1 Year

I can't believe it's been a year since we visited the ER with Kaelyn only to leave the hospital 7 hours later to pack up and head for Salt Lake to begin our journey in getting rid of her cancer. It actually seems like much longer than a year ago that all of this began.

Today, Kaelyn is practically back to herself.  We had her 6 month scans a couple of weeks ago which came back completely normal (Well, she was missing a kidney, so mostly normal). 6 months off of chemotherapy means we could stop the weekly antibiotics since her immune system is back in business. The only remaining side effect we are dealing with now are the effects of some of the peripheral neuropathy. She has not fully recovered, leaving her ankles less flexible than they should be. This causes her to easily lose her balance, and she is tripping all the time! The doc ordered physical therapy to get her ankles back to normal so we are currently working on some exercises that will help. So really, life couldn't be better. We are so blessed.

Kaelyn's most recent doctor's visit was a bittersweet appointment for us. Though we received such wonderful news as far as the health of our daughter is concerned, we also found out a sweet little friend of Kaelyn's, just a year older, had just received some bad news. A brave little 5 year old who has been fighting cancer for 4-1/2 years has just found his cancer has spread to numerous parts of his brain and is dying. This has been a very emotional time for me. It's difficult for me to understand why we were dealt the hand we were, given a cancer with therapy that has a high success rate, and this little boy and his family have it so differently. I have a testimony of our Father in Heaven's Plan for us, and I know that my mortal brain cannot comprehend his purposes. I'm grateful to know that this child will have the opportunity to be with his family again, to continue being raised by his wonderful parents. I'm grateful to know that he will be freed of his pain and suffering. I'm just sad that those of us staying behind, most especially his family, will not have the joy of his presence for the rest of our lives on earth.

There is so much tragedy all around us which continually leaves me feeling blessed and grateful for all that I have. This experienced has opened my eyes, and my heart, and I am grateful for it. Here's to the next year staying free of cancer!

Wish Granted

Before you decide to get into this huge post, know that you will be faced with a gazillion pictures. You've been warned.

DAY 1 - Travel
On January 8 we jumped on an itty bitty airplane to begin to Kaelyn's Wish Trip! It seemed like so long ago that these plans were being made, and now the time had come. We were all SO excited to spend some time in warm, sunny, Disney World!

Kaelyn was so excited to get to ride in an airplane. The Make A Wish Foundation sent a letter with us to give to the crew and they invited Kaelyn up to the cabin after our first flight! When I asked if she wanted to meet the pilots, she said "Arrgh matey!"

Isaac wasn't as big of a fan of riding airplanes as Kaelyn. All the noises and bumps had him freaked out, but luckily he didn't have anymore flights to catch because we dropped him off with family on our layover in SLC. You may be thinking, "Oh, how sad they didn't bring him along." No, actually, how glad. He's in one of those stages... :)

After 3 layovers and 4 planes we finally arrived in Orlando at midnight. Of course with all those layovers we had a lost bag, so we didn't get out of the airport until about 1, and with my poor navigation abilities we didn't get to Give Kids The World Village until 2. I guess that means I should be posting this part on Day 2!

When we arrived there was a hot meal waiting for us and lots of gifts for Kaelyn! She was pretty spoiled!

DAY 2 - Magic Kingdom

Before heading out to Disney World, we had Breakfast at the Gingerbread House and went for a horseback ride. Kaelyn loves horses!

Gingerbread House at GKTW

Insta-best-princess-friend on the ferry into the Magic Kingdom

First day of meeting Disney characters and princesses was so much fun for Kaelyn! Wish kids get to go straight to the front of the line. I felt a little bad, but also pretty thankful we didn't have to wait 40 minutes to see each character. Make A Wish kids get very special treatment from Disney, and we definitely felt the love. Crew members knew right away that Kaelyn was a wish child by the button she is wearing in all the pictures.

One crew member spotted us just as we walked in and walked us to each of the characters. She really made  our moments at Disney World special. Brock pointed out the Disney character pins she had hanging from her belt and asked about them. She showed the pins to Kaelyn and they talked about all the characters. After she showed us to where we could meet Snow White (obviously Kaelyn's favorite). After meeting snow white, this crew member, Shereese, came back with a lanyard with pins for Kaelyn! That was a gift from her alone, not Disney! And those pins are at least 6 bucks each. I couldn't believe she did that! I mean, she has to see a lot of Wish kids. We were so grateful. After this she showed us to where we could find Mickey Mouse, and we said goodbye. When we were leaving the building Mickey Mouse was in, another crew member approached Kaelyn and said "Are you Kaelyn? Tinker Bell just stopped by and asked that I give this to you!" It was a Tinker Bell pin for her lanyard. Seriously I was so impressed and grateful that these people really did care about what they do. This was probably my favorite experience of our whole trip!

Shereese is the awesome crew member in the background of this pic. So glad we have a picture of her :)

The rest of our day was filled with rides. We were scheduled to have dinner with the Princesses that night and Kaelyn got to have the first dance with Prince Charming. Thankfully she has some killer moves. It was a good ending to our first day at Disney World!

DAY 3 - Universal Studios / Christmas

Before heading out, Kaelyn and I spent some time at GKTW white Brock went searching for shorts! It was around 84 every day we were there. So nice! Anyway, while waiting we rode the train, played the free arcade games and rode the free car rides, went for a few rounds on the carousel, met Mickey and Belle, and ate some free ice cream.

The Wizarding World of Harry Potter was awesome! Kaelyn picked Hermione's wand from Olivander's. Kaelyn also loved the Dr. Seuss portion of the park. Lots of rides just her size!

After Universal we headed back to GKTW to celebrate Christmas!!

Winter Wonderland! GKTW celebrates Christmas each week. Kaelyn got to see Santa, pick a gift out of his bag, see snow in Florida, and make Christmas crafts. The big bunny is Mayor Clayton, the GKTW mascot.

Kaelyn got to see her favorite volunteer one last time this night. She came all the way from 

England to volunteer!

Day 4 - Animal Kingdom

It was a blast! Except we had to escape "A Bug's Life" before Hopper got us. Kaelyn did not like that!

Day 5 - Sea World

I love Sea World! We had lots of fun here too. Another gift to Make A Wish kids is to feed the dolphins! So the first 30 seconds we were with the dolphins I tossed in a fish and the dolphin spit water directly in Kaelyn's face! It was the funniest thing ever, but of course after that she wanted nothing to do with them! She just kept spitting and wiping her tongue trying to get that yucky salt water out!

We went horseback riding again before we left, and ended the night with a "Dive In Movie," (swimming and The Little Mermaid) and a yummy BBQ. It sure felt like summertime! There was some kind of balloon convention in town and they donated thousands of balloon to GKTW. Kaelyn has her parrot and bulldog here. She also had a Jasmine balloon and a snail. They had everything!

Day 6 - Last Day :(  Back to Magic Kingdom!

We had a few more characters to meet, most importantly Minnie Mouse, Kaelyn's favorite.

We had a great last day. We had a great entire trip! We are so thankful for the Make-A-Wish Foundation, Give Kids The World Resort and volunteers, and Disney and the other parks for making this trip so special!

We left this wonderful place early the next morning and froze our buns off once we were home!! It was so good to have Isaac back with us. We are back to life as we know it!

Late Update

I'm sorry for not updating sooner! Again, it's only because there has been nothing bad to report, which I like! Kaelyn had her first MRI and set of x-rays following her completion of chemotherapy treatment on November 19 with great results: no cancer! So we proceeded to the next step of having her port removed the following week. I have mixed feelings about this! Kaelyn has to continue to have blood work, x-rays, and ultrasounds every 3 months this year and blood work will be a nightmare without the port. She fights and kicks and screams and it takes many tries to finally get her accessed. I have talked to others who have said their doctors left their child's port in for a year following chemo just to make things easier, and in the event the cancer returns, that leaves one less surgery. It is what it is though, and we'll get through it. There are worse things!

MRI prep.

I didn't think the chemo had too much of an effect on Kaelyn, but recently I am noticing that she has a better appetite and has more energy (in other words, she doesn't want naps anymore... mixed feelings there!).  She is so excited that her hair is growing back, and she tells me this every day. I personally enjoyed not having to wake her up earlier on Sundays to do her hair! I'm going to have to learn all over again as I have been out of practice.

Post port removal.

Finishing up chemo treatment has been more of a transition than I imagined. There wasn't an instant relief like I expected. I actually feel more stressed now than I did while she was getting treatment. I think there is just this constant lingering thought of "what if it comes back?", and for some reason I'm having a hard time shaking that. It's always on my mind. I know I've talked about it before, that her chances are pretty low of recurrence, but it still bothers me. I just have to remember to take it one day at a time and worry about my family's lives today, not what will be going on in a year.

            And, Disney World in 35 days! No snow there!

Stone cold biker.

Gratitude

This is what I have been feeling more than anything lately. We have been so blessed, and I don't even know where to begin to show how grateful I am. A "thank you" is such an understatement for the way we feel about the help and prayers offered by those around us. Friends, family, neighbors, and people we don't even know, have truly given us so much more than we deserve.  I do feel that Kaelyn deserves these things, but as her parents, I don't know that we do? The help we have received financially has certainly lightened our load and allowed us to put more of our concern on our children as opposed to overwhelming our minds with questions and the stress of how to pay for this medical help.  So to all of those who have contributed in any way, thank you.  The help we have received with friends and neighbors being able to watch Isaac at the last minute when we have to run to the doctor unexpectedly has been amazing.  It is hard not being near family at a time like this, let alone being still somewhat new to the area we are in.  We are so grateful to all who have offered to watch Isaac and who have dropped their plans to help us out.  Thank you.  The help we have received from thoughts, and most especially prayer, has been astounding.  If you told me a year ago that I would be going through something of this magnitude, I would have imagined myself as a huge, emotional, stress case.  That has certainly not been the case, and I attribute the strength and faith I have felt to the many prayers coming our way.  Also, Kaelyn has done very well with her treatment and has handled being cooped up in the house or being sick very well.  Thanks to everyone who has thought of Kaelyn and expressed your love and friendship in so many different ways. I know Kaelyn has felt of your love and she has become a better, more loving child through all of this.

And she's really cool. Look at that hair growing in!!

Last Round of Chemo - Party Time!

Yesterday was such a long day. An extremely good long day, though.  The last couple of weeks I've been able to spend some one-on-one time with Kaelyn as we've had to spend more time at the doctor's office.  Because her counts have been low, we have first had to go in to the office to see if her neutrophils were high enough for her to get chemotherapy.  So, we would head in and have some blood drawn, grab some breakfast in the cafeteria while waiting for lab results, head back to the office to play with the awesome Hematology/Oncology toys, and then wait for the chemotherapy drugs to be made up if the labs looked good (They don't want to get the drugs ready if they don't know for sure Kaelyn will be taking them because they are so expensive, i.e. $2500 for 1 syringe of dactinomycin. Thank heavens for insurance!, and they expire very quickly).  Yesterday we followed this same procedure.  Anyway, because we have been in the office longer lately, I've found babysitters for Isaac the past couple of weeks.  Thus, I've had more time to hang out with Kaelyn since I have been spending less time chasing after Isaac and preventing mass destruction! (I do love that boy) I was extremely grateful that Kaelyn's neutrophils were high enough for her to finish off her prescribed 25 weeks of chemotherapy!  And to top it off, we were able to celebrate this milestone with a VERY special night for Kaelyn at Texas Roadhouse.  And believe me, they went way out of their way to make it special.

Kaelyn and Sophia learning the art of line dancing.

 Kaelyn had such a fun time dancing.  Sadly this was all I caught since my SD card was full!

Our Texas Roadhouse experience was pretty amazing.  It all started when a friend from our playgroup set up a fundraiser with Texas Roadhouse, where they would donate 5% of all the proceeds for Kaelyn's medical bills. What a great friend, and what a great restaurant! Texas Roadhouse took this opportunity and ran with it, and did WAY more than I would have imagined they would do.  They advertised all over Billings, putting up signs and handing out flyers.  They made announcements at the local Hockey games and as well as on the local news and in the newspaper. Old Navy and Papa Murphy's even participated by handing out flyers to all of their customers for us.  What a great community!  When it came time for "Kaelyn's Night," we were all so excited! We walked in to Texas Roadhouse which was decorated with balloons and tons of pictures of Kaelyn.  Most of the workers were waiting at the door to meet and greet Kaelyn, and they all had such big smiles on their faces. The place was already hopping at 5 o'clock on a Tuesday night.  We got to our reserved table and enjoyed a wonderful meal and our kids were spoiled with gifts.  I mean SPOILED!  A lot of people we had never met before stopped at our table to meet Kaelyn, and of course they loved her.  Our server was such a nice guy.  Really the entire staff was just so nice, and we are especially grateful for the manager who arranged it all and made it into such a big party!  My favorite part of the entire night was each time a certain song came on the staff would do a little line dance.  Kaelyn jumped down from the booth and danced with them and really had such a fun time. I couldn't have asked for a better way to celebrate her last day of chemo, we just wish more of our friends, and especially family, could have been there with us.

Kaelyn being ridiculously spoiled, but sharing with her brother.

Rikki presenting Kaelyn with a gift card for a mani-pedi.

Thanks to everyone who came out to Texas Roadhouse to celebrate with us! We had a great time and we appreciate everyone's support. And thank you to everyone at Texas Roadhouse for making Kaelyn's night so special!

Kids n' Cowboys

(Before I get in to this, I just wanted to follow up on my last post.  Kaelyn was not able to get her chemo last Tuesday as her neutrophil count was too low, so we will be trying again tomorrow!)

Several months ago I got a call from the man in charge of Kids n' Cowboys, inviting Kaelyn and her family to come to this event.  We have been so excited to go since we got this phone call!  Kids n' Cowboys is a special day for kids in the Montana area undergoing cancer treatment.  The event included riding horses, getting to tour a fire truck, meeting rodeo queens and rodeo clowns, a delicious dinner, spectacular prizes, and all followed by reserved seats at Billings biggest rodeo of the year (and indoor, to top that off!).  Needless to say, we had a blast, especially Kaelyn.  We went out to a local cowboy store the night before so Kaelyn could pick out a cowgirl hat.  She loves it! She put the hat on and ran around the store yelling "Yeehaw!"  It was pretty cute. 

The rodeo queens sure liked Kaelyn. I'm thinking it was because of her hat.

We hit the fairgrounds Saturday afternoon and started off with horse riding. Kaelyn had been talking about this forever, but once she saw how big a horse was close up she wasn't so sure she wanted to get on anymore!  But, lucky for me, she was willing to ride as long as I was up there with her.  After we got up, and she relaxed a little, she started yelling "Yeehaw horsey!"  She eventually did ride by herself too, but sadly we didn't catch that on camera. 

Kaelyn riding Wealthy, a gentle giant. Kaelyn loved the fire truck too.  And the fireman, of course.

We sat by the Martin's for dinner, a little family who's oldest boy, Gavin, has been doing chemo for 4 years now, starting when he was 9 months.  He is such a cute boy and he and Kaelyn love playing together.  Following dinner there was a drawing for some pretty big prizes.  There were iPods, $100 gift cards, bikes, Hot Wheels 4 wheelers, and belt buckles.  Sadly there weren't enough prizes for everyone, but Kaelyn was one of the lucky kids to have her name drawn. She was so excited and ran to the front to pick her prize.  It was between a pink bike that was way too big for her or a Cinderella-themed Hot Wheels car.  After much thought (tapping her finger on her chin and saying "hmmm," she picked the Hot Wheels car.  Spoiled girl!  She was so excited though, and we loved watching her reaction.  Afterwards Kaelyn and I hit the rodeo.  She loved it, with a little help from some cotton candy of course.

We are so grateful that there are so many people in this world who can turn something negative into something positive.  The founder of Kids n' Cowboys has a daughter who had cancer 20 years ago, and after her treatment he decided to start up this program.  What a great thing this man does every year, along with all those who help him out.

Tomorrow night is Kaelyn's Night at our local Texas Roadhouse. We are all so excited and I will post pictures of her special night in my next post.

The End is Near!

Not the end of the world.  Though I guess if the Mayan's are right that end is near too.  I'm referring to being finished with chemotherapy!  Kaelyn is scheduled for her last round in 2 days, October 16th.  There is a good chance that won't be the actual day she gets her last round though, since she has been getting more and more neutropenic with her latest doses of chemo.  Neutropenia refers to low neutrophils, one of the many types of cells that make up the white blood cells.  My brother told me a great analogy taught by one of his professors was that the neutrophils are the "marines."  Because of the build up of chemo in her system, or "defense funding cuts," her marines are low in number and her immune system isn't working so well.  So, in order to prevent any worsening or other illness it could be put off until her neutrophils recover.  The other downside of neutropenia is having an overly-cautious mother who won't let the little girl have any fun! At least not with friends, or any other people, who may have sickness they would like to spread, because that would mean another stay in the hospital, and we are quite comfortable sleeping in our own beds with no needle pokes. :) I'm really hoping her counts will be up so we can to a lot of playing with friends this coming week!

 Waiting on counts for the previous round of chemo.  

Isaac always finds something to do.

And the iPad is the main reason Kaelyn is so excited to 

go to the doctor every week.

It makes me laugh as of late how excited Kaelyn is about going to the doctor.  One way of knowing this is anytime we leave the house, she asks, in the following order, where we are going in hopes it will be one of these: 

Kaelyn:  We go to grandma's house?!

Me:  Nope.

Kaelyn:  Oh. We go to play with friends?!

Me:  No.

Kaelyn:  Oh.  Go to Kaelyn's doctor?!

Me:  No Kaelyn. We are going to pick up your medicine.

Kaelyn:  Oh! Medicine! (Because all of the sudden she likes it? I'm ok with that.)

Oh yeah, and fall is here! Or at least it was that one day last week, between the summer and winter weather days.  But who isn't excited for hot chocolate, Halloween decor, caramel apples, and winterizing your cars?!

And corn mazes! Although we didn't do the actual maze because 

there were so many other things to do. So fun!

LabER Day Weekend

We had a free week with Brock's vacation over Labor Day weekend and decided to take the opportunity to head up to Choteau to see Brock's side of the family.  Grandma Susan had just finished up her full course of chemotherapy so we were excited to spend some time with her while she had some of her energy back!  When the time came to leave Billings we were unsure about going because Isaac had a fever.  He had just had tubes put in his ears the week before and hadn't really been acting as if he was any better (still grouchy and not sleeping well).  So I took him in to the doc before we left to make sure we were good to go.  He couldn't see any infection in his ears so we decided just to go and watch his temperature.  About 30 minutes before we got to Great Falls (about 90 minutes from Choteau) we noticed Kaelyn was acting unusually tired and sad.  I jumped to the back of the van to check Isaac's temperature and he was back to normal, but Kaelyn was 103! That's pretty high for someone on chemotherapy.  In Billings, protocol is to take your child in to the Pediatric Oncology office if they have a temp over 101.  But, we weren't in Billings, and of course, by the time we saw she had a fever it was after 5 o'clock so I couldn't get a hold of Kaelyn's doctor or nurses (doesn't this stuff usually happen at the most inconvenient times?!).  Also, my reception was in and out as we drove.  Luckily I had the number of one of Kaelyn's nurses.  We stopped at Walmart in Great Falls to try to find some form of Tylenol we could get Kaelyn to take to get her fever down (she is very anti medicine!).  We had spent about 2 hours in Great Falls and still hadn't been able to reach anyone in Billings.  Her temp had come down to about 101.5 and we started to head back to the farm because we didn't know what else to do.

 Not feeling so good on the drive.

About 30 minutes into our hour drive out to the farm we finally heard back from a nurse who told us to take Kaelyn to the ER for fluids and and IV antibiotic for preventative measures.  So we headed back to Great Falls and got to the ER at about 10.  As per the oncology nurses orders over the phone, we were to go the nurses station immediately and ask for some numbing cream so they could access Kaelyn's port for the blood they would need to draw and for the IV.  Well, they insisted they needed to access blood from a site other than the port.  It ended up being a bit of a fight between us (well, Brock) and the charge nurse.  And we lost!  After 4 attempts at getting access to a vein, they finally succeeded, but Kaelyn was VERY unhappy.  We had been through getting IVs going before this so we knew it wasn't going to be good.  It was hard not to be upset about feeling like the nurses didn't listen to us, or to Kaelyn's doctor, but it was apparent that it was more important to comfort Kaelyn at the time than to be upset.  So, Kaelyn got her bag of saline and antibiotic and her temp was back to normal and we could finally head back to the farm and get some much needed sleep (it is now 3:00 a.m.).  An hour later Kaelyn wakes up puking and she's back to a fever of 102.  We headed back to the ER later that morning, after we got a little more sleep.  Low and behold when we got back to the ER the same charge nurse was working, but this time Brock put his foot down and said "you are using her port or we are leaving!"  Needless to say, they finally used her port :)

Her eye is a little droopy from the neuropathy side effects of her chemo.  The neuropathy will go away when she finished chemo, thankfully!

  

The wait in the ER on the second day was pretty interesting.  Most of the time, though, was just that, waiting, and getting lots of fluids.  We had a friendly ER neighbor.  I was trying to avoid eye contact with him because whenever I looked at him he would pull a funny face.  Now imagine, this guy is like 50.  I look over and he is sticking his tongue out at me while his thumbs are in his ears and he's wiggling his fingers!  Now that's entertainment!  Awkward entertainment though, because I didn't know what reaction to that was appropriate!  Anyway, her fever wasn't going down this time so they decided to admit her.  Long story shortened, we stayed until Sunday afternoon when her fever had finally gone down and stayed down.  So in all that time we were only able to spend a day with family in Choteau since we had to leave Monday.  We were grateful though that everything turned out OK.  The whole reason we had to stay in the hospital was just so she could be on constant fluids, have her fever monitored, and have antibiotics administered by IV every 12 hours just in case whatever was causing her fever was bacterial.

Always the best part of a hospital stay!

Thankfully we still had Labor Day to spend with family to make this trip worthwhile!  It was so nice to see everyone and for Kaelyn to get some time to play with cousins, aunts and uncles, and grandpa and grandmas!

Playing outside with family

Yep. She's a warrior!

T-Shirts! T-Shirts! Get Your T-Shirts!

We are so excited to see that so many of you want a shirt to support Kaelyn in her fight, and the many other children and families facing the challenges of childhood cancer.  They are printed in gold, the color representing childhood cancer.  These shirts started as way to show support from Kaelyn's family, but we've had a lot of requests for shirts from others.  So, here's how it's going to go.  The shirts will be available for purchase from today, September 10^th through Saturday, September 15^th.  The following week the shirts will be made and shipped to everyone.

The prices are as follows:

 Adult - $20

Men's S, M, L, XL

Women's S, M, L, XL

(all shirts are only available in crew neck)

Youth - $10

S, M, L, XL

12 months, 18 months, 24 months, 2T

If multiple shirts are purchased, the price will go down.  For 2 shirts including an adult size, the price will drop from $20 to $17.50.  For 3 or more, adult shirts drop to $15.  Child sizes remain at $10.  Just to clarify, the prices of the adult shirts drop paired with both adult and/or child sizes.

Also, the prices listed include shipping.

INSTRUCTIONS FOR PURCHASE:

-Shirt sizes and styles can be found in the sidebar to the right.
-Each shirt ordered must be added to the cart individually to ensure correct size and price.

-For adult shirts, select the appropriate option that applies to your order.  For example:

-If you are ordering 1 shirt total, select the option for "1 Men's/Women's shirt." 

-If you are ordering 2 shirts total, select the option for "1 Men's/Women's shirt + 1 other shirt," then proceed to select the second shirt.  If the second is an adult shirt, you would select the same option, "1 Men's/Women's shirt + 1 other shirt," or if the second is a youth, simply select the youth size desired. 

-If you are purchasing 3 or more shirts, an adult shirt should be purchased as "1 Men's/Women's shirt + 2 or more other shirts." Then proceed to select the remainder of the shirts individually, specifying gender (if applicable) and size.

-As you add shirts to your cart, a separate window will appear showing the totals in your cart.  If you are not finished, select continue shopping to add more.

-When you are finished, you can choose to pay with debit or credit or with your PayPal account.  You will also be asked to provide a shipping address.

-Please allow us a couple of weeks before you receive your shirts.  We will be doing 1 bulk order so the shirts will not be shipped until the week following the sale of the shirts.

For any questions regarding the purchasing process, please contact Chelsey at chelserster@gmail.com.

  

Thank you so much to everyone willing to give to help with Kaelyn's medical bills as well as to give to the Make-A-Wish Foundation.  Kaelyn's wish to visit Disney World will be fulfilled in January 2013.