The past two weeks have been a whirlwind of activity, veering back and forth between fast and slow, and packed with significance. It is still hard to believe some days that this is my life.
Two Mondays ago, Paul and I went to Seattle Children's Hospital to interview two staff members: Karen, a chaplain, and Dr. Cohen, the heart surgeon, both of whom were very important in Katie's cancer journey.
Karen Taliesin is a gifted minister, open to all kinds of spirituality, who brings love and peace into the room when she enters. She was a lifeline to me in the hospital - a representative of God's loving, courageous, humorous presence in the midst of the craziness that is pediatric cancer. She was one of the few people whose presence was acceptable to Katie, and who brought peace. Those 10 months would have been much darker without Karen. She consented to be interviewed on camera, and it was a pleasure to be with her again and hear what she has to say.
Dr. Gordon Cohen is a brilliant pediatric heart surgeon. He removed the part of the tumor which was in Katie's heart. Discovering that her entire inferior vena cava was full of tumor and had to be removed, he re-fashioned a connection for her blood to flow using her own tissue. He repairs the hearts of the tiniest infants, too, and he does it very well indeed.
Dr. Cohen agreed to speak with us on camera, but instead of beginning our session at 10:00 A.M., he was called into surgery, and was delayed until 2:00 P.M. There are not a lot of people in the world who can do what he does, so when he is called, he goes to help. And we were glad to wait for him; we feel strongly that videotape is not as important as pediatric heart surgery!
Dr. Cohen spoke to us candidly for 45 minutes on camera, and for some time afterward, off-camera. He took me right back to Katie's surgery, and it was painful, but for the purposes of our video, it was vitally important. The same feelings arose when listening to Dr. Waldhausen - I was back with Katie, and her life was in grave danger - but she was still alive, with hope for recovery. It is hard to re-visit those memories.
Yesterday, Paul and I interviewed our last subject: Amy, Katie's wonderful hospice nurse. Amy brought peace and comfort into our lives when all hope for recovery had receded, replaced by prayers for mercy, love and an easy death. Our prayers were answered, with God's (and Amy's) help.
As I sat with Amy, her words took me right back to the days of Katie's dying - the four weeks of uncertainty, and the painful steps involved in accepting that we had to let Katie go as easily as we could. Reading and signing the "Do Not Resuscitate" form. Learning about medications we hoped we would never have to use. Facing each day with the purpose to be and provide whatever Katie needed, no matter what happened.
At one point, I thought I was going to be sick. It came over me suddenly, a wave of deep nausea, and I had to pray to get through it without vomiting, as the cameras were rolling and Amy was speaking. It passed, but the feeling shocked me. After four years, the power of those events is buried in my psyche and my body on a deep level. I do not re-visit Katie's dying process in detail in my mind. Going through it once was horrific, yet sacred; remembering it in detail yesterday was just plain horrific...but it is worth it, to do this work.
We are thankful to each interviewee for his/her time, dedication and generosity of spirit in remembering these events and sharing his/her thoughts and feelings about it, more than four years later. Now, we move on to the editing of all of these pieces.
Through the process of listening to others, I have been gifted with many deep truths and passionate feelings in their words. This work raises many questions in me, and it stirs a desire to ask more questions and listen more deeply to those who accompany us in our darkest moments. They possess a wealth of knowledge and experience that cannot be duplicated, and it deserves to be preserved and heard. Who knows where the path leads next? I can only leave that up to God and take the step that is right in front of me now.
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Friday, October 7, 2011
Saturday, September 19, 2009
A Day with Light
Thursday was a busy one. I drove David to school, and caught the ferry to the city for a day of meetings at Seattle Children's Hospital. You know by now that my heart is full of gratitude for the people who work there, who helped to bring light into the darkness of our child's cancer journey. Well, Thursday was full of light.First, I stopped at the volunteer office, to register a batch of quilts and a huge bag of Auntie Nadine's knitted hats, scarves and sweaters into the donation system. I filled out the forms, talked about Katie with the kind-hearted volunteers (showed her photo, too) and then took the donations up to the SCCA (Seattle Cancer Care Alliance) floor. I met Julie and Ashley (ChildLife Specialists) at their office and gave them the quilts. I took hats to the SCCA ward (and hugged one of the nurses who took care of Katie) and hats to SCCA clinic (and hugged another of the nurses who took care of Katie). Then it was time to go back to the ChildLife office and get ready for a photo shoot.
Seattle Children's Hospital puts out a magazine called "Connections," several times a year. It's a great magazine that gives updates on what's new at the hospital. David and I were interviewed for an article about ChildLife (it will come out in the Winter issue), and it required a photo of us with Julie. Unfortunately, David couldn't make it, so they got me...and a batch of the quilts! It turned out to be a wonderful opportunity to talk about Katie's Comforters Guild, while highlighting the essential role that ChildLife played in helping us.
As we were posing and trying to look natural (with me wishing I had had braces when I was young), laughing and chatting, I said to the editor of the magazine, point-blank: May I ask you a favor? Will you please mention Katie's Comforters Guild somewhere in the article? She said, Yes, and asked me to tell her about it. She said she would use the info in the photo caption...so I am now filled with hope about that. Part of the fun was seeing her (and the photographer's) response to the quilts. They wanted to see each one, hear about them, touch them, and look at the combinations of fabrics. They chose their personal favorites; they engaged with the idea and the physical reality of the quilts. That made me very happy.
After the photo shoot, Julie and I returned to her office, where we reviewed her comments on a book that I am working on for adolescents and teens who have cancer. She was full of insightful, concrete ideas. We weren't able to finish, because I had another meeting in another part of the hospital (for the Guild)...so I ran off to that meeting. Down to the coffee shop on the 1st floor, to meet with the President of the Guild Association and a board member about progress on Katie's Comforters Guild, and our next steps. It was very energizing and exciting to talk about it with them. Their experience is vitally important to my learning process and to making this new, "virtual guild" (read: no meetings!) into a thriving entity.
In the midst of this meeting, in the doorway of the coffee shop, I saw Dr. C., the genius heart surgeon who performed part of Katie's surgery. My attention veered instantly away from the meeting, to him. I love Katie's surgeons. How can I describe the love I have for the two men (and their supporting staff) who took the enormous tumor out of Katie's abdomen, and gave her a second chance at life? It's deep, passionate and real. Dr. C. came over to our table to chat.
I jumped up to hug him, and we all started to talk. I asked him if he remembered Katie's surgery (he performs A LOT of surgeries). He told me, Yes, that he had just been talking about it a few days ago. He said he was being interviewed for a book, and that the author asked him if he goes home each night and thinks about how amazing his day was, doing these surgeries. Dr. C. said, No, he doesn't, because that's his job; it's what he does. Apparently, Dr. W. (Katie's chief surgeon, who was in charge of, and performed most of, the 18-hour surgery) was standing nearby during this interview, and Dr. C. told the author that there are some surgeries that he and Dr. W. have done together that they will never forget; Katie's was one of them. I showed him the photographs of her after she recovered, just being a kid and enjoying life.
Dr. C. asked me how I am doing. I told him that doing things like the quilt project/guild helps me; that it feels good to try to bring some light to the darkness. He told me that he often uses the glassybaby candle that we gave him (we gave them to many staff members as a "thank you" when we left the hospital), and he said that the glassybaby is still bringing light. That was a lovely thing to say, and it made me happy.
After that meeting was over, I went back upstairs to finish discussing the book with ChildLife. More great input and insight from Julie and Ashley. Lots of ideas, notes and ways to go forward. Then I got into my car and drove to Ronald McDonald House to donate another huge bag of knitted hats, scarves and sweaters; then back to the ferry to come home.
Tuesday, August 25, 2009
In a Nutshell: The Story of Katie's Cancer Journey
For those of you who are new here, or who haven't gone back to read the first postings of this blog, I am posting here the "nutshell" version of Katie's cancer journey. If you want the day by day information of that journey, there is more detail in the Journal section at www.caringbridge.org/visit/katiegerstenberger.
On Oct. 10, 2006, at the age of 11 and a half years, Katie was admitted to Children's Hospital, after 3 weeks of sick days & doctor visits, with what looked like a virus (low-grade fever, extreme fatigue).
Prior to this, she was the picture of health, and had had a busy, healthy, happy summer, hiking, participating in drama camp, taking a trip to Vancouver, B.C. to see "Phantom of the Opera" on stage, and riding a wild roller coaster at a theme park, among other activities. Katie had just started middle school (6th grade) at a private academy for artistically-inclined young people.
In January, after 5 rounds of chemo, we went home for a much-needed rest, before returning to the hospital (and moving back to Ronald McDonald House) for Katie's surgery, which took place Feb. 21-22, 2007. Drs. Waldhausen & Cohen were able to successfully remove the entire tumor, which had started on the adrenal gland, encased one of Katie's kidneys, filled her inferior vena cava and entered a lobe of her liver & her heart. It took 18 hours to remove the tumor; pathology tests showed that it was indeed adrenocortical carcinoma. Thanks to Puget Sound Blood Bank & donors for the gift of life Katie received (70 units) during surgery! That gift inspired 3 blood drives in our community to (more than) replace the blood that Katie used.
Katie spent 3 weeks in Cardiac Intensive Care Unit, recuperating (the incision couldn't be closed for 2 weeks). She then moved to the surgery ward, & spent 3 more
weeks recovering there, with physical therapy and rest helping her to grow stronger. On 4/1/07, we were allowed to go home for good!
In early May, Katie had a PET scan which showed microscopic bits of cancer in her upper back (nothing emergent). Since the doctors had also found microscopic signs of cancer in her liver, scans were scheduled every 3 months (it was considered by doctors to be a slow-growing cancer). The theory was that whatever might grow would be found in plenty of time (and surgically removed, if it became a problem). Katie started a regimen of oral chemotherapy called Mitotane to help prevent the cancer from growing. It gave her flu-like symptoms, but she was still able to go outdoors and have fun.
In June, the kids went to Camp Goodtimes, and had a blast. They were starting other summer activities when Katie began to have pain in her lower back & legs. She had pain relief medicine, massage & physical therapy, but the pain increased in strength and frequency.
A CT scan revealed a new tumor, spread to Katie’s bones, spinal cord & liver. Dr. Park said there was nothing they could do to get Katie into remission. Hospice was called, the Mitotane (oral chemo) stopped, & we were given medicines to keep Katie comfortable. We went home to try to accept the news that she was going to pass away.
Katie wrote her will, had in-depth conversations about her situation, and watched a lot of TV and movies. Close friends and family visited her. She had about two weeks of increasing weakness, when it became difficult for her to walk or stand. During this time, she & David were attendants in their cousin's wedding. A week after the wedding, Katie lost the ability to move her legs. One week after that, August 16th, she passed away peacefully, with Gregg, David & me at her side.
Please accept our thanks for your love, prayers & support. We appreciate every one of you.
On Oct. 10, 2006, at the age of 11 and a half years, Katie was admitted to Children's Hospital, after 3 weeks of sick days & doctor visits, with what looked like a virus (low-grade fever, extreme fatigue).
Prior to this, she was the picture of health, and had had a busy, healthy, happy summer, hiking, participating in drama camp, taking a trip to Vancouver, B.C. to see "Phantom of the Opera" on stage, and riding a wild roller coaster at a theme park, among other activities. Katie had just started middle school (6th grade) at a private academy for artistically-inclined young people.
She was diagnosed with a neuroblastoma tumor in her abdomen and heart. Later, the diagnosis was revised to undifferentiated carcinoma (and finally, to adrenocortical carcinoma).
Pathology (using electron microscopy) led to the new diagnosis; experts at St. Jude's Hospital were consulted. Her chemo regimen was changed to address a carcinoma.
We moved from our home to Ronald McDonald House in Seattle, and there we spent the next 3 months in and out of the hospital for her chemotherapy. Each night, Katie had one parent with her in the hospital, while the other spent the night with David at RMcDH. We were together as much as possible, supporting her, with David moving (for 9th grade) to the Hutch School in Seattle, and Gregg shortening his work days.
In January, after 5 rounds of chemo, we went home for a much-needed rest, before returning to the hospital (and moving back to Ronald McDonald House) for Katie's surgery, which took place Feb. 21-22, 2007. Drs. Waldhausen & Cohen were able to successfully remove the entire tumor, which had started on the adrenal gland, encased one of Katie's kidneys, filled her inferior vena cava and entered a lobe of her liver & her heart. It took 18 hours to remove the tumor; pathology tests showed that it was indeed adrenocortical carcinoma. Thanks to Puget Sound Blood Bank & donors for the gift of life Katie received (70 units) during surgery! That gift inspired 3 blood drives in our community to (more than) replace the blood that Katie used.
Katie spent 3 weeks in Cardiac Intensive Care Unit, recuperating (the incision couldn't be closed for 2 weeks). She then moved to the surgery ward, & spent 3 more
weeks recovering there, with physical therapy and rest helping her to grow stronger. On 4/1/07, we were allowed to go home for good!In early May, Katie had a PET scan which showed microscopic bits of cancer in her upper back (nothing emergent). Since the doctors had also found microscopic signs of cancer in her liver, scans were scheduled every 3 months (it was considered by doctors to be a slow-growing cancer). The theory was that whatever might grow would be found in plenty of time (and surgically removed, if it became a problem). Katie started a regimen of oral chemotherapy called Mitotane to help prevent the cancer from growing. It gave her flu-like symptoms, but she was still able to go outdoors and have fun.
In June, the kids went to Camp Goodtimes, and had a blast. They were starting other summer activities when Katie began to have pain in her lower back & legs. She had pain relief medicine, massage & physical therapy, but the pain increased in strength and frequency.
A CT scan revealed a new tumor, spread to Katie’s bones, spinal cord & liver. Dr. Park said there was nothing they could do to get Katie into remission. Hospice was called, the Mitotane (oral chemo) stopped, & we were given medicines to keep Katie comfortable. We went home to try to accept the news that she was going to pass away.
Katie wrote her will, had in-depth conversations about her situation, and watched a lot of TV and movies. Close friends and family visited her. She had about two weeks of increasing weakness, when it became difficult for her to walk or stand. During this time, she & David were attendants in their cousin's wedding. A week after the wedding, Katie lost the ability to move her legs. One week after that, August 16th, she passed away peacefully, with Gregg, David & me at her side.
Please accept our thanks for your love, prayers & support. We appreciate every one of you.
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.
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.
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.
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.
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