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Cass's Blog
Cass
Boehm is a 6th grade student who has made it his life's ambition to
increase understanding and awareness of Pediatric Chiari Malformation and
raise money for much needed research. He wants kids to be able to go to
the doctor, say they have Chiari Malformation and have the doctor know and
understand the condition and that kids can be different from adults with
Chiari. In his free time he plays baseball, golf, piano, and drums.
He is also a huge Boston Red Sox fan.
Note:
The views expressed below are solely those of the author. They do
not represent the They do not represent the opinions of Conquer Pediatric
Chiari (C&S Patient Education Foundation) or its employees. The
author is not a medical doctor and does not give medical advice. Anyone
with a medical problem is strongly encouraged to seek professional medical
care.
February 2010
January was a very rough month…so many headaches, loads of dizziness and
lots of missed school! I was getting very frustrated…I HATE not feeling
well. What is worse is going to school when you do not feel well… and
trying to pretend that you do feel OK.
I did go and see a new neurosurgeon, and he thinks I have pressure on my
brainstem, so he put me in a really annoying neck collar. It is weird that
my headaches and dizziness get worse when I am in school. I think it is
because I have to look down a lot. My mom and I have seen many
neurosurgeons and told them about this, but none of them thought it was
related to the Chiari. This doctor said he could see it on my MRI, if this
is really true why didn’t the other doctors see it? My mom said she is
going to talk to some other doctors and do some research.
We have had so much snow in Virginia, that we have not had school, which
has been good for me… more snow tomorrow, but only 6-12 inches this time.
We may be in school until July. Oh well.
Until March, Cass
January 2010
Happy New Year! I hope everyone had a great holiday season. I did not
write in December. I was having really bad headaches. I tried bunches of
medicine and nothing seemed to work completely. I did find a couple of
medicines that took away most of the headache. I hate headaches! I cannot
concentrate or go to school. All I want to do is lay very still in a very
dark room. The good news is I am feeling better.
I am looking forward to 2010. I am planning to really focus on playing
golf and getting good at the drums.
My mom and her friends have already started working on the gala. It is
going to be October 15th in Washington, DC. I just know that this is going
to be our best gala yet.
I need to think of other ways to raise awareness and money for research.
The gala is great but we need to do more. There are way to many kids with
Chiari that are searching for answers and relief from pain. We just need
to keep talking about Chiari to anyone who will listen, and get the word
out there.
I saw where the Today Show did a story on dogs with Chiari, maybe they
will do one on kids. I think I will email them. Maybe everyone should send
them an email.
Happy New Year, and I hope all the kids with Chiari have a pain-free, no
surgery year in 2010!
Until February, Cass
November, 2009
It has been an interesting month… Several bad headaches, loads of
dizziness, and lots of weird chest pains. What does it all mean? Chiari
strikes again, I guess. It is so annoying because on the outside I look
fine, so when I say I am not feeling well, I get looks like “yeah right”.
Like I said at the gala, if they could only see what is going on inside of
us…it is like a war zone! The confusing part for my parents is trying to
figure when to go to the doctor and when it is just another day in the
life of a kid with Chiari.
At least right now I am feeling better, and hoping it stays that way. My
mom has been giving me lots of vitamin C and hand sanitizer every time I
turn around… so I do not get the Swine Flu. She keeps looking for places
for me to get the shot, but cannot find anywhere with H1N1 shots
available. My sister had to go to the emergency room for a broken thumb,
and she and my mom had to wear masks because so many people were sick. I
hope all kids with Chairi stay well, because this flu does not look like
fun.
Baseball is over, and it is on to golf. I am also busy playing the drums.
I love playing the drums! My drum teacher is really cool, great at the
drums and I am glad he is my teacher. In fact he is so good at the drums,
it is kind of annoying…I have a long way to go to go to be as good as him.
Maybe someday…
Until December, Cass
October 2009
WOW!!! The Pediatric Chairi
Gala was great!! We had people come from all over the country to support
us. I met so many new people with Chairi who had the same mission as
me…all devoted to raising awareness and money for research. The gala was
a huge success, and we raised a lot of money for research. It was very
exciting to see so many people attending the gala and supporting our cause
and learning a little about Chiari.
One of the
highlights of the evening was meeting a girl named Allie Bradley from Stow
Massachusetts. Allie has Chiari and her story is the exact reason we are
doing this event. Allie suffered for 7 and ½ years before getting the
correct diagnosis and some relief from her symptoms. It was great meeting
her, hearing her story, and knowing that she finally is getting the
correct treatment. You can watch her speech by clicking on this You Tube
link -
http://www.youtube.com/watch?v=lH8KoHIxEv8
It was truly
the best day of my life! I was so happy and I felt so good about myself,
and what we were trying to accomplish. Even though it was my idea, it was
really my mom and her amazing friends who put it all together! Hopefully
next year’s gala will be even better and raise more money for research.
We just need to all keep raising awareness about Chiari. How great would
it be to really Conquer Chiari – now that would be a great day!
Until
November,
Cass
September
2009
Well, it is back to school… and as you can
imagine I am just as excited as any 12-year-old boy would be… I completed
my Dragon training and I now have a really small laptop to take back and
forth to school. Being back at school also starts back my weekly
ritual of physical therapy; I have not gone as much this summer because I
have been really busy. I go to PT for my legs, which I have problems
with as a result of my Chiari. You are probably wondering like I do… how
can something in my brain affect my legs, but in my case it does! My legs
are constantly hurting, and PT helps. I also like my physical therapist a
lot. She is interesting to talk to, and has lots of stories. In fact I
think she looks forward to me coming because we have fun talking and it
makes PT go a lot faster. I try to distract her, so we take more breaks,
sometimes it works and sometimes it doesn’t.
This is a BIG month for Pediatric Chiari!
On the 25th of this month we are having the second Pediatric
Chiari Gala event in Washington DC. I am hoping we will have lots of
people attending and raise even more money than last year! My mom and her
friends have been working hard planning everything, and I think it is
going to be great. This year I get to introduce everyone during the
program. If your parents are going, please let me know and I will look for
them.
Please send any questions or comments you
have for me to my email at
cassboehm@aol.com (remember to cut and paste the email address if you
want me to get the email it won’t work if you just click on the address).
Goodbye until October!
Cass
August, 2009
I can not
believe that August is already here! Before I know it I will be back in
school. My summer has been great and I have felt pretty well…not too many
headaches, the dizziness has not been as frequent, and my fast heart beat
has not seemed to bug me as much. I think my medicine must be working,
well most of the time. I still have those occasional days where nothing
seems to make me feel better. But like most of you, I have learned to
live with it.
In a few
weeks, I will be attending Dragon camp for the 3rd time… No it
is not what you think. The Dragon is a piece of software that allows me
to write, by dictating into a microphone and then the words appear on my
screen of my laptop. It is not that I am stupid; in fact I’d like to
think I am exceptionally smart but I have a hard time forming the letters
correctly when I write. For some reason, I just can not seem to make my
hand and head work together. It is extremely annoying! The Dragon helps
me write stories, so that people can read and understand them. Every
year, I become a little better at using the software and the teacher
always teaches me a few new tricks.
Every year
when I go back to school, it always takes me some time to adjust. I have
to get up earlier, the long bus ride, the really long school day, and
having to bend my neck and look down so much. I find myself really dizzy,
lots of headaches, and my heart beats really fast a lot. Do you feel like
this in school too? The teachers and kids in the class think you are just
making up excuses to get out of doing work. Little do they know! For the
past 2 years I have missed 59 days one year and 47 days last year. I
really hope this year is better.
I would love
to hear from you. I have one question - What is school like for you? I
will try to include some of your responses in next month’s blog. You can
email me at
cassboehm@aol.com
Until
September, Cass
July, 2009
For me chiari has been a
journey. No two days have been the same, but I am sure that’s how it is
for many kids with Chiari. I was sitting at home one day after a trip to
visit several new doctors. The trip was long and frustrating. I left
without any new information or answers that helped me. Suddenly an idea
popped into my head, what if we did something that would raise money for
pediatric Chiari research?! Not really thinking about how much money we
would really need I thought lemonade stands would be a fun way to raise
money - but my mom informed me that the amount of money we would need was
much bigger than a lemonade stand. So, my mom, being the best mom in the
world, and all of her friends, being the best friends in the world, turned
my dream a reality. The reality is an annual gala event! I mean - How
great would it be to really conquer pediatric chiari?
Chiari is a tough thing to live with. I can’t tell you how many days I’ve
just felt horrible and searched for the off switch. As many of you know
Chiari is invisible to most people…and I am sure many of you, like me,
have had friends, family, teachers and doctors that have really understood
Chiari and helped you through. However, it is the ones that do not
understand that we need to make realize that Chiari is a REAL condition!
My journey with Chiari is far from over…everyday I (with the help of my
parents) continue to search for answers to help me feel better. My biggest
hope is that with research, our journeys can be a lot shorter and less
traumatic!
Until next month, Cass
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