As promised, here is an update!

Hey there everyone! I'm sorry I dropped off the face of the Earth for a while..... I've been crazy busy. School has been going well, and I am SOOOOO excited to be graduating this year! I got my letter of acceptance from Red Deer College a few weeks ago........ guess who's going to college in the fall?!?!?! I'm taking my Bachelor of Science in Nursing, and I'm hoping to eventaully go back to get my Masters!

So health wise, I still have headaches everyday. I actually have an appointment on Friday (November 18th) with my neurologist as well as my endocrinologist. There seems to be some.....debate on the tumor in my brain. The doctors here in Canada diagnosed me with an Optic Glioma about three years ago. I never truly understood why they diagnosed me with that, because the tumor is nowhere near my optic nerve and has no impact on my vision. When I was at the Mayo however, BOTH neurologists said that my tumor was an astrocytoma (slow growing tumor). So, when we got back home and told my doctors about it, they said that an Optic Glioma and Astrocytoma are the SAME THING!!!!! This is not true, as the size, shape and locations of the tumors are very different. It's just so frustrating that there is so little awareness for NF, and that people with NF have to live with so much uncertainty.

Home Sweet Home!

My Mom and I have made it home safe and sound! The plane ride yesterday was pretty good.... actually we were lucky we even landed! I guess there was talk of "rerouting" the plane due to a severe weather warning! Lucky for us, we landed safely! The only thing that went wrong was that we had to wait close to an hour and a half for our luggage! Due to the weather warning, they couldn't unload the bags from the plane! We weren't allowed to leave with our bags so we were stuck in baggage for quite some time!
Other than that, everything is going well and I am just so happy to be home!

I'm Goin' Home!

YESSSSS!!!!!! The results are finally in! I get to go home tomorrow!!! I am so excited to finally be in my own bed, in my familiar surroundings.....
Well the results of my last test today (the "extensive bladder" tests that I previously talked about), came back completely and totally 100% normal. This is good! The only thing is that there is STILL no answer to why I have frequent urination problems! The doctors just have no answers for this. To be honest, it's all very frustrating. I mean, it's good that we eliminated all the "scary" things from the picture, but I am still left with having chronic headaches and frequent urination (which to be frank, it a complete pain when it comes to going through the night). It's easy for a doctor to say "Oh, I don't know what's wrong with you." but it's different from a patients perspective. I just wanted answers! Like I have said in earlier posts, YES I did get an answer that my headaches aren't due to the growth in my brain, they aren't because I have a messed up hormone system.... the list is honestly endless of possible "triggers" for my headaches.
Although I didn't get all the answers I was hoping for, I am really grateful to be able to have this experience. If I was never able to do this, I would be sitting back wondering "Hum.... I wonder if the doctors at the Mayo would have any answers for me." I am really very happy that nothing is seriously wrong with me, and that I didn't need any kind of scary surgery or something like that.
Thank you to everyone who read my blog, and who gave their support to me and my family in the past few weeks (and not to mention years!). I promise to update this blog every so often, so make sure to check back in the future!

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Hey guys! Sorry for not doing a post last night, but we have been having some problems with the Wi-Fi in our room! It's all working now so I thought I should write this post before we lose our Internet again!
So yesterday my Mom and I went to the local mall here in Rochester. It was a lot smaller than the Mall of America, but there was still some good shopping! Actually, we met the sweetest lady in Herberger's (one of the major department stores). I was wanting to buy a perfume (and let me tell you we got it about $40 cheaper than we would have at home), and she was wanting to give my Mom and I the best deal possible. Not only were we saving $40, but she wanted to open an account at the store so we could get an extra 20% off! Now it would have been simple to set this account up, if we weren't from Canada. I bet you we spent about 40 minutes waiting to get this account set up. Normally, I would have just said "Forget about it", and would have paid for my stuff and left. Well, this lady wouldn't have it! She said she wanted me to have this deal, and would do whatever it takes to get it to happen. While we were waiting, she asked my Mom if I was her sister or her daughter!!! My Mom looked a little confused and said.... "I'm her mother." The lady looked shocked, and said "No way! You look way to young to be a mother!" Also, while we were waiting she asked us why we were in Rochester, and when we said I was here for the Mayo Clinic her face fell. She immediately said she was "so sorry to hear that." and that it was unfortunate that I had to go through all of the tests and whatnot. FINALLY, after about 40 minutes of waiting and waiting, our account was finally set up. She felt so bad about keeping us, that she gave us about $100 or more worth of free gifts! And when my Mom and I were about to leave she came out from behind the counter and gave both of us a hug! You sure don't see that too often.... people being kind and compassionate. I've found that down here in Rochester, everyone is really understanding and caring! We have met so many kind and genuine people, and I am really grateful for this experience.
Today I finished reading the novel Letters to God. It was such a moving, emotional book! It was basically about the story of a young 11 year old boy who had a rare form of brain cancer. As his method of coping, he wrote letters to God. In these letters, he asked questions about why he was sick, asked God to take care of his family and other simple things like help his best friend cope with his death. This book is starting to make me realize that life is short and that we have to enjoy every minute that we have. The book says that people tend to take the simple things in life for granted. I've seen so many sick kids, and I'm beginning to realize that I am lucky that my NF isn't as bad as it could be. I've heard horror stories about kids with NF, and I am nowhere as sick as some of these kids.
I would recommend this book to anyone who is looking for an inspiring message, but I would make sure to have a box of Kleenex nearby, it's a real tear jerker!

Mall of America!

Yesterday my Mom and I went to the Mall of America since we had a little bit of down time. I had such a good time! To be honest, it really wasn't all that different than West Edmonton Mall. There were definitely more high end stores, but other than that most of them were the same. My Mom and I went into Nordstrom (because the lady driving the bus told us that is where all the ladies like to go shopping), and man are the prices INSANE! We saw a jacket that was ON SALE and it still cost $1200!!!! It wasn't even that nice to be honest!  But other than that, the prices down here are awesome! Clothes are so much cheaper!
For dinner my Mom and I went to the Rainforest Cafe.... it is such a cool place! I wish we had something like that in Canada!
Today we are just going to stick around the hotel and have a lazy day. This morning we had a wicked storm roll through, we were actually on a severe thunderstorm watch and were instructed not to leave the shelter of our "home".
I hope everyone has a great weekend! My next appointment is on Tuesday so my Mom and I have to find something to do in the meantime. It'll be nice to take a break from all the medical stuff!!!

Third Times a Charm!

Appointment wise, I think today was one of the best days I've had yet! My first appointment was with a gynecologist to further investigate the growths that are in my pelvis. She said that there is no way to tell whether these growths are cyst or tumors without doing surgery. Since they are not causing any problems, they have decided to leave the growths alone. When we were done with that appointment, we went and saw a endocrinologist (hormone doctor). Man did he ever get riled up when I told him I was on growth hormones a few months back. Before I even started treatment I knew that there was a possibility that I would have new tumors grow or that the ones I already had would get bigger. What I didn't know was that sometimes people who are on growth hormones develop a disease that is exactly like mad cow disease! Scary!!!!! So when that appointment was over with we went back to the geneticist to see if any of my test results had come back. Unfortunately, the DNA test that I talked about previously in one of my posts takes about 4-5 WEEKS to analyze! She also told me that for the most part, most of my hormone levels are "normal". We are waiting for the results of my T4 levels (thyroxin) to be processed. I am having symptoms of hypothyroidism, which is when your brain doesn't make enough thyroid hormone, which is responsible for things like metabolism and body temperature. Since I am chronically cold, have dry skin, fatigue, lack of energy etc. they decided to see if my body is making enough thyroxin. Lastly, we had an appointment with a different neurologist, since the one we first saw really did no good to us. This guy on the other hand, was absolutely AMAZING! He actually took about 30 minutes to go through my MRI scans and he showed me different parts of the brain, what they do, what certain colours on the scan mean.... He also told me that since 2008 (which was when I was first diagnosed with a brain tumor) it has SHRUNK by nearly half it's original size! Unfortunately though, he didn't know why I was having daily headaches. That is the 7th neurologist we've seen and who has told us the exact same thing. He suggested that I increase the dosage of the medication I am on right now. At the moment, I am on 25 mg of this medication, but sometimes he said that patients require up to 200 mg!
So yes I am disappointed that we have no "magic cure" for my headaches, but I am slowly getting used to the idea that maybe I cannot be fixed. It's hard knowing that doctors (who are supposed to know everything) have no idea what's going on with me. But at the same time, it's comforting knowing we took my issues to the "top", and that we have done everyting possible to get rid of my headaches.
After a long day at the Mayo, my Mom and I went downtown to see the street festival that they have every Thursday. It was really cool! They had a whole bunch of different vendors selling things from hot dogs to suit jackets to sunglasses. Tomorrow, we are going to the Mall of America to have some fun!
So below is a picture of me with my geneticist (Dr. Babovic) and below that is a picture of me and the shuttle bus driver that I mentioned in my post from yesterday!

What a Fantastic Day!

Today was another great day at the Mayo. What an amazing place, I am so thankful for the opportunity to be seen by some of the worlds best doctors. Today, I saw an orthopedic surgeon about my scoliosis and the bony lumps that are on the first two ribs of my left rib cage. She was PHENOMENAL! She was so kind, gentle and actually had the time to address my concerns and questions. My Mom and I explained about our little incident yesterday with the neurologist and she actually was apologizing to my Mom and I! She even offered to have an appointment set up for me to see a pediatric neurologist tomorrow! After she took a bit of history of me and my scoliosis, she sent me to have x-rays of my neck. Yesterday, the neurologist was concerned about the curvature of my neck, but she said my scans looked good and everything was fine. She also suggested that the lumps on my ribs are due to the fact that the scoliosis has pushed my rib cage out, causing the bones to stick out as well. After that appointment, we went to go see the urologist for my frequent urination. He suggested that one of the tumors in my pelvis might be pressing on a nerve, which is causing my bladder to spam and then release urine when it isn't supposed to. Also, my brain could be making too much ADH (which makes you have to urinate), and if that is the case then that can be treated with medication. He set up an "extensive" test to measure the pelvic floor activity of my bladder.
Finally, after the urology appointment I went down to have an MRI. It lasted about an hour and a half, and it was absolutely BRUTAL to try and stay still. Near the hour mark, I started getting really uncomfortable and started squirming.

To all my Canadian friends, you have no idea how lucky we are to have free health care. We don't have to worry about paying outrageous costs for consultations and even for a simple blood test. Here, you have to pay for each individual hormone being tested. That's CRAZY!

I believe my Mom and I have made a new friend.... one of the guys who drives the shuttle back and forth from our hotel to the Mayo Clinic. Honestly, he kind of looks a bit like Santa Clause!!!. He is so funny, and is kind to everyone. He has actually given me a pet name... Smiley!

Oh! My Mom booked two seats on one of the local shuttle buses to go up to the Mall of America on Friday... I am SUPER excited about that!

My Mom and I have a bright and early day tomorrow, make sure to look out for my post!