This Too Shall Pass

Lovely readers,

I would like to start off by thanking everyone who has been supportive since my return from Minneapolis. Most importantly, my family for helping me to transition back into my old life and allowing me to sulk and take time to process the situation. Next, to my friends for never pressuring me to do more than I can handle. And for reminding me what it feels like to do normal things. They keep me sane and remind me that there is more to my life than being sick. Next, to my classmates. I cannot even begin to express how indebted I feel to all of my classmates for sending gifts, cards and prayers my way. Special thanks to my english class and Ms. Bonjour for taking up a collection to get me the BEST box of gifts ever. Before I left town, I made a list of things I thought would make my time in the hospital easier and they literally got almost every single item on the list- and more. Without even seeing the list. Their thoughtfulness is greatly appreciated.

I guess now it's time for an update:

I know I have not blogged in awhile but I needed a chance to get my thoughts together and decide how I wanted to proceed with the next few months. I have decided to continue blogging. My story is not over, in fact, my story has probably just become even more important to tell. I will not stop writing. I have also started my iron chelation. I'm currently infusing 24/7. The pump is actually pretty simple and fairly easy to hide for those who don't know it's there. I have spent the past two weeks really thinking things over and coming to grips with the reality of things. I know that I will be able to find strength in the people that surround me and I know that I will find strength in myself. I also know that other people will find strength in my story and I hope that my voice can be heard.

I have managed to get out of the house a few times since I have been home and even managed to attend a Gnarley Zombies concert. I did not anticipate how hard it would be to get back into my old life, especially knowing that I will have to leave it all again at any moment. I'm living in limbo and I don't like it. It makes it very hard to form new friendships or relationships and it also makes it very hard to plan. I've always been a planner, "living in the moment" is NOT my thing. I consider myself a free spirit but I also value every moment I have on this earth. I don't believe in wasting precious time. Knowing that I can't plan is going to really bother me. However, I think it might be good for me to take a break. Since I was in elementary school it was decided that I would become a writer and move to NYC. I've worked hard, despite all the obstacles put in my way, to achieve that goal. I've pushed myself, usually farther than it was healthy, in order to keep up and surpass others. Now that I know my life has literally been put on hold, there isn't much of a reason to push myself. I think I might take some time for myself and relax and maybe start writing a book or memoir or something of that nature. But lets not get ahead of ourselves, right now i'm thankful if I can manage to get out of bed, eat two good meals and shower every day. But, as they say, this too shall pass. And when it does, I know that I'll be stronger than ever.

Well, that's enough for tonight. Before ending, I would like to share this quote with everyone from Eleanor Roosevelt. Oddly enough, Eleanor has been a hero of mine since the 5th grade when I did a project on her. Come to find out, she died of Aplastic Anemia, the same disease that I'm now fighting. Crazy world. Eleanor represent an independent woman who took it upon herself to make a difference in the world. She surpassed everyones expectations and redefined what it meant to be a wife and a woman. She was a beautiful writer, wonderful speaker and amazing philanthropist. All qualities I wish to have some day. She says, "You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must always do the thing you think you cannot do."

**Reason of the day: Eleanor Roosevelt and her inspirational words are always a reason to smile (RTS)**

Coming Home

As you all know, I was supposed to start chemo on Tuesday. However, there was a huge change of plans.

On Monday, we got a phone call from my nurse here in Minneapolis who said that one of my tests had come back with some very bad news that could effect transplant. We met with one of my doctors on Tuesday (the day I was supposed to start chemo) and basically told us that transplant is now off the table for now. Here's why:

I've been getting frequent transfusions for probably close to two years now. The downside to getting so many transfusions is that blood is filled with iron. A normal person has a certain amount of iron in their body that will never go away. When transfusions are given, more iron is given that can build up and end up causing iron overload, which is what happened with me several months ago. My body has tons of extra iron and no way to get rid of it. This can be harmful because iron overload can cause problems with your liver, spleen, etc. I started a drug called desferal back in august to help lower my iron levels. This is the only way to decrease/get rid of iron overload. When we started the transplant process we tested my iron levels and sent them to my doctor here in Minneapolis and he said that it wouldn't be a problem for transplant. Unfortunately, now he's telling me it would be foolish to transplant now because my iron levels are so high.

Sooo....what now? Basically I have two options.

1) Do the transplant now despite my high iron levels. That would double my risk of death, putting it at about 60%. My high iron levels can lead to fatal problems during transplant. There is no way to treat the liver problems that could occur within the first 20 days of transplant.

2) Go home and do iron chelation (the only way to lower iron levels) for several months/ up to a year. This would require me to live with a needle in me 24/7My doctor said I can't go more than a year without transplant so the hope is that my iron levels would lower enough in that amount of time. However, he says I only have a 50/50 chance of that happening. So, if I go home and wait a year, I could be in exactly the same position that I am now. The risk of waiting is that my health and moral has been deteriorating for the past several months and waiting longer can put me at an even greater risk. IF my iron lowers enough then my risk of death would only be 10-30%. My doctors "say" it's my choice. But, I would never ask my doctor to do something he isn't confident in so basically the decision has been made for me.

So basically the decision is #2. I'm coming home. Hopefully on Saturday. The next several months/year will be spent on the medicine 24/7 in hopes that we can get my iron levels under control so that I can return and get a transplant. I will not be returning to school and now I can't even start college on time. This disease continues to ruin my life. As you can see, I'm not very happy about the situation. I was originally diagnosed 5 years ago and have known for several years that a transplant was unavoidable. I literally got within 24 hours of FINALLY starting this process in order to move on with my life as a normal, healthy human being....and it was ripped away from me. Again. Now I will wait. Right now, I'm feeling pretty devastated, depressed and hopeless. My family and I mentally and emotionally prepared ourselves for this difficult journey, we got rid of our cat, packed up our things, accepted gifts from supporting family and friends and left everything. To now postpone this for several months is unfathomable. When will I get a break?

update

Didn't start chemo today. More details later.

Work-up Week

This week was our first week in Minneapolis and it's what they call the 'work-up week'. I spent the week going to appointments and check-ups as a part of the pre-transplant protocol. Here's how it went:

Sunday: My mom and I left KC around 9 am and made the drive to Minneapolis. We arrived at the Ronald McDonald House around 5 pm and got a quick tour of the house. This place is huge! There are four floors, four kitchens, four "houses" (wings), several play rooms, an indoor basketball court, a workout room, several fire places, several living rooms, a scrap booking room, movie theatre, arcade room, etc. Our room is in house one and it's basically like a hotel room. There are two levels, on the first floor there's a living area with two beds, a bathroom, a closet and desk/tv area. The second level is actually a loft with a spiral staircase and two beds. I've claimed the loft as my own. Every night someone caters a dinner for everyone living in the house. It's really nice here and everybody is very friendly.

Monday: Monday was my first day of appointments. I first went to the Bone Marrow Transplant (BMT) Clinic so that I could get some labs done and meet with one of my doctors. Then I had appointments to get chest x-rays done and to get an EKG done.

Tuesday: I had appointments in the morning to get a ferriscan done and a pulmonary function test done. Then my mom and I went to the Mall of America and ate at Bubba Gump (one of my favorites) for lunch. Afterwards we did some shopping and I spent tons at H&M. I bought several hats to wear when I lose my hair.

Wednesday: In the morning I had a consultation for my surgery to get a hickman put it. For those who have seen my port (the scar on my chest), a hickman is very similar. I have to get surgery to get it placed and then it will sit on the left side of my chest and it will be used for getting medicines and blood throughout transplant. The surgery is kinda freaky so I won't explain the process. Thankfully I can get it removed in a few months and it won't leave a scar like my port. Then after the consultation I had an appointment to get an echocardiogram and then I had an appointment to get sedated and have another Bone Marrow biopsy. Needless to say, I spent the rest of the day in bed with a sore hip.

Thursday: This was my last day of appointments. I first met with a hematologist, then had a consultation to prepare me for radiation and then I had another meeting with one of my doctors. We went over the test results from the week- so far it looks like everything that needs to be normal for transplant (heart, lungs etc) came back normal. Meaning there isn't anything that would stop me from getting my transplant. They also set the date for starting. Looks like I will be admitted into the hospital on tuesday to get my hickman put in and to start chemo. That starts the ten day countdown. Meaning transplant day would be December 18th, a week before christmas!

Friday: Today I slept. All day. It was wonderful. I was exhausted from our long week so I basically laid around and acted lazy all day. I checked out the scrap booking room and got some cool stuff to start working on for my scrap book. I also got my first package in the mail! It came from my nurse (Cathy) back in KC. Cathy and another nurse, Teressa, sent me a box with magazines, crossword puzzles, a shirt with the Empire State Building on it and a tin of popcorn with NYC on it. They're setting the bar very high for future presents. :)

Saturday: Today my mother woke me up at the ungodly time of 10:30 am. We went to Noodles & Company for lunch and then explored the college town. As much as I dislike Minneapolis, the college town is kinda cool. The Ronald McDonald house is on campus so I get to see people close to my age a lot and it was cool to see where they hang out. In the afternoon I made christmas funfetti cupcakes and put out like 20 of them for the other residents to eat. They were gone the next morning. For dinner we went to a bar type place that is known for their subs. My mom tried a sub and it was pretty good. I still prefer Jimmy Johns when it comes to sandwiches.

Sunday: Today I slept in again and went to the Mall of America to shop. I got tons of stuff at sephora and mac. Then we went to this awesome italian place for dinner. I even got tiramisu (my favorite) for desert. Tonight I will be doing laundry and starting to pack up my things to move from the Ronald McDonald house over to the hospital. Tomorrow is my last day before I start chemo.

**Reason of the day: On Saturday I was in one of the kitchens making cupcakes while watching some of the little kids play. One of the kids (a post-transplant boy who gets to go home in about a week) was upset because one of the girls had stolen some of his Monopoly money. It humored me to see that a little boy who has been through SO MUCH can still get upset over normal little kid things. Non-jaded (yes, I realize this isn't a word) boys are always a reason to smile (RTS)**

Last Week in Town

This past week has been super hectic as my family and I prepare for me to leave. It's been a week filled with many 'lasts' for me. Here's an update:

Tuesday- Tuesday was my last day of high school. ever. It's crazy to think that I'm finally done with high school! Tuesday night was also my last chance to see friends so a bunch of us went to Oklahoma Joe's for dinner and then hung out for awhile. It was hard to say goodbye, especially knowing that I won't see them until april/may.

Wednesday- Wednesday was (hopefully) my last transfusion in Kansas City! For several months now, I've been getting blood transfusions every two weeks so a typical wednesday for me is a day spent at the hospital getting blood. I've known many of the nurses for nearly five years and spent way too much time with most of them. :) They surprised me with a gift card, balloon and ice cream as a going away present. Here's a picture of me with a few of the nurses. Theresa, the nurse to my left, was the first nurse to draw my blood nearly five years ago. I'm hoping the fact that I saw her on my last day will be a good luck charm.

Thursday- Thursday was Thanksgiving. Seeing as how I'm a senior and plan to move to NYC next year, it was probably my last Thanksgiving that I will spend with my family. My mom and I went to lunch at The Bristol and then I went to see my Dad, Stepmom, half brother (ethan) and brother (Jameson). My dad and stepmom gave me some early christmas presents to keep me busy during my first few weeks in the hospital. I got a NYC calendar to help me count down the days, a few 'adult coloring books' to keep me busy and a scrapbook for me to record my journey. Here's pictures of me with my two brothers, Ethan and Jameson.

Later that night, my mom and I decided to surprise Jameson by doing one of our family traditions. Every year, on the night that we set up our christmas tree, we get a bunch of junk food and a movie and we pull our mattresses out into the living room so we can sleep under the tree. My brother was bummed that we wouldn't be able to do that this year so we decided to do it early. Again, this will probably be my last year to participate in our christmas mattress tradition.

Friday- Friday was packing day. I cleaned my room, did laundry and finished packing my life. I managed to fit everything into a black suitcase, a blue tub and two clear tubs. Here's my life for the next four months:

Saturday- Today is my last day in town. I spent the day relaxing and trying not to stress about tomorrow. I watched TV, went to dinner with my family and went over my packing list. It's starting to hit me that I'll be leaving my home in roughly 12 hours. I don't really know how to wrap my head around it but I know that I'm as ready as I'll ever be. It's hard to leave home but I know that I'll be coming back home soon. This is just a hibernation for me. Tomorrow brings a new challenge and a new journey for me, but I'm not afraid.

**Reason of the Day: While packing, I noticed that my mom had bought a kleenex box with gerbera daisies on them. She said she picked that box because she remembered that gerbera daisies are my favorite flowers. Personalized kleenex boxes are always a reason to smile (RTS). **

Last Weekend in Town

Good afternoon, readers. This past weekend was my last full weekend before leaving for Minnesota and it was quite eventful. Here's the rundown:

Friday: On Friday, my classmates in Journalism brought cookie cake and milk for me as a way to say goodbye. I honestly did not expect that and it was nice to know that I will be missed.

Saturday: It was my mom's bright idea to get family pictures done. Ugh. We had originally planned to get them done later but due to transplant, we had to move up the date. My mom, brother and I drove out to Topeka to meet with the photographer who did my senior pictures and she shot some great pictures of us. I'll post some when we get them back. Then we met for lunch with my Aunt Laura, who we don't see very often. Laura told me a story about another one of my aunts, Mary, who suffered from several conditions as a child and now lives in a facility where we can't visit. Apparently when she was a kid, she used to have a stuffed elephant named Macaroni that would go with her to all of her medical appointments. As a 'going away' present, Laura gave me a stuffed elephant just like Mary's. Macaroni Jr. is now packed and ready to travel with me to Minnesota.

Sunday: Two words. Family Thanksgiving. If you know anything about my family, you know exactly what this means. A day filled with too much food and too many family members packed into my Dad's house. My family only gets together a few times a year so it's always special when we get to see each other. Right now, my family has decided to only produce little boys so we have a total of six little boys under the age of ten, and two boys under the age of 15. Quite the handful. It was kind of a bummer to know that this will probably be the last time I will see everyone for awhile but it was nice that I got the chance to say goodbye before I leave.

Monday: Today was my second-to-last day of school for most classes but my last day of school for debate because I have an appointment tomorrow during debate. Mr. Witt had everyone do an "appreciation circle" as a way to say goodbye to me. The appreciation circle was something started by Mrs. Mountjoy as a way to say something nice about a certain person. It was cheesy, but sweet. It's getting harder to keep from crying as I say my goodbyes, especially to the debate kids because I've gotten to close to many of them.

More updates to come throughout the week!

**Reason of the Day: Today Chris Carey told everyone in class a not-so-funny story about a time when he pretended be "all over" me at a debate tournament in order to make certain people jealous. Sometimes he isn't as funny as he thinks he is. Chris Carey's weird sense of humor is always a reason to smile (RTS). **

14 Days until Departure

Hello, again!

Hope everyone had a relaxing weekend. I, however, did not. My mom, brother and I have been very busy cleaning every inch of the house because it has to be spotless when I return from my transplant (due to germ/health issues). I am pleased to say that I accomplished my goal for the weekend: cleaning my room (including under my bed, dusting, closet etc). We even cleaned our garage! We had some help from a few of my mom's friends who have been so kind and generous to us as we prepare to leave. Another big accomplishment of the weekend, I have packed everything and it fits into three tubs and a small box. As an over-packer by nature, I'm quite thrilled to say that's all I'm taking.

For a quick update, notice that I have removed the "follow" application on the left and have replaced it with a new and easier way to subscribe. By entering your email address and confirming, you will get email updates every time I make a new post. This will be an easy way for everyone to keep up with what's happening while I'm gone. I do not anticipate having the energy to keep up communication with everyone so this is an easy way for you all to feel involved in my journey...without making me exhausted!

Hope everyone has a great week! I'll make sure to update later this week.

**Reason of the day: Today I went to Children's Mercy to get some blood work done and I saw a little girl, probably only a year old, waddling around with a doll in her hands. Her bald little head indicated that she was probably fresh out of chemo or still getting chemo. Nonetheless, she waddled around with a grin on her face while her mom chased behind her. Bald, waddling babies are always a reason to smile (RTS).

Background

Hello readers! I am pleased to introduce my very first blog!

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).**