Rachel was scheduled to have some tests done at the hospital today and then be readmitted for Round 3 of Chemo. However, a few days ago the doctors decided to give us a few more days at home and let her white blood cell counts recover before proceeding to the next round. So....instead of packing our bags and heading to Primary Children's, we are enjoying a few more days of being together at home!
They are thinking that Monday, August 30th, will be the day. We will keep you posted. In the meantime, Rachel will start her schoolwork, enjoy home cooked food, and keep doing those sit ups!
Our great family friend, and "cake-lady" Shelley Walters has been working hard for these past few months to organize a nationwide Bake Sale to show support for Rachel and raise awareness for Leukemia. This bake sale is being organized primarily to raise funds for Rachel's upcoming Bone Marrow transplant, and the long stay at the Ronald McDonald House that will follow. A new blog has been set up with more information on this exciting project. Click this link to Sign up as a follower , enjoy some yummy treats, and find out how you can participate!
I have been home for a week now, and although I am still more limited than I would like to be, being home has been great. I am feeling really good, and working extra hard to gain back that weight that I lost when I couldn't eat for three weeks. The chemo kind of messed with my appetite, so there were times when I didn't feel like eating at all. But they put me on an appetite stimulant which seems to have gotten me back to normal. It feels great to be hungry again. And no offense to the hospital cafeteria, but there is no place like home.
Sadly, I have accidentally slipped up a few times and have been telling people that I go back 'home' on the 25. I quickly correct my self, and tell them I am going back to the hospital on the 25. Too much time in that place does things to your brain.
Good luck to all you starting school, for those of you who are wondering I am going to be doing home/hospital school and still completing my junior year. Should be exciting. Well that is a little update of my eventful life haha
I have been home now for five days and it has been soooo good. It has also given me a chance to think about more than just being in the hospital and wishing I were home. It is always greener on the other side! I wanted to introduce all my minions to a really great thing my dad told me about. My dads cousin is the president of the Prader-Willi Syndrome Association of Utah. They are competing for votes in the APX Gives Back competition in which APX Alarm will give $100,000 to the top vote getting charity in their competition.
Lets help them out to win this competition so they can use these funds to help new parents of children diagnosed with Prader-Willi Syndrome. Also by voting you will be entered to win an iPad. You can vote one time each day. Vote!
Here's how to vote. Please let your voice be heard!
Win an iPad!!
To Get Started on the 30-second Service Project:
1. Log onto www.facebook.com/apxalarm.
2. Enter your email and password to log onto facebook
3. Click on APX Gives Back
4. Click on Like (thumbs up)
5. Share info: “allow”
6. Click on Start voting
7. Click on Mountain Symbol
8. Click on Utah Prader-Willi Syndrome Association
9. If you are not in a big hurry, click on Pacific symbol and vote for Prader-Willi California Foundation (PWCF)
When you have voted enter the raffle to win the iPad:
1. Under search, type Utah Prader-Willi
2. Click Like at the top
3. Under “Write something,” write, “I voted!”
4. Click Share
Each day you vote for the next 6 days (until Saturday), you can enter the raffle for the iPad again. Go to the Utah Prader-Willi Syndrome Facebook page (type “Utah Prader-Willi” in the search box) and write, “I voted” each day you vote. iPad will be awarded on August 23, 2010. You will be notified via facebook if you are the winner. No immediate family members of the Utah-Prader Willi Association membership are eligible to win the iPad.
From left to right: Spencer, Tanner, Luke, Emily, Mitch, Laura, Rachel, Thad, and Josh.
Tonight we had a BBQ to welcome Rachel home, and also to welcome Laura, our new friend from Germany who will be living with the Sam and Keri Steele Family for the next school year! It was a great time and Rachel got to have some fun with her cousins, young and old!
They said I could go home today!! I am super excited to be leaving. I feel like it's about time haha so just a short little update, so you know not to come up here to see me. You can come to my house now. I will keep you informed of my adventures at home. Until then..
Don't worry, the title of this post does not mean I have a fever. I am feeling quite healthy actually. Which means Being confined to my little room is pretty much making me crazy. I am hoping to go home soon, just waiting for my counts to come up. Meanwhile I've been trying to keep busy watching movies.... And thats about it haha. So not much going on here, I will keep you updated. Thanks for following!
So I had my sister bring up my razor scooter. I figured that if the little kids can ride their wagons and bikes in the halls, i should be able to ride My scooter. When I explained my logic to the nurses, they agreed, on the condition that I ride around at night, when the halls are less crowded. I am technically not allowed to leave my room because my counts are so low, so I have to wear a mask, and can't leave my unit. So I put my hat on, and my mask, and then Emily talked me into wearing an incredibles eye mask, so my face was completely covered. And yes, I later went back for my cape with a lightning bolt on it. As i was cruising through the halls one of the nurses even pimped my ride by putting pink tape with purple hearts on the handle bars. So this has what I have been up to lately. Today I rode the exercise bike for 30 minutes, and did other exercises. Let's just say I have a lot of time on my hands.
Well, I am off to go on another scooter ride before they hook me back up to my iv. Thanks for reading,
Tonight is a wonderful night. Haha we had a bacherlorette party in my little sanctum. I think the title of this post is self explanatory. All I can say is that I am inspired. Haha
I got a transfusion today which seemed to restore my energy. (and just in time for the bachelorette finale too) :) I also received platlets. So things here are good, just waiting for my counts to come back up. I will keep you updated.
Ok.. I do have a good explanation for the wonderful title of this post. The other night I had a slight fever, which didn't last very long, and barely met the qualifications of a legit 'fever'. But just to be safe the doctors decided to start me on some antibiotics, one of which was vancomycin. When this lovely drug was in my iv, My head started to feel funny. I felt kind of hot, like heat was emanating off of my bald head, which was now turning pink. I felt hot, but had no temperature. The nurse came in and said I was just having a reaction, and that the color starts at your head and moves down your body. I looked in the mirror and looked like I had gone skiing with my head exposed. It was bright pink and my face was flushed red. Also, like the nurse said it was definitely moving its way down my body. My back was bright red and itchy. So this is where the title ties in, I felt like the girl that ate the blue berry on willy wonka and the chocolate factory. Except I turned red and didn't blow up like a round fruit. And my problem was easily fixed with benadryl, whereas the poor blue berry girl was less fortunate.
Things have been going good, I am feeling great, and just waiting for my counts to come back up. I am eating well, or calorie packing, as they call it up here. Trying to gain back the weight I lost on my 3 weeks of no eating. Fun fun Fun eating is something I don't mind so much, hopefully I can kick it up a notch haha