THERE'S NO PLACE LIKE HOME!

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!

--Marie

SteeleStrong Bake Sale Fundraiser

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!

The life of being at home

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

Until next time,

Rachel

30 second service project

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. 

Welcome Home

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!

Rachel and Jake ( with his "work glove" )

Rachel with Clark and Lexi

Home Again!

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..

Rachel

Sanctum Fever

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!

Rachel

The Halls of ICS

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,

-Rachel

Since Rachel can't leave her room to see "Charlie St Cloud" here is a video for her of Zac Efron (and others) standing up to Cancer :)

All hail Roberto

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.

Racheelllll

Oompa loompa

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

-Rachel

Wednesday

Dear bloggers, I am sorry that I don't have a more exciting title for my post today, but today is wednesday so I thought it fit nicely. Not much new has happened, but I am due up for another transfusion which I am actually getting right now. I had a slight fever today but it didn't get too high and didn't stay for long. Oh! And I am done with chemo now, so now I'm just waiting for my counts to come back up.

I wanted to let you all know, that I am so grateful for all the support and prayers. I really feel so blessed to know so many great people. Even with the long days here in the hospital, I just feel so comforted to know I have got a lot of people on my side. The nurses and doctors here are amazing. I couldn't do this without you guys. I really appreciate all the prayers, thank you thank you thank you.

Things here are going good, I'll keep you updated.

Rachel

Another day

Today was pretty uneventful. I wasn't feeling very good this morning, so they gave me some medicine to help and I slept until about 3 in the afternoon. It made for a nice quick day haha. I only have two more days of treatment left, so that's pretty exciting. I am becoming pro at this hospital patient stuff. Sorry this entry wasn't all that exciting, but I will let you know when something amusing happens. Until next time..

Rachel

A ROOM WITH A VIEW!

After starting off here on the third floor (since ICS was full when we arrived on Tuesday), we got relocated to one of the hospital's best kept secrets...Room 4404! It is very spacious, has a huge bathroom, a couch that makes into a bed and a nice view of the hills above the valley. It almost felt like an "upgrade" you get at the local Marriott! The only downside is that our cell phone coverage in this room is a little less than ideal! We get most texts and once in awhile a call gets through! So if you are having a hard time reaching us--that's why.

Rachel is halfway through her second round of chemo. She has had the usual nausea and loss of appetite that comes with chemo. The anti-nausea medicines make her pretty groggy, but given the choice she'd rather sleep through her treatments than be throwing up the whole time! She is hanging in there and tries to eat a bit when she can. Today's favorites were 1/2 of a Twix bar, some yogurt and some raspberry sherbet! Her craving for pickles is still alive and well!

--Marie

Back for round 2

Well, after getting to go home for ten days, I am now back in the hospital for my second round of treatment. I am actually getting chemo right this very second. Which is kind of a bummer because I was really starting to feel good again. But oh well, that's the name of the game. Good news though! Not only were my counts really good by the end of my time at home, but the LP results showed that there are no cancer cells in my spinal fluid, and as far as they could see, none in my bone marrow either. This means that I am responding well to treatments, not that I can go home early (yes I did ask if I could just go home) haha but I am really excited that things are looking good.

Today after I woke up from the spinAl tap and bone marrow aspiration, they threw me in a wheel chair and had my parents take me to my room. Now usually a nurse will come to take me back up, so we can go the back way, in the service elevators. But since no nurse came we got to go through the main entrance area, with lots of people around. Now to give you a good picture of what it was like, you have to know what I looked like. They had wrapped a blanket around me becAuse I was freezing cold, I was wearing my hat with ear flaps (my traditional favorite), and a mask. Also, I was very groggy and still trying to wake up. So it looked like they were wheeling a drunk storm trooper in a cocoon through the hospital. Yes, people were staring. I probably would have too. And to top it off, we waited what seemed like forever for an elevator. While poor little kids asked their mommies what I was. Haha ok i am exagerating, but I did get a lot of looks. And then the elevator came, and the doors were closing, so I stuck my foot out to stop the doors, but it didn't exactly work. So everyone wAtched as I got my leg stuck in the door, but the doors did open. So that is my adventurous day for you, I am back in my sanctum, and would love to see anyone that can come visit :P thank you all so much for everything, I couldn't do this without you.

Rachel

FAVORITE THINGS...

We've all been enjoying almost a week at home after almost 4 weeks at Primary Children's Hospital.  During this time, we've realized some of our favorite things (that we've missed!)

Favorite electronic device:  DVR!   How did we ever live without it???

Rachel's favorite snack this week:  PICKLES!!!

Rachel's favorite answer when asked "What would you like to eat?"  I'm really not hungry!
(Although she did decide that sausage and waffles sounded good for lunch today.)

Rachel's response when we had her cousin and aunt come "hang out" while Frost & I went to a family reunion in Salt Lake:  "Mom, I don't need a babysitter!"

Rachel's favorite past time this week:  Riding her bike up and down our street in the evenings!

We are all enjoying sleeping in our own beds, eating produce out of the garden, and just being home!
Rachel's counts are coming up nicely!  We will be heading back to the hospital on Tuesday, July 20th, for her 2nd round of chemo.  Frost and I have gotten to be pretty decent "nurses" as we give her IV antibiotics, flush her lines, change her central line dressing etc.  (However, I know Rachel still prefers all her nurses at ICS!  And we don't blame her!)

Thanks to all of our family and friends who continue to lend support and love!

--Marie

Home again

Hello bloggers! It has been a while. As you probably already know I am home for a little bit before I go back for my second round of poison haha. Being home is great, it is so good to get out of my sanctum for a little bit. I am still very limited, and sort of living life in a bubble, but this bubble is a little more roomy than my sanctum. It's been really good to see friends and family, to have more channels, and to eat. That's right, I eat now! It's been great. Although I am pretty sure my stomach shrunk. But I have successfully eaten and kept down pizza, mashed potatoes and roast beef, a blt, ribs, and ice cream with a brownie. That was just a random list of food that I could remember eating since I got home. So I am pretty happy about that. No more going weeks without food or water... Fingers crossed.

I am really doing so well, and I know it is because of all the prayers and support I have been given by all of you. I can't thank you enough. I'm still going strong thanks to all of you, and thats the plan from now on. Thank you!

Rachel

For those of you that were at the Steele Family Reunion- here is the big group picture we took in our orange SteeleStrong shirts!

Homeward Bound!

Rachel got sent HOME today! She will be resting at home for the next 10 days or so, and then go back to the hospital for her next round of chemo. Emily and McKell made this great sign to welcome Rach back to the house.

Oh, and Happy Birthday to our great Dad.

Today is Thursday

Thursday Thursday Thursday. Let's see if i can remember what I did today. As for the diet, that's improving. Moved on to full liquids and soft solids. Today I ate some yogurt, ice cream, and for dinner had mashed potatoes. Now, this is very exciting for me as there is now food in my belly. Also today I rode the exercise bike for a half hour. The doctors think i should be Able to go home within the next few days, which is super exciting. Thanks to everyone for following the blog, I'll try to keep it interesting. Until next time---

Rachel

Steele Family Reunion

At the annual 4th of July Family Reunion we all honored Rachel with bright Orange "SteeleStrong" shirts, designed by her two cousins McKell and Josh. It was quite a sight to see all 98 of the attendees dressed in bright orange showing their support for their Granddaughter, niece, and cousin. Below is a video of some of the highlights of the reunion, including a carnival, 5K run, and a volleyball tournament.

Progress ...beyond bachelorette

How enlightening it has been to watch the comments pile up regarding bachelorette! What a great experience this has been for me to "enjoy" the drama of going on a date with four guys at a time. Not my idea of fun, but it has indeed been a learning experience. Hint...my money is on Roberto!

OK now if I can get to the important stuff! Rachel has had a very good day ...both yesterday and today. Her stomach has been feeling better indicating the inflammation in her bowel has been going down and to confirm this she had another ultrasound today and they told us the inflammation is still there but it has gone down! As Rachel would say...woot! Woot!


The doctors advanced her to clear liquids today which now includes broths, jello, Popsicles, juices, etc. She had some chicken broth, Gatorade, Popsicle, quite a bit of water and is still feeling good about it and talking about much more interesting food for tomorrow! Her blood labs came back today as well with little blips in increasing bands and monocytes. Basically what this means is they think we are starting to see some increases in her white blood cells which will allow her to go home soon. Some of the doctors were even hinting at sometime this weekend. Not too sure what that will exactly mean but we are optimistic! We hate to get too excited even though things are looking so good because we know that even after getting to come home there is still significant risk for infection, fever, and other ailments that we are still going to have to watch very closely...this time without the help of such great nurses and doctors as we have had while here at Primary Childrens. Still something to celebrate!!! We also know that after coming home and getting to feel more like normal it will end, probably a week to ten days at home then back here to Primarys to start round two of chemo and the ups and downs associated with that. We just hope we are all better prepared for round two, three, etc.

Frost

Clear liquids woot woot!

Well today they advanced me to clear liquids. I was honored. Unfortunately my stomach didn't seem to like the few sips of apple juice that I had. To put it bluntly I sorta threw up. But..I did successfully stomach some sprite. So we're getting there. I have been looking forward to the weekly event of watching the bachelorette, so that was the highlight of my day haha ask my dad if he likes that show. I also had visits from relatives today so thank you for coming and I hope you aren't offended that the bachelorette scored the highlight haha, I really do enjoy your visits. It keeps me sane. Ok, I think i will call it a day. Thanks so much for all the prayers and support. I love you all

Rachel

3 Weeks and Counting. . .

Rachel has now been a resident here at Primary Children's for three weeks! The doctors and nurses have been great, the view isn't too bad,(she actually watched the fireworks from her room last night)and the food...well, she couldn't really tell you about that yet! But the highlight of the day was when they advanced her diet to "ice chips!". She's hoping for clear liquids tomorrow.

We hope all of our Steele family are having a great time at our family reunion in Idaho. Rachel sends a big shout out to all of her cousins there! McKell and Josh, the shirts are awesome!!

Today she has had a great day-no pain or nausea! Yippee! Here's hoping for another amazing day tomorrow!

Hair cut?

Well, before I came in here, I had been meaning to get a hair cut for quite some time. But I was thinking of more of a trim. Today. We whipped out the scissors....and the electric clippers, and I got my hair cut. To be completely honest it wasn't my favorite event of the day, but I will admit that it feels soo much better than my patchy head of hair falling out. As far as pictures go....I am sure we will post some, I just don't know how soon I am ready to introduce my new look to my blogging minions. It's not as bad As I thought it would be, I just don't want to scAre anyone haha. But now I truly feel fit for my sanctum. Oh, good news!! The doc said in two days if I keep doing well they can start me on some ice chips and maybe clear liquids. (I haven't eaten in weeks) I am very excited by this news, I never knew my stomach could feel so empty. So feel free to come up and visit and we can stuff our faces on ice chips. Thanks for following the blog, and more thanks for all the prayers and support. Love you guys.

Rachel

Jail Break!

Since Rach was feeling like getting up and going for a walk today, they gave her permission to "break out" of her room, put on her mask, and stroll the halls of ICS...with her IV pole in tow! She also rode the stationary bike here on the unit for 15 minutes. The doctors seem encouraged that she was able to do this without aggravating her stomach pain.

She is still constantly hungry and longing for the day when she can eat...and drink again! The list of things she's craving grows longer each day. Each new day here brings challenges. I'm sure she's longing to be at the Steele cabin this weekend at our family reunion instead of here. She has also yearned to be on the court with her volleyball team who are competing at nationals right now in Nevada. But she is a tenacious fighter..and though it is hard right now, we know Rachel will continue to battle and hang in there!

Thanks for all you prayers, love, and support!

Update as of now...

Ok so today is Thursday, and I am actually surprised to say that time goes by really fast here. All the days kind of blend together,and I have not eaten for a week. I kind of think of it as a fasting marathon haha. Well anyways, today I went down for another ultrasound to check up on my intestines. These are not particularly my favorite, due to the fact that sometimes they like to push pretty hard on my poor belly. The ultrasound looked the same so I still can't eat but on the bright side it's not getting worse. Whoa I think they just gave me some medicine that makes very loopy. A wave of magical haze has just overcome me. I will try to make as much sense as possible.

                                     

* Tanner modeling his shirt for the upcoming Steele family reunion, 

* Jason, Kodi, and Jacob's dog, Leonidas shows his support for Rachel by wearing a SteeleStrong bracelet...er...collar. 

Some days I get really sick of being here, or I get pretty discouraged about how long and hard it's going to be. But to be honest it is hard to feel this way for long, and I know it is because of all the support and prayers I am getting from you guys. I truly feel so loved and blessed. I just feel bad that it took leukemia to make me realize how blessed I am. I have the best family in the world, (cousins, aunts, uncles, etc.) with amazing friends to top it off. I am so lucky to know all of you, you really do keep me going. This wasn't really on my list of things to do this summer, but I know it is going to make me stronger. Sorry for the corny speech, but I really just wanted to say thankyou. I love you all, I miss you like crazy. Thank you blogging minions for your loyalty to my blog. I love you!

- Rachel

         

Hello from Rachel!

Some good news!

Today we met with Drs Barnett and Verma this morning during their rounds. They came in with a smile on their face. They told us there was match for a bone marrow transplant! My brother Adam is a 10 out of 10 match!!! My dad thought if there were a match that Adam would be the one to match since he says that Adam and I are so much the Same personality wise. I don't think so but I am still so glad that he is willing to provide bone marrow in a transplant procedure.

On the down side our phone signal was down all of today so if. You were trying to get me or my mom or dad they weren't not answering because they didn't want to talk it was because for some reason the signal from ATT was not working well in the hospital area. Hopefully after many calls they will get the thing working by tomorrow!

I guess I can count today as a good day! I hope you all had a great day!

-Rachel

GOOD LUCK CLUB UTAH 16 BLACK!!!

GOOD LUCK AT NATIONALS CLUB UTAH 16 BLACK! 

M a k e   i t   R A I N !

As many of you know, up until the day Rachel was diagnosed, she was practicing with her Volleyball teammates, preparing to go to Nationals on June 30th - July 3rd. Her team will be playing without her, and they were kind enough to stop by and say hello to Rach before they left for the tournament. Rachel sent them with her "lucky pebble" so there should be nothing standing in their way! We will keep everyone updated on how they do in Reno. Thanks to all her teammates for being such a light in Rachel's life at this time. She will be rooting for you!

Close up of Rachel's arm with her new SteeleStrong bracelet

Today Rachel got some SteeleStrong bracelets from her good friend, Karen Wynn (They are ORANGE, of course). Stop by to see Rachel and she just might give you one! Here is another of picture of Rach showing off her bracelet, and staying strong!

Sunday X 2

Today marks two weeks being here at Primary Childrens. Today went much better than our first Sunday here. A day I don't want to repeat. Rachel had a fair day. She is still in some pain from her typhilitis which is basically an infected intestine. We have another sonogram and spinal tap scheduled for tomorrow. We are hoping for good news on the typhilitis and continued good news of no cancer cells in the spinal fluid. She has been off of chemotherapy now for almost three days and we are told to expect her to get worse before things start to improve. We pray that she will continue to "Be Strong"as we go through the recovery phase of her treatment.

Emily and Tanner with the cardboard stand-up 

of Rachel / Nacho that was taken to Girls Camp by our ward this year.

We had some wonderful visits from friends and family with a very nice "simple" dinner from aunt Kathy Merkley. Those of you who have been lucky enough to experience her culinary skills will know simple never means simple. She is a saint! Rachel even called down to where we were eating to ask what we were having even though she wasn't able to enjoy the meal. She is still NPO which means no food or drink until her intestins heal up. This could mean two or three weeks, but we're hoping for much shorter as you can tell from Rachels previous posts. We also had several updates from girls camp and what a great experience that was for the young women and how blessed we were to have them praying for Rachel in her absence.

Praying for a better tomorrow!

Frost

FOOD, GLORIOUS FOOD!! (NOT!!!)

Not much new today...she's still wishing she could drink and eat, but the doctors are still wanting her to wait awhile till things calm down a bit in her abdomen. We are hopeful that as soon as her white count comes up, she will at least get some clear liquids. Clear chicken broth even sounds good to her right now! Of course, the mouth sores are raging so that could pose an eating obstacle as well.

High point of the day was probably watching the world cup soccer tournament--even though the U.S. Team lost. Oh, and the 3 small sips of water she got to take 3 pills throughout the day!

Hopefully, Rachel will feel up to writing tomorrow!

--Marie

Friday

Well, today has been kind of crummy. I finally feel like I am ready to eat something and now I can't. With my low immune system my intestines developed typhilitis...which basically means that if I did eat...it wouldn't be so good. So that's the news I got today, I can't remember if I cried harder when I was diagnosed or when they told me I couldn't eat. Haha most of you know how much I love food. But it's ok, because I let my dad know that we could just go out to eat every time I got to go home,topping it off with a dinner at Chef's Table as the finale for when I finally kick this thing. First round of chemo finished up this morning...only four to go!!!

It is probably worth mentioning that I did get a hair cut. Chelsea Neiger was nice enough to come give me one. Not a whole lot goes on up here....the nurse claims that we have had some funny conversations when I am heavily medicated, I will let you decide for yourself on that one.

I want to say thank you for reading my blog, I try to make it worth your while. So thank you my blogging minions. Oh and in case you were wondering how I stay alive if I can't eat, they hook me up to some big tasty bags of proteins, carbohydrates, and lipids. So not food in the form that I would like it... But essentially it's food so I can't complain. I hope everyones summer is going great, don't forget to come visit me in my sanctum! Mi casa es su casa

Haircut

BIG Thanks to Chelsea Neiger who came and gave Rachel a great haircut today.

We figured the shorter, the better--- for when Rachel starts to lose her hair.

Thursday Highlights

Highlights today include:

*Fever came down quite a bit

*After sleeping most of the day, Rachel woke up and actually had an appetite! Unfortunately, she was on a clear liquid diet and had to make do with Gatorade, clear chicken broth, and Sprite. Watch out tomorrow--pizza here I come!!

*On one of her trips to the potty, she didn't quite clear the door and bonked her head! No harm done...all three of us just laughed!

*Usually when I ask her what sounds good to eat she says, "Nothing!" But today she said, "Warm macadamia nut/white chocolate chip cookies with milk!". We just hope the appetite holds until tomorrow!

*The BYU Women's Volleyball Coaches came to visit her! You could tell it made her day!

*Some people have 5 pockets, or 5 brothers and sisters, or 5 golden rings...but Rachel has 5 different antibiotics going in at once! Seriously, we are glad that we are in a place where
Skilled nurses and doctors take good care of their patients. We know we are in good hands!

goodnight!

Wacky Wednesday

I debated whether or not to post anything today. We would all rather hear from Rachel herself than from one of the rest of us...but I figured maybe this is better than nothing.

Today Rachel has still been battling a fever. They aren't sure what's causing it, but they are watching her very closely. Our main job is to try to make her laugh and to entice her with tempting foods to try to get something down her! Between the fever, chemo, mouth sores and nausea, it's hard to work up an appetite. But we always look for a silver lining...or try to anyway. Tonight her fever came down to 101.3--much better than 103.7 which is what it was earlier today. Not a huge silver lining, but we'll take it!

TTFN (ta ta for now!)
Marie

Mom's Update

I thought I would write today...since Rachel is not feeling so well. Each day here is kind of like a roller coaster ride with some ups and downs! We started the day by finding out that Rachel's spinal fluid came back negative for blasts or cancer cells. Hooray!!!

After waiting a little over a week, we also got her bone marrow biopsy results.

This tells us the chromosomal makeup of her cancer cells. These results place you in a low, intermediate, or high risk category--which is linked to the future need for a bone marrow biopsy. Rachel is in the intermediate risk category, which means that if Adam or Emily end up being sibling matches for Rachel's bone marrow, she would eventually get a bone marrow transplant. If they do not match, she will not get a marrow transplant. High risk candidates have to get a marrow transplant no matter if it is a sibling or unrelated match. We feel glad that at least she's not in the high risk category!

Later this afternoon, she got a fever which they are currently treating with two different antibiotics. We've learned that each day here brings joys and challenges! Even though she isn't feeling so great, I am impressed with how she continues to fight this! She is always polite to the nurses and says thank you, even if they are telling her it's time for another potty break!

Thanks to all of you who have fasted and prayed in our behalf, and those who are rendering acts of service to our family. We truly have felt the Lord's tender mercies during this difficult time!

--Marie

Transfusion

I am currently getting a transfusion right now. Not gonna lie it's really gross.

As you can see from the above post, Rachel had her first Blood Transfusion today. Transfusions are very common for patients with AML, and they are made possible when people donate blood through foundations like the Red Cross.

I have included a short video from the Red Cross that demonstrates the importance of giving blood by telling the story of Danielle, a little girl with Acute Myeloid Leukemia. I thought this was a really neat and inspiring video, so I decided I would post it :) Enjoy!

-Adam

...Fun Times...

   

       TanTan, proving it is possible to be cool...              The Duck...with his/her (?) new Tutu. 

                            and "germ-safe"  at the same time. 

             

             The Family + Teddy Bear, All in stylish masks....

            Nacho, with buddies Zach, and Eli                       Teammates and Nacho...

SUNDAY

______________________________

It has officially been a week. Just a few more of those and I'm out of here. haha thanks again to all of you who have come to visit, and have sent me goodies. I have decided that I would probably love the hospital if I wasn't forced to stay here. The nurses are great and they get you anything you want. The only problem is I don't feel up to much. Hopefully that will change as my immune system builds up again. 

It's kind of boring here, but the doctors say that boring in the hospital is good. I think so too. The most eventful thing that has happened is when my dad fell out of the rocking chair in front of the nurse. I was so drugged up it was hard to stop laughing. Oh, and happy fathers day!!! Sorry for humiliating you on my blog, dad. Thank you to all the dads out there, you are great. I will now retire to my sanctum, I think I will refer to you blog followers as my blogging minions. Thanks for reading :) 

Dad's update

I just wanted to give a dad's perspective on what is happening now... There are a few things I wanted to write about. Her white blood cell count, or absolute neutrophil count (ANC) is really dropping now as the chemotherapy starts to do its job. Her count this morning is down to 0.0 which normally should be 800 to 1800. This shows that the bad cells are being killed, but also the good cells (ANC) are being killed as well.

A result of this is her immunity will drop to zero and she will become very susceptible to infection.We want to let you all know that we want you all to be more vigilant when you come to visit. If you are sick, fevered, runny nose, or around someone who is, or are thinking of getting sick, please try to find another time to come visit Rachel. We have also been cautioned to limit visitors to groups of no more than two or three at a time. Please don't let this discourage you from coming up because we all know what a social animal Rachel is and the good that it does to have visitors. I just wanted to make you aware of the added precautions necessary at this time in her treatment.

 Some information on her treatment regimen that may be of interest... Rachel will be on chemo for at least five rounds. Each round consists of approximately 28 days. The first 10 days she will be receiving the chemotherapy drugs which are mostly given via her IV. She receives four different drugs at varying times and concentrations through that 10 day period. After the chemo is finished she is given three weeks for her body to rest and recuperate. Her ANC should start to rebound and when it is back up above 500 she can be discharged and go home for a week or ten days until the next round begins, then back to the hospital we go for round two, etc. While her ANC is below 500 she is very susceptible to infection, therefore the concern stated earlier on regarding healthy visitors.

I want to thank all of you for all you have done for Rachel and our family in this difficult time. We have been so blessed by the hands of so many and will be forever indebted to so many. Thank you for your love and prayers!

Frost

Just another update

I kind of lose track of time here in my sanctum. I guess today is Friday. I went in for another spinal tap and even got to request the flavor of my anesthetic, I chose strawberry in case you are wondering. That went well and I came back up to my sanctum for some lunch. (yes I can still manage to eat small amounts of food) wooo hoo! I also had more visitors today, and some of them were kind enough to wheel me down to the giftshop. I looked pretty funny going through the halls with my little mask, sexy hospital gown, and my constant companion (my iv pole). But the giftshop was fun, i found a magazine and got caught up in the bachelorette so i would say today was pretty successful. (also, the cancer count in my spinal fluid went from 300 to 30 from the day I was admitted to today)!!! So all in all, today was a pretty good day. I love and miss you all, I wish i could be down in st. George for jamie's wedding. I know it will be great, I would really appreciate it if you would save me some frappé. :)

Thursday

Today is my fifth day in my new home. I feel more like eating so that's good. Mckell chiaki and Karen came up today and painted my fingernails, so I feel pretty special haha. I am still on chemo, and they also pump one liter of fluid into me every hour, so i am getting my exercise walking the five feet to the bathroom and back. I wish I had more adventurous stories to tell that don't have to do with what i am eating or how much I pee. But to be quite honest there isn't much to do up here. All The more reason for you to come visit, right? :) tomorrow i get another spinal tap, i don't have a ton of details, i just kinda roll with it. Thanks to all of you who have given me fun things to keep in my room, all of the nurses have commented on how much they like it. I really couldn't do this without all you guys, I honestly feel so blessed to have the friends and family that i have. Even though this wasn't on my list of things to do this summer, I know it is going to make me stronger and bring me closer to all of you. Thank you for all of your support. I love you all!

Manicure!

Karen, Chiaki, and McKell came to paint Rachel's fingernails today, and brought a giant acorn with them. ( Rachel can fill you all in on that story later today... )

Tanner really wanted this picture posted. Enjoy.

Sibling Donor Tests!

AML sometimes requires a bone marrow transplant. The doctors have not yet decided if Rachel will need a bone marrow transplant, but as a standard precaution, Emily and I (Adam) were tested today to see if we are a match, should Rachel need a transplant. It was good to feel like we were doing something to help, and we got to meet a very interesting hospital employee...and a very nice, normal phlebotomist. Fun times. Check out Emily's awesome bracelet and bright orange band-aid.

We'll let everyone know if either of us are a match- cross your fingers!

-Adam

Wednesday

Today was a pretty good day. My head ache is gone so I am pretty happy happy about that. I am also proud to announce that I hAve eaten some food today for the first time since i arrived. A little bit of yogurt, jamb a juice, and cafe rio seemed to do the trick. The u of u volleyball team came up to visit so that was really cool, I just wanted to say thank you to all those who have come to see me, and for all of the support everyone Has been giving me. I love you all, I really miss you but i will be home as soon as I can, thanks again! And for those of you who are wondering I am slowly getting used to the wAter here...




-Rachel

1st day of Chemo

Chemo begins today.

Today at 5pm Rachel will begin her first round of Chemotherapy. It's crazy to think that on Saturday morning she was running around digging and spiking at Volleyball camp.

Yesterday Rachel was given a dose of chemo in her spinal column, and tonight she will be hooked up to an IV drip that takes around 10 hours for the medicine to be administered.

Thanks to Karen Wynn who stopped by to french braid Rachel's hair. Her hair looks beautiful and it helped take her mind off of things.

We will continue to keep you updated as to how the chemo is going- we will be waiting for the results of her bone marrow biopsy for the next day or two.

The Voice Within...

Rachel- All of us have been talking and we wanted to let you know how we feel. We think that these song lyrics really represent what we would tell you if we could...you inspire us so much and we love you more than you know!

-Adam, Emily and Tanner

The Voice Within

Young girl don’t cry
I’ll be right here when your world starts to fall
Young girl it’s alright
Your tears will dry, you’ll soon be free to fly

When you’re safe inside your room you tend to dream
Of a place where nothing’s harder than it seems
No one ever wants or bothers to explain
Of the heartache life can bring and what it means


When there’s no one else, look inside yourself
Like your oldest friend just trust the voice within
Then you’ll find the strength that will guide your way
You’ll learn to begin to trust the voice within

Young girl don’t hide
You’ll never change if you just run away
Young girl just hold tight
Soon you’re gonna see your brighter day

Now in a world where innocence is quickly claimed
It’s so hard to stand your ground when you’re so afraid
No one reaches out a hand for you to hold
When you're lost outside look inside to your soul

When there’s no one else, look inside yourself
Like your oldest friend just trust the voice within
Then you’ll find the strength that will guide your way
You’ll learn to begin to trust the voice within

Life is a journey
It can take you anywhere you choose to go
As long as you’re learning
You’ll find all you’ll ever need to know
(be strong)
You’ll break it
(hold on)
You’ll make it
Just don’t forsake it because
No one can tell you what you can’t do
No one can stop you, you know that I’m talking to you

When there’s no one else, look inside yourself
Like your oldest friend just trust the voice within
Then you’ll find the strength that will guide your way
You’ll learn to begin to trust the voice within

Asher to the Rescue!

This morning, Rachel was visited by one of her favorite people in the world, her cute little cousin Asher Morrow.

As you can see, Asher is one friendly boy, with a big smile that can brighten anyones day.

Rachel asked multiple times yesterday about when Asher was coming to visit, if that tells you anything about how much she wanted to see him.

Thank you to Asher and his wonderful mom, Sarah for stopping by and saving the day!

A big thanks to everyone who has visited so far, and to those who will visit in the coming weeks and months. Your support is greatly appreciated by Rachel, and our family.

A GREAT BIG THANKS TO MY SWEET COUSINS!!!

Clark, Lexi, Jacob, Joe, Callie, Carter, Tater-tot, Dallin, and Ellie!!

Also thanks to Maddy McBride for her sweet card.

Dallin- Stan, my "Googly Monster" is keeping me so brave. Thanks for making himfor me!

and thanks to my cousin McKell for the awesome scrapbook page :)

Todays Events according to "Rashizzle"

Today I got my first surgery ever. I had a streak going for me, with no stitches ever, which has ended today.haha oh well I got tubes put into my chest, which is explained more clearly to the side.

I want to say thank you to all of you for your love and support.

I know I can beat this, and you guys keep me going and help me

stay strong.

I miss all of you so I expect to see you up here soon

:)

-Rachel

WHAT WOULD I DO WITH OUT YOU ALL?