Jordyn Eve!

That title probably doesn't make much sense to you guys, but tomorrow Jordyn and my Dad are flying out! Can I describe how excited I am/express my happiness in words? No. Not even going to attempt. Everyone here is probably so annoyed of hearing it, (the doctors and everyone) but I've never been more excited about something in my life!

So today was short! EKG, blood test, radiation. (I made them take out my IV it's so uncomfortable I'm just going to endure a prick tomorrow- but the look on Diane's face was PRICELESS when I made her floss my teeth last night)

I was a little frustrated this morning because my dizziness and some pain came back, but it's impossible after meeting the amazing people here to feel sorry for myself. Even though I'm struggling with the hair situation.

 I've met some amazing people. Just this morning I met Lexi, she was diagnosed at age 3 with absolutely no hope (very severe diagnoses). Today she is 17 just like me, but in worse circumstances, yet still one of the happiest people I've ever met. Halo cast and more (I am choosing not to go into detail on this one). She told me people judge her when they look at her (you can tell), and she's the most confident person in the world. She's beautiful.

My nurse made me hummus! I'm telling you these people are amazing.

I love smoothies, so today I got a strawberry one! I was overjoyed.

Anyways, we went shopping again at the grocery store. Then went back to the Ronald McDonald house!

I prefer to think of this more as a vacation rather than home, but I like it here.

I had a seminary pizza party tonight! It was so fun. We had Korean Popsicle's!

Now I'm back at the Ronald McDonald house ready to take my pills which we are cutting the dose on at midnight. I'm nervous!

I know what I'm going through is difficult, but I've come to realize, EVERYONE has it hard. Like in the talk I posted yesterday, "No one is exempt" We are all going through trials every day. We are all in different circumstances, but we need to know God loves us and is EXTREMELY aware of what we're going through. After all, he's experienced everything we have. I'm still Rachel. I still want to hear about you guys! I care so much. 

Sometimes I wish you guys could walk a day in my shoes, just to see, the way I've been able to, how God has his hand in everything. Life is so wonderful. Never take a minute for granted. We are all struggling, but we can push each other through.

Rachel

Longest Day Ever!

Longest day ever=Long post. SORRY!

Today we woke up late, we were supposed to be out of bed at 6, and got up at 7. I'd been awake since 4 so I don't know what I was thinking. So we rushed to breakfast and all my crazy appointments, and apparently we weren't the only ones running late!

So first after a LONG wait, and an EKG

we went to get my IV in. I wanted to put it in my hand because it will be left in for 3 days and I don't/am not getting a line. I had put numbing cream on in 3 different places at breakfast,

 and ironically the first place we chose to try ((my left hand) with the most numbing cream that I told was a great vein) blew. I was a little frustrated. But then we tried my left arm, where I didn't want it cause it's a rather inconvenient location for a 3 day tube. But it worked! It didn't even hurt! So I was relieved. UNTIL I went in for the actual blood draw. They said they didn't know/didn't even try to see if my IV worked, and stuck me in my right arm too! Luckily it didn't hurt and it wasn't an IV, just a little prick.

I've been really blessed with needles today. I think I'm getting the ability to handle them a lot better. It's just a little uncomfortable in my arm having (choosing) to write this!

 

It has to be in for 3 days because they need a 1 hour, 2 hour, 4 hour, 8 hour, 24 hour, and 48 hour sample of my blood. (I think that's all)

Moving on! I met with some new lady about life. Fortunately her job is to make sure things run smooth for me, and I didn't feel depressed talking to her! She was such a sweet lady, I was really nervous for the questions I was supposed to answer, but they actually made me feel better about my quality of life. Even though my side affects are worsening fast, things could be a whole lot worse.

We then had lunch. It was the first time I've tried lamb before. I loved it!

It''s probably a really good thing my appetite is gone.

There at that time was some sad (private) news in my extended family. (No questions please:)) but I was really kind of terrified for a moment, then I felt the spirit really strong around me. The most peaceful feeling in the world.

At 1:05 PM I started Chemotherapy! It's oral. I'm on a study with "Crenolanib" Good news: it didn't make me throw up! (yet.) Bad news: It makes me feel morbidly obese! I feel like a bloated, beached whale. Fortunately I am on nausea pills. So we're just going to try to endure this one! This is me taking my very first chemo pill!

I was elated to finally hit what I consider to be my starting line. It's been a hard thing knowing I'm going to have to fight cancer, but haven't really been able to do anything besides take steroids which  only change my appearance dramatically. But after this point I was so excited, I crossed the starting line at 1:05.

So basically I lounged in a hospital bed and watched the Andy Griffith show with Diane all day. Well mostly slept. But still.

Next I started radiation! We got a blood test, and then went downstairs. So we got my music playing, my mask on, the lights off, and I had my first round (lasted around 15 minutes) of radiation (irradiation, whatever that means!) My hair smelt like it was burning. They said that was normal and next time to bring lifesavers to suck on. Luckily I've always been a fan and have TONS already so I popped one in right there and then and all was well! It is probably just mental anyways. I'm trying to not think about my hair for the next couple of weeks I still have it.

Dinner was hard. I don't feel the best stomach-wise right now so I was able to eat some chicken noodle, and a Popsicle. I have never enjoyed a Popsicle more in my life than I did tonight.

Next I just napped. I was a little on the grumpier side. I've never been more tired in my entire life when I was woken up for my next blood draw and EKG.

We were able to relax until the final blood draw of the day. What a relief! I felt a little more energized. So after about 12 hours in the clinic, we went to the grocery store (my idea).  After two minutes in the produce section I felt like I was going to die I was so tired. But we got some essentials, and headed back to the Ronald McDonald house where we are now. And so ready to sleep.

Thank you so much for all the things you guys have done and said to me. I don't know what I would do without you guys. Everyone of you is such a blessing and a miracle in my life. I love you so much! Even if we don't know each other personally.

Rachel.

PS: This is a link to a talk one of the leaders in my church gave. (Not me trying to preach!) It has just helped me so much through my life. And it has brought more meaning than ever in my life and current situation. Take what you want from it, even if you're not religious it has some great advice and humor, (everyone needs a good laugh)
http://www.lds.org/general-conference/2008/10/come-what-may-and-love-it?lang=eng

Week 2

Today was an emotional roller coaster. (Not the smoothest ride)

I woke up today very early, with such high energy I went on a 5 mile (stationary) bike ride. Needless to say I felt very accomplished.

So Diane and I went to the clinic, and mail room where I got a package, I was so excited!

I went to school. It lasted 17 minutes. I go 3 hours a week.

Then I went to my "child life group visit" AKA group therapy for teens. It was fine while I was there. But afterwards, I've never felt worse in my life. After lots of complaining, crying, scriptures, prayers, and realizing I wasn't completely ready to talk about my feelings, I calmed down. It didn't help that no one besides me believed in anything. They were all so depressed. But Diane always has a way of making me feel better.

Lunch was so good! I love vegetables.

I moved today! To the Ronald McDonald house. I was terrified, but I like it here!

Tennessee drivers bring new definition to #prayersforrachel

Tomorrow I start chemo and radiation. So nervous, but it's time. I'm ready. It's going to be the longest day EVER! And I'll have an IV for the next 3 days I think. Here's my schedule.

Anyways, I'm exhausted!

Love you guys tons and tons. XOXO
Rach

Weekend!

Hello again!

I think today might mostly be pictures!

Last night I went to the sleepover! We ate taco salad, made candy cans for the missionaries in the ward, headbands for ourselves, and watched hunger games!

 

 

 The best part of the sleepover, is I think everyone is probably informed with my current "situation," and doesn't treat me different at all. I do things for myself. At first it was kind of shocking, because my ward back in Utah is SO supportive, but all night I was able to feel like Rachel! Not Rachel, who was diagnosed with life-threatening cancer. And I loved it.

So after staying up from 2 AM yesterday, to 1 AM last night, I was so tired! I was able to get a good nights rest though, I did wake up every now and then, but there was no tantrums! (I think) My left arm and hand and mouth went pretty numb last night, and have been ever since, but that's okay, I can do hard things! They said hopefully it'll go away with radiation, along with the hair, and same with the hearing in my left ear, (1 in 8 or 9 chance, lets hope I'm one of the 7 or 8) But my right ear, and my eyes won't be affected. YAY!


At 8 every morning I have to take my steroids. And careless me didn't screw the cap all the way on last night, so it was stressful but I hopefully found all of them in my backpack! And then we had breakfast. THEY HAD RASPBERRIES! Best moment of my life.

I got back around noon, worn out as ever. But luckily today is Saturday and that means no doctors appointments today! So I've had a lazy day. Full of sleep.

Good news of today: I finally lost some appetite! I'm so excited because I'm getting so sick of food!  I crave fruits and vegetables now! I probably always should have since I grew up on a fruit orchard.

It's nice that they have things here that they have at home like Target, Walmart, Costco, Hobby Lobby, and Sonic. It makes me feel like I still have a little bit of Orem here even though we don't get out to those places.

The reason I have had the hardest time with this is my appearance. It's changing so fast. And I know I'm still Rachel but it's hard to look in the mirror, at someone you're not used to seeing. Especially with the puffy face, the skin that my steroids give me, the coloring, and the way my body feels. But it's also a blessing because God has helped me get through this. And Diane. I'm reminded by so many people every day of who I really am, and that looks don't matter.

Less than 3 weeks ago I was a normal athletic, crazy teenager. Today I'm in a little different position, but I feel like a stronger person. I've grown so much.

Anyways, we just ate dinner. And now we're going to try to find something entertaining in this place.

Thanks so much for all your comments, and motivation. It has helped me SO much. When I get a scripture, or a link to another blog, a story, or even just a simple comment it brightens my whole day! I'm loving it. I love you guys. Thanks for being miracles in my life. 

Rach

Day 5!

August 24, 2012

Okay I'm sorry I'll be catching up again today, it'll probably be a bit random, but hopefully it'll get easier as time moves on to write shorter and neater each day! (And I'm pretty horrible with computers but I'll try my best!) Today, (Day 5) I had a crazy schedule, like every other day that never seems to slow down, it was a lot smaller than every other day though. It's therapy here, radiation oncology there, a visit with my oncologists, consultation with the pharmacist and everything in between.

Today's schedule:

I thought it was interesting that on Sunday, one of the first things my first Dr. told me was "I believe it's impossible to come to St. Jude's and leave without believing in a higher power." There's a lot of comfort in that sentence to me.

And the cicadas! Holy cow, they are so noisy. Diane and I thought we were walking through a power plant. They hum so loud it was deafening!

Yesterday I woke up around 3 AM. My legs felt like they were broken. Every step I took felt like a stress fracture from the knee into the foot. It was the most excruciating pain I've ever felt. I wanted to give up/get my legs amputated, I'd do anything. But Diane, who's always there to comfort me, helped me until we were able to get my body going again, and some medication to relieve the pain. We found out another side affect to my steroid, is it could weaken my bones and if pain is an indicator, it is doing a great job! But I'm able to manage the pain and they are working on reducing my dose so all is well. Yesterday morning was the hardest time I've had yet. But spirits have been raised high since then!

I also had to fast yesterday for the research study they did. (Accidently chewed a piece of gum, whoops!) After getting an IV without any numbing, and laying on the bed around an hour, of course not eating (anyone who has ever been on steroids know how hard that is), I felt like a champion!

 During

After

I was thinking the whole time during the research scan about how much I love to make things with my hands! Especially bracelets. I'm going to look into this!

Anyways, after finishing my full day schedule, we were able to get back to the grizzly house and relax.

This morning I woke up at 2 AM. In fact, I don't think I've slept since. I took a shower, read all my emails, got caught up on everything, and by 4 was even able to accomplish core! I know it was only 100 sit ups and 150 bicycles, but it gave me a good sense of accomplishment! It did help that I wasn't even hungry or mad about anything all morning, and there was no leg pain today! It has been a great morning.

So we head out today, making the usual rounds with the doctors.  I am for sure starting radiation on Tuesday next week. They told me I'll lose my hair in 3-4 weeks, and they'll be going in with the radiation from 8 different spots. I should only lose hair in the target area of treatment which will be the lower part of the back of my head. This was a great relief to me.  Wide headbands and scarves have been recommended.   So I went the the pharmacy, picked up a boat load of medications and then headed to a group therapy, basically we made a big mirror, for the art show here. It was good to meet the other teens, who'd been there from 36 days to 6 months.  Most of them have/had Leukemia. One of them had her head shaved yesterday. They were all really pleasant teens with tender hearts. One boy is on the same steroid as me and kind of scared me the way he talked about it. But I try and look at myself as an individual and that not all statistics need apply to me.

So guess what, I skipped school, (Diane and I are rebellious sometimes;)) and we went to the farmers market they had going on today! We got tons of soap, the lady selling the soap bought me this bread I'm obsessed with. So amazing of her to do for me, what a blessing. And we were able to get cherries and peaches! I have to say what I miss most about home (besides you guys) is living on an orchard with unlimited fruit. I MISS FRUIT.

Last week it was all about Guacamole, Cheese and Salt. This week it's hummus! We got 3 containers and every time we go to dinner we get one. I eat it at 9 PM every night. And my nurse is making me some! We'll see how long this one lasts. My cravings usually last a week, so we should have gotten plenty to sustain!

Soap lady who bought me bread

Hummus

Picking out cherries and peaches

It's funny here, my 2 main doctors are a Brazilian-crazy-animated-fast about everything man and an New Zealander-gorgeous-brilliant-sophisticated woman doctor who happens to be a Korean. They're the smartest, nicest, most considerate, happy people I've ever met. They listen to everything I have to say.

Then we had lunch, at first I didn't feel that hungry, but I love the veggie pizza and wraps here! So this is trip 2! I'm losing my appetite next week anyways, so why not!

Alright, shout out to my best friend Isaiah Fiso, today he is celebrating his 18th birthday. Unfortunately I'm not there, but I've set things up through trusty people like my twin. He has a football game tonight, if you go cheer extra loud for me!

He has been such a blessing in my world. I look up to him so much, for his perspective on everything. It's hard to not be home telling him all this in person, because he's definitely one of the top people in my life, who has changed it dramatically. He's helped me through everything, and now with my cancer. He is such a strong guy, I guess an adult now. But I hope one day I can be more like him.

I'm going to a sleepover tonight with a local group of young women, jokes on them when I wake up at 2 and stay awake! Usually I just watch Diane sleep or listen to the build-a-bear recording from my family & Isaiah, we'll see what I feel up to in the morning! I'm a little bit nervous because I've only met them once before. But they are really nice people, and easy to be around.

There's so many questions everyone asks, don't get me wrong, I have no problem answering them, but it's the Dr.s questions that are starting to get a bit overwhelming. Such as, do you want a port? I found out yesterday I could get one, but as for now my decision is to just do IV's. And so many hair loss questions, no,  I do not want to lose my hair, yes I'm scared, I'll think about it when I get there! And the biggest question (from everyone): How are you?

I was just diagnosed with DPIG, no one survives this thing, well a small percent do. But I prefer to look on the bright side of things. I'm doing great, I will have bad days. But I'm also stubbornly strong, I believe in miracles, I know God knows better, I know everything happens for a reason, I know I'm here for a purpose, and in the meantime, why make things worse for myself than they have to be!? Besides, I miss everyone so much, but I sorta love it here. I'm so bad with change, I was terrified to move here, but I haven't had a regret this entire time. I know God loves me, I see it everyday through you guys, other patients and people, Dr.'s, and God himself.

Lastly, I want you to know that I read all of your comments (MULTIPLE TIMES) before my appointments, in my free time and when I wake up at 2 in morning.  Your encouraging words inspire me and help me get through the tough spots in my day.  

I love you all soooo much!  

Rach

Settling in

Warning: Long post!!! I'm playing catch up

I think I've gotten the hang of it! I feel so comfortable and good here. Most everything works out in our benefit. I finally know my way around. The food is BEYOND amazing, the doctors are too. (I've met 1 or 2 dull ones) But everyone here is so happy. All in sad situations, but it's hard to look around and feel sorry for myself, when there's babies with scars, kids without legs, and a limited supply of hair. Most of them with bigger smiles than me. My sleeping schedule is a little off, I get temper tantrums from 3-4 AM each day, followed by hunger pains.

So I'm just going to break it out fast, like ripping off a band aid, because it's hard to tell each individual person separately.

This I found out yesterday is a very rare type of cancer. Only around 200 kids are diagnosed with it each year in the US.  There's been a few patients older than me (very few). But it's very life threatening (not very many survive) and there's really bad statistics. Fortunately, I believe I am my own statistic. I know God has a plan for me, and whatever that it is, is best. But I am going to keep living my life, after all, I have a pretty big bucket list!

Now for the happier news, we got here Sunday, and took a shuttle from the airport, to the Grizzly House. After registering and checking in, I got so tired and hungry, so Diane and I ordered pizza...

and fell asleep. Naturally, I woke up around 3:30 AM the next day, probably threw a fit about something ridiculous I don't remember, then went to the hospital! I had an IV today, for my MRI, normally I'm petrified of needles, but this one wasn't bad!

After leaving it in from 7:30 AM to 5:00 PM, we went back to the room and fell asleep.

Followed by a day full of more doctors appointments, we had really good food (as always)

And today we cut down my steroid! Not very much, but I'm being tapered off of it, which will be good, especially with this crazy appetite of mine!

Today I woke up at 4, with some anger! Fortunately, I didn't act on it! (food usually calms my nerves) My real day started at 8:30, with a CT scan, getting my mask fitted for radiation, followed by an MRI. 

We then had lunch, and then more doctors appointments. I then had speech (everything looked good!) they are just worried because I've lost my gag reflex's, and same with the sensitivity in my eyes. But these are all things, they've told me, radiation will improve.

I was supposed to start school yesterday, but somehow it keeps mysteriously being taken off of my schedule. I'm going to have to look into this.

Ironically, my most depressing moment today was with the therapist, whose there to make me feel good? I fit the "Make A Wish" profile, which I once thought would be awesome, but is starting to seem more of a final wish, at least in the way she explained it to me.

Any suggestions?

Today, I was accepted into a study, which has only positive aspects, besides the fasting and the IV from 7 AM-11 AM tomorrow morning. It's really cool, they put a protein in my body that tracks my bad cells, takes pictures, and can hopefully provide them with more information. Granted, it is a phase one study, but if it could help me, and more to come after me, no harm done.

And I got my legacy beads, so everything I do, I remember by a bead I've been given, there's already a lot.

At 5, I'm getting together with other teenagers in the area (religiously) so we'll see how that goes! I'm nervous because I'm so used to my friends and family, but maybe it's time to branch out!

Last but not least, thank you guys so much for the support, I want you to know I read each comment, (so even though I'm not the best at responding, know I care and appreciate everything so much!)

I couldn't get through this, without supporters like you guys. 

Love You All So Much!

Rachel

Address!

I think we finally got my temporary address things can be sent to:)

Rachel Stratton
St. Jude Children's Research Hospital
262 Danny Thomas Place
Memphis, TN 38105-3678

Jordyn and Rachel Forever

(Rachel-Blue, Jordyn-Pink)

Good morning! After a long day yesterday, and school starting today I thought I might just post this picture of me and my twin Jordyn, this is us on our first day of Kindergarten. This will be the first time ever we aren't starting school together today. I miss you, I LOVE YOU! Have fun at school today!
Anyways, I know you start school at 7:45-ish, I start at 3, so in spirit we're still together! GOOD LUCK! Senior Year!

Week one!

Week one is finally over! (longest week of my life) I was supposed to start treatment yesterday at noon, but am going with the St. Judes route instead.

Today was a great day. I woke up at 4, my steroids do that to me! I laid in bed for a while, until I could convince myself to get ready for senior pictures, (figures they would be taken the first day my face puffed up!) Then for lunch, some of my siblings and Diane (mom) went and met an awesome friend (Pam) at the cheesecake factory. If I survive this brain cancer I'm eating there EVERY DAY! Things we ordered: (I know I'm going to spell all of this wrong,) Fried mac and cheese, avacado egg rolls, crisp chicken costelletta, southwest egrolls, four cheese pasta, chicken nachos, chocolate tuxedo cheesecake, dulce de leche cheese cake, reeses peanut butter cheese cake, probably more but I forget! I have quite the apetite! It was so good.

We then drove home from Salt Lake, and I took a nap, when I woke up it was time for pre-region cross country! The whole team is SO supportive. My whole team had "Rachel" and "Run for Rachel" written all over their skinny little bodies. Everyone has been so incredible through all this, temper tantrums and all. It was hard to see everyone running except for me, but at the same time it was a blessing because it was blazing hot outside, and I hate pre-race nerves! And also after I was told I was most people's inspiration, so to me I was there running it with them. In a less painful way.

This whole experience has frightened me, but I am pleased to say that in the last 2 days, I have felt so good and unafraid, (we'll see how long that lasts.)

That's all for now!

August 19th

Alright, so I'm currently at the air port. And I thought I may as well. These last 2 days have been the hardest of my life but I've also been so supported. Everyone is so kind, and I can't wait to get back and see everyone. This whole Memphis thing is starting to freak me out. I'm really bad at handling change, maybe that's what I'm supposed to be learning. This is going to be hard, but I'm going to try my hardest to be strong and happy.

My flight leaves in a couple of minutes. So maybe I'll write when I land, or whenever I feel like it. I miss my family and friends so much, it's been all of a half hour! HERE WE GO!