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