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Sammi Robertson 
This is me about four 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.
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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 almost 18 years old and I have brown-green eyes and blondish-brownish curly-wavy hair. At least I did, before I shaved my head with The 46 Mommas of 2010. I have a 25 year old brother named Nikolaas, a 22 year old sister named Caitlin and a 16 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 let's not go there.
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 and the five different IV's)was completely and utterly unnecessary.
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 in a program called 'Connect'. It allows me to do most of my schooling from home and in fact, if all goes well, I'll be going to college this fall! Between the first surgery in December of 2003 and my last one in November of 2009, I have had 39 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 39 surgeries later, I am happily parted from the cyst! I have Adrenal Insufficiency, Growth Hormone 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 take 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 Prednisone(for the AI), Desmopressin(or DDAVP for the DI)and Fludrocortisone(for the POTS). 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 and Prilosec.
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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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 liquids
And take pills everyday
so someday the evil
in our bodies will go away.
The scars on our heads
and tubes in our chests
are the only symbols
that show our best.
In the hospital
And out again.
Our lives will never
be the same.
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 in the
hope that we will 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.
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**Some terms, abbreviations, and little facts you might need to know as you read this site**
-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 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 I also have 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.
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Journal
Monday, February 7th, 2011
So…onto that thought. It’s been almost five months since Mom and I shaved our heads. The 46 Mommas of 2011 is already up and running and we can’t wait to go down to DC, where it will be held, and see another group of women choose to give up their hair for their children. The 46 Mommas of 2010 were all amazing and Mom and I are so grateful for the experience of it all. It was amazing, heartening and life-changing. I had my friends from Camp Sunshine, Friends of Jaclyn and The Magical Moon Foundation behind me the entire way and I’m eternally grateful to them for that. I wasn’t nervous at all before shaving my head, as odd as that sounds, but any misgiving I might have had would’ve been erased entirely by my friends telling me that what I was doing was making a difference and inspiring them. The fact that they were all with me on that, donating and helping and encouraging us all they could, was priceless.
I do find myself disappointed though…not in my brain tumor family, but in my regular family and friends. Some of them donated and acknowledged what Mom and I did but most of them told me that I was really brave for what I was doing before the shave and that I looked really cute with my new haircut after the shave and stopped there. I didn’t do it as some sort of dare though and I didn’t do it because I wanted a haircut and this was the most attention-grabbing way of getting one. I did it because most of my friends have gone bald, but the difference was they didn’t have a choice. And they didn’t have a choice because PEDIATRIC CANCER took it away from them. How about everyone repeat those words for me? Pediatric Cancer. They’re not swear words so you don't have to drop a dollar in Lexie's swear jar...so why didn’t people also mention the reason for my new haircut when they said I looked adorable? It upsets me that people seem as afraid to say those words as Wizards are to say Voldemort. But I’m not here to pick on them…it would be unproductive and it probably wouldn’t make a difference. But as Albus Dumbledore said, “Fear of a name only increases fear for the thing itself.” I’m afraid of cancer, yes. I’m afraid of my brain tumor and what it could do in the future if it ever does grow back. I’m afraid of the time that could be lost to cancer. I’m afraid of the friends cancer could take away this year.
We lost another child from Camp Sunshine last month. Josh was a healthy looking boy of nine when I met him at Camp. But he had also been diagnosed with Glioblastoma Multiforme. The next few months were really tough. One morning in September Josh woke up and he couldn’t move anything on his left side. His family took him to the hospital and it was determined that he had had a stroke. In October, he started having more seizures. Josh was put on more chemotherapy and when it didn’t work, he was put on another regimen. The tumor kept growing and pretty soon, it wasn’t just a tumor. There were multiple tumors, both in his brain and his spine. On January 11th, he died at home with his family.
When he had to start chemo just a short time after the Brain Tumor session ended, he said that well, of course he could do this. Plenty of the kids he had met at Camp had gone through chemo and this showed him he could go through it too. This is just one of many examples of how amazing places like Camp Sunshine are and how important they are to families with a child who has a life-threatening disease. One thing I’ve found is that people don’t have a problem donating to places like Camp Sunshine or Hole-In-The-Wall or even St. Jude’s. I think that’s because when people donate to places like that, they think to themselves, “Well, I’ve done my bit. I’ve made a child with cancer happy. Now they can go to camp and have fun.” or, for St. Jude’s it’s, “Well, St. Jude’s is obviously the place to donate to, because it’s on TV and I saw a celebrity I like endorsing it.” And they don’t have to think about that child with cancer anymore.
In LA, there was an…um…incident with Mom and a man who wanted to know why there were 46 bald women taking over the hotel. When Mom told him we shaved our heads and were going on national TV to bring awareness and money for Childhood cancer research, he said, “And what are you doing for the families?” Mom repeated that we were raising money for research so a cure could be found. So the man just said, sounding annoyed,” So you’re not doing…anything for families of kids with cancer?” Then the elevator they were both in stopped and he got out, shaking his head. Needless to say, Mom was livid when she was relaying the encounter to the rest of us and, needless to say, I was really wishing I has been in that elevator with them so that I(a bald teenager with a scar almost ear to ear on my head)could tell him EXACTLY how The 46 Mommas were helping me and my family. How, when a cure was finally found, that would be the most helpful thing any of us could think of. In short, I wanted to take out my anger on this sap because his attitude is the attitude that most people take towards cancer and it makes me furious. People ignore pediatric cancer as much as they can and then, every so often, they make what I call an “easy” donation. When they can just make a charge on their credit card by phone or drop a few quarters in a collection bin so they can feel like they aren’t ignoring us at all.
Of course, Camp Sunshine saved my life and saved our family. You will never hear me say anything different. I think a lot of the families that go there would say the same. St. Jude saves lives and they are the first to save lives, more often than not, because they come up with a lot of cancer treatments first. Camp Sunshine saved my life…but too many kids I know from there still died from their cancer. St. Jude’s saves lives…but for every four kids they treat and save, statistically, there is always a fifth child that they couldn’t save, either because the cancer was too aggressive or because the treatment was too toxic. And after that one child is dead, three of the remaining four will have lifelong disabilities that could still kill them after all the treatment is over. And that last child could still have any numbers of emotional and cognitive complications, even if they aren't lifelong or life-threatening.
So yes, I am afraid of cancer. But I don’t take the cowardly route and ignore the elephant in the room. I’m also angry about cancer and yeah, I’m angry with people who do take the cowardly route. I’m upset that this post won’t change their minds because those same people won’t read this update because the two words ‘cancer’ and ‘kids’ are next to each other. Those same people who don’t know about kids with cancer because they don’t want to know also don’t realize that it’s only a matter of time before they realize how big a problem this is. Today, 46 kids will be diagnosed with cancer. Seven will die. This happens everyday. You can say that they can’t ignore these stats but obviously, they can. Just not forever.
As anyone who knows me will tell you, I’m stubborn and I always have to have the last word. I have a quick temper and I’m a notorious grudge holder. I tend to make sweeping judgments about the general populace when I get particularly angry at how easy it seems for people to sweep the number one disease killer of kids under 20 under the rug. So I’m sure that eventually, everyone will come around because I won’t let them forget what me and my friends have gone through. I won’t let America have the last word when they say that it’s too sad and that it’s so rare it couldn’t affect them.
I’m furious and I won’t stop being angry until everyone knows about childhood cancer and how truly widespread and devastating it is.
Read Journal History
Hospital Information: Childrens Hospital of Michigan
3901 Beaubien
Detroit, MI 48201
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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