With the recent events that have occurred, I have decided that this is a good time to start blogging. As an aspiring writer, I consider this to be my newest challenge.
For those of you who don't know or are just tuning in, My name is Elizabeth McGranahan and I have Aplastic Anemia. I was diagnosed nearly five years ago and I'm now about to undergo a bone marrow transplant. In order to catch you up to speed, It would require hours of typing and explanation. You'll have to settle for a brief recap. :)
Not only do I have Aplastic Anemia, but I'm also considered a "dyskeratosis congenita- like" patient because I have the genetic markers for DC, but none of the physical characteristics. Like I said, I've been battling this for five years and my health has been gradually getting worse. After spending a week at NIH for testing, I was referred to a specialist transplant doctor in Minnesota. I met with Dr. Tolar and from that day, it was decided that I would be getting a transplant from him in the near future. My situation is unique and tricky because I don't follow the textbook in terms of my condition. For example, many of my blood counts have been in the CL (critically low) range for months, yet I've been able to attend school and live a semi normal life. Also, I've had severe reactions to blood transfusions, one of which actually put me in ICU. My rare disease has been made even more rare by my combination of two incredibly rare diseases and that's why it's important that Dr. Tolar does this transplant. To put things into perspective, Dr. Tolar has only transplanted eight patients since starting this special protocol for my disease. Six lived. Two didn't.
I currently get red blood cell transfusions about once every two weeks but I still manage to go to school at Shawnee Mission East as a senior. I'm even scheduled to graduate on time with the rest of my class. I was just accepted to my dream college, The King's College, located in the Empire State Building in NYC! My goal is to start in the fall and pursue a career in journalism/ broadcast journalism. As you can see, I'm no ordinary teen.
Initially, I fought hard to get Dr. Tolar to wait until January 25th to start my transplant because I needed time to mentally and emotionally prepare myself. I did not expect what soon followed. People don't understand what it's like to wake up every day knowing that you're inching closer to a serious and risky transplant. It's taken a tremendous toll on my morale and my optimism. This, combined with increased sickness and fatigue, has caused me to decide to move up transplant to November 30th.
So that's that. I now have 18 days to pack my life into a few tubs and make the 7 hour drive to Minnesota where I will endure a week of pre-transplant tests, 10 days of chemo, bone marrow transplant day, and a 100 day countdown of time spent in the hospital and the Ronald McDonald house down the street from the hospital.
Read the "about me" section for what to expect on this journey and stay tuned for more. Feel free to leave me a comment. Have a great day!
**Reason of the day: Today in English Class, Jayson Williamson did an impression of the drunken guard from Macbeth. His impression made the entire class crack up. Drunken impressions are always a reason to smile (RTS).**
5 comments:
Beautiful page! This is a phenomenal idea - therapeutic blogging! Luckily, we will run out of reasons to keep you in the hospital LONG before you run out of reasons to smile! :)
--Dad
Your story is very touching. What were you not expecting? You say "what soon followed", do you mean that you didn't expect people to not know what its like? I hope you have the support system you need! I would hope that those around you could be there for you during these difficult times. My good friend had cancer, and i understand what you mean that its hard for people, but we made it through and so will you!
Awesome way to keep everyone informed and up to date. I look forward to your updates and your daily RTS!
Jessica Eyssens
Elizabeth,
I am an old friend of your mom's. I just wanted to share the lyrics of a song that currently makes me think of what you are about to face.
Be strong in the Lord, never give up hope, your gonna do great things I already know. God's got his hand on you don't live life in fear. Forgive and forget but don't forget why you're here take your time and pray, these are the words I would say. This is the chorus from the song Words I Would Say by the Sidewalk Prophets. It just came to mind as I was reading your blog. There are tons of people praying for you and your family. Please remember that when you are looking for reasons to smile!!!
Becky Lanier
Fyi our english class talks about you every day! We really miss you, and I hope you will keep in contact with us. I'm going to tell them about your blog so that everyone can keep in touch. I know this holiday season is incredibly rough this year for you, but we will all be here waiting for you when you return to graduate! Good luck, Elizabeth. love, whitaker sherk
Post a Comment