|
Sammi Jean Elisabeth Robertson 
This is me about two and a half years ago at the first annual Zoe Bergen Childhood Cancer Foundation Redwing Alumni Hockey Game.
This is me this past summer up in northern Michigan, after Camp Westminster when Alec, Mom, Dad, and I were renting a cottage on a lake. I was in the middle of the book and didn't appreciate being interrupted, and being told to look at the camera! So I settled for pointedly looking away! The picture ended up turning out rather well, as luck would have it.
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 15 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 and one hair color and 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. Nik and Cait live in Chicago.
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 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 then sent home. They later realized the mass had burst inside my head(yeah, I know...eww)and caused the infection.
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. I had acquired Communicating Hydrocephalus from the meningitis. After the 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. Between December of 2003 and June of 2008, I have had 35 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 but because I wasn't born with it(which everyone with those types of cysts are)we're still not sure exactly what it was. I fractured my skull when I was 9 months old and I required a CAT scan and there isn't any evidence of the tumor-mass-cyst on the scan. And, nope, my brain couldn't decide what kind of tumor it wanted either...according to the doctors, it acted like a Rathkes Cleft Cyst but looked like a Craniopharyngioma. Some doctors thought it was a Dermoid or an Eperdermoid and another thought it might've actually been a Germinoma at one point....well, you get the picture.
Now that I'm happily parted from the 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 because during my craniotomy my Pituitary Gland was damaged and as a result I don't produce Antidiuretic 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. 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. 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 Topamax, which I take to steady my hand tremors. I take 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.
Also, some terms and abbreviations you might need to know are:
-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.
**Some little fun facts you might like to know**
Birthday: February 10th, 1993
Favorite Colors: Blue and Purple
Favorite Sport: Dancing, especially Ballet.
Hobbies: Writing poetry, reading, listening to my iPod and enjoying my cat Flabby Abbey.
Things that annoy me: When my mom 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!
Pets: A hamster, named Marley(Alec was reading "Marley and Me" at the time). 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 Marley and Tonks are at Dad's house.
Excerpt from "On the Radio" By Regina Spektor.
This is how it works
You're young until you're not
You love until you don't
You try until you can't
You laugh until you cry
You cry until you laugh
And everyone must breathe
Until their dying breath
No, this is how it works
You peer inside yourself
You take the things you like
And try to love the things you took
And then you take that love you made
And stick it into some
Someone else's heart
Pumping someone else's blood
And walking arm in arm
You hope it don't get harmed
But even if it does
You'll just do it all again
The two authors of this website, Ellen and Sammi.
My mom and I a really long time ago! I guess I was about 6 or 7 at the time. My mom would like me to say that this was the 90's and therefore...she was not legally responsible for her hair style choice!
Journal
Saturday, October 4, 2008 9:09 PM EDT Sam has sounded pretty miserable all day. The incision on her tummy is open a little bit and her head is hurting so I'm sure we'll be going downtown on Monday.
I met Jenni and Calvin for dinner then we went to WalMart. Caitlin called me. She was shoe shopping at Nordstroms in Chicago. What is wrong with this picture? She is 20. I am 45. I should be shoe shopping at Nordstroms in Chicago and she should be shopping at Walmart in Livonia. Ridiculous.
Read Journal History
Hospital Information: Patient Room: The room by the bathroom Childrens Hospital of Michigan
3901 Beaubien
Detroit, MI 48201
734 934 7908 Ellen's Cell
Links: http://www.caringbridge.org/mi/4theloveofzoe Cutest Zoe Ever!!!
http://www.caringbridge.org/visit/lucasmoore Cute Cranio Kid
http://www.campsunshine.org Camp Sunshine - Maine
|
|
