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).