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

Fun While it Lasted...

Just a quick update. It was so nice to be together as a family--actually under one roof--this weekend. Much to Rachel's dismay, we have been staying at an apartment in Salt Lake so that we could be close to Primary's in case she had any complications after her discharge from the hospital. Of course, we are all anxious to go home to Orem, but we are very grateful to the Bentley's, the kind couple who is letting us stay in their basement apartment.

Yesterday afternoon, Rach got pretty nauseated and hasn't been able to keep much down since then...including her oral medications. This posed a problem and at about 2:30 today, we called the hospital to talk to the bone marrow transplant doc on call. They called me back and said they needed us to come back to the hospital to get readmitted.

After preliminary tests, they found that she was quite dehydrated and her sodium was low. These both compound her nausea. We will hopefully get more results tomorrow. Anyway, we are now back in ICS after a fleeting 2 day getaway. Though it is hard to be back, we are thankful we only had 10 minutes to drive on snowy roads to get here. We were greeted by dear friends and nurses (who were quite surprised to see us back so soon!) Hopefully, after a couple of days, she'll be ready to break out of here...again!

-Marie

Jumble of Thoughts

I don't know if it's because of the holiday season, or because I am finally finished with the transplant, but tonight, i am full. (Not full of food-- I wish-- but my stomach isn't quite ready) I am just full of....feelings I guess. Maybe it's the new marrow inside me haha but most of all I think I am learning. Tonight, I am full of gratitude.

Just looking back on the 5 month journey... remembering where I was at the start. Thinking how in the heck am I going to do this. Remembering crying...lots of crying, in the hospital room with my parents when we found out. Shock. Unbelief. All these feelings now turned to gratitude. There is no way on this earth, I could have gotten through this physically or emotionally without family. My immediate-- My sweet parents who never left my side, I never spent a night alone in the hospital. My siblings who sacrificed their time to be with me, to cheer me up, and to just be there. My cute little brother who started 7th grade with one parent at home while one was with me. They were strong for me. And that is where I learn it from.

Family is a broad word. It covers a lot of people especially in my case. My aunts and uncles who would shelter tanner, and feed the rest of my family. And just...my cousins. Tears come to my eyes when I think of them. I have had the blessing of growing up with some of my best friends. Little mitch who never left my side in elementary school. Josh and Mckell who are such examples to me. Luke who just makes everyone laugh....somehow we all fit in together...the cousin clan we eventually called ourselves. Mudfights, fourwheeler rides...sunday school. We did it all together. I can't put to words the amount of respect I have for my cousins. On both sides.
Even though we didn't get to see each other as much growing up, John and Andy are my best buds. They keep me company in the hospital, and always make me laugh. And missy, thankyou so much for asking all those people to send letters to me. It strengthened me every day. I hope all of this is even making sense, cuz I am just crying and typing haha hence the title a jumble of thoughts. I hope they make a little sense.

My sweet aunt Kathy brought dinner to the hospital every sunday without fail. Even if I couldn't partake of her gourmet cooking, she would come, along with erik and lauren and cute little morgan. My point is I did not, by any means, make this journey alone. And I think that is what is so wonderful about this life. We are not alone. In any way, shape, or form. We may feel it at times, but there is always someone willing to help, to hug, or to talk. And I am grateful to have learned this lesson. I dont know what inspired me to go off on this rant, part of it was because I missed my cousins. But part of it is because my family came up to salt lake tonight so they could be with me. All of them. So I wouldn't have to be alone. And i feel full....of jusst happiness! Even though I am pissed I lost my hair and my legs feel all weird. Even though I don't feel good all the time. I just want you all to know that I am "steelestrong" because you make me that way. I could have never done this alone.

And I cant forget friends. That's partly what i meant when I said family was a broad term... I have some amazing friends that have helped me through this that I consider family. They keep me going and I am so lucky to have them.

I jusst hope that I don't forget these feelings. Because I am going to get healthy again, I am going to get out on that court, but it is going to mean so much more. Everything is. I just hope i dont lose sight of what I have gained. I am kind of rambling... but that's ok I am allowed to do that i guess... It's my blog. :) But I think I will sign out for the night. This was a long one...

You are probably looking for an update as well... I am staying in the basement of some nice people in Salt Lake. It is close to the hospital, so my parents are comfortable. We'll be here for a week (I say) or so... just to stay close after transplant. Hope to see you all soon. I love you so much, thank you for the prayers... I can't thank you enough. I can feel them touching my life. And I can still use them :P Thanks again.

Rachel

Thanksgiving

As much as I would have loved to be at the big thanksgiving dinner with all of my cousins, I still have a lot to be thankful for. I am so thankful to have the large family and support system that I do. I am so lucky to have good friends and family. I am thankful for the years of volleyball I was able to play, and all the teammates and good experiences that came with it. I am thankful for all the doctors and nurses working everyday to save my life. I am thankful for laughter, and for smiles. I am thankful for good food, and being able to taste it. I am thankful for one hour showers.. And long for the day when I can take one again.I am thankful for the love and kindness that has been shown towards me. And hair. I am most definitely thankful for hair. All of these things and so much more. I am thankful for a loving god who has guided me through my trials.

And especially thanks to you mom and dad: for putting your lives on hold to take care of your little girl. For putting up with me as a roommate for so long, I love you guys so much. Thank you

Rachel

FORTUNATELY....

FORTUNATELY, Rachel's ANC was 500 on Saturday! UNFORTUNATELY, it went down to 400 on Sunday.

FORTUNATELY, her total white blood count is still rising each day. UNFORTUNATELY, her ANC went down to 300 today!

FORTUNATELY, the drs. are still optimistic that she has engrafted fine and that she's making progress. UNFORTUNATELY, she hasn't been feeling well today. (i.e. nausea, vomiting, and diarrhea)

FORTUNATELY, they think it is due to being weened too quickly off her morphine. UNFORTUNATELY, it might be due to Graft vs. Host Disease (GVHD), which is when the new marrow attacks her body because it doesn't recognize it.

FORTUNATELY, we still have so much to be thankful for! So many good people that we know and many that we don't even know are praying for her and showering us with kindness. Thanks to new friends in the Rosecrest 1st and 2nd Ward who brought their activity day girls and came to visit today. They brought Rach a darling blanket that they made.

Another friend we've yet to meet from Las Vegas brought a fun gift bag for Rach on Saturday!

A dear sister in our ward made a fun blanket with Rachel's volleyball coach and teammates' names appliqued on it!

What a keepsake! So many of you behind the scenes bringing meals and goodies, sending cards, giving hugs, offering support in so many ways. You know who you are and we want to thank you from the bottom of our hearts!

We are so grateful for the wonderful things you've all taught us during the last 5 months!

--Marie

Onward and Upward

It has been two weeks since the transplant, and today, I am proud to say that I have an ANC of 500! It is amazing how much a few white cells will help. My mouth sores are almost completely gone, it's crazy. If my ANC stays at 500 tomorrow, then that means I have officially engrafted. Now begins the long road of keeping my body healthy and strong, and rebuilding. I know the road isn't over but it sure helps to see the light at the end of the tunnel. I feel so blessed to have the family that I have, and all of the support. Thank you all, for the prayers and support I honestly can't thank you enough.


Rachel

In a Nutshell...

ON THE NOT-SO-BRIGHT SIDE:

The last two days have probably been the worst (pain wise) since Rachel's diagnosis in June. Due to the throat & mouth sores, it is hard for her to even put her lips around a straw to get a drink. They keep increasing her continuous IV morphine, but the pain never really goes away. The left side of her face is all swollen--even around her eyes. She looks like someone used her as a punching bag! They say that inflammation with the sores is normal.

ON THE BRIGHT SIDE:
Even in the midst of these dire circumstances, Rach continues to try to eat! She has all of the docs and nurses in ICS amazed. "No one eats this far into bone marrow transplant," they say. The pain is usually so horrific that the kids just refuse to eat and get IV nutrition instead. Rach was supplemented with TPN (IV nutrition) a couple of days, but she was eating so well that they pulled her off it 2 days ago.

Also, Rachel's WBC (White blood cells) are starting to gradually come up! This means that she should start feeling lots better and that her mucositis (mouth/throat sores) should start to heal. It also means that engraftment (her new marrow taking over and providing her new immune system) could be just around the corner.

I read these Dr. Seuss quotes on a fellow cancer friend's blog. I think this pretty much sums up Rachel's positive attitude and fighting spirit throughout this battle.

Dr. Seuss Quotes:

"And will you succeed? Yes indeed, yes indeed!
Ninety-eight and three-quarters percent guaranteed."

"I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have troubles with me!”

(FYI-Rachel really gives me a hard time about inserting too many exclamation marks when I write anything. I hope you are proud of me, Rach. It really cramped my style, but I tried. ha ha)

--Marie

S'more sores

This week has been filled with morphine, and mouth sores. Most of the sores are down my throat, making swallowing anything very painful. On the bright side I have still been able to eat, and still a have an appetite. Well this post is going to have be short, I believe the nurse just put a "sleepy substance" In my iv. So it's probably a good thing I log off now before this post starts making no sense.

Rachel

DAY +6

So we're on day +6 since Rachel's bone marrow transplant! We are learning about low microbial diets, mucositis (intense mouth/throat sores), cyclosporine (auto-immune suppressant to help her body accept the new marrow), lots of other new meds to protect her liver, kidneys, etc.

She is also experiencing a new level of pain that she hasn't had to go through thus far in her treatments! In describing her pain in her throat a couple of days ago, she said, "Mom, it feels like I've swallowed a knife!" Simply swallowing her own saliva brings tears to her eyes. She still has an appetite and would like to eat, but it is very difficult due to the pain. She did get some yogurt down this morning...but it took 1/2 hr.

Luckily they have her on a patient-controlled-analgesic (PCA) unit which gives her continuous morphine. She can push a button every 10 minutes for another dose of morphine. They keep increasing the dose to better manage her pain.

She's also learned to use the suction unit by her bed. It helps clear out all the thick gunk in her mouth/throat that makes it hard to breathe etc.

All of this happening and knowing that she just missed her volleyball club tryouts for this season, have made for a somber week. On the up side, she is still trying to eat, in about a week we might see some hints of her counts starting to come up, and--if all goes as planned--we might able to spend Christmas at home...together!

A friend of ours, Amanda Flamm, has this quote on her daughter's blog. This is our goal these next few weeks. Thanks for all of your prayers, love and support!

"Each morning when I open my eyes I say to myself: I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn't arrived yet. I have just one day, today, and I'm going to be happy in it."

-Groucho Marx

A Big, Big, Thanks!

"The Make-A-Wish Foundation® of Utah provides a wish to all Utah children between 2 1/2 and 17 whose physicians affirm that they have a life-threatening medical condition. A “wish” is a critically ill child’s answer to the question, “If you could have anything in the world, go anywhere, be or do anything…what would you choose? What would you do?”

As you can see from the pictures below, the annual Family Fun Run was a huge success! We couldn't have asked for a better autumn day! The past 7 years during National Family Month, Mountain View High School, Lakeridge Jr. High, and Orem Elementary unite with the Make-A-Wish Foundation and sponsor a Family Fun Run. They select a child in our school district who is fighting a life threatening illness. All proceeds then go to Make-A-Wish towards that child's wish.

As you probably know, Rachel was selected as the recipient this year. What an honor! Once again, our hearts were touched as we saw families in our community come out to support Rachel! They had a 1 mile race and a 5K race. It was amazing! We saw cross country teams from local schools. We saw moms and dads pushing little ones in strollers, little children running the 5K, grandmas and grandpas walking along side their grandchildren! I only wish Rachel could have been there in person to see this awesome event!

To Carol Jean Bishop and all of those on her committee, to local merchants who donated prizes and food, to the Miner family for the great music, to the principal's and PTA's of the sponsoring schools, to Krachel Greenwood and the Make-A-Wish Foundation, to the Utah County Medical Alliance, to all the behind-the scene teams, and most importantly--to all those who came out to support this event--

THANK YOU! THANK YOU! THANK YOU! THANK YOU!

--The Steele Family

Make-A-Wish 5K Family Fun Run

I LIKE ME SOME MARROW

As you probably already know, today was the day of the transplant. The miracle bag of cells arrived late last night, and are now safe inside me. It's estimated that it was take at least a couple of weeks for the cells to engraft and to start making good healthy cells inside. I feel good so far, and I am looking forward to feeling even better. I pray that we beat this thing for good, and that I can be rid of it forever. I have learned so much throughout all this. I want to thank my dear family, cousins, aunts, uncles and the whole clan for standing behind me every step of the way. People who don't even know me have been so amazing in lending out helping hands. I know the battle isn't over yet, but this sure is one heck of a mile stone. And I know I couldn't have done it alone. I can't thank you all enough for the prayers and fasting, I know that is how I am going to beat this thing all the way.

Transplant Day!

Rachel receives her transplant...From the looks of things, she's excited/tired/confused at the same time...

PCRMC Staff singing to Rachel to celebrate her "new birthday"

The bag of Bone Marrow Stem Cells

RADIATION IS DONE!!

Well, Rachel finished her last radiation at 1:45 p.m. today! Hooray! After a rough start, she ended up coasting through with mild nausea and just feeling really fatigued. She has still been eating well and is packing it in before she starts chemo tomorrow.

We did end up moving to a bigger room. We are now in #4404. This is the same room we spend round two of chemo in. So in a weird sort of way, it's kind of like coming home...

We are counting down until Thursday, her bone marrow transplant day! We are optimistic that this will be the end of her leukemia. Almost 5 months ago our world was turned upside down. I found the following excerpt on another cancer mom's blog. I wanted to share it with all of you. We so appreciate all of your love, prayers, and support.

We Entered A World

We entered a world where everyone is equal, and no one is excluded. A world where we are all the same... ethnicity, language, gender, religion and social status are irrelevant. A world where our kids play bingo and everyone wins. A world where missing body parts go unnoticed and bald heads are the norm. A world where strangers go out of their way to lend a helping hand. Athletes, celebrities, musicians, beauty queens and Santa Claus come to see you, and where anything needed is just a push of a button away. This is a world where no one wants to be, yet everyone is glad they are not alone. This is life on the children’s oncology floor. This world has needles and I.V. poles, MRI’s and CT scans, ambulances and surgeries, chemotherapy, radiation, and bone marrow transplants. We all fight the same battle, each on our own battleground, and working towards the same goal; to save our children.

Found this on Cure-Childhood Cancer's- site...

Bone Marrow Transplant

Here is a video that describes the process of a Bone Marrow Transplant pretty well...For those of you like me who find it all a little complex / confusing.

The video talks about 3 different ways of transplanting Bone Marrow- Rachel will be recieving the 1st method mentioned, donor stem cells from an anonymous donor.

UPDATE: Banana's Foster

So, Rachel may have spoken a little too soon when she wrote so gleefully about her delicious upcoming dessert last night, homeade Banana's Foster... HAHA!!
I'm sure this was delicious, but probably not exactly what poor Rachel expected... :) Get Well Soon Sis! We'll go have some REAL Banana's Foster.

-Adam

It's the climb

I have decided to quote our good friend Miley Cyrus for the title of this post today. She deserves credit for all of her hard work. Hahah anyways...
Tomorrow is my last day of radiation. It's not too bad so far, although it would be a lot more pleasurable if I could receive the radiation while sitting on a couch, or even a chair. But the contraption of choice seems to be a bike seat. And then I put my hands on these bars to the side of me. (I know it is sounding like a bike but the only thing bike about it is the seat) apparently I am a little on the taller side, and the machine is not made for people of my Height. So I have to slightly bend my legs making it almost like a 15 minute wall-sit with my not so toned legs. Then everyone leaves the room (apparently radiation isn't so good for you) it's just the tough ones like me that can handle it :P so moral of this story is RADIATION: not a fan.

I am holding up ok though. I have only gotten sick a few times, I have been pretty tired but doing good overall. Not really looking forward for the chemo on Monday and Tuesday. The kitchen claims they will bend over backwards for bone marrow patients because their diets are pretty strict and specific. Tonight for dinner I ordered prime rib (which they unfortunately did not have, but I allowed them to replace it with steak) and a baked potato, with green beans. I think I will order bananas foster for dessert tonight. I gotta take advantAge of the time my body actually feels like eating before they pump the poison into me. Not to scare anyone, I just refer to chemo as "the poison". Well, there's my update. I still got a ways to go but I am getting closer every day. Thanks so much for all of your prayers, I can certainly feel their effect in my life. Until next time..

Rachel

For anyone who has not heard the song "The Climb" by Rachel's "good friend" Miley, click play below to hear the song and see the music video.

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

H A P P Y 1 7 th B I R T H D A Y R A C H E L ! ! !

HOORAY FOR HOODED SWEATSHIRTS

We've been enjoying our time at home this week and decided we'd better update the blog...since it's been awhile! Rachel has enjoyed the freedom of no "IV Pole" tagging along beside her everywhere she goes. She is still on one IV anti-fungal medicine, but luckily it's only once a day. She's also enjoying the "expanded" cable we have at home. Love that hospital cable, but after watching some of the same movies for 3 months, it's time to move on!!

We had a busy day at the Bone Marrow clinic at Primary's today. They started with a pulmonary function test, a fancy name for seeing how strong her lungs are. They also drew 17 different blood samples...thank goodness for her central line so she didn't have to get poked a billion times! Good news is her ANC (absolute neutrophil count) was 1200 today! Hooray! It's still not much of an immune system, but it's much better than it's been!

Then we went down to RTU for a bone marrow aspiration. Waking up from that wasn't so great this time. The anesthesia leaves a feeling/taste in her throat that literally gags her until she throws up! So her pink bucket became her best friend for the afternoon. She's feeling better tonight though and even ate dinner with us.

I have to share a crazy thing that happened the other night at the BYU women's volleyball game. Rachel was wearing one of her traditional knit hats with the ear flaps. Cosmo, being the playful mascot that he is, came up from behind and pulled off her hat and ran down the aisle with it! Meanwhile, I think Rachel is having a seizure or something as I look over and she's scrunched down in her chair, trying desperately to pull her hood from her sweatshirt over her peach fuzzed head! She was ready to skin a certain cougar alive!! I'm sure he was just trying to have fun and if he ever did figure it out, I'm sure he wanted to crawl in a hole! She can laugh about it now, but you don't want to tango with a teenager who's not quite ready to model her new bald-ish doo! We keep trying to tell her bald is beautiful! But it's easy for us to say...

--Marie

Homeward Bound

My counts began to come up saturday, and continued to rise enough so that I can come home today! We're just about done packing up the room, and now I can finally get out of my cave for a couple of weeks. So yes, I am pretty excited. The estimated re-admission date is the 27. I will keep you updated,

Rachel

My Dream Dog of Choice

This is the Nova Scotia Duck Tolling Retriever.

After researching dog breeds, I fell in love with this one

and thought I would publicly declare it. It is a mid size dog

and the smallest size retriever.

They range from a light strawberry red, to a dark rich red. Aren't they just so cute?!?

MEDICATED

I am happy to say that this week has gone by very quickly. It hasn't exactly been a fantastic week, but I am hanging in there. Starting Tuesday, I began to feel some side effects of the oral chemo that I'm on. I was experiencing a headache, sore and achy body, and just some sores in some areas. Another wonderful side effect is joint pain, which has done a pretty good job of making me feel like a 90 year old woman. So the doctors finally convinced me to go on a PCA, which is like a morphine drip that I can access with a button whenever I need more. (don't worry they still have control over how much you are taking). But Tuesday night was extremely miserable, due to the fact that the morphine dose wasn't high enough,and was not touching my pain. To make a long story short, they have raised the dose, and gave me some other good things that make all the side effects a little better. As you can expect, all the medicine makes me very tired and somewhat loopy, but I will take that over pain any day.

Just thought I would give you a quick little update. Today, things are looking brighter. Any little bit of relief makes me appreciate feeling good that much more. Counts are still at zero, but hopefully that will change soon. Also, I am gaining back my weight that I have lost over the course of time. HOLLA! Now to regain my muscles. Although I think I will wait until I no longer feel like a cripple. That's all for now! Thanks for all the prayers and support, they are what get me through the day.

Rachel

This Week

Tomorrow is the three week mark for this round. Counts are still at zero, but we are hoping to see them come up sometime soon. Cross your fingers. I have been confined to my room for quite some time now, but we were able to talk one of the doctors into letting me walk out to the patio on the 3rd floor at 10:30 last night. So I put on my mask and Emily and I ventured out of the room for the first time in a couple weeks. We hit up the vending machines on the way out, and I got my now and laters (a necessity) and then we went down to the patio. It was the first time I had been outside in 3 weeks, so I felt pretty special haha. We also watched Diary of a Wimpy Kid last night, which I highly recommend. Thanks to everyone who has come to visit and has been following the blog, it's been great. I really appreciate all that is being done for me! Signing out--

Rachel

Here is a picture of Rachel and her little friend Cami, who was mentioned in the previous post. What a CUTIE!

Thanks to kissesforcami.com for the photo! Check out her blog to read Cami's inspiring story.

WHERE DID THE SUMMER GO?

I realized this week that there's a nip in the air, the leaves are turning colors in the mountains, and all the Halloween stuff is looking picked over in the stores (meaning it's been there awhile already!) The last few months have been kind of a blur and as I turned the calendar to October this morning, I realized that at the end of this month, Rachel will begin her bone marrow transplant!

We are now on day 19 of her 3rd round of chemo. I think most of you know that this has been her toughest round so far. Even though her chemo regimen was only 5 days, it really was tough on her body. She developed a skin rash on her face, arms, and legs which is now peeling like a sunburn. Last Monday she woke up with a high fever and chills. They started her on 3 new antibiotics and 2 anti-fungal medicines. Her blood pressure was doing some funky stuff too. It was a bit scary, but by the end of the day--thanks to many doctors and nurses working hard--the fever was gone, blood pressure was normal, and all she had left was a head ache.

Her cousin, Melissa, started a post card/cards/letters campaign for Rachel. So lately she's been hearing from people all over the world! So far she's heard from people in Iowa, Georgia, Utah, Austria, Norway, England, Alaska--just to name a few! Thanks Missy for keeping us connected!

Yesterday her new friend, Cami, and her mom, Chelsea, came to visit! Five-year-old Cami was diagnosed with leukemia (ALL) a month after Rachel. It was so fun to visit with them! Both of these girls not only have a common disease, they both have lots of spunk and a sense of humor! We laughed a lot, ate cupcakes, and enjoyed just being together.

We are so blessed to have family, friends (both old and new), and our community supporting us during this journey. One of our anonymous friends sent a package to Rach this week. Amongst the treasures inside was a beautiful quote by Ralph Waldo Emerson:

"When it's darkest, men see stars."

How true that is...

---Marie

Vineyard Bake Sale + Eagle Project

Vineyard, UT

Bake Sale / Bone Marrow Registry Eagle Project by Ethan Nielsen

More Bake Sale Pictures

OREM, UT

Mountain View High School

Bake Sale / Car Wash

THANK YOU

As you all know today has been quite an eventful day. I really wish I could have been at the bake sales, they sounded like a huge success and a lot of fun. I am still trying to wrap my head around the fact that so much is being done for me. Family members, friends, nurses, and doctors; everyone is in this together, everyone is on my team, and that is so comforting.

I will be honest with you all, being diagnosed with leukemia is not in the least bit easy. I have my days where I cry, and I try and figure out why everything had to be taken from me. Why did this have to happen to me? It shouldn't have to happen to anyone. I miss going to school, I miss being at home, playing volleyball, being with my friends, and just being a teenager. There are days when I simply don't want to try anymore, when I think 'What's the point?' But the point is, is that life may not always be what we expect it to be, but it is still worth living in and of itself.

Now, I also have days like today. Where the whole picture becomes clearer to me, and I realize how truly blessed I am. Because the truth is, I'm not in this alone. Not at all. I have my family, my friends, neighbors, people I don't even know, rallying with me. It is amazing to see people coming together united in one cause and one purpose. That is love, and I am so crazy lucky to be loved by so many people. It has been such an example to me. I know I am a changed person because of this. I want to give more, and to help others like me. Especially with all the crap that is out there in this world, it is so good to see that there really are great people in this world. And as my beautiful cousin Elizabeth said to me "The trials that we are facing have a purpose." She made me a card that says that, and it hangs on my wall so I can see it everyday. I know I am meant to go through this, so that I can be strengthened, so that my family can grow closer together, and so a lot of good can come of it. I still have a mountain to climb, but I know that I have my orange army climbing right beside me.

So thank you, to everyone. I cannot express my gratitude enough. Thank you for helping me stay Steele Strong, because I couldn't do it without you. Your prayers and support have helped this experience to bless my life and the lives of others. I will forever be grateful.

Rachel

The "Sweet" Smell of...Service

Time for a "Brother Post".

Today was an incredible day for our family. As has been mentioned in previous posts, September 25th was the date of the SteeleStrong BakeSale. Countless people spent many hours planning and organizing these events that took place i

n Utah, Colorado, California and Florida. We had all been looking forward to this day for a while now, and today, it was finally here.

I will admit, after driving home from Park City from my super fun job as a night security officer, I was quite tired when I arrived a

t the Bake Sale this morning. I was feeling a little loopy, which might explain my somewhat emotional reaction.

What a sight it was. Almost the whole Rite Aid parking lot was full. The tables were overflowing with delicious looking confections, and generously donated items. Family members, Ward members, and great friends of all ages were everywhere, working to make this

happen. And of course, there was orange. Lot's of orange.

I stood in amazement seeing first hand the overwhelming amount of support and generosity that was on full display. It was extremely humbling to say the least, to know that all of these great people had come together to support our family, and more importantly, my beautiful little sister.

It was humbling to the point that- I will be honest - I started to ask "Why us? Surely there is someone in even more need than our little family..." I mentioned this to my Uncle Erwin, who had an interesting thought to share. He said:

" Adam, THIS is Service. And sometimes we all have to take our turn to be served. "

Well, let me just say on behalf of my parents, myself, Rachel, Emily and Tanner...We got served today. In a huge way. We have been served in so many ways over the last few months. We have been carried. We have been lifted up by your kindness and strength, and made more capable to cope with the challenges we face.

To all those who were involved today, from the planning stages, down to the last cupcake sold...Thank you. You really have made a difference in our lives, and the service and love you have shown our family is greatly appreciated.

-Adam

Here are some pictures from different Bake Sales that took place today! Check back for updates as there will surely be more to come from all of the different locations.

Also Check out the official SteeleStrong BakeSale blog by clicking their logo below:

COLORADO SPRINGS, CO

OREM, UT - Rite Aid

Bake Sale + Yard Sale

A Good Day...with Ryan Millar!

Today has been really good (hence the title). I am really lucky and I got a visit from olympic gold medalist volleyball player Ryan Millar!!! Talk about perks right? He brought me some really neat gifts from the USA volleyball team-- I got one of his jerseys, and one of Nicole Davis's jerseys who plays for the women's USA team. I also got a really cool signed volleyball, and some skull candy headphones. (he happens to be sponsored by skull candy) Not gonna lie, this was the highlight of my week... it will probably be the highlight of my whole stay here haha It was great for someone like him to take the time to come and see me, let alone come bearing gifts :P

So thank you, thank you, thank you to Ryan!! It's things like this that really inspire me to keep going. To top it off, I got some really nice mail and a package today. Lots of cool pictures drawn by little kids, and some nice letters. It blows my mind how kind and generous people can be. Even when they don't know me, they are quick to lend their love and support. It has been such an example to me, and I hope I come out of this a better person. Thanks to everyone who follows the blog, and has done so much for me. I truly have the greatest support system, and I couldn't do it without you guys. You make me realize how blessed I really am.

Tomorrow is day 10 in the sanctum, hopefully the rest of the days will fly by. And I think its worth mentioning that my hair is continuing to grow back, I have a fuzzy head now. It's crazy how excited I get when I realize it's growing. Definitely grateful for hair. Anways, that's all for tonight. I finally managed to have something to talk about!! Yayyy

Thanks again to EVERYONE!!

Rachel

Time for a new post

Sorry it has been a while. It hasn't been exactly eventful here, but Thats to be expected. I fill my days with doing school every now and then, watching tv, and.. Haha that's about it. Sorry there really isn't much to write about, I'm struggling to find something interesting to enlighten you with. My ANC is officially at 0 again so I am not allowed to leave my cave. I might whip out the scooter again, although I think my little brother has now claimed it and stArted riding it to school. And I don't think I am quite ready for rollerblades. I am excited for the new fall seasons on tv to come out haha something to look forward to right? Oooook I think I will sign out for now, thank you everyone for your prayers and support. I will rack my brains to come up with something good for the blog. Until next time,

~Rachel