Wednesday, October 10, 2007

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.

Wednesday, October 3, 2007

Christmas Card Thoughts...in October

I have been thinking about Christmas. Christmas in October?, you may ask. Yes, because this is the time of year when I begin gathering ideas for gifts, and more fun than that, I go through the photos of the past year in search of a great one for our Christmas card. Sometimes it doesn't get taken until November, as a number of them were: we would take a photo in Palm Desert during the Thanksgiving holiday with Grandma and Kappa.

This was a challenge last year, as we were in the hospital with Katie and at Ronald McDonald House. The kids were heartbroken to miss the annual trip to the Desert. Getting a good photo of the four of us was impossible, since Katie had lost her hair and refused to cooperate with any family photo. Instead, I went to a file of photos that had been taken by a professional in May, 2006, before Katie got sick, when the kids were hoping to start modeling/acting. I chose one of David and Katie, and made it into a sort of "thank you-Merry Christmas" card.

This year, it is a heartbreak. We have one really good photo of the four of us, taken at Andrea and Mike's wedding, 2 weeks to the day before Katie passed away. It's the only family shot that we have from 2007. The problem is, Katie doesn't look as pretty as I KNOW she would want to in the picture, and I think it would make her mad if we use it. On the other hand, this is the last year that we will have a shot of the four of us, so it seems stupid to skip it over some vanity. On the OTHER hand, we have some good photos of just the three of us from our trip to Canada last month, which would show how life is now. And we might get a good shot in the Desert this year. Then again, I can't imagine our Christmas photo without Katie...and around and around I go, on the little hamster-wheel in my mind.

Another thing: if attachment is a source of pain and trouble in our lives, especially our spiritual lives (check your Buddhist writings), why are we mothers hard-wired for attachment? Look at your umbilical cord, as an example; everyone gets one. That cord sustains life for months, as your mother gives you some of everything she has in order to help you grow. When you are born, it gets discarded, but do you ever wonder about how the thing grows, without any effort on your part, or your mother's? It is just THERE when it is needed. So tell me, how are we mothers supposed to face the permanent absence of our child? How would I stop feeling that there has been an amputation where Katie is supposed to be? I am all for children growing up, individuating, moving forward into their own lives, fulfilling their dreams and the design of their own being. Going to college in another state is fine with me; dying is not. It's a violation of nature, and everything in me just screams that it is wrong. It IS wrong, but look: it has happened.

Oh, and another thing: I had one of those Peter-Rabbit-in-Mr.-MacGregor's-Garden moments yesterday, at the grocery store. You know, the moments that you hear about, but cannot imagine yourself being part of...I was pushing my cart full of groceries into the frozen-food aisle, going for the waffles that David prefers for breakfast. Standing right in front of those waffles were two lovely ladies I know. They were so sweet, and happy to see me. But I wanted to run the other way. I actually considered leaving without the waffles, in order to avoid any social contact. It wasn't personal; it was just social contact, in which socially normal behaviour is required/expected. I didn't feel normal; I felt stripped and vulnerable. I felt like a hermit, who doesn't remember how to behave around people. It was the first time that it's happened when I have been alone. I did the best I could, but I feel sorry about my response to the lovely ladies; I know they meant well. How odd, when a mere offer of a hug, and a "How are you?" feels like jungle warfare. Perhaps there is something a bit "off" in me. Hmm...

Tuesday, October 2, 2007

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.

Monday, October 1, 2007

Goodwill from Katie

When Katie found out in July, 2007 that the cancer had returned, in the form of an inoperable tumor, she did something very powerful. A day or two after she got the news, at age 12, she started to write her will...on notebook paper, in pencil. She thought this through by herself. She included her favorite possessions, her money, clothing, books, etc. She was quite specific.

She said that she regretted not being able to leave David something big, like a professional baseball team (I told her that since no one in the family has that kind of money, no one would dream that she would do such a thing anyway). This was after watching the movie, "Little Big League," in case any of you know about it.

One of the most interesting things about her will is how she divided her money. She had a little savings account, where Christmas and birthday money was deposited over the years. In her will, she left half of the money to charity: the Goodwill, to be exact.

We have often donated outgrown clothing to the Goodwill collection site near our town. She and David have been with me on these trips. I don't recall ever discussing this beyond, "We need to make a stop here..." and dropping the items off. But something about it stayed with her. She knew about other charities, because we have decided as a family which charities to support, and have discussed what they do with the money that we give.

The trip to the bank to empty her account was not pleasant for me. The teller was lovely and kind when I told her what I was there to do. She asked how old Katie was, how she died, and and got tearful when I answered her questions; it was awkward. I am a helper; I felt the urge to comfort her. I told myself, "It is not your job to comfort this lady for the death of your daughter." So I stood quietly on my side of the desk, as graciously as possible under the circumstances, and waited as she counted out the money. Then I thanked her, and took it home.

I contacted the Goodwill in Seattle, and after a phone call and a bit of correspondence, I wrote the check, according to Katie's last will: $642.00 to Goodwill. It is a lovely thing, that a 12-year old who has just learned that she is dying, would think to donate half of her money to charity. I love basking in that thought, and admiring Katie for doing it--except that she is my daughter, and I would rather have her here, alive. So actually writing the check and the accompanying note was very, very difficult to do. It felt final. It is a final act, one that I am carrying out for my beloved daughter, because it was her "last will," and she is not alive to do it herself. These acts of closure feel kind of cruel.

But what a gal! She took what power she had, and used it positively. You go, girl!
Article in the Goodwill Ambassador publication about Katie's gift