RADIATION IS DONE!!

Well, Rachel finished her last radiation at 1:45 p.m. today! Hooray! After a rough start, she ended up coasting through with mild nausea and just feeling really fatigued. She has still been eating well and is packing it in before she starts chemo tomorrow.

We did end up moving to a bigger room. We are now in #4404. This is the same room we spend round two of chemo in. So in a weird sort of way, it's kind of like coming home...

We are counting down until Thursday, her bone marrow transplant day! We are optimistic that this will be the end of her leukemia. Almost 5 months ago our world was turned upside down. I found the following excerpt on another cancer mom's blog. I wanted to share it with all of you. We so appreciate all of your love, prayers, and support.

We Entered A World

We entered a world where everyone is equal, and no one is excluded. A world where we are all the same... ethnicity, language, gender, religion and social status are irrelevant. A world where our kids play bingo and everyone wins. A world where missing body parts go unnoticed and bald heads are the norm. A world where strangers go out of their way to lend a helping hand. Athletes, celebrities, musicians, beauty queens and Santa Claus come to see you, and where anything needed is just a push of a button away. This is a world where no one wants to be, yet everyone is glad they are not alone. This is life on the children’s oncology floor. This world has needles and I.V. poles, MRI’s and CT scans, ambulances and surgeries, chemotherapy, radiation, and bone marrow transplants. We all fight the same battle, each on our own battleground, and working towards the same goal; to save our children.

Found this on Cure-Childhood Cancer's- site...

Bone Marrow Transplant

Here is a video that describes the process of a Bone Marrow Transplant pretty well...For those of you like me who find it all a little complex / confusing.

The video talks about 3 different ways of transplanting Bone Marrow- Rachel will be recieving the 1st method mentioned, donor stem cells from an anonymous donor.

UPDATE: Banana's Foster

So, Rachel may have spoken a little too soon when she wrote so gleefully about her delicious upcoming dessert last night, homeade Banana's Foster... HAHA!!
I'm sure this was delicious, but probably not exactly what poor Rachel expected... :) Get Well Soon Sis! We'll go have some REAL Banana's Foster.

-Adam

It's the climb

I have decided to quote our good friend Miley Cyrus for the title of this post today. She deserves credit for all of her hard work. Hahah anyways...
Tomorrow is my last day of radiation. It's not too bad so far, although it would be a lot more pleasurable if I could receive the radiation while sitting on a couch, or even a chair. But the contraption of choice seems to be a bike seat. And then I put my hands on these bars to the side of me. (I know it is sounding like a bike but the only thing bike about it is the seat) apparently I am a little on the taller side, and the machine is not made for people of my Height. So I have to slightly bend my legs making it almost like a 15 minute wall-sit with my not so toned legs. Then everyone leaves the room (apparently radiation isn't so good for you) it's just the tough ones like me that can handle it :P so moral of this story is RADIATION: not a fan.

I am holding up ok though. I have only gotten sick a few times, I have been pretty tired but doing good overall. Not really looking forward for the chemo on Monday and Tuesday. The kitchen claims they will bend over backwards for bone marrow patients because their diets are pretty strict and specific. Tonight for dinner I ordered prime rib (which they unfortunately did not have, but I allowed them to replace it with steak) and a baked potato, with green beans. I think I will order bananas foster for dessert tonight. I gotta take advantAge of the time my body actually feels like eating before they pump the poison into me. Not to scare anyone, I just refer to chemo as "the poison". Well, there's my update. I still got a ways to go but I am getting closer every day. Thanks so much for all of your prayers, I can certainly feel their effect in my life. Until next time..

Rachel

For anyone who has not heard the song "The Climb" by Rachel's "good friend" Miley, click play below to hear the song and see the music video.

Same...only Different

Sorry it has been so long since we posted! It's amazing how time flies when you're having fun--at home! This morning bright and early (5 a.m.) we loaded up the car and headed back to Primary Children's. It is amazing how much traffic there is on I-15 that time of the day. We were thankful the roads were dry and not snowy--unlike yesterday.

We are on the same unit, different room. Our new hangout is Room 4414. We were thrilled to see that they had found one of the few "long" beds so that Rachel's legs don't hang out the end of the bed! We have the same sweet nurses that we've had the last 4 months, but different doctors. Instead of being under the care of the Oncology team, we are now under the care of the Bone Marrow Transplant team. Rachel is right now having her first of 8 radiation treatments over the next four days. They drive us up to the Huntsman Cancer Institute twice a day through Sunday. Then she beings two days of intense chemo to wipe out her marrow. She then gets one day of rest--Hallelujah!! On Thursday, November 4th, she will receive her bone marrow transplant. It will be very similar to a blood transfusion--she will lie in her bed and a bag of the donor's marrow cells will hang on her IV pole and infuse into her central line over an hour or two. Here at the hospital they call that your new "Birthday" since you are getting a whole new immune system and blood type and new bone marrow.

Following the transplant, all kinds of scary things can happen. Mouth sores are horrific, the risk of infection is really high, and her new marrow can attack her organs since it doesn't recognize them. They will put her on anti-rejection meds to minimize this. As one of her doctors said, "We bring you to the brink of death and then rescue you."

Post transplant she has all kinds of dietary restrictions. She won't be able to have any outside food brought in. Goodbye to Chili's, Pizza Hut etc. So if you want to bake her cookies or other homemade treats, please wait until we are back home again. She can still have candy bars etc. We just hope she has an appetite for anything with all that her body will be experiencing.


I think Rachel is excited and scared at the same time. She has the same disease, different treatment. She is hopeful that after the next few weeks of waiting for the new marrow to engraft into her body, she will be free of leukemia. We are all hoping and praying for that! We appreciate all of your love and support. We have seen so many acts of kindness done in Rachel's behalf. We are the same family, but we have a very different perspective on life and what is most important. Thanks for easing our burdens and sharing this journey with us.

--Marie

H A P P Y 1 7 th B I R T H D A Y R A C H E L ! ! !

HOORAY FOR HOODED SWEATSHIRTS

We've been enjoying our time at home this week and decided we'd better update the blog...since it's been awhile! Rachel has enjoyed the freedom of no "IV Pole" tagging along beside her everywhere she goes. She is still on one IV anti-fungal medicine, but luckily it's only once a day. She's also enjoying the "expanded" cable we have at home. Love that hospital cable, but after watching some of the same movies for 3 months, it's time to move on!!

We had a busy day at the Bone Marrow clinic at Primary's today. They started with a pulmonary function test, a fancy name for seeing how strong her lungs are. They also drew 17 different blood samples...thank goodness for her central line so she didn't have to get poked a billion times! Good news is her ANC (absolute neutrophil count) was 1200 today! Hooray! It's still not much of an immune system, but it's much better than it's been!

Then we went down to RTU for a bone marrow aspiration. Waking up from that wasn't so great this time. The anesthesia leaves a feeling/taste in her throat that literally gags her until she throws up! So her pink bucket became her best friend for the afternoon. She's feeling better tonight though and even ate dinner with us.

I have to share a crazy thing that happened the other night at the BYU women's volleyball game. Rachel was wearing one of her traditional knit hats with the ear flaps. Cosmo, being the playful mascot that he is, came up from behind and pulled off her hat and ran down the aisle with it! Meanwhile, I think Rachel is having a seizure or something as I look over and she's scrunched down in her chair, trying desperately to pull her hood from her sweatshirt over her peach fuzzed head! She was ready to skin a certain cougar alive!! I'm sure he was just trying to have fun and if he ever did figure it out, I'm sure he wanted to crawl in a hole! She can laugh about it now, but you don't want to tango with a teenager who's not quite ready to model her new bald-ish doo! We keep trying to tell her bald is beautiful! But it's easy for us to say...

--Marie

Homeward Bound

My counts began to come up saturday, and continued to rise enough so that I can come home today! We're just about done packing up the room, and now I can finally get out of my cave for a couple of weeks. So yes, I am pretty excited. The estimated re-admission date is the 27. I will keep you updated,

Rachel

My Dream Dog of Choice

This is the Nova Scotia Duck Tolling Retriever.

After researching dog breeds, I fell in love with this one

and thought I would publicly declare it. It is a mid size dog

and the smallest size retriever.

They range from a light strawberry red, to a dark rich red. Aren't they just so cute?!?

MEDICATED

I am happy to say that this week has gone by very quickly. It hasn't exactly been a fantastic week, but I am hanging in there. Starting Tuesday, I began to feel some side effects of the oral chemo that I'm on. I was experiencing a headache, sore and achy body, and just some sores in some areas. Another wonderful side effect is joint pain, which has done a pretty good job of making me feel like a 90 year old woman. So the doctors finally convinced me to go on a PCA, which is like a morphine drip that I can access with a button whenever I need more. (don't worry they still have control over how much you are taking). But Tuesday night was extremely miserable, due to the fact that the morphine dose wasn't high enough,and was not touching my pain. To make a long story short, they have raised the dose, and gave me some other good things that make all the side effects a little better. As you can expect, all the medicine makes me very tired and somewhat loopy, but I will take that over pain any day.

Just thought I would give you a quick little update. Today, things are looking brighter. Any little bit of relief makes me appreciate feeling good that much more. Counts are still at zero, but hopefully that will change soon. Also, I am gaining back my weight that I have lost over the course of time. HOLLA! Now to regain my muscles. Although I think I will wait until I no longer feel like a cripple. That's all for now! Thanks for all the prayers and support, they are what get me through the day.

Rachel

This Week

Tomorrow is the three week mark for this round. Counts are still at zero, but we are hoping to see them come up sometime soon. Cross your fingers. I have been confined to my room for quite some time now, but we were able to talk one of the doctors into letting me walk out to the patio on the 3rd floor at 10:30 last night. So I put on my mask and Emily and I ventured out of the room for the first time in a couple weeks. We hit up the vending machines on the way out, and I got my now and laters (a necessity) and then we went down to the patio. It was the first time I had been outside in 3 weeks, so I felt pretty special haha. We also watched Diary of a Wimpy Kid last night, which I highly recommend. Thanks to everyone who has come to visit and has been following the blog, it's been great. I really appreciate all that is being done for me! Signing out--

Rachel

Here is a picture of Rachel and her little friend Cami, who was mentioned in the previous post. What a CUTIE!

Thanks to kissesforcami.com for the photo! Check out her blog to read Cami's inspiring story.

WHERE DID THE SUMMER GO?

I realized this week that there's a nip in the air, the leaves are turning colors in the mountains, and all the Halloween stuff is looking picked over in the stores (meaning it's been there awhile already!) The last few months have been kind of a blur and as I turned the calendar to October this morning, I realized that at the end of this month, Rachel will begin her bone marrow transplant!

We are now on day 19 of her 3rd round of chemo. I think most of you know that this has been her toughest round so far. Even though her chemo regimen was only 5 days, it really was tough on her body. She developed a skin rash on her face, arms, and legs which is now peeling like a sunburn. Last Monday she woke up with a high fever and chills. They started her on 3 new antibiotics and 2 anti-fungal medicines. Her blood pressure was doing some funky stuff too. It was a bit scary, but by the end of the day--thanks to many doctors and nurses working hard--the fever was gone, blood pressure was normal, and all she had left was a head ache.

Her cousin, Melissa, started a post card/cards/letters campaign for Rachel. So lately she's been hearing from people all over the world! So far she's heard from people in Iowa, Georgia, Utah, Austria, Norway, England, Alaska--just to name a few! Thanks Missy for keeping us connected!

Yesterday her new friend, Cami, and her mom, Chelsea, came to visit! Five-year-old Cami was diagnosed with leukemia (ALL) a month after Rachel. It was so fun to visit with them! Both of these girls not only have a common disease, they both have lots of spunk and a sense of humor! We laughed a lot, ate cupcakes, and enjoyed just being together.

We are so blessed to have family, friends (both old and new), and our community supporting us during this journey. One of our anonymous friends sent a package to Rach this week. Amongst the treasures inside was a beautiful quote by Ralph Waldo Emerson:

"When it's darkest, men see stars."

How true that is...

---Marie