Day +31; Big Upset

You know how I've been waiting, waiting and WAITING for my counts to come up? Well yesterday my nurse rushed into my room and showed me my blood work, my wbc was at a shocking 2.1! I quickly texted my mom who told everyone else. I didn't want to say anything because I had a slight doubt that it would come down today. That doubt was confirmed today after the doctors did their rounds on me. One of the fellows walked in my room and explained to me that my blood got confused with other patients in the lab. They think it was probably a labeling mistake. I'm really upset today and so are my mom and dad. It's really frustrating when things like this happen.

I still have this black rash thing on my legs and it's spreading to my thighs and arms and it's very painful at times and extremely creepy that it makes my skin crawl.( I'll have pictures of all these things once I feel up to it). The doctors took a biopsy of it but since I have no cells they weren't able to tell what is. They think once my counts come back up it will go away. I really hope so because it's creeping me the hell out.

Day +29

I'm supposed to be going home soon but since my counts haven't budge, that dream is out of the picture. I had a bone marrow biopsy on Thursday. The doctors said they didn't see any leukemia cells but there really are no cells there at all. They also said that it takes longer, up to day 35, for cord blood transplant to engraft. Besides that I've been running fevers all week. Almost everyday day I've gotten blood and platelet transfusions. My eyes are completely blood shot. Before there were just little spots of blood on the sides but now blood is everywhere. I have scabs or little spots in random places. I have no idea what's going on with my body.

I recently learned that my friend from peds passed away. Her name is Jasmine, she was only 11. She was at the end of her treatment when everything went wrong too. She always wanted to play with my camera cause she had nothing else to do sine she was alone most of the time. It's so weird because she's so young. I was 11 when I was first diagnosed with AML.
R.I.P. Jasmine

Day +23

It's been almost a month since I got chemo and my transplant and my counts still haven't recovered. It's around this time when my new cells should start to engraft and so far nothing. My white blood cell count hasn't gone up passed .3. Today it's at .2. And to make matters worse I'm spiking fevers. If my counts don't come up by sometime this week then the doctors are going to give me medication that will help stimulate my bone marrow to make more cells.


On Wednesday I had a really bad nose bleed due to my low platelet count. It lasted for a good 2 hours to the point where I started to feel light headed. They had to get the ENT doctor (Ears, Nose and Throat) to pack my nose to stop the bleed, which was NOT a comfortable or painless procedure.

I'm really worried that my new cells won't engraft and that I'll be left with no immune system but I'll try not to let it get the best of me.

Day +17

Remember how I ended yesterday's post with "sponge bath time?" Well while I was sponge bathing the stupid cleaner walked in on me after I yelled "HOLD ON I'M BATHING." He wasn't the normal cleaner that's usually here, he's what we call a "float." He barely knocked and just barged in. I was really pissed and felt very violated. I'm not sure how much of me he saw but the point is he had no courtesy or respect for my privacy. When I was done bathing my nurse and I walked around the unit while the cleaner cleaned my room. When I got back it looked like my room was barely touched. My bed was unmade and there was still stuff on the floor. This didn't make me any happier. Being sanitary and sterile is a huge part of my treatment and me getting better and for someone to jeopardize that for me because of pure laziness really makes me angry. I know it might not seem like a big deal to you, but it is to me. I really just want my damn privacy and to get better.

Anyway. Today is a little better because my mom is spending the day with me, so I'm not alone and I can boss her around :D.

I'm starting to get back some of my energy back but I still feel miserable and somewhat depressed. But hopefully, with time, those feelings will disappear as well.

Day +16

The sores in my mouth and throat are getting better. But new problems have arose; I've lost or I'm losing my voice. I don't know how this is happening! It's not like I've been talking a lot but it's better than my throat constantly killing me. My counts are still down and I'm still miserable. One of the hardest things to deal with is being alone for most of the day. My mom and dad are at work during the day so they usually come at night so I'm stuck with the nurses and techs and annoying people just barging in my room all day. I would love it if my mom could stay with me all day. It would make everything so much easier and I'd feel more comfortable.

I still don't want any visitors because I'm just not in the mood for them. I look a hot mess and feel crummy so I don't think I'd be able to enjoy any one's company right now and I don't want people to waste their time on me.

I think it was Senior Bowling Night last night. I hope everyone had fun. I'm not sure if I said this already but I feel like my life is standing still and all my friend's lives are just moving on without me while I'm stuck here in a hospital bed. What makes it even worse is that I probably won't see any of them again since I won't be attending school or any school functions for the rest of the year.

I'll touch more on this subject later. Sponge bath time.

Day +15: Happy Birthday Kelly

Happy 19th Kelly!!!
For those of you who don't know, Kelly is my best friend/wife. We've been friends for about five years, and what fun years they've been. She's always been there for me and I know she always will be. Her and her family have been nothing short of amazing to me. They're like my second family.

I can't imagine my life without her. When I got sick again she made sure that she would always see me every weekend no matter what. I feel like I'll never be able to repay her for all the joy she's brought to my life.

I'm really sad that I won't be able to celebrate her birthday with her today. She usually has some crazy get together with her crazy friends and I watch them do stupid stuff. I'll make it up to her though once I get out. Maybe take her out to a romantic dinner and lavish with all the jewels and candy corn her little heart can handle; Because that's what wifey's do for each other.

Kelly, I hope you a wonderfulllll birthday today! I love you!

Day +14

I find myself feeling very miserable nowadays. I have no privacy at all here. People are always walking in and out of my room asking me the same damn questions, waking me up from my precious sleep. Everyone keeps putting their two cents in on what I should do to make myself feel better such "read a book" and "do this so this won't happen" and I understand that they're trying to help and all but I just don't feel like hearing it and half the stuff they're telling me I already know.

I even had to go as far as to ask for one of techs to be removed from my case because I really didn't feel comfortable with him in my room. I know, I'm miserable.

I'm becoming very forgetful as well. I never know what day it is. Sometimes I wake up thinking I'm somewhere else, like my mom's room or something. I can't tell events apart like whether or not something happened yesterday or today.

My WBC count is back down. It went from .1 to .2 to .3 and back to .1 ( in order for me to go home my WBC count has to be between 4.0-10.0 [thousand] so according to my blood work chemistry I only have 100 WBC). So I still have a long way to go. The doctors said it takes longer for counts to recover when you have a cord blood transplant.

Hopefully I'll be home by the end of March or early April.

Sorry if there are any grammar errors, I'm really drugged right now.

Just a small update

I'm still really weak and tired. They discovered that I have a staff infection which really isn't good. I have to get a new line in because of the infection, so this will be my third one. They started me on a really strong antibiotic called vancomycin (it's heavy duty stuff).

I still can't talk or eat or drink anything cause of the sores in my mouth and throat. The doctors keep saying "just a few more days" but a day in this state feels like an eternity.

I just keep in mind that while things are bad they could always be worse.