Steele Street Christmas!

This is a video that Rachel and her cousins made for our Steele family Christmas party this year. Rachel did ALL the editing on her computer and did a great job :) Everyone involved had a lot of fun making the video.

Big thanks to all the cousins who helped make the video:

Josh, Mitch, McKell, Laura, Luke, Samantha, Tanner, Joseph, Spencer, Emily, Carter, Callie, Jacob, Tate, Ellie, Dallin, Clark, and Lexi! And of course, Grandma and Grandpa Steele who make a cameo appearance at the end...

Just a quick Post

hey, just thought I would post real quick while I am at home. It is so good to be out of the hospital. I heard a quote that I really liked today, it's by the german poet Goethe, it says


"I have come to the frightening conclusion that I am the decisive element. It is my personal approach that creates the climate. It is my daily mood that makes the weather. I possess tremendous power to make my life miserable or joyous."

I am not always good at keeping a good attitude, but I hope to live by this quote as I continue on. Thank you all for the prayers, they are the best gift I could recieve. Merry Christmas!

Rachel

Going home

I am going home today! So glad to get out of here and be able to see my friends and family again. I'm praying I can stay out this time. I have really felt all the prayers on my behalf. I can't thank you enough, I hope you all have a merry Christmas!

Rachel

Rachel, as a Snowman...er Snowoman...

Emily showing off her new creation. (Adam helped too...)

Sunday

Things are going better, I'm still not one hundred percent but feeling better than I was. We have been taking lots of walks and that seems to be helping. I'm even forcing myself to eat a little bit. So we'll see how my stomach holds up and hopefully they will let me out of here. I'm very anxious to get out... I guess 8 weeks in the hospital will do that to you. I'm so grateful for all of the prayers and support, I know I wouldn't be where I am today without them. Thank you so much..

Rachel

thursday

I wish I had a lot of happy news to share, but I am still not feeling so good. Still waiting for the new medicine to kick in, and still waiting til I feel like eating again. I don't really remember what it feels like to feel good, and to feel normal. I am sure it will make me appreciate it that much more when I do. I have been through worse pain but just the feeling of not feeling good all the time seems to stick with me. It's kind of just a helpless feeling because I can't really do anything but wait. Just wait to feel better and wait to go home. I know I am going through this for a reason, it's just hard to keep that in mind at times. I'm really looking forward to getting home and feeling better. The day will come, sorry this post isn't all that fun. hopefully next time's will be better. Until then --

Rachel

The Long and the Short of It

From the recent picture posted, you have probably guessed that Rachel had a very tall guest from the Utah Jazz come visit on Wednesday! Mehmet Okur, 6 ft. 11 in., brought her a signed mini basketball and an autographed Utah Jazz Yearbook! It was quite a surprise. The Jazz team comes to PCMC each year to bring some Christmas cheer to the children here in the hospital.

Results from her scopes two days ago showed that she has a bacteria that causes ulcers. They are treating her with antibiotics for that and hoping she feels better soon. At this point, there was no "definitive" graft vs. host disease (GVHD). So they won't start her on steroids, which is the treatment for GVHD.

They keep reassuring us they are trying to get us out of here by Christmas. That would probably be the best gift we could get this year--to be able to spend Christmas with our family...at home!

--Marie

Go Jazz Go!

SCOPE UPDATE

Sorry we are so late in posting tonight. Rachel finally got her procedures done around 12 p.m. today. (We were originally scheduled for 10:45 a.m. but they were really behind.) It took around 2 hours. Then she was in the recovery room for 1/2 hour and back up to her room around 2:30 p.m. The doctor showed us some pictures of her esophagus, stomach, small intestine, and colon. They said from a visual standpoint, everything looked pretty normal and healthy! Hooray! However, the pathology reports from the biopsies they took won't be back until tomorrow, so we can't breathe too easy just yet. She hasn't felt too great after the scopes, but they said that they pump you full of lots of air, and that you have to walk a lot to get rid of that discomfort.

On the bright side, about 25 members of the Latter-day Celebration choir from the Institute at UVU (including her brother Adam) dropped by tonight down in the main lobby and sang Christmas and other uplifting songs. Since they were encouraging Rachel to walk, they let her put on her mask and take the back elevators down to the lobby to hear them sing! It was just the medicine we both needed! It was fun to share the experience with Crystal, the mom of our cute friend Skyler who is also battling leukemia and has been in intensive care for a long time. Our good friend, Lori McBride, also was there with us! Lori works here at PCMC and pops in frequently to say hi! So we are heading to bed with good music swirling in our heads and praying hard that we get good news tomorrow!

--Marie

Tuesday

They moved the scope to Tuesday. So today we sit and wait again.

Rachel

Scope is an ugly word

Well... It looks as if they are going to scope my stomach. This means they will put me out and I will swallow a tube with a camera on it. They're going to try to get me in tomorrow and then we wait to find the results. I'm praying that it's not graft vs host disease because they treat that with steroids. Could be an infection or ulcers or the lovely beast I mentioned earlier. I'm still hanging in there, thank you so much for your prayers and support, they are what keep me going when all seems lost. Really thank you so much.

Rachel

Saturday...again

I guess it is my turn to share some information. Rachel is continuing to improve however slow it may seem to us and especially to her. The effects of high cyclosporine, morphine withdrawal, and whatever else may have been making her feel puny, we think are mostly gone. She looks good and feels pretty good most of the time...except when it comes to eating or taking one of her many pills or capsules. She still is struggling with nausea that just doesn't seem to want to go away. It is still very difficult for her to keep anything down. We are hoping that will go away soon or the docs can find a reason for it in the next day or two. She is on TPN nutrition ( she receives this through her IV) which runs only through the night so the last day or two she has been free of her IV pole to freely roam throughout her room. They have allowed her to get out of the room to go outside or roam the halls late at night the past two days so cabin fever is not as bad as it could be. Spirits are a little low but she is still one tough girl and wants so bad to feel good and be happy even when she doesn't. We keep hoping things will resolve to the point she can get home and enjoy some of the holiday spirit she is familiar with.

Thank you all again for your prayers and concern in her behalf. It is truly felt.

Frost

All I Want for Christmas is a stomach made of Steel... Clever right?

I am still proud of my self for thinking of this title. ok so I am still here....It seems I have a good day then a bad day..2 steps forward and 3 steps back...It is getting pretty exhausting. I dont get worse but I don't get better. I am not eating good still. Hence the title. And Its cleverness. But.. on the bright side, my face isn't fat. WOOOOO I don't quite look like rachel, as my eyebrows have thinned, but that is temporary. I would like to make a statement that I hate pills and everything to do with them. At 17 I know I sound like a baby...But capsules taste worse and go down my sore esophagus just about as good as rocks. I loathe them. I would also like to state that I should be home for Christmas...I WILL be hhome. PRayers are still appreciated haha I can very much still use them....once we get my stupid stomach figured out we're out of here. I love you guys and miss you so much... thanks for being great~

Rachel

Still here

I thought I would post today while I had a little time....haha I have time coming out my ears actually, I just finally am awake and with it enough I guess. Things are going better today, now that I'm not basically being poisoned by high levels of medicine. Ha maybe I am over exaggerating. I look like a cartoon panda bear right now, because the medicine was causing my kidneys to retain fluid... So my eyes are practically swollen shut every morning. They get so I can open them through out the day, but still stay pretty swollen. I am also eating a little today, so we're on our way up. Thank you all so much for following the blog, and for prayers and support. I really can feel the love, and I most definitely can still use it. I am so lucky to have the support system that I do. Thank you and I love you all.

Rachel

The Waiting Game

Over the last 6 months (Rachel spent 112 nights of that in the hospital), 3 rounds of chemo, and 1 bone marrow transplant, we've had the opportunity to get "good" at many things. Some of those include learning to sleep with many interruptions, adapting to hospital food, being lightning fast at grabbing her barf bucket, interpreting what the doctors are trying to tell us, learning to find humor in the middle of a bad day, being grateful for tiny miracles, understanding what all of her meds do and their possible side effects, driving from Orem to Salt Lake, wearing the same 3 outfits over and over and hoping no one notices, and learning PATIENCE!

Rachel's nausea returned yesterday and she has been extremely tired. She has basically slept the last 2 days. They suspect that her cyclosporine level is too high. This is the medicine they are giving her so that her new marrow doesn't reject her body. Anyway, they are running more tests and in the meantime, we are playing the waiting game. (Something we are not all that good at!) They are holding off on the cyclosporine until we find out exactly what her levels are. If she has too much in her system, they will have to wait for it to clear before restarting it. This could take a few days. In the meantime, we will try to focus on the positive things.

Thanks to all of you who continue to check up on us and lend your prayers, love, and kindness! --Marie (the not-so-patient mom)

AS TIME GOES BY....

It's hard to believe that December is here and Christmas is just around the corner! Many times I find myself thinking it should be the end of June...since life as we knew it came to a screeching halt then. But one look at the large mounds of snow out our hospital window lets me know that time has pressed on.

Rachel and her cute little AML Friend, Erin

littleairbear.blogspot.com

Rachel is doing much better. The nausea has subsided and she's eating and drinking. They are starting to switch some of her IV meds to oral pills. Once she finishes that transition, we are hoping to get discharged! She is very excited to be home for Christmas. As the familiar Christmas song says, "There's no place like home for the holidays!"

--Marie