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Thursday, October 28, 2010

Same...only Different

Sorry it has been so long since we posted! It's amazing how time flies when you're having fun--at home! This morning bright and early (5 a.m.) we loaded up the car and headed back to Primary Children's. It is amazing how much traffic there is on I-15 that time of the day. We were thankful the roads were dry and not snowy--unlike yesterday.

We are on the same unit, different room. Our new hangout is Room 4414. We were thrilled to see that they had found one of the few "long" beds so that Rachel's legs don't hang out the end of the bed! We have the same sweet nurses that we've had the last 4 months, but different doctors. Instead of being under the care of the Oncology team, we are now under the care of the Bone Marrow Transplant team. Rachel is right now having her first of 8 radiation treatments over the next four days. They drive us up to the Huntsman Cancer Institute twice a day through Sunday. Then she beings two days of intense chemo to wipe out her marrow. She then gets one day of rest--Hallelujah!! On Thursday, November 4th, she will receive her bone marrow transplant. It will be very similar to a blood transfusion--she will lie in her bed and a bag of the donor's marrow cells will hang on her IV pole and infuse into her central line over an hour or two. Here at the hospital they call that your new "Birthday" since you are getting a whole new immune system and blood type and new bone marrow.

Following the transplant, all kinds of scary things can happen. Mouth sores are horrific, the risk of infection is really high, and her new marrow can attack her organs since it doesn't recognize them. They will put her on anti-rejection meds to minimize this. As one of her doctors said, "We bring you to the brink of death and then rescue you."

Post transplant she has all kinds of dietary restrictions. She won't be able to have any outside food brought in. Goodbye to Chili's, Pizza Hut etc. So if you want to bake her cookies or other homemade treats, please wait until we are back home again. She can still have candy bars etc. We just hope she has an appetite for anything with all that her body will be experiencing.


I think Rachel is excited and scared at the same time. She has the same disease, different treatment. She is hopeful that after the next few weeks of waiting for the new marrow to engraft into her body, she will be free of leukemia. We are all hoping and praying for that! We appreciate all of your love and support. We have seen so many acts of kindness done in Rachel's behalf. We are the same family, but we have a very different perspective on life and what is most important. Thanks for easing our burdens and sharing this journey with us.

--Marie

20 comments:

  1. Hey Marie and Rachel! This is Alyse Barber from Vineyard. Hope all is going well! I was reading in the district newspaper and saw that there was a 5k for Rachel. I was wondering if you had any more information about that. I would love to attend!

    Good luck with the bone marrow transplant. My best friend went through one at the City of Hope in California a few years ago! And she is doing wonderful now.

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  2. Make-a-Wish Foundation is putting on a run/walk next Saturday morning (Nov 6) for Rachel Steele. The race/walk starts at 9:00 rain or shine. It's only $5.00 if you sign up by tomorrow, Oct 29(and you get a free t-shirt too) at Lakeridge, Orem Elem, or Moutnain View. After tommorrow, it is $7.oo. Hopefully we can get everyone out and wearing orange next Saturday to help show our support and love for Rachel.

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  3. The 5K Family Fun Run is starting at Lakeridge Jr. High at 951 S. 400 W. in Orem on Saturday, November 6th. Registration starts at 8 a.m. The run begins at 9 a.m. If you pre-register before Friday, October 29th, you get a T-shirt. The day of the event I think it is $7 and no shirt! Proceeds from the race go towards Rachel's wish.

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  4. Love you, Rachel and pray that everything goes well with your transplant!

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  5. Wow, that sounds awful. But exciting at the same time, in hopes of a great outcome. We are praying for Rachel!! Hold on Rachel, you will make it through!

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  6. I'm a bit teary eyed right now. Obviously I've not been through this myself, but I know what Kenyon went through. It is so wonderful and amazing what they can do. The doctors told Kenyon the same thing, "Bring you to the brink of death and then save you." That's what they have to do to get rid of the crappy cells. But it is truly a miracle what they can do. It will work! I am teary because I am so happy for you and also teary b/c I know that the next months are going to be so hard. Let's pray for the best and for just the right amount of GVHD!

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  7. Rachel,
    I am so happy for you! I hope and pray with all my heart that the transplant goes well!
    Katherine

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  8. We are praying for you here too! Cami asks if we can visit you every time we go to clinic.. your room was simply THE COOLEST!!! Hang in there- you'll do GREAT!

    Hugs,
    Chelsea and Cami

    PS- Marie, we might need to do another pizza night to get you out! You hang in there too. XOXOX

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  9. HOORAY for being free of this cancer! We'll be fasting on Nov, 4. You are all so amazing. Keep fighting Rachel, you're almost done! We love you guys.

    xoxo,
    Amanda and Millie

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  10. Oh goodness rachel! That is one bumpy road. Watch, you'll do amazing and kick this just like you kicked three rounds of chemo. Hang in there :)
    -jessica

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  11. Thanks for sharing your great attitudes! She will certainly be in our prayers. Hope all goes well!

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  12. I think I am going to do the race. That sounds AWESOME!! Rachel all 7 of us love you and are and will be praying for you always!!

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  13. Do I have to sign up in person? I want to want to want to

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  14. lindsay, I think you do have to sign up in person at either Orem Elementary, Mountain View High School, or Lakeridge Jr. High. Hope that helps. Thanks for your support!

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  15. Good luck! We are praying for you all!

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  16. prayers and hugs to all of you. Go to Albertsons and get Rachel some of their store brand frozen big sticks. Yummy stuff.

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  17. Wishing you the best Rachel! You're one tough cookie! I'll be wearing orange on the 6th and I'm excited about that. What are you doing for your wish?

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  18. Marie, you just bring me to tears! I can almost understand how you guys must be feeling. Oh Rachel, we are cheering for you! We know things will go well because you are in room 4414 which is the room we had on our last stay and we left you some good vibes in that room! We will be there on Tues. Nov. 2 - see you soon!

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  19. I would wish you good luck, but I know luck has nothing to do with your success! God be with you and your family as you go through this exciting but scary time. I know you will get through this, and there will be MUCH jubilation when we can celebrate your new "birthday"! Stay strong. Know there are oh so many of us supporting you the best we know how. Love you and your fam. Gotta say, you've converted me to liking orange...never thought that would happen! ;-)

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