Wednesday, February 25, 2009

Ash Wednesday

I'll tell you what a difference a year can make: last year on Ash Wednesday, I was still thinking of it as "Ash f***ing Wednesday," the longest day of our lives, February 21-22, 2007, when Katie had her surgery, and nearly died. That day was so hard, so fraught with anxiety (even with Xanax on board!), including little or no rest for almost 24 hours, that I thought it might be "Ash f***ing Wednesday" in my mind, forever.

This year, it's different. Yesterday, Gregg and I were taking a walk after he came home from work, and I mentioned that today is "that day." Then I thought, Perhaps that's not the way to look at it. I mean, the surgery saved her life, for a time. For those of you who are new here, let me back up & explain.

When we first got to the hospital in October of 2006, and all of the tests results were in, the oncologists told us that the surgeons had refused to attempt to remove Katie's tumor. Although this was the preferred course of treatment, her tumor was so widespread and so unstable that they said she would certainly die on the operating table; they wouldn't attempt to remove it under those circumstances. So we were left with only one way out: try chemotherapy to reduce and stabilize the tumor (attempting to make it hold together better, so it wouldn't break into pieces during surgery; also to shrink it and/or kill it). After the prescribed 5 rounds, we could approach the surgeons again, to see if they deemed it prudent to try to remove the tumor at that time. It was already in Katie's heart, giving it a weird rhythm that caused upsets in the ICU and among the cardiologists, not to mention in her parents!

So Katie endured 5 rounds of deadly, horrific, poisonous chemotherapy. She suffered terribly through it, lost her hair, her appetite, a lot of her joy, her strength, her freedom and her childhood. She bled, she gagged, she vomited, she wept, she suffered pain and indelicacies that most of us didn't even know were possible in a child's world. And at the end of the 5 rounds of chemo, the surgeons said, Yes, they were willing to try to take this thing out of our daughter's abdomen, -- but they also warned us that she might die in the process. Since the only other option was to let the thing continue to grow (and kill her for sure), we agreed that the best approach was to let them have a try, whatever the risks.

There were many scary aspects to Katie's surgery. Basically, the tumor had grown from her adrenal gland, consumed her kidney, crossed through a blood vessel into a lobe of her liver, grown through the inferior vena cava (IVC) and into her heart. They were planning to remove the adrenal gland, the kidney, one third of her liver and the (depending upon the tumor's placement), perhaps the entire inferior vena cava. They might have to reconstruct that vital vessel for her out of a synthetic material, and then deal with the part of the tumor that had entered her heart. It was daunting and terrifying, and I never did look at the full scans of the tumor; I just couldn't bear to see a picture of the invader.

We took Katie into the surgery area around 7:00 in the morning on Ash Wednesday. I got to help her change into her gown, give her lots of Mom-love and help her get ready. We re-joined David & Gregg, and we all told her that we loved her & would see her later; then Katie went with Julie, our beloved ChildLife friend to the OR. Julie was allowed to stay with her until she was asleep. It took the team about 5 hours just to get her body safely open. Katie's circulatory system had miraculously created alternate pathways for her blood to flow, bypassing the inferior vena cava. They had to work around this blood-supply network very carefully, and they did it. There was no need to re-create the IVC; her body had done it for them.

They had no real difficulty taking the tumor out of her heart; it wasn't attached there, so it came right out, according to Dr. Cohen (the genius who worked on her heart). But when they got to taking out a lobe of her liver, Dr. Waldhausen (the genius who did the rest of the surgery) called us into conference with him, & warned us that she might "bleed out," as in bleed to death...yet she didn't. She was in the cardiac intensive care unit, ready for us to see her, at 4:30 the next morning. Twenty-one hours of waiting, 18 hours of surgery, 70 units of donated blood products; one less adrenal gland, kidney, lobe of liver, IVC, and adrenocortical carcinoma tumor. She was swollen with fluids, and looked totally different; she had lost her remaining hair, eyebrows and lashes. She had an incision from the hollow of her throat to her "bikini area," and from side-to-side across her abdomen. It was huge; they hadn't been able to fully close her incision, so part of it was covered with a bandage, but she was ALIVE!

A miracle, on Ash Wednesday.

I did see photos of the tumor after her surgery. It was disgusting, rude, meaty and venomous-looking, to me; of course, I hated it. We sent it to the National Tumor Registry, so it can be used in research to help other families with hard-to-diagnose and hard-to-treat tumors.

We got our daughter back on Ash Wednesday, tumor-free. She did have microscopic bits of disease left in her liver, and we knew we would have to deal with those, but the life-threatening mass in her abdomen was GONE. She was on a breathing tube, and unconscious for days; she needed further surgery to close her incision. She had ups and downs in her recovery, but at that point, she was free; she was getting a second chance.

It was a miracle that Katie made it through her chemo to have the surgery; it was a miracle that she made it through the surgery. It is a miracle that we got to have the days from October of 2006 until August of 2007 with her, instead of losing her in the autumn of 2006. I now believe that was our big miracle: 10 months, instead of days or weeks.

So today, I think of our family and friends who prayed with us, and waited with us during those long hours; the blood donors, the doctors, nurses, researchers, drug companies, Child Life, chaplains, social workers, cleaning staff, and of God Himself, with us that day, and I thank God for the miracle of that surgery on Ash Wednesday. It's not Ash f***ing Wednesday anymore.


Grandma J said...

God bless you! As I sit here with tears running down my cheeks, I feel humbled by your faith and love.

Busy Bee Suz said...

I agree w/ Grandma J....your faith and love for Katie and our Creator is very humbling. I am glad that you are seeing things differently this year.
Take care, Suz

Oh, I got your card this week. Thanks and you did not have to do that. But next time take pictures of the whales for me!!! :)

Dawn~^i^Brandon^i^, Jordan, and Seth's mom said...

Because I am lacking words...I give you a big smile, and a hug!


Jennifer said...

Also crying here. Such a powerful entry and homage of love to all those who "fought" alongside you for Katie's life, from the nurses to the doctors to the blood donors to your family and friends. And a tribute to Katie herself ... one tough cookie, to say the very least.

Ash Wednesday now sounds still painful and bittersweet, but that sits right next to the massive, deep love -- and even joy -- therein.

Deep blessings to you!

MB said...
This comment has been removed by a blog administrator.
MB said...

I'm not sure I will ever look at Ash f***g WEdnesday ever the same. Receiving the ashes the other night only takes me right back to receiving the ashes that day at the hospital. I will ALWAYS remember that day....I am so grateful to have been there, but I may never think of those ashes the same way again. I miss her so much, when I look at that amazing picture, it is hard to remember she isn't here for me to mess with. So, I settle for stupid David who wasn't even there for me to annoy on my last visit. It would help me if he checked with me next time to see how his schedule works with mine:p

Anonymous said...

IAM ALWAYS HUMBled bY YUOR real. so true of so manY PEOPLE. THERE WILL Be those b4 US ANd those after. it bLOWS MY MINd. I love your bLOG ANd enJOY HEARINg your life. i knOW ONe day, we will meet. I tear up(hard with meds:) thinkINg of what that hug will feel like.....YOUR SISTER IN grieF ANd love.....michelle
Proud Member of Team Unite!

Laurie Brandriet Keller said...

In some ways I have probably kept myself somewhat in the dark about these details. So raw ... so so painful.

I love reading about the good at the tail end of all that difficulty.

Love to you from The Prairie. You are amazing and I'm grateful you are in my life.