests. This went on for 3 weeks. We did the online homework drill, with me going back and forth to her school for books, and to turn in the homework that she was able to do.

Finally, we noticed a slight swelling in her zyphoid process (sternum area), and the doctor ordered an ultrasound. Beginning of nightmare...October 9th, 2006. I got a call from our doctor that same day, after the ultrasound results came in, telling me that there was a large growth in Katie's abdomen, around her kidney and heading up towards her heart. I found it hard to breathe. I told the doctor, "You have to stop talking." I set the phone down on the kitchen table, and lay my head down as I tried to breathe. After a few moments, I told her she could continue. I was told to get Katie to a CT scan, that afternoon.

Wouldn't you know it, that day David had a friend over. We got in touch with his mom, and she came to take him home. I called Gregg & told him to come home as soon as possible. I called my mom and asked her to accompany us to the CT scan. I took Katie and my mom and we went for her first-ever CT. After the scan, Grandma bought Katie a stuffed animal at the hospital's gift shop, and we took her out to her favorite restaurant for dinner; her choice: a cheeseburger and fries. Then we went home, and the next blow fell. The CT revealed more of the tumor, and we were to go to Children's Hospital in Seattle first thing in the morning, as soon as we could get copies of the CT in our hands.

On October 10th, we entered via the emergency room, and the nightmare began to unfold before our unbelieving eyes. Katie was tested, questioned, and examined for hours, and finally, admitted to the Hematology-Oncology floor (affectionately known as SCCA, the Seattle Cancer Care Alliance).

Let me just say here that the feeling we had over and over, and still have is: there must be some mistake. We don't HAVE cancer in our family. To this day, I think: maybe I was hit by a truck, and I am in a hospital somewhere, out of my mind, and dreaming this. I wish it were so, instead of what is instead true: this cancer took 10 months to kill Katie. We tried to shrink it, kill it, have it cut out, and again to keep it at bay with drugs. But no, it was going to do its thing in her body.

At first, I felt as if a rapist had got into my house and into my daughter. I just felt that she had been violated by a silent, unseen assailant. How DARE this thing sneak in like that? Where were the signs? Where were the symptoms, when it was tiny enough to fix it? Why not a peep, not a bump, not a bulge, not a blood marker, until it was encasing her adrenal gland, kidney, in a lobe of her liver, filling her inferior vena cava and IN her HEART? I was filled with rage, and terrified.

So now, one year after her diagnosis (and nearly 2 months after her passing), I'm having some bad memories, flashbacks, of this time last year. Remembering fear, trauma, the desire to protect my girl from something completely out of the blue, out of my control; I've got some simmering anger about it, too. It is what it is, and there it is, today.