USA Volleyball Article

Check out this great article from USA Volleyball.org about Rachel and her team at Nationals!

Proving to be as Strong as Steele at Girls Junior National Championships

Candice Kasischke June 29, 2011

ATLANTA (June 29, 2011) – Rachel Steele (Orem, Utah) has spent her past 12 months doing two challenging things: beating cancer and working toward the goal of attending the 2011 USA

Volleyball Girls’ Junior National Championships being held June 25 to July 4 at the Georgia World Congress Center in Atlanta.

After five rounds of chemotherapy and spending six months in the hospital, Steele has overcome leukemia and is back playing on the court with Club Utah 17 Black, which is competing in the 17 National Division.......

To read the rest of the article click HERE or go to:

http://usavolleyball.org/news/2011/06/29/proving-to-be-as-strong-

as-steele-at-gjnc/43151

Good Luck at Nationals Rachel!!!

Star Raising Party Pics

Experiment!

My hair was getting out of control... major afro status. So I went and got it trimmed, but the real difference was straightening it. Here are the results of my little experiment.

I went to clinic last week and everything looks really good. My counts are all doing well and my ANC is coming up. I have been playing volleyball a lot and have been practicing with my team for nationals. I am definitely not as good as I used to be, but I am coming along. I leave for Atlanta with my team on tuesday, I am really excited! I also went swimming for the first time in a year the other day. I am really enjoying the little things I haven't been able to do for so long. Until next time...

Rachel

CureSearch Walk SLC

This is a video of the brave kids diagnosed with cancer in Utah this past year. Many of them have beaten cancer, some are still fighting, and a few have gone on to a better place.

Support CureSearch and help find a cure for Childhood Cancer.

Click Here to Donate Today

p.s. If you look closely, you will see Rachel about midway through the video :)

Happy Anniversary

One year ago today I went into the ER with a terrible headache and neck pain. We suspected it would be meningitis. I remember being really scared to get a spinal tap. They drugged me up to help with my headache, and to make it so I wouldn't feel the spinal tap. They sent us up to a room where we worried over what type of meningitis I had. I was quietly praying that I would be able to get better in two weeks for nationals. Around 9 pm the infectious disease doctor came in and kept saying that he was really hoping this would turn out to be meningitis. We were all a little bit confused. Then he mentioned that there were small signs of leukemic blasts in my blood, and that they were calling in an expert to come take a closer look. Before leaving the room he assured us that the "odds were in my favor", and that he really felt strongly that this would be meningitis. After an hour went by they called my parents out of the room, and I began to panic. My fears were confirmed as I saw the doctors and my parents walk back towards the room, with tears streaming down their face. I had leukemia. They told us that they were going to transport me up to primary children's immediately. My mom was not allowed to ride in the back of the ambulance with me, so I rode alone with an ambulance attendant, while my mom rode up front and my dad followed behind in a car. It was the longest ride of my life. I quietly sat and cried, wondering what would happen to me. Hoping that they were wrong. I called and texted a few friends and told them what was going on. It was now about 1:30 in the morning. The next morning they did a number of tests to confirm what type of Leukemia I had. It turned out that I was diagnosed with what was considered to be the "worse" of the two most common types. I tearfully called the college coaches that I had been in contact with, and informed them that I would not be at nationals in a couple of weeks. That day I had a large number of visitors, friends and family rushed up to come see me. It was a very sad day but I tried my best to stay positive. I don't think it had really sunk in yet. This was the start of the longest year of my life.

It is funny how the longest year of my life seemed to go by pretty fast. Maybe it was because of all the medication I was on that much of it seemed like a blur. I was forced to grow up faster than I would have liked. Forced to worry about whether I would live or die, rather than what I was going to wear to school the next morning.

I went through over 130 days in the hospital, over 3 weeks at a time without being able to eat, countless medicines and chemotherapies, the scare of not being able to get into remission, full body irradiation, one bone marrow transplant, and I now sit here today cancer free. I have learned that life is so very fragile, and should be treasured. I have learned the importance of the support that friends and family can offer. I have learned that cancer is almost a bigger emotional battle than it is physical. I will admit, sometimes I forget the lessons I have learned. Cancer hasn't made me perfect by any means, it has just taught me a lot. And even though I am still struggling to get back to my normal self.... I believe that when I do I will be a better person because of all I have learned.

We are not on this earth to struggle alone. The whole point is that we help one another out. To quote high school musical, "WE'RE ALL IN THIS TOGETHER". I am so grateful that I have had a wonderful support system. Now I am sort of beginning to ramble. So I will conclude this post by saying thank you so much for all that each and every one of you has done. Your prayers have made all the difference! Here is to a healthy year to come!

Rachel

Join the Steele Strong Team!

On June 12th, it will be one year since Rachel was diagnosed with AML! That is a day we will never forget. It has been an interesting year, one filled with many ups and downs, more tears than laughter, fears offset by hope, faith amidst the affliction, prayers and more prayers, and an overwhelming sense of humility as so many of you performed tender acts of service for our family. Instead of dreading this upcoming anniversary, we've decided to "give back" to one of our favorite cancer organizations--CureSearch.

CureSearch for Children's Cancer funds supports the lifesaving research of the Children's Oncology Group. During the last 40 years, research has taken children's cancer from a virtually incurable disease 40 years ago to one with an overall cure rate of 78% today. Their goal is a 100% cure rate for children's cancer. Only research cures children's cancer.

Come walk with us on July 9th at 9 a.m. for the CureSearch walk! It will be at Liberty Park in in Salt Lake. It's only $10 to walk and show your support, remember all of your donation will go towards finding a CURE for childhood cancer!

If you can't walk with us, you can sign up to be a virtual walker and still be a part of our team.

You can donate any amount--it all goes towards finding a cure for kids like Rachel. Help us spread the word! You can link this blog post to your facebook and twitter. So join our Steele Strong Team today!

*A quick update on Rachel's clinic visit yesterday. Her ANC went up from 600 to 2200! That is good news! She's been attending her high school volleyball camp this week too. Between that and her club practices the last couple of week's, she's been pretty busy!

--Marie

Current Events

We went to clinic again this week. Everything was good except my ANC has dropped to 400. They don't really know why so I am going to go in again next week just to check up on it. I am officially off cyclosporin and only have one pill to take in the morning and at night.

I am back to playing volleyball again, it is a lot of hard work but I hope it will pay off. I am really sore and it hurts to move but that just means I am making progress.

Things have been a little tough lately, and my spirits have just been a little down. It can just be hard readjusting to things sometimes. But I just keep going on in hopes of brighter days. That's all we can do right? :) Thank you for your prayers and support and for following my blog!

Rachel

Summer Days

More pictures

Emily, Rachel, and cousin Taylor.

A lot of thoughts are going through my head, I hope I can make them make sense. A friend of mine with AML, Tanner, passed away this weekend. He was only 19, so not far from my age. He was unable to serve a mission because of his disease, but I know he is up there serving right now. My heart goes out to his friends and family. I can't imagine what they are going through.

Read Tanner's story at tanner-foreverstrong.blogspot.com

Over the past week I have really been trying hard to focus on my blessings, rather than complaining about what I don't have. I may not be able to play volleyball just yet, but I have to legs to walk, and for that I am grateful. I did not have to have any operations that changed me physically, so I am still able to pursue playing. I am alive and well, and loving the little things of life. I am loving that it is becoming summer, as you know I spent last summer cooped up in a hospital room. I love the thought of being able to go back to school, and have a teacher who can lecture and give lessons rather than just doing worksheets. Last night I was able to take my first shower in a year, it is little things like these that make me feel closer to normality.

There are some days that I am very scared. Scared of relapse, scared of dying, scared of having my life ripped out from under me again. These things are always in the back of my mind. I realize that sometimes it is harder to heal emotionally than it is physically. But I know that we cannot live in fear, because that is no life at all. Little by little, I'm getting better. I am making progress. Sometimes I forget about cancer just for a little bit, and I can only look forward to more of these times.

I have had a great support system through out all of my illness. I honestly could not have made it through without my family, and without my dear friends. Thank you for helping me stay Steele Strong. It is so true that God does not put you through challenges on your own, you all have truly helped bear my burden. Thank you for the prayers, and thank you for everything.

Rachel

New Picture of Rachel

Packing on the Poundage

Today at clinic, we found out that I had gained 5 pounds in 2 weeks! Those calorie drinks seem to be working. Not only that, but I got my line out!! I am now tubeless. It's great. Within a few days I will be able to shower for the first time in a year. Today is a good day :)

It finally seems like I will be able to take my mind off of cancer every now and then. Also, this weekend my team qualified for nationals again! I was able to go and watch them and it was a lot of fun. It is so nice to have things going well, I am loving that I am out of the hospital for the warm weather. Thank you all for your prayers and support, I couldn't have made it this far without you.

Rachel

Yes, I have an AFRO

After a bit of styling... I came up with this.

SteeleStrong Originals

Amalphi Arts has made it possible for me to make prints of some paintings I have done, and to sell them with the proceeds going towards Cure Search and to Hope Kids. I wanted to find a way to give back and I am really excited that I am able to do so through my art!

We have set up a new page to process orders for anyone who is interested in getting a print or a framed print of one of the paintings. Click here, or click the logo below to go to the SteeleStrong Originals page.

Here is some more info about the great things that CureSearch and Hope Kids do for Cancer Research!

CureSearch for Children's Cancer funds and supports the lifesaving research of the Children's Oncology Group, the world's largest cooperative pediatric cancer research organization-- essentially a "cancer center without walls."

Over the last 40 years, research has taken children's cancer from a virtually incurable disease, to one with an overall cure rate of 78% today.

HopeKids provides ongoing events and activities and a powerful, unique support community for families who have a child with cancer or some other life-threatening medical condition. They surround these remarkable children and their families with the message that hope can be a powerful medicine.

Thanks for your thoughts and prayers- things are going really well for me right now :)

-Rachel

The Latest

We have set a date to take out my line! May 10th I will be rid of this foreign object in my body forever. I will have to get poked every other week, but I decided I can handle that. Let's hope I can haha. I have been trying to bulk up and exercise lately. My dad found these 540 calorie drinks, that don't taste very good, but I have been trying to drink some of those for some extra help. I have also been biking more and playing a little bit of volleyball. I still love playing, so thats good, I just wish I had my old body to play with. I wish my life were like a movie so they could cover the hard work part in a 2 minute musical sequence and then I would be done! But that's ok. I will keep you all updated.

Rachel

Clinic

Clinic today was all good news. Let me tell you it is so much better to hear good news than bad (obviously). I remember going to clinic pretty much terrified for the doctors to come in, because I was sick of hearing bad news. Today, my platelets were 110, my kidneys looked good, I gained a little weight, and we even talked about taking my line out. I am a little nervous to have my line out, just because it is a really big deal....and I don't want to get it taken out only to have it be put back in again later. But on the other hand I am very VERY excited to get it out. It will be one more step towards normalcy which I really could use. Also, I am still tapering off of my immunesuppressant and should be completely done with it in May! Thank you all for your thoughts and prayers, they have helped me get to the point that I am at today. Thank you!

Rachel

Just Hanging Out

Here are some random pictures of lately. Most are of Waldo, my trusty companion.

You can click on the pictures to make them bigger

This is me, Waldo, and my lovely sister Emily :)

I was warming my feet by the fire and Waldo climbed onto my legs and took a nap. (If you are wondering what is in my mouth, it is a mango. I love mangos.)

Isn't he photogenic?

In this picture you can see him relaxing, and he has pulled every single one of his toys around him to keep him company.

Now for an update: Things are going good, I don't go back to the doctor until next tuesday, so I got a little break which was good. I went to Reno to watch my volleyball team play over spring

break, it was lots of fun to get to see all the girls again and to watch some volleyball. Hopefully I can start working out again now that my platelets are on their way back up. I actually went to mutual last night

and played dodgeball with everyone, and also realized that I now have the body of a 90 year old woman. I am slow and uncoordinated, and my throwing arm is very sore today. (no offense to you 90 year old

dodge ball players out there) I am still working on getting all of my energy back.... which I hear can be a very long process. But in the mean time I do school and slowly get back to normal. I will keep you updated

on this week's clinic visit, thank you so much for following the blog!

Rachel

April Showers Bring...Platelets!

We haven't posted in awhile--but everything is still going pretty well. Our last clinic visit was Wednesday, April 13th. Rachel received Retuxan, the IV med that binds with her B-cells and makes it so they will stop making antibodies (which kill off her platelets!). That was the last of 4 doses she's had over the last 4 weeks. Now we just watch and wait and hope that her platelets continue to rise. The bone marrow doctors said that occasionally it takes another course of treatment if antibodies are still being produced. We're hopeful that we're in the 50% that doesn't need additional treatments! Her platelets were 67 last weekt (from 41 the week before) so we are making slow progress!

As you saw on our last post, her hair is coming in thick and curly! Yahoo! She can't wait for it to grow a little longer. She gets tired of trying to explain to random people that she's a "she" not a "he!" (Most of them are under the age of 10.) Thanks for all of your continued prayers and support!

--Marie

Surprise Visitor!

Today Rachel's AML friend ERIN came to visit with her family!

Here is a pic of the two old friends reunited.

Here is a picture from last November when both Erin and Rachel were still in the hospital, and another picture from today. It's neat to see how healthy they both look now!

Before (November 2010)

After (April 2011)

To read Erin's blog go to littleairbear.blogspot.com or click the link.

-Marie

Hip Hip Hooray

I went into clinic today and we found out that my platelets jumped up to 41! So the medicine is working, and my platelets are on their way back up.

Also, for those of you who don't know, I won my election. I am student body secretary! Sorry this post isn't more exciting, I am very tired from waking up early haha

A Tribute to Kim

My friend up at the hospital, Kim Nelson, went into a coma last week and passed away on March 31, 2011. She had AML as well. Although I didn't know Kim all that well, I know she was a great girl who came from a wonderful family.

This makes me sit back and think about what is truly important in this life. Life is so fragile. It is hard to always remember this. It is hard to always be grateful for what we have. I hope we can all go on and cherish the relationships we have and live our lives to the fullest.

Here is Kim's blog if you would like to read: kimbattlestheredrobot.blogspot.com

Rachel

What I did today

I went up to clinic again today to get another dose of Retuxin and some platelets. My platelet count went from 21 to 13. This is still very low, but the doctors were encouraged that it hadn't dropped further. So they didn't give me any platelets, because they want to see if I have started making them on my own. I will go back up on saturday to see if I have continued to drop or if I have made more. All of this has made for a crazy week, but at least it gives me something to do.

It's hard to believe that someday I might actually be normal again, but I keep hoping. Sometimes it feels like cancer has been my entire life even though I had a wonderful 16 years without it. I find myself with nothing else to talk about except my "medical life" and I realize that it's because it has been my life for the past year. I am really looking forward to only having to worry about things that a normal 17 year old worries about. But I have learned that that is just how life is, we take what we've been given and we adjust the best we can. Nobody really is "Normal" after all :) Thanks for reading my blog, and a special thanks for the prayers and support. Cheers.

Rachel

What I've been doing...lately

Sorry I haven't updated in a while...Just wanted to write a quick post to let you all know I'm still alive and kicking. Haha...I've been busy running for Student Body Secretary at Mountain View H.S. I am on the gold team, and elections are this Friday, so I'll let you all know how that turns out. Here are my two campaign posters:

Also, The other day I got to play Rock Band with a bunch of my cute little cousins- there's a video of it below....

Peace, and Blessings

Rachel

Got Platelets?.... I don't!

The last week has been very interesting. I went back to clinic on tuesday to find out that my platelets had dropped to 3,000. This is dangerously low. For those of you who don't know, platelets are what make your blood clot off. So when you get a cut the platelets help you to stop bleeding. When you have low platelets--- like I do, It makes you much more susceptible to bleeding, bruising, etc. The doctors told us that the dropping numbers could be attributed to a number of things. First, it could be a virus that is killing off the platelets. Second, it could be a platelet antibody that eats the platelets. Third, is GVHD. And dropping platelets could also be a sign of relapse..BUT the doctors assured me that if it were relapse all of my other cells would be dropping off.. which they ARE NOT. Just to make that clear. But when they mentioned that of course I freaked out. But after they reassured me I felt much better.

So they did a number of blood tests on me, testing for viruses. I got to do a lovely nasal wash that feels like they are sucking out your brains. I don't recommend it.

So today (friday) we went back up to clinic to see if I needed more platelets after my last transfusion. My platelets had dropped to 2,000. Not good considering the low end of normal is 150,000. But they came in and said that some test results had come back, and told me that I had Epstein-Barr virus (EBV), HHV6 virus, AND a platelet antibody. So.. We can attribute my diminishing platelets to those three little boogers. But I feel pretty lucky to have viruses rather than the other options.

The good news is is that the treatment for both EBV and the antibodies is the same medicine. It is called Rituxan, and can make you feel sick for a day... but isn't near as bad as chemo. So today at clinic I received a platelet transfusion, and my first of 4 doses of Rituxan. The Rituxan took 4 hours to go in, but they assured me that it would only take two hours from now on. With the combination of the platelets and the medicine, we were at clinic for a total of 8 hours today. It was a very long day.

Sorry I have taken a while to update, hopefully the medicine will start kicking in and my platelet problem will be fixed. I am very grateful that we were able to receive answers today. Thank you all for your prayers, I really appreciate it.

Rachel

What are you fighting for?

Rachel and "SteeleStrong" are being featured in a new ad for Lucha Shoes- watch their video here and then check out their website by clicking the link : luchashoes.com

-Adam

(Rachel's brother)

Lucha Shoes--- Fight With Your Feet

My assistant coach Mike Glauser helped come up with these awesome shoes called Lucha Shoes. They are new and improved, and cheaper than similar brands. Lucha means "fight" in spanish... so the whole purpose of these shoes is to "fight with your feet". The cool part about it is that you write what you are fighting for on the bottom of your in-souls of the shoe.

Go to luchashoes.com for more info. What are you fighting for?

A Visit to Salt Lake

Well... Yesterday I noticed that I had red dots covering my legs. This doesn't sound like anything serious at all, but anytime anything happens you're supposed to call the doctors. That's the joy of being a post transplant kid. We figured that the dots were petechiae, which can be a sign of low platelets. So we had to go up and get tested, and that is exactly what it was, due to the fact that my platelets were at 8,000....and normal range is 150,000. Low platelets could mean that I am trying to still bounce back from my virus, or it could be a sign of Graft vs Host disease. We are praying that it isn't the latter of the two, I go back this Wednesday to see if the platelet transfusion did what it was supposed to.

If it ends up being Graft vs Host then it is considered chronic, and I will have to be treated with high doses of steroids. Please help us pray that my platelets will shoot back up. Steroids don't sound all that fun to me, and they aren't even the kind that would help with athletic performance :P yes, I did ask that haha. Hopefully everything will be good so I can continue to get strong and return to school for my senior year next year. As much as I love being a hermit, I don't think I will ever take school for granted again. Thank you for all of the support, every little bit helps. I will keep you updated.

Rachel

Waldo Plays Dead

It looks like I just pushed him over, but I didn't I promise. Little Waldo can be smart when he wants to be.

Make a Wish

My wish for the make a wish foundation has been granted! My wish was to go to Italy and I just heard today that the board approved, and I am very excited. I have been looking forward to this for a long time, and hopefully if all goes well we can go this august. Things are going good, I am trying to exercise as much as I can and hopefully I am gaining weight haha gotta love those high calorie drinks. Sorry I don't post very faithfully I will try to do better.

Rachel

Fun at Clinic

So it's been awhile since we posted....sorry! Rachel's last clinic appointment was March 1st. We were really surprised when we walked into Room #9 and saw a big welcome written on the white board, plus a custom made sign on the rocking chair saying it was "Reserved for Rachel Steele!" Thanks, Paige for going the extra mile and brightening our day!

Rachel is really doing well. Her creatnin level, which tells how her kidneys are functioning, was almost in normal range. So they will give her half as much fluids at night via IV. If she continues to do well, she can get her central line out soon! Yahoo! The other good news is that we don't have to go back to clinic until the 15th of March! Every other week is better than every week, eh?

She began an exercise routine this week, which is exciting. The down side is that her muscles are so sore right now that she can hardly move! Amazing what laying in a bed for 6 months can do to your body...uggh!

--Marie

Watch me Run!

Yesterday I ran up my street twice. That's right, twice. This is a great accomplishment for me, considering when I run it feels like my legs weigh about 100 pounds. But it got easier as I got going. I think it would help if my heart didn't have to work so hard to pump blood to my huge body. i think it is kind of funny that I am trying to gain weight and get into shape at the same time. Kind of defeats the purpose wouldn't you say? I will let you know how that goes :P

Also, today we found out that our sweet little doggy is afraid of buckets. It's really funny he barks at the bucket and runs away. That's all for today!

Rachel

Today is Wednesday

As you can see I am losing my creativity when it comes to Post Titles. Hopefully that is something that will come back to me haha We went to clinic yesterday, everything looked really good except my kidney levels are continuing to go up. They don't really know why but are trying taking me off a certain medicine to see if that helps any. I also went yesterday to the Moran Eye Center. Cataracts can be some side effects of radiation so we went and got my eyes checked to make sure I didn't have any problems. The doctors said my eyes and vision are still very good. STILL? It's like they phrase it as if they are expecting them to go bad. But that is just the world of cancer for ya, a lot of fear and paranoia, praying that nothing goes wrong. I have been very lucky, things have gone in my favor so far.

For school I am taking a human physiology course, and it is simply amazing what the body is capable of. All the intricate systems, where everything has to work just right to keep us alive. My body went through lethal doses of radiation, wiping out my bone marrow to make room for new bone marrow. If I wouldn't have gotten the new marrow, the radiation would have swept through the rest of my body. My transplant saved my life in many ways. 30 years ago if I would have gotten AML they would have sent me home to die, and now here I am, on the road to recovery. The transplant road is a long one; I am still getting better in many ways. Gaining back all my muscle, working on eating regularly, trying to get by on what little energy I have, and just trying to move on with life. At times I struggle to see it, but I have been truly blessed. Science and the human body are in and of itself a true miracle.

I am so grateful for all of the prayers and support, for all of my family and friends. Your prayers are the reason I am alive. Thank you.

Rachel

GOOD NEWS!!

It has now been 8 months since the beginning of my long journey. It seems like forever since we have received good news, but today we finally got it. The tests showed 100% donor cells, and negative for the FLT3 gene mutation. These are both very good. The doctors also told me that I have a cellularity of 50% which is very good for a bone marrow kid. It is taking a little bit for all of this to sink in, to think that I really may get to be done with all of this someday. Although the last 8 months seemed to melt together and fly by, at the same time it has felt like an eternity. I want to thank you all for your prayers and support, there are so many things that could have gone wrong, so many different directions that could have been taken, and yet things still worked out. Our prayers have truly been answered. I still have a ways to go, but the light at the end of the tunnel is getting brighter everyday. thank you once again!!

Rachel

Adventures at home

Hey everyone. The new addition to our family has been keeping us all busy and entertained. My dad even admitted that it was a spectacular idea to get a new pup. hahaha ok he didn't admit that but he has as much fun with the dog as the rest of us do. Things have been going good, I just realized I forgot to update you on last week's clinic. Still good news, things are continuing to get better. I am still on fluids at night but once I dont need fluids then we can start looking at taking my central line out. That will be the day! When I can finally take a wonderful shower again. (I currently have to bathe while being careful to keep my chest dry.)

Also.. this tuesday is the big day. Although it is not quite my hundredth day, I will be getting the bone marrow aspiration. Yes, I am nervous. Thank you for your prayers as i can certainly use them. I am keeping busy trying to do school, exercise, and play with my puppy. I am still pretty fatigued which is normal for transplant patients, but I will take fatigue over nausea any day.

Thanks so much for following my lovely blog. And a special thank you for the prayers and support.

Rachel

Fun with Waldo

PUPPY!

NEW PUPPY WALDO!!!!!!





Rachel was thrilled to receive Waldo, her new Dachshund puppy! I'll let her post more pictures and info, but here are a few for now, so everyone can see what a cute little guy she has.






- Posted using BlogPress from my iPhone

Clinic News

Sorry it has been a few days since clinic and I am just now posting. I am happy to report that this week's appointment was the first good one in a while. It was a lot more positive, they said everything looked good...my labs looked good and I am on track. We're getting ready for day 100 stuff, which includes a pulmonary function test (where you test your lungs, and get to blow in a tube til you feel like you are going to burst) and a bone marrow aspirate, which they will test. They will be looking at the cells to see what percentage is the donor's cells and what percentage is mine. Ideally, we want to see 100% donor cells due to the fact that my cells tend to be cancerous haha. So there is my little update for the daay... Pray to see donor cells ! Thanks for all the support. I know we are receiving good news for a reason, and it is finally helping me to see light at the end of the tunnel. Thank you for the prayers!

Rachel

Rachel and her cute little cousin, Tyler Peters

CLINIC 1/1911

Rather than make you all wait until Sunday (when I usually post), I'll tell you a bit about Rachel's clinic visit yesterday. The good news is that her platelets went up from 109,000 to 133,000! That was the good news! Thanks for all of your prayers.

They are still concerned about her intermittent nausea and were hopeful that by now (day +77) she would be done with it. Her liver enzymes were also a bit elevated today, so they are stopping her TPN (IV nutrition) and just giving her fluids with some magnesium in it. This means that she is supposed to double her food intake this week...which is tricky when you don't really have a normal appetite. But she's going to give it a try.

It's hard to hear the doctors say two weeks in a row that she is not where they would like her to be at this point. It's even harder to see the fear in your daughter's eyes when they say that. I know she is scared about what all this means. We just keep telling her that she is making progress--even though it might be slower than we'd all like. She looks and feels better than she has in a long time (other than a silly head ache the past couple of days.)

My goal this week is to keep reminding myself that regardless of what the doctors are saying, I know who is really in charge of Rachel's healing process. I know He is very aware of her and that we have to be patient and trust in Him.

--Marie

I can't think of a post title

Hey everyone. I thought I should post since it has been a while since I have posted myself. Things are going better, I am very excited for every ounce of progress I make because it feels so much better to not be throwing up every day. As far as energy goes, that is getting better too, but nothing is quite 100% yet.

I spend my days pretty bored, but am excited for all the tv shows getting started again. Not to mention THE BACHELOR!!! hahaha ok this season is crazy entertaining. It is always fun when there is a psycho girl on the show.

I got an exercise ball for christmas, and on a good day I will even bounce around on that a little bit. And Adam and I have been going on walks every now and then, which is good. Well, those are just some random things that have been going on. I go back to clinic again tomorrow, so we will let you know how that goes. Thank you all so much for the prayers and support, I can't believe how many people are praying for me and it feels so good to know that. Thanks so much!!

Rachel

UPDATE AT LAST

Rachel is making great progress this week as far as eating is concerned! She has only thrown up once this whole week! She has started requesting things randomly when they sound good. Some of these include pasta fagioli soup, chips and salsa, and tuna fish sandwiches. (No--not all at the same time! That would be disgusting!)

She still has no desire for desserts--although her dad makes a mean chocolate shake that he's talked her into a few times. We can tell that she is feeling better overall. Her clinic visits have gone well. (We go up once a week to Primary's.) One thing that has the doctors a bit worried is that her platelet counts keep dropping. They should be just going up at this point. So we'll hope they've turned around when we go up on Wednesday.

She's been excited to see her hair coming back in nicely along with eyebrows and eyelashes! Thanks to all of you still checking the blog! I know we've been boring lately...but we've decided in the cancer world---BORING IS A GOOD THING!

Day +66

You've probably noticed that since coming home, we have slowed down on our posts. Please don't hold that against us! We appreciate all of you following Rachel's progress! We will try to post at least once a week to give you an update. I'm sure you understand how nice it has been for all of us to be home...together...under one roof again.

Rachel is on day 66 since her bone marrow transplant on November 4th. Her progress is gradual--but we're moving in the right direction. She is still not eating enough on her own to be off of her IV nutrition. But once in awhile she surprises us and asks for a tuna sandwich or a piece of bacon! Fatigue is still a battle, but she gets stronger every day!

She actually got to attend her first hope kids event yesterday. "HopeKids provides ongoing events & activities and a powerful, unique support community for children with cancer and other life-threatening medical conditions. We surround these remarkable children and their families with the message that hope can be a powerful medicine." Our local chapter is headed up by C.R. and Amy Oldham, two of the most amazing people around! Yesterday's event was a movie up at Jordan's Commons. They reserve the whole theater for "hope kids" and their families once a month. We got to see Disney's "Tangled." It was fun for Rachel to get out of the house for awhile.

We appreciate all of your continued support for Rachel. We hope she feels well enough to start working on her school work soon. We've pretty much taken the 2nd term off for transplant. She's planning on "catching up" in the next few months. Even though she won't get to attend school with her friends, she's planning on completing her junior year working with our district tutor.

Have a great week!

--Marie

Sunday Thoughts

Since we got out of the hospital, we've just been enjoying our time together during the holidays. It's so good to finally have all of us under one roof again! Rachel continues to improve slowly. Nausea is still her worst enemy--it comes and goes. We consider it a good day if she makes it through without throwing up at all. The dr. says that bone marrow transplants really mess up your stomach--especially in teens. So we keep hoping this is all "normal".

We can't wait until she has an appetite again! It has really been a struggle for her to eat. Thank goodness she is still getting TPN (IV nutrition) at night. Even though the progress is slow, we are still so grateful that she is home with us. We have really been able to focus on what is most important this holiday--family, serving each other, and remembering the birth of our Savior--the greatest gift of all.

Thanks to all of you who continue to shower us with kindness, prayers, smiles, hugs, and hope! We hope that 2011 brings joy and good health to everyone.

--Marie

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