If someone were to have asked me what I would want in my child's oncologist, back when Erica was born, I probably would have given them a strange look, "oncologist"?, why would my child need an oncologist? Then, I would have given it some thought and then responded with something about bedside manner and medical expertise. How would I have known the phenomenal spectrum of skill required to be my child's oncologist?
~~~~~~~~Dr. Taylor notified us, at our last appointment, that the UC System has decided to cut the Pediatric Stem Cell and Bone Marrow Transplant Program at UCDMC. He explained the situation with a great deal of composure but this was Dr. Taylor's program and I am certain this did not go down without a fight . . . but nevertheless, it was his program and I can only imagine the disappointment.
So Dr. Taylor will take some time to conduct research and then, eventually move to his next endeavor. Erica will continue to see a doctor for post-transplant care at UCD Children's Hospital, but it will not be Dr. Taylor . . .the one with whom this journey has taken place.
It got me thinking about the qualities that this man possess, about how our experience would have been different if it were to have been a different doctor, about how special and unique the whole doctor-family relationship is in these cases.
I remember when we met Dr. Taylor, only two days after Erica's diagnosis. The first doc was on-call the night she was diagnosed and ultimately, I think he was good for breaking the news but it was also nice to be gently placed in the hands of Dr. Taylor. When we met him, he was very casual and familiar, he looked at bit like a surfer and had a friendly smile; he spoke about the test results and gave a short road map of additional testing that would take place within the next 24 hours; he didn't go beyond that. He also had a reason to think that the diagnosis could be something different, less serious, and although that was not the case, I remember feeling my first twinge of hope.
Dr. Taylor never made us feel like he had something more pressing or important to do, he never made us feel like our questions or observations were silly or stupid, he never made us feel like there was no room for hope. Those are important qualities; qualities I may not have thought of had I not gone through this experience . . . and there are others . . .
Dr. Taylor was always accessible; I can't think of a time that we paged him and did not get a prompt call back. No matter what time of the day he would say, "Top of the morning to you!" That says a bit about his attitude; it was always "top of the morning", there was always a day ahead. Some people along the way commented on his optimism as though it were too much, not realistic enough but we found it to be refreshing and, at times, it was all that we had to hold on to. When he needed to, Dr. Taylor gave us news in pure fact, no fluff. When he called us at 7:30AM on October 4th, 2007, he was very serious, he said that if we were not sitting down, we should. He then reported that the last spinal tap contained leukemia cells. After some silence, he spelled it out, "Erica's leukemia has relapsed". He allowed us some more time of silence and then proceed to explain the next couple of steps, very clear about the fact that she would need to go to transplant. And then said that we would talk again later. My point is that Dr. Taylor's range was always impressive to me and we used him as a barometer for how concerned we should be at any given point in time.
Dr. Taylor definitely allowed us to feel some sense of control with Erica's care; he'd ask us, in many instances, "what would you like to do?" as it related to pain management or timing of spinal taps and sedation options. We even participated in the initial decision to hold off on the bone marrow transplant in June of 2007. Our thoughts and opinions were always well respected by both Dr. Taylor and our nurse coordinator, Kay. Dr. Taylor and Kay truly made this journey manageable. Never once did we feel that Erica would be better cared for anywhere else.
Only now could I answer the question about what I would look for in my child's oncologist; for that I am both saddened by the fact that it was a reality but also privileged to have been shepherded by this man who, not only had all of the medical skill but also became a friend and who always remained one of Erica's biggest fans.
There is so much that could be said but I will leave it at that. It is an absolute loss to let this program go. It was God's perfect timing . . . Erica was able to be treated at UCD Children's Hospital, close to home and family; she was lucky enough to have Dr. Taylor and Kay as her primary team and she received a successful bone marrow transplant.
~
Dr. Taylor,
We will never be able to put into words our gratitude and respect for you. Erica will always know how instrumental you and Kay were to her survival at such a young age. Our hope now is that we will be able to send you Graduation and Wedding announcements . . . that Erica's life will be free from cancer.
We will never be able to put into words our gratitude and respect for you. Erica will always know how instrumental you and Kay were to her survival at such a young age. Our hope now is that we will be able to send you Graduation and Wedding announcements . . . that Erica's life will be free from cancer.
Thank you, from deep down, in places that we never knew existed.
From all of our family and friends, thank you.
~Megan
Having Paige here . . . I wonder how life was without her, she's just part of this little family now and we love and kiss on her every day! Erica is so good with her, very gentle and caring. She tells me when Paige "needs her mommy" or "wants to eat". She's a natural!
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