Here's what I thought about as Amy drove us to MDA for a 7:30am appointment today...
"Are you sure this is nothing serious? I mean, I knew he would be slow on some things but isn't it abnormal to be getting worse at some milestones?"
"I'm sure it's nothing. This is more than likely just the two steps forward one step back of having a special kid like this. There will be times when your heart breaks because he can't do the simplest things, then other times when you'll cry tears of joy because he surprises you with amazing success at something you thought he'd never do."
I was especially proud of that last little Bly-ism of encouragement, perfectly timed with a hand gently placed on the shoulder. From the moment I saw this teary-eyed shaky-voiced mom arrive to the registration desk just before closing time one Sunday night in September 2012 with her giggling happy little boy, I knew my main job was going to be confident reassurance, whatever she was bringing him in for. Of course she was extra nervous, what with a vulnerable Down Syndrome child, but urgent care late on a Sunday was surely not the place to get months of "unsteady wobbly walking" addressed, especially when that symptom was not even demonstrable during the visit. Referral to Special Services and we close up shop for the night.
Well this mom was not reassured. I had listened to her words but not to her teary eyes and shaky voice. She knew something was wrong. She knew her child's incoordination was not just a tick-box in what to expect from a child with Down Syndrome. She took him back to another clinic 2 days later. He was subsequently admitted to the hospital for workup of his ataxia. He was discovered to have an inoperable pontine glioma. Now I see his forever smiling 4 year-old face every time I go to clinic, as the picture from his memorial service last May hangs on the bulletin board in our staff room.
It would not have made a bit of difference to his ultimate outcome had I sent him into the hospital 2 days sooner. But it may have made a world of difference to his mom...to have seen a doctor that Sunday night who listened a little more closely, took the problem a little more seriously, and did not simply provide a trite Hallmark card moment and an escort to the exit. I know that at least a small part of her will always wonder...could that 2 days have made a difference?
Here's what I thought about as Amy drove us home to Galveston from MDA today...
I was fortunate enough to be completely asymptomatic while my glioma grew for months or even years. I was fortunate enough to have a seizure in front of 60 medical students and a half-dozen faculty, a clearly demonstrable and undeniable symptom. I was fortunate enough to have a wife who knew something was wrong and didn't let me drive. I was fortunate enough to have her cool head arrive on the scene simultaneous with 2 paramedics I've known for 20 years. I was fortunate enough to have my very best friends and most talented colleagues already waiting in the ER upon my arrival to expedite my workup. I was fortunate enough to have doctors caring for me in the hospital who would not have dismissed hearing music in my head as "nothing." I was fortunate enough to have a readily identifiable tumor located in a place that is easily accessible to surgery, with very little surrounding area of critical brain function.
I was fortunate enough to have a network of former and current students, residents, colleagues, and friends making calls and sending emails to get me appointments with specialists both here and at MDA within days that would have otherwise taken weeks. I was fortunate enough to meet with a neurosurgeon at MDA who only operates on gliomas, and was candid and respectful enough to tell me that the surgeon at UTMB is excellent and could perform my surgery very well. I was fortunate enough that he reiterated that he only operates on gliomas. I was fortunate enough to have a much trusted and valued friend, who now knows oncology better than I ever will, bluntly instruct me in a way that only she can, that the best predictor of long term remission in my condition is the effectiveness of the initial surgical resection.
Here's what I'll be thinking about when I go under the knife at MDA in a few weeks...
"Are you sure this is nothing serious? I mean, I knew he would be slow on some things but isn't it abnormal to be getting worse at some milestones?"
"I'm sure it's nothing. This is more than likely just the two steps forward one step back of having a special kid like this. There will be times when your heart breaks because he can't do the simplest things, then other times when you'll cry tears of joy because he surprises you with amazing success at something you thought he'd never do."
I was especially proud of that last little Bly-ism of encouragement, perfectly timed with a hand gently placed on the shoulder. From the moment I saw this teary-eyed shaky-voiced mom arrive to the registration desk just before closing time one Sunday night in September 2012 with her giggling happy little boy, I knew my main job was going to be confident reassurance, whatever she was bringing him in for. Of course she was extra nervous, what with a vulnerable Down Syndrome child, but urgent care late on a Sunday was surely not the place to get months of "unsteady wobbly walking" addressed, especially when that symptom was not even demonstrable during the visit. Referral to Special Services and we close up shop for the night.
Well this mom was not reassured. I had listened to her words but not to her teary eyes and shaky voice. She knew something was wrong. She knew her child's incoordination was not just a tick-box in what to expect from a child with Down Syndrome. She took him back to another clinic 2 days later. He was subsequently admitted to the hospital for workup of his ataxia. He was discovered to have an inoperable pontine glioma. Now I see his forever smiling 4 year-old face every time I go to clinic, as the picture from his memorial service last May hangs on the bulletin board in our staff room.
It would not have made a bit of difference to his ultimate outcome had I sent him into the hospital 2 days sooner. But it may have made a world of difference to his mom...to have seen a doctor that Sunday night who listened a little more closely, took the problem a little more seriously, and did not simply provide a trite Hallmark card moment and an escort to the exit. I know that at least a small part of her will always wonder...could that 2 days have made a difference?
Here's what I thought about as Amy drove us home to Galveston from MDA today...
I was fortunate enough to be completely asymptomatic while my glioma grew for months or even years. I was fortunate enough to have a seizure in front of 60 medical students and a half-dozen faculty, a clearly demonstrable and undeniable symptom. I was fortunate enough to have a wife who knew something was wrong and didn't let me drive. I was fortunate enough to have her cool head arrive on the scene simultaneous with 2 paramedics I've known for 20 years. I was fortunate enough to have my very best friends and most talented colleagues already waiting in the ER upon my arrival to expedite my workup. I was fortunate enough to have doctors caring for me in the hospital who would not have dismissed hearing music in my head as "nothing." I was fortunate enough to have a readily identifiable tumor located in a place that is easily accessible to surgery, with very little surrounding area of critical brain function.
I was fortunate enough to have a network of former and current students, residents, colleagues, and friends making calls and sending emails to get me appointments with specialists both here and at MDA within days that would have otherwise taken weeks. I was fortunate enough to meet with a neurosurgeon at MDA who only operates on gliomas, and was candid and respectful enough to tell me that the surgeon at UTMB is excellent and could perform my surgery very well. I was fortunate enough that he reiterated that he only operates on gliomas. I was fortunate enough to have a much trusted and valued friend, who now knows oncology better than I ever will, bluntly instruct me in a way that only she can, that the best predictor of long term remission in my condition is the effectiveness of the initial surgical resection.
Here's what I'll be thinking about when I go under the knife at MDA in a few weeks...
-kpb 9/3/13
Here is an amazing thing she said to me: "Dr Bly, you have nothing to feel guilty about...you gave me two more days at home with him before everything changed forever." Profoundly humbled.
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