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?

SteeleStrong 1

THANK YOU***THANK YOU***THANK YOU

A very special thank you to those of you who brought beautiful flowers to the house!

***As many of you know there are some things just not allowed in the oncology floor, such as live plants, flowers and latex balloons!***

Acute Myeloid Leukemia ( AML )

Attitude is a little thing that makes a BIG difference.
~Winston Churchill

These photos show our Rachel with an Incredible Attitude!