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Sammi Jean Elisabeth Robertson 
This is me about two years ago at the first annual Zoe Bergen Childhood Cancer Foundation Redwings Alumni Hockey Game.
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Bravery isn't being fearless...
It's doing the fEARED.
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This is my credo that I came up with a couple years ago.
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For starters my full name is Samantha Jean Elisabeth Robertson. Don't look at me, my parents came up with that ridiculously long name! Luckily for me, when my mom put up this site, she had the brilliant notion to shorten that to Sammi Jean. Now most people call me Sammi. I'm 16 years old and I have brown-green eyes and blondish-brownish curly-wavy hair. Again, don't blame me...apparently my parents couldn't decide on one middle name, much less one eye color, one hair color or one hair texture. I have a 23 year old brother named Nikolaas, a 20 year old sister named Caitlin and a 14 year old brother named Alec. I have a dad named Chris, and a mom named Ellen...they would probably both kill me if I divulged their ages so lets not go there shall we? Nik and Cait live in Chicago, and Dad lives in Wyandotte, MI, and Mom lives in Westland, MI.
But I'm getting off track. The reason my mom made this site is because my patient file at Childrens Hospital of Michigan and the filing cabinet she kept at home was getting too full of medical documents and papers, and our phone was too full of messages from people wondering how I was doing!
On March 27th, 2003 I was diagnosed with a pituitary mass during a CAT scan. My dad had rushed me by Ford Windstar to the local hospital because I was vomiting and had a stiff neck and a horrible headache. When they found the mass, the doctors at the local hospital in turn rushed me by ambulance to Childrens Hospital of Michigan. There I was diagnosed with Meningitis and was hospitalized for five days, receiving Antibiotics because they didn't know what type of Meningitis it was, then sent home. I had MRIs and Spinal taps also, but I don't remember too much of the first two days...I was sleeping a lot. They later realized the mass had burst inside my head(yeah, I know...eww)and released torrents of goodness-knows-what onto my brain and caused the infection. So the type of Meningitis I had was Chemical Meningitis. And that means that the antibiotics and the two weeks worth of Diarrhea was completely and utterly unnecessary. Hmph, "Better safe than sorry!", I guess.
After that, I was having a lot of headaches and they kept getting worse until December 4th, 2003 when my neurosurgeon placed a LP shunt. Later, in May of 2006, my neurosurgeon replaced that shunt with an LA shunt due to the fact that I developed a Pseudocyst in my abdomen because I wasn't reabsorbing the CSF after my shunt was spitting it out. I had acquired Communicating Hydrocephalus because of the Meningitis and the inflamation and scarring it caused. After that first surgery I felt better, but a month later the shunt was found to be infected and had to be replaced. I was homeschooled for the rest of that that year(fifth grade). I was also homeschooled for half of sixth grade, half of the seventh grade, almost all of eighth grade and all of ninth grade. I am now in my second year as a freshman, because I was in the hospital so much last year, and I am now starting a program called 'Connect'. It will allow me to do most of my schooling from home. Between the first surgery in December of 2003 and my last one in October of 2008, I have had 37 surgeries. Most were related to the shunt but I had one in July of '04 for a Broviac placement and I had a craniotomy also in July of '04 to remove the mass which was thought to be a Rathkes Cleft Cyst. I have had several different doctor's opinions as to what the mass was. According to my Primary Neurosurgeon, Doctor Sood, it acted like a Rathkes Cleft Cyst but looked like a Craniopharyngioma. Dr. Frim from Chicago thought it was a Dermoid or an Eperdermoid and Dr. Allan from New York City thought it might've actually been a Germinoma at one point....well, you get the picture. But officially and legally on paper, the doctors think it was a Rathkes Cleft Cyst/Pouch.
Now, almost six years, five new drug allergies(including an extremely unpleasant reaction to Reglan, which caused my eyes to roll off to the left, my muscles to clench, and my teeth to incessantly grind), and 37 surgeries later, I am happily parted from whatever it was! I have Adrenal Insufficiency, Growth Hormone Deficiency(does anyone know the difference between insufficiency and deficiency??), and Diabetes Insipidus. The DI isn't at all related to normal "sugar" diabetes...the only thing that's the same is the name and I'd like to know whose bright idea that was and the reasoning behind it! Anyway, I have DI and AI because during the craniotomy my Pituitary Gland was damaged and as a result I don't produce Antidiuretic hormone or the Adrenal Gland stimulating hormone. ADH is the hormone that activates your kidneys so about every twelve hours when my Desmopressin runs out, I could potentially dehydrate to death unless I took it. I have the GHD because the pressure of the tumor damaged that part of my Pituitary Gland. And of course I have the Hydrocephalus and Daily Chronic Headaches but they're more Constant Chronic Headaches because they literally never go away. The headaches are definitely the hardest thing I have to deal with now that the tumor is gone. I also have Gastroesophageal Reflux Disease(GERD)because of the steroids I'm on for the Adrenal Insufficiency(AI).
Some of the medications you'll read about on this site are Nutropin, which is the Growth Hormone Injection, Cortef(for the AI), Desmopressin(or DDAVP for the DI), and Keppra, which I have recently started to try and get, and keep, a lid on my headaches! I take others(lots of others)but either I won't need to mention them or they're self explanatory or they are pretty well known anyway...like zofran or vicodin.
These are some of my friends from Camp Sunshine who have webpages...please take the time to visit and leave them a quick note!
Jaclyn
Angel Heather
Lily
Lizzie
Lexie
Luke
Michael
Lauren
Marissa
Elizabeth
Carly
Mikaela
Nathan
Neal
Angel Kyle
Angel Devon
And my brother Alec's site,
Alec
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And lastly, here are some foundations that have helped me a lot.
This is the website that is home to "The Spoon Theory". It explains rather thoroughly and simply how it feels to have an "invisible" disease, and how hard it is to do the most basic daily activities when you are in chronic pain.
The Spoon Theory
This is the foundation that had me adopted by The University of Michigan, Women's Softball team! Jaclyn, and her dad Denis and her mom, Lynda have gotten a bunch of kids with brain tumors and spinal tumors, and their siblings too, adopted through their foundation...and it's so cool! Check out this awesome and uplifting foundation.
Friends of Jaclyn
This is Rainbow Connection, the amazing foundation that granted me my wish trip to Myrtles Plantation.
Rainbow Wish Connection
Also, you should check out Myrtles Plantation! It was so cool, and the owners and people who worked there were just...so cool!
Myrtles Plantation
This is a great foundation that will pair you up with a person with health problems that have a website. It's a great way to cheer someone up and it's so easy to do! Please sign up with this foundation and help one adult, teen, or child and their families by simply leaving a note on their website a few times a week!
Cole's Foundation
Last but most definitely not least, is Camp Sunshine! This is the most spectacular and magical place, and 'The Best Place in the World'!
Camp Sunshine
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FIGHTERS AND SURVIVORS
We are kids who were sick,
then and even now.
Though for all of our bravery,
we never have to bow.
We just bite our lip
and keep pushing on
so people are amazed
at how we come along.
We drink lots of liquid stuff
and take pills everyday
so someday the evil
in our our heads will go away.
In the hospital
and out again
Our lives could never
be the same.
The scars on our heads
and tubes in our chests
are the only symbols
to show our best.
We keep on fighting,
We keep on living,
We keep on learning,
We keep on giving.
We are fighting everyday
just to survive.
We are living with the
hope to revive.
We are learning
the meaning of prayer and
we are giving the soul
yet another layer.
We want to get better
so we learn to be fighters.
We are children and...
We are Brain Tumor Survivors!
~I wrote this one school day in seventh grade. It is the first poem I ever read at Camp Sunshine and it remains my favorite!~
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**Some terms, abbreviations, and little facts you might need to know**
-CSF: This stands for Cerebral Spinal Fluid, which is the fluid that cleans and cushions the brain and spinal cord.
-ICP: This stands for Intracranial Pressure.
Normal ICP's are usually from 0 to 20. For me, my pressures are usually a bit lower...my normal is from -5 to about 10.
-The normal Sodium levels in a person are from 135 to 145. Sodium is one chemical level that cannot be even a little off. Low sodium means over-hydration and high sodium means dehydration. Usually low sodium is much more dangerous and harder to control once you get over-hydrated. Low sodium can even result in seizures.
-LP: This stands for Lumbar-Peritoneal--This is the type of shunt that goes from your lower back to the front of your abdomen.
-LA: This stands for Lumbar-Atrial--This is the type of shunt I currently have...it goes from my lower back up over my ribs, threads through the Subclavian Vein, and reaches into my heart.
-Medos valve: I have two valves that are a part of my shunt-I have a regular one, but also an adjustable one called a Medos valve. The neurosurgery nurses just hold a magnet over the valve and it can be adjusted to different flow levels. It goes from 10 to 200. The higher the number, the less work it does and the less CSF it is transporting. A lower number means the valve is doing more work and transporting more CSF. I am now set around 180/190.
-POTS: Postural Orthostatic Tachycardia Syndrome- A disorder that is characterized by the inability to effectively adjust to an upright position, and results in low blood pressure...which results in dizziness, pressure headaches upon standing, and general clumsiness. It would account for how I met my new friends, Mr. Doorway and Ms. Wall, and why I've been having fast heart rates at night.
**Some little fun facts you might want to know**
Birthday: February 10th, 1993
Favorite Colors: Blue and Purple
Favorite Sport: Dancing, especially Ballet.
Hobbies: Writing poetry, writing and singing music(even if I'm not that good at the singing part), reading, collecting Dolls, listening to my iPod and enjoying my cat Flabby Abbey!
Things that annoy me: When my mom, or anyone really, looks over my shoulders as I'm writing(she's doing it right now...hey Mom, look, the guinea pigs are escaping! Hey, I think it worked...kidding, mom!)and when the nurse wakes me up to ask me if she can take my blood pressure. Seriously, first of all do I have a choice?!? and second of all, is it that hard to simply lift up my arm, wrap the cuff around until the velcro sticks, then push the little button, while I sleep, oblivious to the whole proceeding?? We have the technology people!
Favorite food: Mashed Potatoes, seriously I could eat those all the time!
Favorite Music: Well, I listen to everything but some of my favorites are Regina Spektor, Linkin Park, and Lifehouse. But again, even if I totally hate the song I'm listening too...if I know the words I have this overwhelming impulse to sing along!
Favorite movies: The Chronicles of Narnia-Prince Caspian, The Sisterhood of the Traveling Pants 1, Love Actually, Family Stone, Bridge to Terebithia, Titanic, and A Christmas Story.
Pets: A beta fish named Tonks(I was reading Harry Potter #7 at the time). We also have Abbey, the calico cat. No reason for her name, that was her name when we got her. And we have two guinea pigs, Amy(I was reading a "Charlie Bone" book at the time, and as you can see, we Robertson's put much importance and emphasis in our reading)and Amber. Alec named Amber just because he didn't want to break the 'A' trend. And I think he wanted mom(christened Ellen)and I(christened Samantha) to feel left out... All the 'A's are at Mom's house, and Tonks is at Dad's house.
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~The Wacky Family Robertson/Kirkpatrick Stories~ ~Section!~
For the week of 6-06-09.
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Setting:
Subject:
Background:
Journal
Friday, June 26th, 2009 ...err, I mean it's June 27th. Well, it's exactly one in the morning, hence the title. I am shacked up at Lily and Luke's for the weekend and they just happen to have internet services! Apart from that, they also got a new dog and he is the cutest little thing! He is half Poodle and half Schnauzer...we are calling him a Snoodle and his name is Mr. Bean.
Anyways, to the people I won't get to see this summer at camp Sunshine...don't worry, I'm hiring(although, is it hiring if I'm not paying him?)Alec to video tape Mom's and my little skit we're working on.
In medical news, I got ahold of, ahem, MOM got ahold of Dr. Moltz and she agreed to up the dose of my Fludrocortisone...now I take half a tablet two times a day instead of one. However, I ABSOLUTELY CANNOT go up on my Prednisone(that was the emphasis Dr. Moltz put on her directions)so...where my recent and extreme fatigue is concerned, no answers or solutions yet.
Sigh, well, apparently SOMETHING has to be physically wrong with me or the universe as we know it will start spinning wildly out of control or the Space/Time Contiuum will freeze or something.
If it's for the good or mankind, then I suppose I'll gladly put up with it.
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Wednesday, June 24th, 2009
Well, our internet's out again...I think one of our cables fused out or something. So until we get it fixed, my updates will be rather sporadic...I'm writing this at dad's house now.
Nothing much is going on...but I'm getting excited for the summer! We're going to Camp Sunshine but instead of the BT week, we're going to an Oncology week. It's from the 19th to the 24th...less than a month! Mom and I are working on a bit for the Talent Show...I'm veering a little from my usual course but it'll be great!
And yes, that's another surprise.
I'm still feeling pretty darn good...the Fludrocortisone is helping a lot with the palpitations. I hardly have them anymore in the morning but we're going to see if we can up the dose a little so the symptoms I also get during the day will go away too. I'm still having the wall-denting dizziness and metal-plate-dinging clumsiness. But for now, I'm sleeping a LOT better and I've been doing a lot during the day for once since my headache isn't too bad.
So far, it's been a great summer!
P.S. One more note...Mom's propensity for attracting bad luck in respect to all electronics has killed my camera. Actually, not really...the screen is cracked(she dropped it)but I think as long as the actual lens is okay, it might still work! I'm waiting for the computer to load them so I can take a look at what the pictures on my camera look like!
It's lucky I'm not like every other teen...I didn't start yelling at Mom that she's ruining my life and stuff like that. On the contrary, I thought it was funny and could very well be used for a future W F R/K Story!
Read Journal History
Hospital Information: Patient Room: I am currently at home, thanks for looking! Childrens Hospital of Michigan
3901 Beaubien
Detroit, MI 48201
313-745-5437
Links: http://www.caringbridge.org/mi/4theloveofzoe Cutest Zoe Ever!!!
http://www.caringbridge.org/visit/lucasmoore A boy with a type of tumor very close to mine that we've had the pleasure of meeting!
http://www.caringbridge.org/mi/teambradley A brave young guy with Leukemia who lives very close to us.
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