Post Transplant (Week 14)

*(Days +90- +96) Monday-Sunday, (August 9th-15th) turned out to be a hectic week. I took a break from blogging so that I could focus on getting better. Here's a summary of the week. Not too much excitement:

*Monday-Friday: Spent recovering and sleeping. Fevers off and on for a few days. Not fun.

*Saturday: Finally feeling better and was able to get discharged. My mom's cousin, Kelly, was in town with his wife so they came to visit me in the morning and gave me an IPAD! Once I was discharged we went out for lunch and talked. That afternoon I took a nap and watched TV.

*Sunday: We met up with Kelly and his wife for brunch at Hell's Kitchen. I got the french toast. It was delicious. Afterwards we went to the store to pick up some food and then back to the Ronald McDonald House for the rest of the day.

*Reason of the Week: I haven't had any visitors lately and none of my friends ever made it up to visit like they promised so it was a nice treat to have family in town. Family is always a reason to smile.*

Post Transplant (Week 13)

*(Day +83), Monday, (August 2nd) was painful. I was so sore from the spinal tap so I basically just took a bunch of pain meds and slept all day. Nothing really exciting. I don't remember much of this day because I was so out of it.

*(Day +84),Tuesday, (August 3rd) was a little better. I was still sore from the spinal tap but I did manage to be awake and alert for most of the day. I also left my room and walked a few laps around the unit. It took me forever to walk a few laps because I kept stopping to talk to the nurses. I also had to drag my pole with me so I couldn't walk very fast. I can't wait until I'm not hooked up to this pole anymore. It slows me down and gets in the way of everything.

*(Day +85),Wednesday, (August 4th) was a crummy day. I was supposed to go to the National Poetry Slam but I felt so crappy that we didn't go. I also got an echo done and they found a cardiac effusion in my heart (fluid around the heart). Apparently it's not a big deal and should go away. Other than that, I just had a visit from the pain team because we're trying to find some drugs that will take this terrible back pain away.

*(Day +86),Thursday, (August 5th) was a boring day. I just rested because I wasn't feeling well. Still haven't made it to the National Poetry Slam yet.

*(Day +87), Friday, (August 6th) was a little better. Three weeks from today I have my check-out meeting and then I get to come home! This morning I woke up and my headache was gone. Finally. My back still hurts along with my ribs and chest. My throat also still hurts but the docs looked at it and said it looked fine. The pain team gave me some pretty strong drugs so I was pretty drowsy all day and kept falling asleep. Besides sleeping, I spent my day mostly just watching TV and being social with the nurses. I'm starting to feel better but I can tell I'm still fighting something. Hopefully it'll get better soon.

*(Day +88),Saturday, (August 7th) was a better day. I felt better so I was able to leave the hospital for a few hours to go to the National Poetry Slam. I got to meet Anis Mojgani, my favorite slam poet. He was super nice and signed my DVD and book. I also got a t-shirt. Afterwards we ate at white castle for the first time ever. I got the mini cheeseburgers and cheese fries. It was basically cheese fries with a spicy cheese sauce on top. It reminded me of the cheese sauce from taco bell. It was awesomely delicious but also kinda nasty.

*(Day +89),Sunday, (August 8th) was a boring day. I was supposed to be discharged but I still wasn't feeling good so they decided to keep me. I mostly just rested all day.

**Reason of the week: I was blessed enough to be able to attend the 2010 National Poetry Slam this year. I saw some amazing poets perform. Good poetry is definitely a reason to smile. **

Post Transplant (Week 12)

*(Day +76), Monday, (July 26th) was a pretty routine day. In the morning I had to go to the BMT clinic for blood work. I spent most of the day relaxing and watching TV. Lately I've been craving weird things and I happened to be craving taco bell so we had taco bell for dinner. After dinner my brother rode go carts outside the house. Every week they bring out go carts for the kids to race with. This week Jameson was the only kid to show up so he spent a good half hour driving around and around in circles. I didn't ride the go carts but I sat outside and watched him. The weather was beautiful. It felt great to breath some fresh air.

*(Day +77), Tuesday, (July 27th) was a pretty boring day. I spent my morning at the BMT clinic getting a red blood cell transfusion. After that I was pretty groggy so I just went back to the RMH and laid down. I've been feeling sick for a few days and I think it might be meningitis again. I hope not. I keep getting headaches everyday and I've been more nauseous lately. Hopefully it will go away soon. The transfusion will also help boost my energy, which I desperately need.

*(Day +78), Wednesday, (July 28th) was a fun day. I went to this class called "Look good, feel better". It's a class for BMT patients and they teach you how to put makeup on to hide certain features that you gain during transplant. I learned how to make the bags under my eyes go away, how to do eye makeup even while you have the shakes, how to take care of your dry skin and much more. At the end of the class we got to keep all of the makeup. Each bag of makeup was worth about $200. I got some really good products and I can't wait to start using them when I feel better. After that we went to a place called Pizza Luce for dinner. My mom ordered a baked potato pizza. It was actually pretty good. There was a layer of mashed potatoes, then cheese, then onion and tomato and bacon and sour cream and broccoli. My brother and I ordered this really good pasta with spicy meatballs and I had a wonderful caesar salad. It was a really good restaurant and we'll definitely be going back to try more crazy pizzas.

*(Day +79), Thursday, (July 29th) was not a good day. I spent most of the day just laying around watching TV and relaxing. I'm starting to get frustrated because I just don't have enough energy to do anything. I feel lazy just laying around all day but my body can't handle much more than that. I ate dinner at the RMH with my mom and brother and immediately after I got really nauseous so I went back to our room. Within seconds I was throwing up. I threw up twice that night. Hopefully now that I've gotten that out of my system I'll start to feel better.

*(Day +80), Friday, (July 30th) was a pretty boring day. I still didn't feel good so I've just been laying around trying to recover. We did have a meeting with Dr. Tolar. The meeting was actually for Jameson, not me. Jameson originally was supposed to be my donor but then they ran some tests and found that he has the same genetic mutation that I do. So, if I got his marrow it wouldn't work. The weird thing is that he has the genetic mutation but no disease. He's completely healthy. Dr. Tolar is very fascinated by this. It's extremely rare to find a family with two kids who have the genetic mutation and one kid gets sick from it and the other doesn't. Dr. Tolar wanted to meet Jameson because Jameson and I are helping in his research and knowledge of this disease. He just did a basic exam and then we talked about the fact that there is a chance he could develop some sort of bone marrow failure. Thankfully he's healthy right now and usually DC hits at a younger age so I think he's not going to develop anything. At least we hope.

*(Day +81) Saturday, (July 31st) was a bad day. I woke up with a really bad headache, sore throat, pain in my back, pain in my ribs when I breathe and pain in my chest when I breathe. We took my temp and I had a fever of 101.1 so we had to go back to the hospital. My fever rose a little bit but then tylenol brought it back down. It took forever to get pain meds for my head and back. I had a chest x-ray done but they didn't find anything. My dad also had to drive up to get Jameson because a parent has to stay with each patient at night and Jameson had nowhere to sleep.

*(Day +82), Sunday, (August 1st) was an awful day. I spent the morning hanging out in my hospital room with my dad. The doctors ordered another spinal tap so they could figure out what is making me sick and giving me fevers. The tap was supposed to be at 8 a.m. so we got up early and waited. and waited. and waited. Finally around 3 in the afternoon they took me down to get my spinal tap. I thought it was strange that they were taking me to a different place than I usually go for biopsies and taps but I didn't say anything. We get to this random room and the nurse tells my dad he has to leave so he goes to get some breakfast because you can't eat or drink before spinal taps so I was starving by this time. Within five minutes I was on the table and the doctor is ready to start. I notice he hasn't numbed the area or given me any sedation drugs so I asked about it and he said that sedation wasn't necessary because the tap would only take five minutes and it wasn't a big deal. That's when I started to get nervous. Last time I had a spinal tap they sedated me so I knew something was off. The doctor also came in wearing jeans and a polo and tennis shoes. Very unprofessional. He also never introduced himself so I still don't know his name. And he didn't wear a mask during the procedure because he said it was "too hot". They make docs wear masks for a reason. To protect patients like me from germs. Anyways, so then he starts the procedure and I feel the needle go into my spine. It hurt like hell. He poked me three times and all three hurt equally. Then he started taking fluid out but was having problems getting enough fluid so he kept moving the needles around in circles to try to get more fluid. At one point he tells me that he keeps accidentally brushing up against a nerve. I told him that I had a really sharp shooting pain go down my leg and he said it was because of the nerve. It was so painful and I tried so hard not to just start balling right there in front of him. As soon as we were done he walked out and left. DIdn't even say a word. When I got back to my room I just started balling and I told the nurses what happened and they made some calls and I'm pretty sure he's going to be talked to. My doctors clearly ordered sedation for the procedure and the doctor ignored it. It's very uncommon to get a spinal tap without sedation or at least numbing at the site. I was extremely sore after the procedure so I spent the rest of the day resting. My dad and Brother left to go back home. I won't see them again until I come home for good.

**Reason of the Week: This week I went to the "Look Good, Feel Better" class and I am very appreciative of all of the companies who donated makeup to the National Cancer Society so that they could hold events like this. Wearing makeup boosts my self esteem and new makeup is just what I needed at a time when I don't even like to look at myself in the mirror. These companies are truly appreciated. Donating to a good cause is always a reason to smile (RTS).

Post Transplant (Week 11)

*(Day +69), Monday, (July 19th) was a pretty crummy day. My mom and I both woke up feeling like we had a cold. I had an appointment at the BMT clinic in the morning and ended up being there for several hours because they were super busy. I know I've mentioned before that there are a few kids here going through transplant with a disease called EB. EB is super rare, almost as rare as my disease and not many transplants have been done for EB. EB patients from all over come here to get transplanted because of their expertise. On Monday there was a doctor from the UK who came in town to meet with the EB kids and brought a film crew who was shooting for a documentary about EB. At first I didn't like the idea of them doing a documentary about EB because EB is such a complex disease. I don't know much about it but I do know that the EB patients are mostly wrapped from head to toe in mummy-like bandages because the disease causes your skin to look like its burnt/peeling off. I honestly believe it's the most painful disease there is. I could easily see a program about the disease turning into a sort of "freak-show/let's get good ratings" type things. However, I watched the camera man interact with one of the EB patients and I could tell he actually genuinely cared about learning more about this rare disease. Before even starting the shoot, he sat down with the little boy and started building a relationship. He even let the little boy play with his camera. I overheard him ask the boy if he was ever teased. The little boy responded by asking the camera man if HE was ever teased. The camera man asked "what for?" and the little boy said "your voice". Apparently the little boy thought his UK accent was comical. .

*(Day +70), Tuesday, (July 20th) was a pretty uneventful day. I had to go to the BMT clinic in the morning to get platelets. While I was in clinic I finally met another patient who is around my age. We had been talking on facebook but she didn't get out of the hospital until now. I'm hoping we'll both be feeling well soon so that we can hang out and do stuff. I spent the rest of the day watching TV and resting because I'm fighting some sort of bug, I think it's just a cold because I haven't had any fevers. My mom and my brother went to check out some local lakes. There are tons of lakes around this are and they are beautiful. I'm hoping to get out and see them soon. Maybe pack a picnic or lay out for an afternoon to get some sun. One exciting thing of the day: exactly one month from now will be my +100 day mark. Then about a week after that I get to come home. I can't believe I've already been here since Mid-April and that I'm already a month away from coming home. I'm ready to get back to my life!

*(Day +71), Wednesday, (July 21st) was a torturous day. Kidding. Not really. Anyone who has ever had an ultrasound knows my pain. My doctors ordered an ultrasound as a precaution and for the exam, you have to have a full bladder. Many people don't know this, but as a child my biggest fear in life was being somewhere without a bathroom. I'm not even kidding. I had enormous anxiety about it. Over time I got over it but needless to say, I never like to be in a situation where I have to pee...but can't. This is why I hate ultrasounds. My appointment was for 3:00 so I drank two huge glasses of ice tea at 2:15 and was done by 2:30. I got to my appointment and already felt like I could pee. The lady starts the exam which consists of her putting cold jelly all over my stomach and pushing on my bladder with that tool that lets her see everything on a screen. Then she turns to me and tells me my bladder is empty. I wanted to cry. I spent the next 45 minutes waiting to see if my bladder would fill. According to her, it didn't. She tells me this as my legs are crossed and my feet are dancing to keep from peeing. She made me leave, drink more water, and come back at 4:30. I danced back to her exam room at 4:30 and THANKFULLY my bladder was full enough for her. The exam took ten painful, bladder pushing minutes and just when I thought I would be able to leave and go to the bathroom....she told me she was just a tech and would have to go show the pictures to the radiologist to make sure she got all the right pictures taken. That happened to take 30 minutes. In the end, I had to wait close to 3 hours to pee. I was not a happy camper.

*(Day +72), Thursday, (July 22nd) was a pretty boring day. I basically rested and watched TV all day while my mom worked and my brother played on his new XBOX 360. For dinner my mom picked us up Jimmy Johns, which I hadn't had in a loooong time. It reminded me of home. After dinner we went downstairs to play bingo. Every thursday, the Ronald McDonald House hosts bingo night. It's a pretty big deal. They have a real bingo machine and tons of prizes that are actually pretty cool. I didn't feel like picking anything out so every time I won, I would give the card to my brother. By the end of the game my brother ended up with five prizes.

*(Day +73), Friday, (July 23rd) was a nice day. I had an appointment in the BMT clinic in the morning to get platelets. For lunch we went to this italian deli place that was suggested to us by one of the nurses in clinic. It turned out to be really good. I had a ham, swiss and dijon mustard panini on focaccia with a side of caesar salad. It was delicious. My brother got the mac and cheese and I stole a bite, it was also really good. It was that good, homemade mac and cheese done right. If we go back, I'd probably get that instead. Afterwards we drove along some of the lakes. Minneapolis is such a strange city. There are tons of bike trails and outdoorsy-type things to do. Which seems strange because a majority of the year it's too cold to utilize them. But during the summer there are bikers everywhere and portions of the lake are designated for swimming. They even have actual beaches. WIth sand. I really want to go down to one of the beaches for a day. I can't swim in the water because of the germs but I could at least lay out in the sand and get some sun. Who would have thought you could lay out on a beach....in Minneapolis?

*(Day +74), Saturday, (July 24th) was a frustrating day. I couldn't sleep the night before so I was not happy when my mom woke me up at 10:30 to go downstairs for brunch. Thankfully the food was good but I climbed back into bed as soon as possible afterwards. We had planned to go to this contest sponsored by Red Bull where teams build these boat/plane things and run them off a ramp into the water but when I woke up, I wasn't feeling well. I'm starting to get really frustrated because I want to get out and do things but I'm also trying to be responsible and I knew that it wouldn't be a good idea for my body for me to push myself that much. I've been trying to act like I feel well because my mom is going stir crazy and wants to go out every day and do at least one thing a day but I just can't keep up. I feel bad that I can't but I don't want to jeopardize my recovery. I did get out for dinner. There are many things I miss about Kansas City. My friends, family, highways that make sense, good BBQ and mexican food among other things. My mom has tried and failed a few times at trying to find mexican food that is as good as the mexican food you can find in KC. We decided to try again and checked out a place called Pepitos. It turned out to be pretty good. The salsa was fresh and the chips were decent. It satisfied my mexican food craving but it definitely didn't compare to KC mexican food. Oh, how I miss home.

*(Day +75), Sunday, (July 25th) was a boring day. I wasn't feeling very well so I rested all day. I feel like I have a cold or something. My throat is sore and I keep getting headaches. So far, no fever. Good news is that my blood sugars have been better because we're decreasing my steroids so hopefully I won't have to get insulin for much longer. It's quite a pain to have to check my blood sugar every time i eat, then figure out how many carbs I eat, then turn that into units of insulin and then inject myself with the insulin. It's such a long process just to eat. The only bright side to that is that I've stopped snacking because I'm too lazy to do all of that just to grab a handful of chex mix.

*Reason of the Week: This past week I've been feeling pretty crummy and as a result, I haven't wanted to get out of bed much. Because my brother, Jameson, is in town, he's sort of become my slave. I've been asking him to do favors like microwave food for me, grab clothes from upstairs, etc. He never complains or says no. Great brothers are always a reason to smile (RTS).

Post Transplant (Week 10)

*(Day +62), Monday, (July 12th) has been another great day. I had an appointment at clinic this morning at 10 a.m. just to get some labs drawn and meet with Dina, a nurse practitioner. Afterwards we came back to the house and ate lunch outside because the weather was so beautiful. I spent the afternoon napping and catching up on emails and blogging. It was a nice, low-key day. I didn't get any transfusions today, which was great. We also ate dinner at the house and then I skyped with my dad and siblings. I haven't seen them in about a month so it was nice to talk to them. THey're coming up this weekend for their monthly visit. I'm excited to see my brothers. Both of them have birthdays coming up so we plan to celebrate their birthdays while they're here. I'm feeling so much better. I have more energy and I'm napping less. I've even been walking to my appointments. It's not very far from the house but it takes about 10-15 minutes to walk there. It hurt to walk that far at first but every day it's getting easier. I'm not having any pain except for my legs/feet. I'm still about 15 pounds heavier than my normal weight. Now that I'm out of the hospital I should drop the weight pretty fast because I'm not having fluids pumped into me 24/7. Right now my feet are so swollen that I can't even wear real shoes. I have to wear slippers everywhere. Hopefully the swelling will go down soon. Other that that, all is good.

*(Day +63), Tuesday, (July 13th) was an exhausting but fun day. I didn't have to get a transfusion or go to clinic for any reason so it was our first day off. I slept in and then we went to meet our care partner for lunch at my favorite italian restaurant in the Mall of America. We did an early lunch so the restaurant was empty, clean and somewhat germ free. (Here's hoping). Everywhere we go I bring hand sanitizer and wipes so that I can keep my hands clean and we can clean chairs and tables that we sit at. That, combined with my mask, will really help to minimize my chances of picking up viruses- which is our biggest threat right now.After lunch my Mom and I did some shopping. I've been pretty down on my self lately because of all the weight gain so it was nice to shop and buy some new, fun, summery clothes. Now it's just more motivation to lose weight so that I can look super good in my new clothes. My mom and I also went and saw Twilight. The theater was pretty much empty so I wasn't freaking out about germs. I still have to wear my mask everywhere that I go (except for when I'm eating) but I don't really mind it. It does attract attention, which is annoying. Like, what is there to look at? Have people never seen a girl with a scarf and mask? It's called chemo. It happens. It's not like I have some growth on the side of my face or a third arm. I don't understand what the excitement is. I've found that people around my age try very hard to look away so you know they aren't staring at you. And little kids are the ones who turn to their moms and say "mommy, why is she wearing that?" without realizing you can hear them. But my favorite are the old people. Old people don't even bother to try to be discreet. They'll stare straight at you and not even care that it makes you uncomfortable. For example, After Twilight my Mom and I went and tried this Crepe place in the mall that I've been dying to try. I got a crepe with cinnamon sugar and ice cream. It was delicious. I was sitting at the table and I look over and see a family and the dad is just staring at me. Not even in a curious way. More of a "you're a freak show" type of way. I don't get it. I understand curiosity. But I don't really like being stared at and whispered about. At first I wasn't going to bother getting a wig because I didn't think it would be that big of a deal but after that, I've decided to look into getting a wig. We have an appointment to look at wigs tomorrow afternoon. After Crepes we went back to the RMH and I just took it easy for the rest of the day. My feet are still swollen so they were hurting pretty bad from all of the walking. I feel my body getting stronger the more that I move around so even though it hurts, I know I need to stay active.

*(Day +64), Wednesday, (July 14th) was a relaxing day. I had to go to clinic in the morning to get a platelet transfusion but after that we didn't have anything planned so we just came back to the house. On wednesdays they do cook-out lunches at the RMH so we ate lunch and talked with some of the other housemates. My mom has been quite the social butterfly while we've been here. She's become friends with almost all of the parents. In a way, it's nice to build relationships but it's also hard because some of their kids aren't doing well and you get emotionally attached to them. Almost every family has some form of a blog and we all read each others' blogs, too. There's one little girl here who is absolutely adorable. She just had a transplant and things seemed to be going well but her dad just updated her blog to inform everyone that she has developed VOD (the liver failure disease that is 90% fatal, the one that I was at risk for and the reason I had to delay transplant). My heart breaks for her and her family. Throughout transplant, VOD was my biggest fear. Even though we worked hard to get all of that extra iron out of my liver, I always feared it wasn't enough and that I would develop VOD. So far, I've managed to avoid it and it looks like I'm out of the woods in terms of developing VOD. But to hear that she has it is so heartbreaking. How do you face a family after hearing something like that? There was another boy on the unit who I had heard of. I won't say his name but he always wore a cowboy hat around. My mom used to tell me about how much fun he was having driving on the bikes in the hall. I just found out he passed away. It's so hard and surreal to know that you're just doors away from patients who aren't going to make it. Thankfully none of the patients I've talked to have passed away but you always run that risk. It's scary. It almost makes me feel guilty for doing well. At lunch on wednesday we ate with a mother of a girl who is around my age. The girl isn't doing so well. Her mom asked how I was doing. I felt horrible just telling her that I felt great, knowing that her daughter was having such a hard time. My mom keeps encouraging me to make friends but I'm scared to. There are several teen girls being transplanted right now. One is 17 and is already out of the hospital so we talk sometimes. One is somewhere around my age (the girl with the mother we talk to) but she's still in the hospital so we haven't been able to talk yet. One is 20 and she's still in the hospital but I talk to her mom and I talk to her on facebook. She should be getting out of the hospital soon so we can hang out. There are a few other girls around our age but I haven't talked to any of them yet. It'll be nice when they all get out so we can all hang out but I just hope that all of them get better because I don't know how I could handle something happening to one of them, even though we aren't friends yet. It's such an interesting environment to be in. Everyone is so loving and generous but there's an undertone of fear and pity. It's like one big family here, which is great because it creates a support system. But it also creates heartbreak every time we lose someone- which is more often than anyone would like.

*(Day +65), Thursday, (July 15th) was a boring day. I wasn't feeling very good so I mostly slept all day. I really only left our room at the RMH to go downstairs for dinner. It seems like I have a few good days and then I wear myself out and have to rest for a few days. It's hard to find the right balance. It's frustrating because my mind wants to get out and do stuff and be active and live again but my body just can't handle it. I never thought I'd say this but....it's hard to be lazy. Being on campus also makes it hard because every day I see these college kids outside playing volleyball and having cookouts and going swimming and I can't do any of it. I feel lame. Nobody likes to feel lame.

*(Day +66), Friday, (July 16th) was a fun day. We started off by going to the National Cancer Society so I could pick out a wig. All along I had thought I didn't want a wig because I didn't want it to look fake and I have to wear a mask everywhere anyways so people would stare regardless. However, after going out with my bald head and mask, I discovered that way too many people don't have the best manners and don't mind staring. So, I decided I'd give a wig a try. I tried on some wigs that were the same color as my original blonde color but they were all either too long or too fake-blonde. Then I tried on some reds for fun but I looked ridiculous. Finally I found a brunette wig that looks really natural. It's straight and short and it has bangs. It doesn't really look like me but it's better than being bald. All of the different styles of wigs have names and the style I chose was "Karina". Karina has been very kind to me so far except for making my head sweat in the Minneapolis summer heat. When Karina is not on my head, she resides on top of a cowboy hat so that she keeps her shape. Afterwards, my mom and I went to this really cute french restaurant. It was delicious. That night I mostly just worked on cleaning up my loft and waiting for my family to get in town.

*(Day +67), Saturday, (July 17th) was a crazy day. I had to be at the BMT clinic at 8 am to get a platelet transfusion but of course the platelets weren't ready so we sat around for about an hour. Afterwards I went back to the RMH to get ready because my family was in town. My dad, stepmom, two stepsisters, brother and half brother all went to the Midtown Global Market for lunch. I've talked about the MGM before, but it's basically this huge building filled with stalls where people sell food and goods from all over the world. My dad and stepsister, Bre, ordered from a mexican restaurant. My stepmom and I both ordered from a seafood place. Jameson ordered from a Jamaican place and my other stepsister, Brittany, and my half brother, Ethan, both ordered from a chinese place. Ethan's plate of rice and chicken was bigger than his face and he spent a good half hour picking up wads of rice and shoving them in his mouth. By the time Brittany and Ethan were done eating, it looked like they hadn't even made a dent in their plates. Although, I think Ethan ate more than Brittany. The kid loves his chinese food. Afterwards we shopped a little bit and then came back to the RMH to hang out in the arcade room. Ethan fell in love with the DDR machine. By the end of the day I was absolutely exhausted and pretty much passed out immediately.

*(Day +68), Sunday, (July 18th) was Jameson's 14th birthday. My family left in the morning but Jameson stayed behind and is going to stay with us for a few weeks. Unfortunately, I wore myself out the day before so I was a party pooper on Sunday. Jameson opened all of his presents and then spent most of the day playing on his new xbox 360. I was still feeling miserable later in the day so they went to his birthday dinner without me. I don't think he minded having some time alone without me.

**Reason of the Week: I bought some new clothes this week at the Mall, even though I was still way above my normal weight because of all the fluids, and now they are starting to fit. Any ounce of normalcy is always a reason to smile (RTS).

Post Transplant (Week 9)

*(Day +55), Monday, (July 5th) was not a very good day. Turns out I have meningitis and pneumonia. They've put me on antibiotics to fight it but I'm nervous about both. I haven't had any more fevers so I'm hoping that means the antibiotics are working. I've also started gaining water weight again. When I left the hospital it only took me like three days to get back down to my normal weight but as soon as I was re-admitted they started giving me too much fluid and I gained ten pounds in one day. Just in water weight. My feet are so swollen I can't fit my shoes on. I have to wear slippers or flip flops. None of my regular clothes fit so I'm back to wearing my fat girl clothes. I look like a pregnant woman. My head still hurts but I'm trying to take less pain meds so that I can get out of here faster. I'm really getting sick of being stuck in this room.

*(Day +56), Tuesday, (July 6th) has been a great day so far. I got up around 8:30 and ordered breakfast. I took all of my morning meds and got my labs back. My counts are looking great. My platelets were 16,000 (my normal before transplant was 4-6,000). My Hemoglobin (red blood cells) was 9.3 (my normal before transplant was 6-7). My ANC was 3300, which is in normal range! My white blood cell was also 4.6, which is in the normal range too! It's so great to see my donor cells making progress and growing. My cellularity is normal (from donor cells) and the donor cells seem to be taking over nicely. The only downside is that I still have pneumonia and meningitis. Thankfully I haven't had fevers for awhile and I'm on antibiotics so I'm not contagious. I'm also still having problems with the swelling in my legs and feet. My headache still isn't gone but it's getting better and I'm hoping to leave the hospital in the next few days.

*(Day +57), Wednesday, (July 7th) was a great day. My counts came back and they were all really good. We also got the results from my second bone marrow biopsy. My results showed that I'm 100% donor cells from one donor. Meaning one of the donors has taken over 100% and is now producing cells. This basically means the transplant worked! I still have to deal with infections and meningitis and pneumonia but this is very encouraging. I felt really good today. I even walked down to the lobby and outside to the mailbox to mail something. I got some funny stares as I walked by with my bald head, hat and pole with all of my machines. I'm starting not to care. I've also been walking laps around the unit to get some exercise and show the docs that I'm ready to leave. Sometimes I don't even bother to cover my bald head. I'm starting to get some fuzz but it's hard to tell what color it's going to be. I'm hoping for blonde. We'll see.

*(Day +58), Thursday, (July 8th) was another great day. I got up early and made my own breakfast and got my own laundry. The doctors decided that I'm doing well so they gave me a pass to leave the hospital for a few hours. This was perfect because we had some friends coming in town. I started talking to a woman from New York named Elizabeth who has a 7 year old son named Alex who also has DC and is getting ready to transplant within the next year. They flew out here to meet with Dr. Tolar, who is also my doctor, to talk about transplant. I've grown close to them so my mom offered to pick them up from the airport this morning. She brought them back to the RMH and then they took our car out to the Mall of America. We met up with them for dinner at the RMH. The dinner was really good! Someone caters food every night and some nights are better than others. Tonight they had ribs, grilled chicken sandwiches, cole slaw, tons of fruit, homemade mac and cheese, tons of sweets and drinks. After dinner Alex and I went and played in the Arcade room. Alex beat me. Then we played bingo. They have an actual bingo machine and tons of really cool prizes. I was the only one at our table who didn't win anything. That's okay, considering all of the prizes were barbies and action figures. It was really nice to be able to get out of the house. Except for the puffiness and weight gain, I feel fine. I'm hoping to get a pass to leave tomorrow too so that we can take them to Midtown Global Market. We went there before transplant and I blogged about it with pictures. Hopefully I'll get some pictures tomorrow if they let me leave. Everything seems to be going well today, hopefully it continues.

*(Day +59), Friday, (July 9th) was an awesome day. I woke up and had breakfast and took all of my meds early. The doctors agreed to let me leave from 2-8 pm so I did my makeup and got ready to leave. I had to get a platelet transfusion in the morning and then Alex, Elizabeth and her Mother came over after their consultation to visit. Then we went to the Midtown Global Market. I blogged about it before when we first went so go back and read that blog if you don't know what I'm talking about. For lunch, I had a crab cake burger from the seafood stall and I had chips and homemade guacamole from the mexican stall. Kind of a weird lunch but soooo good. For dessert, I finally tried a churro from a mexican bakery stall and I also had a scoop of italian ice from that stall. I got half a scoop of cherry and half a scoop of lemon. It was delicious. I also bought some more bracelets that were hand made by women in Ghana and the money goes back to them. I got a hot pink braided bracelet and a bracelet that is woven with my name on it. I also bought an eco-friendly t-shirt. Last time I bought a bamboo shirt but it shrunk in the washing machine because we didn't know it should be hand washed. This time I got a shirt made out of Modal, which is made out of beech trees. It's supposed to be very eco friendly. I also had them personalize it by getting "reason to smile" printed on it. I'm really excited about it. Here's a picture:

After the Market we went back to the RMH for dinner. We lucked out and had another really good dinner. They catered pulled pork sandwiches, corn on the cob, pasta salad, fresh fruit and drinks. It was really good. Then Alex and I started to watch a movie in one of the living areas but I fell asleep on the couch and ended up taking a nap. We decided to go back to the hospital around 7:30. We said our goodbyes and took some pictures together.

It's so weird, we just met them but I feel like I've known them all my life. We'll definitely be keeping in touch. That night I took an early shower, took my meds and watched some OC. I'm on season 4 now. Next I think I'm going to start watching Felicity. Someone let me borrow their season 2 of Felicity but I don't have season 1. Anybody have season 1 of Felicity that I could borrow? Anyways, It felt so good to get out and walk and act normal. I wore normal clothes but I still had to wear my mask, a hat, and flip flops because my feet are too swollen for real shoes. I got some stares but I didn't really care. I was just happy to get fresh air and drive in a car. It was really weird to be in a car after so long. My mom was going 35 mph and I felt like we were speeding down the street. It's so weird to think about the fact that I haven't really had fresh air or been in a car since april. It's not like riding a bike, it felt weird to be out. But I loved it. I'm getting discharged tomorrow so I can go to the RMH. I can't wait!

*(Day +60), Saturday, (July 10th) was another great day. I woke up early and had breakfast and waited for the doctors to come by. When they finally made it to my room they said that I could be discharged. It took awhile to get all of the paper work done and I had to get a platelet transfusion and a red blood cell transfusion so I didn't actually get to leave the hospital until around 5:00 pm. We went straight to the RMH and had dinner, which was super good. Then we went to our room and I spent the night setting up my stuff. Our room is really cool and we have this loft that I've claimed as my bedroom. There are two twin beds, a tv and some drawers and stuff. I've really spiced it up with pictures of NYC and plenty of pink and some other personal stuff. The loft will be my room. There's also a bedroom on the main floor where my mom will sleep so I don't have to hear her snore. It's weird to sleep by myself. I've been sleeping a few feet away from my mom since april. It's nice to have some peace and quiet while I sleep. The only annoying thing is that the bathroom is on the main floor so I have to climb down a spiral staircase every time I have to go to the bathroom. This is very inconvenient during the night when you're half asleep. Anyways, that's about it. I'm feeling closer to normal than I ever have. My twitching is getting better and I'm not nearly as tired as I had been. I still have a bunch of water weight, I'm about 15 pounds over my normal but it shouldn't be long before I get that weight off. Well, that's all for today. Tomorrow we're going to attempt to go into the real world for brunch and a movie so I'll update you on how that goes.

*(Day +61), Sunday, (July 11th) was another great day. I finally got out into the real world! We got up early and went in to clinic so I could get a platelet transfusion. After that, we went to this restaurant called Hell's Kitchen for brunch. It was really cool. They had a live band and everything. Here are some pictures: (including the first picture of me with no hair)

Picture of part of the restaurant

Live band

Me with some delicious hot chocolate

Me standing next to a sign that says "Welcome to Hell"

After brunch, we walked over to target. Minneapolis is the home of target so all of the targets are pretty outrageous and huge. This one happened to be multiple stories. I bought two dresses and a jumper. My goal is to lose all of my water weight so I can wear them. Here's a picture of the target:

After our target adventure we headed back to the Ronald McDonald House so I could take a nap. We ate dinner at the house and then went to see Sex and the City 2. Unfortunately, I didn't like it very much. I'm a true SATC fan but the movie was a little over the top and some of the outfits were awful. Oh well, SATC still has my heart. We got lost on the way back so we ended up getting in pretty late so I took my meds and took a shower and went to bed right away. I was pretty tired from my big day out. It felt so good to get out of the house and into the real world. It's a little awkward to walk around with a mask on and a hat or scarf. I got a few stares, mostly from little kids. One girl in target turned to her mom and said "mommy, why is she wearing a mask?" and then kept staring at me. I guess I don't mind, they're just curious. It just kind of makes me feel like a freak show. I'm sure I'll get used to it. This is sunday so stay tuned for a new post of week 10!

**Reason of the Week: Elizabeth, Jane and Alex visited this week and I'm so glad that they did. I'm in desperate need of visitors and having them come was such a blessing because it felt like family was visiting. I really needed it. It was hard to say goodbye to them. Visitors are always a reason to smile (RTS).

Post Transplant (Week 8)

*(Day +48), Monday, (June 28th) was like it never happened. I woke up long enough to swallow pills and eat at some point. Still battling fevers, muscle pains, stomach pains and a killer headache. The only excitement was me waking up in the middle of the night to throw up everywhere. Not pleasant.

*(Day +49), Tuesday, (June 29th) has been another crummy day. I'm still on pain meds for my headache. It makes it impossible to do anything. I'm sensitive to light, sound, motion and just about everything else. Thankfully my stomach is doing better and I was able to catch up on all of my pills and I even ate two meals. The doctors have decided they want to do a spinal tap tomorrow because they think I might have Meningitis. If I do and they catch it now, they should be able to treat it. Both of my parents don't want me to do it because of my bleeding risk and because spinal taps are dangerous for anyone, especially with my heightened bleeding risk. All the other doctors (except one) think I should do it. Including my doctor, Dr. Tolar. I've decided I'm going to sleep on it and make the decision in the morning. If I say yes, I might not be online for awhile so don't freak out!

*(Day +50), Wednesday, (June 30th) has been a busy day. I had to get another bone marrow biopsy. If you don't know what a bone marrow biopsy is or you want to job your memory, look back to week five. It's the June 22th post. After that, I immediately got a spinal tap. I was a little worried because I've never had one before and I've heard it's pretty risky and there's a chance of internal bleeding (which is a bigger risk for me because of my inability to clot well). They wanted to do a spinal tap because my headache, stomach pain and fever have come back and they think I might have meningitis. My mom and dad said no. The doctors all said yes except for one. I ended up saying yes. I'm glad I did because the early results are already showing that it is meningitis. Now we have to wait a few more days for the results that will tell us whether is bacterial or viral. For my situation (being immunocompromised) we want the results to be bacterial because then it will respond to meds. If it's viral, we have to let it run its course and hope everything works out. I'm very glad that we ended up doing the spinal tap because we got some answers. Oh, the joys of being 18 and able to make your own decisions.My back was pretty sore. I still had a little soreness from my last biopsy, plus the new one and the spinal tap so I spent the morning resting. Our care partner, Irene came by to sit with my mom during the surgery because we were all nervous. She also brought bagels from my favorite place here- bruegger's bagels. I slept more in the afternoon. For dinner, my mom went to this restaurant called Kafe 421. We went there once before I was admitted and it was really good. This time I tried one of their pastas and it was delicious. Definitely better than cafeteria food. I was pretty cranky but ended up feeling much better after showering. That's about it. Just waiting for answers and waiting to get better so I can get out of here. On a happy note, Today is +50, which means I'm halfway done! Technically I'm more than halfway because I've been here since late April and I was admitted to the hospital on April 30th. Close enough.

*(Day +51), Thursday, (July 1st) has been on okay day. Highlight of the day: My red blood cells (hemoglobin) was 9.2 so I don't need a red blood cell transfusion soon (normal is 11.7-17.7) so I'm getting close to normal. My Platelets were 33,000, which is still low but very close to my personal best in five years! More excitingly, my ANC was 4600 (normal is 1600-8300). Yesterday I was 3800 so I'm improving vastly and I'm in the normal range! My white blood cell count was 5.5 (normal is 4.0-11.0) so I'm normal there also! I know this is a bunch of jibberish for some but it basically means the donor cells normally producing three out of the four important things in your body. Unfortunately, my counts came back saying that my iron and kidney functions are not right. They ran some tests today and we'll know them in a few days. My spinal tap also revealed that it does look like I have meningitis. I'm on antibiotics until we get the results back. My fever has gone down so the antibiotics seem to be working and nobody seems to think it's going to be a huge deal to treat it. I'm obviously a little nervous to get this while I don't have much of an immune system. These next few days will be very hard for me because I'm anxious to see what's going to happen. I pray that my good luck continues. This also explains my headaches. I'm going to be in the hospital longer than we expected but I'm hoping to be out sometime this weekend/early next. I can't believe It's already July 1st. I've been here for more than two months.

*(Day +52),Friday, (July 2nd) was one of those days that I just wish never happened because it was just miserable and mundane. Good news: My morning counts were all still good or better and we found out that my cellularity is 60%. Which is perfectly normal. It's actually the same cellularity as my doctor! Bad news: My kidney levels are a little high so the kidney team is going to look at my tests and try to figure out how to lower it. My headache continued to get worse and my fluids were increased so I gained more water weight, which caused me to get even more bloated and it triggered my leg pains. I couldn't even stand without using my arms because of the pressure on the tops of my feet and the tightness in my back lower legs. I spent the day just resting and feeling miserable.

*(Day +53),Saturday, (July 3rd) was another bad day. I woke up to go for a CT scan to look at my head. They found fluid, which is normal but they did find more than last time. They also took a chest x-ray that saw some 'fluffiness' in my upper left lobe, indicating that I also have pneumonia. The doctors added another antibiotics to start fighting that too. My blood sugar was also really crazy all day. We don't really know why. The endocrine team gave us a scale to follow but the scale is messed up because I keep going from being hyperglycemic to hypoglycemic in a matter of minutes or hours. I mostly slept all day because my body was all messed up from my blood sugars and I felt awful.

*(Day +54),Sunday, (July 4th) was a bad day. I woke up from a really bad night of sleep because my headache was driving me crazy. During the night the docs sent in these 'compression stockings' for me to try because of the swelling in my feet and legs. They are essentially these really really really tight knee-high socks that hurt like a (you know what) to put on because it's like you're squeezing your skin even tighter. if you can imagine such a pain. I was groggy and somewhat drugged up at the time so my mom had to put them on for me and I whined the whole time. At one point I even said 'mom, I am NOT your friend right now'. She thought it was funny. I was serious. The day was a little better, my counts are all normal and/or rising. Still excited about my great cellularity! I haven't had any stomach problems lately and my head is feeling more manageable. Hopefully once the antibiotics fight off the Meningitis and the Pneumonia then my headaches will go away for good.

Sorry for the slacking on blogging! I've been very drowsy with the headache and I've been having eye problems like light sensitivity and blood in my eyes so I haven't been online as much. Please keep reading and comment so I know blogging is worth it!

**Reason on the Week: When deciding on whether or not to do a spinal tap (a major medical decision), I was able to make my own decision. Turns out I made the right one. Being 18 and having the opportunity to have control over my own medical decisions feels good and empowering. Being an adult is always a reason to smile (RTS).

Post Transplant (Week 7)

*(Day +41), Monday, (June 21st) and (Day +42), Tuesday, (June 22nd) are both a blur. Couldn't really tell you what happened because I was knocked out on pain meds. I pretty much only woke up to go to the bathroom, eat and take pills. I don't even remember what I ate or who my nurses were. I know I got antibiotics during both days and I know on the Tuesday that my white blood cell count was 3.4 and my ANC was 2300. Both are improvements and both are getting closer to the normal range.

*(Day +43),Wednesday, (June 23rd) was a much better day. My head and stomach were starting to feel better so I wasn't needing any pain meds so I was actually awake and coherent for most of the day, My day was more like my normal routine. I got up around 8:30 and heard that my white blood cell count was 4.3 (Normal is 4.0-11.0). My ANC was 3400. (Normal is 1600-8300). I haven't been in the normal range for over five years. My platelets and red blood cells are still being pokey so I'm still getting transfusions but they should start getting better soon. I took a nap in the morning, ate lunch, took another nap and walked several laps around the hall throughout the day. I took a shower and planned to go to bed early but ended up chatting with my night nurse, Em, until almost 2 a.m.. I promise to try to blog more often and not get so behind! Have a good day :)

*(Day +44),Thursday, (June 24th) was a good day. My migraine and stomach problems are better so I wasn't on any pain meds for most of the day. We learned that my white blood cell count continued to rise to 6.0! And my ANC jumped to 5,000! Both still in normal range, which is awesome! My fever has been gone for a few days so I get to leave the hospital tomorrow! I spent the rest of the day resting and watching TV and catching up on blogging/emails. It's hard when you get a week behind and then have millions of things to answer. But I finally got it all done. I also took some laps around the unit to work on my strength. My muscles are twitching less and I'm not getting out of breath as easily. I also walked all the way down and out to the front of the hospital and back. We only sat down once outside to enjoy the weather. I also discovered the massage chair on the unit and sat in that for awhile. My back has been hurting from sleeping so much and this chair was like heaven on my back and on my shaky legs. Then I took a nice shower and went to bed. Check back tomorrow when I get to leave!

*(Day +45),Friday, (June 25th) was a great day. I finished my antibiotics and I'm still fever free so they let me leave the hospital! We didn't get out until early afternoon and by the time we got back to the Ronald McDonald House I just wanted to sleep in a quiet setting. So I plopped down on the couch and slept until dinner. We ate at the house for dinner- chicken nuggets and macaroni. The people serving were really nice and funny. After dinner I rested because my stomach is so sensitive from all the meds and such. My mom went shopping so I had a few hours of alone time to just rest and be alone. It was awesome. I just took my pills and caught up on emails and now I'm about to go take a bath...yes, a bath (you don't get those in the hospital. you get crappy showers with cold water) and then I'm going to lay my fuzzy bald head down to sleep in a real bed where I will not be interrupted my machines and nurses and alarms and mysterious noises. I suspect this to be a very nice night.

*(Day +46), Saturday, (June 26th) was not a very good day. I was supposed to get a platelet transfusion in the morning so we woke up early to go to the bone marrow clinic and then when we got there we found out that the blood bank had screwed up and I wouldn't be able to get my platelets until the next day. I was feeling pretty crappy so I spent the rest of the day sleeping. I did manage to get up and go for a drive with my mom. We just drove around town and looked at potential cool places to go when I'm better. It was nice but I didn't realize how weird it would feel to ride in a car after so long. My mom was driving like 30 mph and I felt like I was on a roller coaster. I hadn't been in a car for like a month and a half. Driving is not like riding a bike. I found myself clutching my seatbelt and the handle on the door because I swore we were going to hit something or someone. It was also kind of frustrating because there were all these things I wanted to do and places I wanted to eat and places I wanted to shop. But I couldn't even manage to walk long enough to do that. eat dinner and shower. Having to check my blood sugar before I eat, count up the carbs and be given insulin is such a pain. I'll be so happy when my temporary diabetes is gone.

*(Day +47), Sunday, (June 27th) was another bad day. I woke up feeling really crummy and even turned down an offer to go see Sex and the City 2. Now you KNOW how crummy I must have felt. We went to the BMT clinic for blood draw and platelet transfusion and my temperature kept raising. They decided to let me go home because I was doing ok. I spent the rest of the day in bed feeling miserable. My mom made me eat dinner and it ended up making me feel even worse. Around 7 p.m. I got that same headache I had the last time I was re-admitted and I started to get sick to my stomach. My temp started raising to the 102's so they made us come in. Sunday night is a blur because I was on so many pain meds for my headache and stomach. During the night my fever spiked to 104.9 so now the doctors are working really hard to figure out what I have. I'm on general antibiotics for the time being.

**Reason of the Week: On Wednesday, some of my blood counts finally hit the normal range. For some counts, this is the first time in five years I've been normal. Being normal (medically) is always a reason to smile (RTS).