Sunday, September 11, 2011

Blog Day 2

Thanks so much to everyone who commented/followed/tweeted/re-posted or otherwise acknowledged my blog! That was really cool. Again, the support amazes me :). I want to know what questions people have about what I'm going through! I'm really open to talking about anything so don't be shy! I know someone asked about me missing school and chemo treatments. I will be missing most of the first half of the school year but I'm optimistic that I can come back at least part-time starting in January/February. The reason for missing school is that my immune system can't handle all of the germs and bacteria that are unavoidable at any school. I am, however taking three classes from home. AP psych, AP stat and an English elective on the Illiad. So far, I'm still trying to figure out the specifics of how school at home is gonna work but it helps that I have an amazing twin brother to bring me work and materials and help me with whatever else I need :) He's the best! I also hope that there will be one or two days when my blood counts are high enough and I'll be able to come in and be part of a class. Not sure when or if that can happen...

As far as my treatments go, they're giving me a bunch of different types of chemo as well as other drugs to counter-act some of the side effects of the chemo. The plan is to kill as many visible Leukemia cells as they can in the first month of treatment and then go back and work on making sure they don't come back.
The worst treatment so far was a type of chemo called donorubicin. They gave it to me the day after I was diagnosed. It came through a pump that I was sent home with and hooked up to for 48 hours. It made me really nauseous- I probably ate a total of four crackers and two potato chips over those two days and I'm pretty sure I ended up throwing them up anyway. I think the thing that helped the most with the nausea was just sleeping through it. It also helps that one of the anti-nausea drugs completely knocks you out :) Anyway other than that, chemo hasn't been that bad. Since the donorubicin, I haven't really felt that nauseous and I guess the only other major side effect of it is that I'm tired all the time. If I literally walk around my house for 5 minutes, I have to sit down and rest and build up more energy. But hey, I kinda love sleeping so I'm not that bothered. Hair loss hasn't come yet but I'll update when it does. I don't think I loose it all until about a week or so. I have to admit that I do miss being more energetic and feeling like I have the ability to do more things. (Speaking of doing more things, there are a lot of things that I can't do which sucks but I think I'll get into that on another post.)

I'm also scheduled to go into the hospital every Monday and Thursday.
Thursdays are for my weekly spinal tap and bone marrow check. Supposedly, Leukemia likes to hide in people's spinal fluids and the chemo doesn't reach that area very well, so the doctors have to go in with a needle and inject chemo directly. They also check my bone marrow because that's where my blood gets made and they look to see that all of the cells are healthy. The whole thing sounds a lot worse than it is because they put me under anesthesia and I wake up 30 minutes after the whole thing feeling very well rested with a yummy cheese quesadilla waiting for me (surprisingly, hospital food isn't all that bad :).
I go in on Mondays so that they can test my blood to make sure everything is going okay and if they need to, they give me blood or platelets or medicine or whatever else my blood might require. They sometimes also schedule chemo sessions on Mondays.

I also take an assortment of pills at home. I'm not really sure why I take most of them, but the doctors tell me to, so I do. There are steroids, anti-fungal pills, anti-fungal lozenges (that I have to suck on and are really gross), anti-heartburn pills, anti-nausea pills that are as-needed, and I have to give myself a shot in the leg every day. And I'm probably forgetting some other ones. The pills are fine- the shot is annoying but I like to give it to myself and I've kinda figured out how to make it hurt less. (If you're interested, icing the area before hand helps and pushing the medicine in fast rather than slow makes it better).

The same lovely question-asking commenter that I mentioned before asked if there was a chance if my siblings are also sick or if they were tested for Leukemia- which is a great question. Leukemia is not genetic and they have no idea how I got it. They haven't been tested because it's not a concern. The doctors did mention that later down the line, my sibs should get tested to see if they are potential bone marrow matches for me. In the event that I would need a transplant, they would be the closest matches, but hopefully that doesn't have to happen :)

I know I'm putting a lot of information on this blog and I'm not sure how much or how little people want to know. I clearly decided to give lots of details but if it's too much or not interesting, just say the word. Also please ask questions so I know what to write about!

I thought I would also share that my big adventure for the day is going to the park to chill and see friends which I'm super excited about because I need some normalcy in my life as well as some human interaction :) Nothing sounds better right now than laying on a blanket with my friends in Central Park just chilling! Can't wait!

That's all for now! I'll keep hanging in there
Love Always,


  1. Ella, your blog is amazing -just like you. Really interesting, and your strength and ability to take life head on shine through. It's great for all of us who love you to be able to make sure you know we're on this journey with you. Sending you a big hug. Seeing you smiling through spinach dip made my fri night :) - kim

  2. So optimistic... If I were in your situation, I doubt I'd be as nice and hopeful about it as you are... you seem happy to answer questions that others might consider to personal or detailed... best wishes and thinking of you <3

  3. ella, you are kind of really amazing! i'll keep you in my prayers. are you still planning on attending college fall 2012?

  4. Thanks! College 2012 is definitely still in my plans!

  5. Wow, Ella - you sound like you are dealing with this SOOOO incredibly. It is interesting to hear about what you actually have to go through. We have a friend who went through it as a little girl and she just remembers just taking a huge handful of pills at the same time and downing them down in one swallow. I guess some people just deal with what they have been handed - and it is great that you are so positive and fighting it with such positive vibes. Here's to twin brothers to keeping you in the loop! We are constantly thinking of you out here in Utah. all our love to you from afar - Ann