Dear Dr. Marcin,
Today marks 14 years since we had the pleasure of your company in the PICU at UC Davis Children’s Hospital, albeit under dire circumstances. Although those years have likely dimmed the memory of our family, they have not altered ours of you, or the week that our daughter Kelly spent on your service.
I will quickly recap the events of Feb 29, 2004. Our family had skied the day before at Dodge Ridge, and Kelly, who was six years old, suffered a left basal ganglia ischemic stroke while sledding on the 29th. I only mention the day before because it was a topic of great debate regarding whether hers was a traumatic or atraumatic cerebrovascular accident (CVA). At the end of that very long day, Kelly was admitted to the separate glassed-in area of your PICU where she stayed for six days. Although no definitive etiology was ever obtained, the best theory was (and remains) a left ICA dissection.
I have been thinking about the events of that day and that week, as I do each year at this time, and about all that has transpired in the many years since, and, of course, you came to mind. I thought I might write you a message to thank you again, and to update you on Kelly’s life in the intervening years. First and foremost, thank you so much again for being the voice of calm and reason during our stay there, and for obviously caring for Kelly as much as if she had been your own daughter because that was plain for everyone to see. A teaching hospital is a wonderful place for a gravely sick child, but it comes at a price, namely a gaggle of young residents all looking to impress the parents of their patients with how brilliant they think themselves to be, and to influence the course of treatment whenever possible. Such was the case there, but I still view that price as negligible compared to the care and compassion Kelly received during her stay. After one day there, it was clear that we needed a single point of contact to coordinate her treatment, and I asked that you be that for our family, and you did that to perfection.
I don’t think you could know the stress you kept us from, as we were already quite overloaded simply with accepting what had happened to Kelly, and you were a marvelous and calm buffer between us and all of those unnecessary distractions. A perfect example of this was the great debate regarding whether Kelly should be put on ASA or Coumadin. There were as many opinions as there were physicians who felt compelled to share them, and you were the only one to tell us that there really was simply not enough data – you had searched for three hours that day, and come up short on sufficient literature. Your opinion was that Coumadin was the most conservative route (which we agreed with), and Kelly spent the next six months on it without incident. She continues today on a daily baby aspirin, and will for the rest of her life.
We left UC Davis Children’s Hospital’s PICU to be closer to home in San Jose, and Kelly spent the next three weeks in the Santa Clara Valley Medical Center because there was a physiatrist there we wanted her to work with. It was a very busy time – Kelly received physical therapy, occupational therapy and speech therapy daily for those three weeks, and she continued that after her discharge for about a year, after which she continued with PT alone. Her stroke was broad in nature, and just about everything had been affected.
Her life for the next many years consisted almost exclusively of school, therapy sessions and home exercises. While that sounds simple enough, she actually had no free time whatsoever, as her school work typically continued several hours into each evening. She did manage to play with her soccer team for a few years, although her abilities were of course far different. Her progress overall was slow but steady, and by the time she reached high school, Kelly was back at grade level. The only medical complication she has experienced since 2004 was a seizure she had during her senior year of high school. She is on trileptal for that, and that will continue for all of her life as well. Fortunately, she has been seizure-free since.
Kelly has absolutely traveled the longest road I have ever witnessed another human being walk, and it is simply miraculous how well she is doing today.
You will likely not be surprised, but she has no fear as far as I can tell. She is the first to try anything new, and when I took her zip lining for her high school graduation she volunteered to be the first to go, and jumped off of the platform (we were 100 feet up). She would love to skydive, but her neurologist has recommended against that (and anything that might jar her neck similarly), but aside from that, she doesn’t view her limitations as limiting her life. She still wears an AFO and walks with a limp. Interestingly, she still runs better than she walks. As we were told might happen, her right hand and arm have been the least cooperative, and she has no fine motor control over them despite years of trying different therapies. She finds Botox injections helpful, and gets them when the tone becomes annoying to her.
She earned a driver’s license, and her only limitation is the use of a left-foot accelerator pedal adapter. She adapted her learning style quite well, and knows how to handle her own educational needs better than I would have hoped for.
She is a junior at Sonoma State, majoring in psychology, and doing very well – she even earned a 4.0 GPA last semester. Just writing that sentence is still a very emotional experience for me. She is hoping to spend next year studying in England, which she is happy about, and which her mom and I are a bit sad about, but I am not one to hold her back from life.
As a cap to this story, our family finally went back to the mountains (Bear Valley) in 2015 for the first time since 2004 and enjoyed the snow again. Kelly was amazingly able to learn to snowboard in just an hour – the only unusual part of her form is how she stops because she just falls down. It is cute, but in watching her snowboard, the enormity of it is not lost on me for a single second.
I hope and trust that these many years have been kind to you and your family, and that all is well with you and yours. I simply cannot tell you enough how thankful we were that you were the PICU attending physician during Kelly’s stay. And so as inadequate as words are, thank you again for being exactly what we needed.
All the best,