Two Years Later

I had THE most amazing trip to New York City thanks to Make A Wish, Macy's, and The Early Show. I can't wait to tell you all about it (in detail), but first I wanted to tell you about my messy kitchen.

It's 1:30 am and I just finished making fudge. Let's just say it seemed like everything that could have went wrong did. I decided to make a double batch, but I used too small of a pan. It took so long to boil, and then when it did start boiling it bubbled over and was going everywhere. You know how good burnt sugar smells, right? So, mid boil I have to switch pans. I also had to unwrap my sticks of butter and ingredients while continuously stirring, my arm was aching. I was determined not to burn it. Anyway, I was annoyed, trying to think of a way to explain to my Mom why her kitchen looked like this when I got a text message. My Mom had text me "Happy Birthday!" I had completely forgotten. When you have a transplant they consider the day of your transplant to be your second birthday because it's your second chance at life; a new beginning. I had my transplant two years ago today.

I have been a little aggravated about my medical situation since I got back from New York. Everything surrounding school and raising awareness has been amazing, but I am struggling with graft vs. host disease. I've tried tapering my medication four times and it feels never ending. One unsuccessful taper and flare of GVHD after the other. It feels like taking a step back when I am so ready to move forward.  I am always thankful, but somewhere along the way I got caught up in my "messy kitchen" of life and forgot that regardless of the GVHD, I wake up every morning and get to live my life. Two years ago, I didn't know if I would make it to be 18, if I'd get to go to college, or even if my hair would grow back!

And today, here I am, sitting in a messy kitchen with short brown hair thanking God for the past two years of miracles.

Also, I want to say thank you all for your continuous love, prayers, and support over the past few years.  You have been by my side every step of the way.

Thanksgiving Hope

The new medication ExJade makes me feel poorly. It hurts my stomach, gives me headaches, and makes me nauseous. Sounds like fun, right? We have backed down on the dose and kept a close eye on my counts.

It’s like I’ve started falling out of that good place I’ve been in. I was supposed to go visit Uncle Rick and Aunt Ro this Thanksgiving, but had to cancel plans because my hemoglobin dropped. Apparently, high cabin pressure and low hemoglobin are a nasty combination, so we stayed home instead. I’m tired, not feeling well, and bored. Allan has been so sweet. He has kept me entertained and laughing, renting movies, and watching TV marathons. However; it doesn’t make me forget what I was supposed to be doing or how I feel. I spent Thanksgiving day in my pajamas and Chelsea an Lexi were so kind to bring the feast to me.

I was flipping through a magazine and found an article about a man who had a transplant in 2010; since then he’s opened a fitness center, got engaged, was on the Amazing Race, training for a marathon, is tan and healthy, and has long curly hair. As I lay in bed single, weak, pale, short haired, and feeling poorly, I can’t help but wonder, why? Am I doing something wrong? I’m not saying I want to be engaged or on the Amazing Race, and everyone knows I will never be tan, but I just can’t help but feel like it’s my fault sometimes. I should mention he relapsed, so I’m so grateful to be where I am, instead of in his shoes, but it’s been a hard few days.

This Thanksgiving, I feel like I’ve lost my way a little. The list of the things I am thankful for is never ending. It includes family, friends, faith, life, and laughter, but at the same time I’m disappointed and in pain. It leaves me feeling kind of like a turkey that was shot at, but survived. I’m hobbling along wounded and tired, but mostly thankful that I’ll live to see another year.

However, the long week is behind me and I am surrounded by amazing people who cheer me up. Please watch this beautiful video Allan made. It started out as a school project and turned into so much more…things are looking HOPEFUL.

Where I Used to Be

Well, I have THE best news ever. I do not have MDS! All of the results eventually came back. It was the best birthday present! But the party we had was a close second. The weekend before my birthday we had a 18^th birthday/GED celebration at Gerber Gardens. It was truly a celebration of life, friends, and family. Thank you so much to everyone who helped or attended. It was more than I could ever imagine. I do have to admit, it took me awhile to recover, but it was worth it. Family from Oklahoma, Kansas City, and Connecticut even flew in to attend! I was so surprised.  We had a cake, cupcakes, candy, cake pops, dinner, music, purple and cream décor, flowers, etc. I felt so special and loved. Again, thank you to everyone involved.

I am still going to Mayo to receive treatment twice a week every other week, and to Phoenix Children's twice a week every other week. So, typically I spend two days a week at some form of a hospital. Compared to being there all of the time, I am thrilled with this new normal. I have reached the point where I am living my life and thoroughly enjoying it; school, friends, public places, and more! I even went to New York and visited Columbia University and New York University! There are still some stipulations, but most of them I have tried to disregard. I have not gotten sick so far, so I am going to keep going with this theory. I have learned in the medical world asking for forgiveness is much
easier than asking for permission. 

I am still on heavy doses of immune suppression. My body is so dependent on medication it frightens me. They are considering tapering on either the dose of Cyclosporine or the amount of Photopheresis I receive. The taper process would take up to December 2012. If we chose to taper the Cyclosprine we would drop in small increments every three months, depending of how my body reacts. If we chose the ECP, we would go to treatment twice a month, instead of four times a month. Although I am emotionally ready, I don’t know that I am physically ready for a drop in ECP, my flexibility in my fascia has improved, but it’s not 100% and the idea of stopping something before it has fully worked scares me. The doctors will make the final decision, but there is no right answer. That is the most difficult part for me as a patient. A lot of the decisions are judgment based; and like life, everyone has there own ideas of what’s best.

Physically I have been tired and sluggish this week (if only I had a dollar for every time I’ve said that). My hemoglobin continues to stay between 8.5-9.5. It isn’t low enough to be transfused (Praise the Lord!), but it is enough to make me feel fatigued. I usually take a nap every day (sometimes two); so we are still searching for answers to the big fatigue mystery. I started a new medication called Exjade to remove the amount of iron in my system. When you receive so many transfusions, like I did, you become overloaded with iron; which isn’t good for your organs.

I love quotes and this one seems to sum up how I feel perfectly, “I might not have arrived where I want to be, but I damn sure left where I used to be.”-unknown