What I did today

I went up to clinic again today to get another dose of Retuxin and some platelets. My platelet count went from 21 to 13. This is still very low, but the doctors were encouraged that it hadn't dropped further. So they didn't give me any platelets, because they want to see if I have started making them on my own. I will go back up on saturday to see if I have continued to drop or if I have made more. All of this has made for a crazy week, but at least it gives me something to do.

It's hard to believe that someday I might actually be normal again, but I keep hoping. Sometimes it feels like cancer has been my entire life even though I had a wonderful 16 years without it. I find myself with nothing else to talk about except my "medical life" and I realize that it's because it has been my life for the past year. I am really looking forward to only having to worry about things that a normal 17 year old worries about. But I have learned that that is just how life is, we take what we've been given and we adjust the best we can. Nobody really is "Normal" after all :) Thanks for reading my blog, and a special thanks for the prayers and support. Cheers.

Rachel

What I've been doing...lately

Sorry I haven't updated in a while...Just wanted to write a quick post to let you all know I'm still alive and kicking. Haha...I've been busy running for Student Body Secretary at Mountain View H.S. I am on the gold team, and elections are this Friday, so I'll let you all know how that turns out. Here are my two campaign posters:

Also, The other day I got to play Rock Band with a bunch of my cute little cousins- there's a video of it below....

Peace, and Blessings

Rachel

Got Platelets?.... I don't!

The last week has been very interesting. I went back to clinic on tuesday to find out that my platelets had dropped to 3,000. This is dangerously low. For those of you who don't know, platelets are what make your blood clot off. So when you get a cut the platelets help you to stop bleeding. When you have low platelets--- like I do, It makes you much more susceptible to bleeding, bruising, etc. The doctors told us that the dropping numbers could be attributed to a number of things. First, it could be a virus that is killing off the platelets. Second, it could be a platelet antibody that eats the platelets. Third, is GVHD. And dropping platelets could also be a sign of relapse..BUT the doctors assured me that if it were relapse all of my other cells would be dropping off.. which they ARE NOT. Just to make that clear. But when they mentioned that of course I freaked out. But after they reassured me I felt much better.

So they did a number of blood tests on me, testing for viruses. I got to do a lovely nasal wash that feels like they are sucking out your brains. I don't recommend it.

So today (friday) we went back up to clinic to see if I needed more platelets after my last transfusion. My platelets had dropped to 2,000. Not good considering the low end of normal is 150,000. But they came in and said that some test results had come back, and told me that I had Epstein-Barr virus (EBV), HHV6 virus, AND a platelet antibody. So.. We can attribute my diminishing platelets to those three little boogers. But I feel pretty lucky to have viruses rather than the other options.

The good news is is that the treatment for both EBV and the antibodies is the same medicine. It is called Rituxan, and can make you feel sick for a day... but isn't near as bad as chemo. So today at clinic I received a platelet transfusion, and my first of 4 doses of Rituxan. The Rituxan took 4 hours to go in, but they assured me that it would only take two hours from now on. With the combination of the platelets and the medicine, we were at clinic for a total of 8 hours today. It was a very long day.

Sorry I have taken a while to update, hopefully the medicine will start kicking in and my platelet problem will be fixed. I am very grateful that we were able to receive answers today. Thank you all for your prayers, I really appreciate it.

Rachel

What are you fighting for?

Rachel and "SteeleStrong" are being featured in a new ad for Lucha Shoes- watch their video here and then check out their website by clicking the link : luchashoes.com

-Adam

(Rachel's brother)

Lucha Shoes--- Fight With Your Feet

My assistant coach Mike Glauser helped come up with these awesome shoes called Lucha Shoes. They are new and improved, and cheaper than similar brands. Lucha means "fight" in spanish... so the whole purpose of these shoes is to "fight with your feet". The cool part about it is that you write what you are fighting for on the bottom of your in-souls of the shoe.

Go to luchashoes.com for more info. What are you fighting for?

A Visit to Salt Lake

Well... Yesterday I noticed that I had red dots covering my legs. This doesn't sound like anything serious at all, but anytime anything happens you're supposed to call the doctors. That's the joy of being a post transplant kid. We figured that the dots were petechiae, which can be a sign of low platelets. So we had to go up and get tested, and that is exactly what it was, due to the fact that my platelets were at 8,000....and normal range is 150,000. Low platelets could mean that I am trying to still bounce back from my virus, or it could be a sign of Graft vs Host disease. We are praying that it isn't the latter of the two, I go back this Wednesday to see if the platelet transfusion did what it was supposed to.

If it ends up being Graft vs Host then it is considered chronic, and I will have to be treated with high doses of steroids. Please help us pray that my platelets will shoot back up. Steroids don't sound all that fun to me, and they aren't even the kind that would help with athletic performance :P yes, I did ask that haha. Hopefully everything will be good so I can continue to get strong and return to school for my senior year next year. As much as I love being a hermit, I don't think I will ever take school for granted again. Thank you for all of the support, every little bit helps. I will keep you updated.

Rachel

Waldo Plays Dead

It looks like I just pushed him over, but I didn't I promise. Little Waldo can be smart when he wants to be.

Make a Wish

My wish for the make a wish foundation has been granted! My wish was to go to Italy and I just heard today that the board approved, and I am very excited. I have been looking forward to this for a long time, and hopefully if all goes well we can go this august. Things are going good, I am trying to exercise as much as I can and hopefully I am gaining weight haha gotta love those high calorie drinks. Sorry I don't post very faithfully I will try to do better.

Rachel

Fun at Clinic

So it's been awhile since we posted....sorry! Rachel's last clinic appointment was March 1st. We were really surprised when we walked into Room #9 and saw a big welcome written on the white board, plus a custom made sign on the rocking chair saying it was "Reserved for Rachel Steele!" Thanks, Paige for going the extra mile and brightening our day!

Rachel is really doing well. Her creatnin level, which tells how her kidneys are functioning, was almost in normal range. So they will give her half as much fluids at night via IV. If she continues to do well, she can get her central line out soon! Yahoo! The other good news is that we don't have to go back to clinic until the 15th of March! Every other week is better than every week, eh?

She began an exercise routine this week, which is exciting. The down side is that her muscles are so sore right now that she can hardly move! Amazing what laying in a bed for 6 months can do to your body...uggh!

--Marie