Wednesday, February 6, 2008

Ash Wednesday

I guess I'd better deal with Ash Wednesday.

I've mentioned that I was brought up in a non-traditional, though Christian, religion (Christian Science). What that means is that Lent, Ash Wednesday, Palm Sunday and Easter were not celebrated (nor was the Eucharist). So I haven't had a lot of experience with Ash Wednesday, since I was baptised, with my children, a number of years ago into the Presbyterian church.

Last year, Ash Wednesday fell on February 21st. How do I know this? It was the day of Katie's surgery (to remove her tumor). We spent the entire day, and all of the night, until 4:30 in the morning of the 22nd, holding vigil for Katie in one way or another. I refused to go and get ashes put on my forehead, though I think it was offered at the hospital chapel. It just seemed like too much, while my daughter's life was on the line in the operating room; as if I was not offering everything already.

We went to the hospital around 7:30 a.m. The doctor came in and told us that a short surgery or a long surgery was neither good nor bad; that they would work until they were finished. I got to help Katie change her clothes, and we were able to stay with her until she had her "relaxation medicine." She got to have hugs and kisses, some words of love and encouragement, and then she went out of the room with her friend Julie from Childlife. That was the last time we got to see her for many, many hours.

We were given a pager so that we could receive updates. Every two hours or so, a nurse would page us and say things like, "They have her open now." It took them at least five hours to get her abdomen open; we did not understand this, at first. The tumor was so extensive that it had grown from her adrenal gland, encased a kidney, crossed over her midline into a lobe of her liver, grown to completely fill her inferior vena cava, and entered her heart. Her body had miraculously created alternative pathways for her blood to flow, since the vena cava is a vital, major blood vessel. As much of a blessing is this was, the surgeons had to be very careful as they worked around these alternative blood pathways.

In the middle of the night, as we were trying to rest and trying not to worry too much, we were paged to come to the surgery area. Dr. W. told us very gently and very gravely that he did not expect Katie to make it through the surgery. He had been working on her since morning, and this was around 11:30 p.m. We were aghast. Why now? He felt that she was going to bleed to death when they began to work on her liver. Dr. C. was in the OR, working on her heart, as we were talking to Dr. W. He simply wanted to prepare us. I still cannot believe how kind he was, after such a grueling day, with so much left to do yet to try to save Katie --when he might have been resting-- to tell us this awful news personally. I don't know how I would have faced parents with that kind of news.

We were devastated, and went back to the family area to try to rest, pray and hope for the best. About 2 hours later, we were paged again. Dreading this meeting, we went back to the ICU and met a smiling Dr. C, the cardiac surgeon. "My part went great!" he told us. She didn't bleed as much as they had feared; Dr. W. was working with her now. He gave us such a lift. We went back to the family area exhausted, but with a glimmer of hope.

Around 4:30 in the morning of February 22, we were paged to come to the ICU and see Katie. She was alive. As Dr. W. told me many times, "She is still very sick," and she looked quite different than anyone I had ever seen, but I have never been so glad to see anyone in my life. She had survived! They were happy, and a bit surprised, I think. She had used about 70 units of blood products during her surgery; you've got to love all of the blood donors after that. We thanked the doctors profusely, and I said, We will see you after you've had some rest, thinking that they would take the day off, after an 18-hour surgery. Dr. W. said that he would be back later in the day to check on her. Amazing. He did come back, every day, to look after her recovery. We will never be able to thank these doctors enough for giving her a second chance to live without the tumor.

I really believed Katie was going to make it. Adrenocortical carcinoma is very rare, especially in children, and presently has no known cure; her tumor was a huge, widespread one. Still, she survived a surgery that was absolutely mind-boggling. She recovered her strength rapidly and surprised the nurses with her spunk and determination. They loved her spiciness and her sweetness. Those nurses are ANGELS, and they will have my love and gratitude forever. I just felt that given any odds, even a small percentage, a girl this strong, this beloved, and with such a sparkling character would have to recover and go on to live a different life, but a good one.

So I confess that, since that day, I have thought of Ash Wednesday with the opposite of reverence. It sounds ungrateful, since we were surrounded by caring family, friends and staff as we waited, and Katie survived the surgery, but that is not what I am thinking of; it is of the awful anguish of spending 18 hours knowing that (in order for her to have a chance to live) you are allowing your child to be cut open, and it is all out of your hands. Perhaps in time I will see it differently. We were fortunate to be in such a world-class facility, with Katie receiving the best care available; many people were praying for Katie. I know that God loves us all, and I love God, with gratitude for His grace; but the circumstances do not feel like love. We were held in love, as the vigils for Katie clearly show, but we were also suffering, as we were held in love.


Sheri said...

I just wept as I read your account of that day. I hope it was healing for you to type it all out. We had a similar experience through Alexander's 12 hour surgery to remove his brain tumor, so I know something of that vigil of surreal agony.

My heart is with you. You do not suffer along. I bear witness, as do many others, to your pain and your love both. Katie will never be forgotten. Please know neither will you.

Carrie said...

I can't recall how I found your blog. A link followed from someone we both read earlier tonight perhaps.

I just wanted to offer my condolences. Not sure what else to say... it's so hard losing a child..

Anyway, we sort of had a similar path at the same time last year. My parents both fell on October 7, 2006. It turned out they each had a rare type of cancer and I lost them both within months of each other. Like you, I've been getting natural body therapies to help myself through the grief. And I'm a big fan of Elisabeth Kubler-Ross's books, especially On Grief and Grieving.

They say this will all get easier in time. I suppose it does, and I do feel that way.

I just wanted to leave a note to let you know how sorry I am for what you and your family have gone through.

Patty said...

thank you so much for leaving a comment on kelly's caring bridge. we just never seemed to have/take the time to say much more than hi. sometimes it's like that at the RonDon House - enough energy to just take care of your own family and nothing left over to meet all the new patients/families here. it's all exhausting as you well know.
i must tell you, our daughter Molly was at Hutch School with David. She received word of Katie's death when we were home in Montana - from another "Hutch classmate" She was so heartbroken and many tears were shed for your family. Molly has taken the role of entertainer/cheerer-upper throughout this illness (and even before) but her heart is ever so tender. we send our love and sympathy to you all. please stick with me Karen. We were given this same prognosis back in 2001 - 3-6 months to live and yet she survived and thrived 6 more years before the cancer reared its ugly head yet again.
i visited your blogspot - it is amazing, beautiful, painfully heart-wrenching. i hope i will not be able to know firsthand what you are going through yet the doctors would say i will know the pain of losing a child to cancer. i have lost two already to miscarriage/premature birth.
your gift of expressing itself is a gift to all who visit your online journal or should we say, online journey?
must go and get dressed - kelly has labs at 11 a.m. sigh......praying for patience and perseverance for the
"interruptions" cancer causes in our daily lives while grateful for the kingdom perspective God has given us through this.
thanks again Karen for posting - iwill be visiting your site again.
Under His Wing