A Visit with Dr. Tom

We recently had a visit from one of our favorite doctors from Seattle Children's Hospital. He brought his family with him, and it was lovely to have them as guests in our home.

I've spoken about this man before. He took care of Katie, as her attending physician, in the ICU, when she was first admitted to the hospital (with the enormous abdominal tumor, that had given no signs of its presence until it was threatening her life). Because of the tumor's location, it was determined that Katie should have her first round of chemotherapy in the ICU, where she was hooked up to several monitors all of the time, and had a nurse dedicated solely to her care. That is, a ratio of one nurse to each patient.

The ICU is not designed to administer chemotherapy; therefore, the Hematology-Oncology department sent their own nurses up to handle the drugs, and to administer each dose to Katie. The equipment is all very high-tech, but the care is personal, and the best imaginable.

When Katie was moved to the ICU, we were marveling at the size of the room that she had, all to herself, without a roommate, and the windows, view, etc. Her response was, "It's a little too high-tech for me." This is a photo from that time, before the chemo made her hair fall out.

The ICU staff make you feel that, though they have the medical expertise, you are the expert on the subject of your child. Dr. Tom is the doctor who helped me learn what rounds are, and made me feel welcome to participate in the process of reporting on Katie's condition every single morning. I loved being part of her team, and Dr. Tom treated all four of us with respect, care, humor, compassion and calmness that became the tone for the entire ward. He never wore his white lab coat; he always wore a shirt & tie, with a pullover or cardigan sweater over it. He has a quick & witty sense of humor, which bonded him with us right away. He & David immediately developed a great rapport, which continues to this day. Dr. Tom and his family hosted David on several ski outings this winter, which David loved. With Dr. Tom's sons, they have also played what is now known as "the greatest game of tag, ever." On this visit, David and the boys even enticed Tom up to ride on our rope swing.

One of the most important memories I have of being in the hospital with Katie centers around Dr. Tom. In the beginning, we continually heard "Katie could die at any moment." Since the tumor had already entered her heart, she was experiencing an irregular heartbeat rhythm that was being closely monitored. The tumor was considered "friable" (flaky and unstable), so there was constant concern that a piece of it could break off at any time, travel swiftly to her heart or lungs, and kill her, instantly. Spots had also been detected in her lungs, indicating the possibility that there were small tumors present, which could also kill her. And they were administering chemotherapy to her, which is itself composed of different kinds of poison, designed to kill cancer cells - but having the side effect of killing all fast-growing cells in the body. She was in a very dangerous situation.

Trying to care for her without alarming her, when I myself was really and truly shocked and terrified, was taking a toll on me. I didn't want to leave her at all, but we were not allowed to eat in the ICU. I would go to the break room and have graham crackers and tea, but wasn't going out to exercise or eat unless someone else from the family was with her. I was sleeping with her in the ICU at night. They gave us a pager, so that they could reach us at any time we might have to leave the unit. Even going to the bathroom was stressful, because I had to leave Katie to do it.

One day, during rounds, Dr. Tom & the team asked me if I was getting out at all, getting exercise, etc. I looked at them with tears welling in my eyes, and said, "I don't think you realize what they've told us. She could die AT ANY MOMENT, and I don't want that moment to come, and have her look around for her mother, and I'm at STARBUCKS getting a COFFEE." There was a silence, which felt sacred, to me. Just peace and compassion, filling the space around us. Then Dr. Tom said, very gently & quietly, "I don't think it's quite as imminent as that. I think you can get a coffee or go for a walk." This made a world of difference to me. It helped me to be a little more calm, and it freed me to take care of myself a bit more. That, of course, helped me to be a better caregiver to Katie.

I cannot give enough praise to the quality of care that Seattle Children's Hospital gives to its patients and their families; they call it "family-centered care," and it truly is so. Everyone, from the cleaning staff to the most eminent physician, is loving, caring, skilled and devoted to the children's welfare. It is not a place where anyone wants to have to stay, but if you do need to have medical help for your child, I can't imagine a better place to receive it. When asked to describe Seattle Children's Hospital in a word or phrase, Katie called it "hospitable." The reason that it feels this way is because of doctors like Tom. We will never be able to thank him and his colleagues enough for their care for all of us.

This relationship is an example of one of the blessings that was hidden in the tragedy of Katie's cancer: we worked with some of the greatest people we have ever had the privilege to meet. It doesn't make up for Katie's absence at all, but it is still a blessing to be recognized, and for which to give thanks.