Part One: The Run Around
We were told by Keagan's doctors to get an MRI every 6 months for the rest of his life. Well, at six months AD (after diagnosis), James and I were separated and I was living at my mom's in DEEP South Texas. I had 2 months worth of Tricare drama, which has been par for the course whenever I go to visit, because she's so far from a post or base of any kind that none of the doctors down there take my insurance (which is BOGUS to me but that could be another post in itself and I'm trying to stay focused). Long story short, a follow up MRI proved to be next to impossible, and as James and I were working to reconcile by the time the dust settled and I had an uphill fight on my hands, I decided to just wait until we got to Bragg.
When we got out to NC, I made an appointment with his primary care physician on post. As you milspouses will know, on post PCP = a certain hallway, where you take your chances on who you are seen by. Just my luck, I got a physician's assistant with crossed eyes (you try making eye contact when you can't tell which eye is the good eye and which is the bad!) and not a clue in his head of what I was talking about. I had to tell HIM about Keagan's condition, and explain what I needed from him as far as a referral for a sedated MRI, and on and on. So when we FINALLY got the sedated MRI scheduled at the on base hospital, the hospital told me that they required a sedation physical (which I felt like the PA should've KNOWN, and done, as he gave us the referral) before they could complete the procedure. Alright, fine, so we went BACK to the clinic, where I had to once again explain what I needed from the PA. He cleared Keagan for the MRI, and off we went. When we got to Womack on the day of his procedure, they hemmed and hawed around basically not wanting to take the liability of something going wrong. So they sent us home, with a referral to Cape Fear Valley hospital. I called, they didn't have the referral. I called back, they still didn't have it. After two weeks, they finally called me, only to say that they do pediatric MRIs once a week and the wait time was 6 weeks. When we fiiiiiinally got in to Cape Fear, they did the MRI with no problem.
Then came time to follow up with his PCP (the REAL PCP this time, not "Crazy Eyes"), but that was another 2 (or more?) week wait until they finally had the results in hand. Once I sat down with his PCP (who also had to look up his condition by the way... but at least she educated herself instead of just asking me for the rundown), she read off his results.
Part Two: Results
His CM has progressed in 10 months by about 40-50%. He now has a low-lying portion that is descended by about 10mm. There is still no fluid around his brain (which could cause seizures or brain damage), but the radiologist who made the report requested that further imaging of his spine to check for damages further down. We currently have a follow up scheduled with a pediatric neurologist/ neurosurgeon on February 4th.
I'm not sure how to put my feelings into words at this point. To say that I was hoping for a miracle is the biggest understatement. I know that I prayed so hard for this to just be a fluke, to disappear, and hearing that it had progressed to such an extent was a sucker punch to my heart. I don't have tears for it yet, although they clog my throat as I write this, because I don't know what happens next. Surgery is a very strong possibility. There's just as much possibility that the doctor will tell us to continue to wait and watch. It's terrifying to consider that this lurking danger is moving slowly forward, trying to claim my son. I have no means to fight, except to continue to watch and pray. I have to depend entirely on God and medicine to save my baby... and it's such a helpless feeling.
Thursday, January 13, 2011
Monday, January 10, 2011
aftermath: dealing with the diagnosis
Disclaimer: This story is all from my perspective. I can only speak of James' actions, not always the thoughts behind them. Someday, I hope he will tell his story, but until then, this is my version of it.
After James and I were educated about our son's diagnosis, my first reaction was basically, "handle with care." I tried to hold him closer and kiss him more, and appreciate every smile. I tried to think of all the things he could still do, rather than consider what he was unable to. Walking out of the doctor's office, James seemed angry. He made a few remarks that made me angry in return, because I felt like he was blaming Keagan for something that he could not control. I can only imagine how hard it is as a father to hear that your son can't play football, or even jump on a trampoline. Most of James' dreams for Keagan at that time, I think, involved a ball in his hands and a cheering crowd. I can't imagine having all of those hopes ripped from you in an instant.
As time has passed, James seems to have let go of a lot of his anger, and eventually we have learned to come together about everything. We've begun to balance each other out-- James doesn't allow me to coddle him overly, and I don't allow him to be harsh with him or feel sad that he can't play football-- we'll just channel his killer throwing arm over to baseball (which he can play)! It's still trial and error, because when Keagan starts holding his head and acting strangely, I assume something is wrong. James encourages me to trust my gut, but also to wait it out and look for more signs than just a headache. Our son is not broken, but we do live our lives with the possibility that one false move could change our lives forever. We make every effort to keep the quality of his life the same as any other little boy, although at his age there isn't much he has to miss out on... yet. Neither one of us is looking forward to the day when Keagan asks to sign up for pee-wee football, or when he goes to a friends' house and has to be told why he can't simply jump on the trampoline with his friends. We still argue about who has to field that conversation-- rock, paper, scissors at this point has the job falling to him, but I'm sure it will be challenged in the years to come. Since it's not an obvious issue, and I'm unsure how much pain it actually causes him day-to-day, I can imagine Keagan will try to defy us, but I pray that there is never a consequence for the natural and inevitable defiance of an already independent child trying to test his limits.
After James and I were educated about our son's diagnosis, my first reaction was basically, "handle with care." I tried to hold him closer and kiss him more, and appreciate every smile. I tried to think of all the things he could still do, rather than consider what he was unable to. Walking out of the doctor's office, James seemed angry. He made a few remarks that made me angry in return, because I felt like he was blaming Keagan for something that he could not control. I can only imagine how hard it is as a father to hear that your son can't play football, or even jump on a trampoline. Most of James' dreams for Keagan at that time, I think, involved a ball in his hands and a cheering crowd. I can't imagine having all of those hopes ripped from you in an instant.
As time has passed, James seems to have let go of a lot of his anger, and eventually we have learned to come together about everything. We've begun to balance each other out-- James doesn't allow me to coddle him overly, and I don't allow him to be harsh with him or feel sad that he can't play football-- we'll just channel his killer throwing arm over to baseball (which he can play)! It's still trial and error, because when Keagan starts holding his head and acting strangely, I assume something is wrong. James encourages me to trust my gut, but also to wait it out and look for more signs than just a headache. Our son is not broken, but we do live our lives with the possibility that one false move could change our lives forever. We make every effort to keep the quality of his life the same as any other little boy, although at his age there isn't much he has to miss out on... yet. Neither one of us is looking forward to the day when Keagan asks to sign up for pee-wee football, or when he goes to a friends' house and has to be told why he can't simply jump on the trampoline with his friends. We still argue about who has to field that conversation-- rock, paper, scissors at this point has the job falling to him, but I'm sure it will be challenged in the years to come. Since it's not an obvious issue, and I'm unsure how much pain it actually causes him day-to-day, I can imagine Keagan will try to defy us, but I pray that there is never a consequence for the natural and inevitable defiance of an already independent child trying to test his limits.
Saturday, January 8, 2011
journey to a diagnosis
I'll start at the beginning and go from there. Quick back story on us, if you don't know us very well-- James is 29, active duty Army, has been in for 4 years this month, did a year long tour to Afghanistan right after Keagan was born, and is now at his second duty station, Fort Bragg, NC (Fort Drum, NY before that). I'm Ashley, I'm 22, and I'm in school pursuing my associate's in medical assisting and then planning to get my nursing degree after that. James and I have been married for about 3 years and together for 3 1/2 (we met in basic training). Keagan is two years old now, and was born on October 29, 2008 in a huge snowstorm in NY after a power outage at the hospital (which made me soooo thrilled let me tell you). He is obsessed with Mickey Mouse, anything with wheels on it, daddy's video games, popcorn, and carrying every. single. stuffed. animal. around with him at all times. He loves to give hugs and kisses, and identifies EVERYTHING, even if he's wrong.
He seems like a completely normal boy, but I guess he's not. It's hard for me to accept that all the time, because he appears completely perfect, and what mom wants to consider that anything is wrong with her child? In January of 2009, just after James got home from Afghanistan, we started to notice that Keagan was acting as if he had headaches, crying more often, and seemed dizzy and disoriented as the day progressed, and he was falling down. A LOT. I'm talking like 40 times a day, for no reason, just step, step, faceplant; or even standing still, wobble, faceplant. He had been walking at this point for about 4 months with no noticeable balance issues, so when we noticed it, I just made him a routine appointment and took him to see his pediatrician on base. I assumed, worst case scenario, that he was like my brother and had some inner ear infections. The doctor did a thorough check of him and said that he was 100% healthy. And then she looked me in the eye, put her hands on his head and said, "take him to the emergency room right now. I've never had something like this turn out to be nothing, and I just have a feeling." Wide eyed and trembling, we went straight to Syracuse University Hospital, almost two hours away. We checked him in, and they did a sedated MRI on him. A few hours and MANY neurological tests later, a resident on the neuro service came in and said, "he has a Chiari Malformation." I asked what the heck that was, and he said something unintelligible that gave us the impression that it was some type of tumor that would require immediate surgery. Then he just WALKED OUT! A nurse, God bless her, came in a bit later, saw the panic on our faces, and went right out to Google the diagnosis for us. She came back and informed us (because as it turns out, this is a pretty rare condition, especially in such a young baby) that it was not a tumor, and while she couldn't say whether he'd need surgery or not, that the doctor had misinformed us.
What we began to uncover was this: "Chiari type 1 malformations (CM1) occur in the region where the brain and the spinal cord join. In this disorder, the portions of the brain called the cerebellum and/or brainstem lie lower than usual. Often, a portion of the cerebellum called the cerebellar tonsils protrudes out of the base of the skull into the spinal canal. This protrusion causes pressure in the brain, contributing to the symptoms people experience. The cause of CM1 is not known. Some CM1 cases are believed to be present at birth. There are many symptoms associated with CM1. These symptoms may include headaches, especially at the base of the skull, dizziness, double vision, weakness in the arms, and/or difficulty walking. When symptoms are present, they are often vague or nonspecific. As a result, the diagnosis of CM1 is often delayed until more severe symptoms present themselves or after current symptoms persist for some time." full text
When we got back to his pediatrician, she told us that it was not an extreme case, as the low lying portion of his brain was only 5-7mm descended. She told us to watch for seizures, muscle weakness, gave us concussion symptoms in case a hit was too hard, and taught us how to check for signs that he was worsening. Otherwise, it was basically a watch and wait type of diagnosis. We were told to follow up with MRIs every 6 months for the rest of his life, avoid contact sports and trampolines, and help him be as normal as possible. Many people have CMs and never have any idea, many people don't find out until much later in life, and many people are fully functional with zero progression for their entire lives. A year later, we are only beginning to understand how this will affect all of our lives in many different ways.
I'll post again soon with a more recent update, but I figure the back story is enough for one post.
He seems like a completely normal boy, but I guess he's not. It's hard for me to accept that all the time, because he appears completely perfect, and what mom wants to consider that anything is wrong with her child? In January of 2009, just after James got home from Afghanistan, we started to notice that Keagan was acting as if he had headaches, crying more often, and seemed dizzy and disoriented as the day progressed, and he was falling down. A LOT. I'm talking like 40 times a day, for no reason, just step, step, faceplant; or even standing still, wobble, faceplant. He had been walking at this point for about 4 months with no noticeable balance issues, so when we noticed it, I just made him a routine appointment and took him to see his pediatrician on base. I assumed, worst case scenario, that he was like my brother and had some inner ear infections. The doctor did a thorough check of him and said that he was 100% healthy. And then she looked me in the eye, put her hands on his head and said, "take him to the emergency room right now. I've never had something like this turn out to be nothing, and I just have a feeling." Wide eyed and trembling, we went straight to Syracuse University Hospital, almost two hours away. We checked him in, and they did a sedated MRI on him. A few hours and MANY neurological tests later, a resident on the neuro service came in and said, "he has a Chiari Malformation." I asked what the heck that was, and he said something unintelligible that gave us the impression that it was some type of tumor that would require immediate surgery. Then he just WALKED OUT! A nurse, God bless her, came in a bit later, saw the panic on our faces, and went right out to Google the diagnosis for us. She came back and informed us (because as it turns out, this is a pretty rare condition, especially in such a young baby) that it was not a tumor, and while she couldn't say whether he'd need surgery or not, that the doctor had misinformed us.
What we began to uncover was this: "Chiari type 1 malformations (CM1) occur in the region where the brain and the spinal cord join. In this disorder, the portions of the brain called the cerebellum and/or brainstem lie lower than usual. Often, a portion of the cerebellum called the cerebellar tonsils protrudes out of the base of the skull into the spinal canal. This protrusion causes pressure in the brain, contributing to the symptoms people experience. The cause of CM1 is not known. Some CM1 cases are believed to be present at birth. There are many symptoms associated with CM1. These symptoms may include headaches, especially at the base of the skull, dizziness, double vision, weakness in the arms, and/or difficulty walking. When symptoms are present, they are often vague or nonspecific. As a result, the diagnosis of CM1 is often delayed until more severe symptoms present themselves or after current symptoms persist for some time." full text
When we got back to his pediatrician, she told us that it was not an extreme case, as the low lying portion of his brain was only 5-7mm descended. She told us to watch for seizures, muscle weakness, gave us concussion symptoms in case a hit was too hard, and taught us how to check for signs that he was worsening. Otherwise, it was basically a watch and wait type of diagnosis. We were told to follow up with MRIs every 6 months for the rest of his life, avoid contact sports and trampolines, and help him be as normal as possible. Many people have CMs and never have any idea, many people don't find out until much later in life, and many people are fully functional with zero progression for their entire lives. A year later, we are only beginning to understand how this will affect all of our lives in many different ways.
I'll post again soon with a more recent update, but I figure the back story is enough for one post.
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