tag:blogger.com,1999:blog-41622661165172476872024-03-13T11:59:07.577-06:00Caskey CrewBrock, Chelsey and KaelynCaskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.comBlogger65125tag:blogger.com,1999:blog-4162266116517247687.post-33860888019296537462013-05-22T19:56:00.003-06:002013-05-22T19:56:45.737-06:001 YearI 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.<br />
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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.<br />
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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.<br />
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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!<br />
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Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com4tag:blogger.com,1999:blog-4162266116517247687.post-73186224470502194602013-01-26T22:09:00.001-07:002013-01-26T22:09:17.056-07:00Wish GrantedBefore you decide to get into this huge post, know that you will be faced with a gazillion pictures. You've been warned.<br />
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DAY 1 - Travel<br />
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!<br />
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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!"<br />
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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... :)<br />
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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!<br />
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When we arrived there was a hot meal waiting for us and lots of gifts for Kaelyn! She was pretty spoiled!<br />
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DAY 2 - Magic Kingdom<br />
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Before heading out to Disney World, we had Breakfast at the Gingerbread House and went for a horseback ride. Kaelyn loves horses!<br />
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Gingerbread House at GKTW</div>
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Insta-best-princess-friend on the ferry into the Magic Kingdom</div>
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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.</div>
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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!</div>
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Shereese is the awesome crew member in the background of this pic. So glad we have a picture of her :)</div>
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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!</div>
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DAY 3 - Universal Studios / Christmas<br />
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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.<br />
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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!<br />
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After Universal we headed back to GKTW to celebrate Christmas!!</div>
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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.</div>
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Kaelyn got to see her favorite volunteer one last time this night. She came all the way from </div>
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England to volunteer!</div>
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Day 4 - Animal Kingdom<br />
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It was a blast! Except we had to escape "A Bug's Life" before Hopper got us. Kaelyn did not like that!<br />
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Day 5 - Sea World</div>
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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!</div>
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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!</div>
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Day 6 - Last Day :( Back to Magic Kingdom!</div>
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We had a few more characters to meet, most importantly Minnie Mouse, Kaelyn's favorite.</div>
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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!<br />
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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!</div>
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Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com7tag:blogger.com,1999:blog-4162266116517247687.post-90766374266018173302012-12-04T22:21:00.000-07:002012-12-04T22:21:07.407-07:00Late Update<br />
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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!</div>
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MRI prep.</div>
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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.</div>
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Post port removal.</div>
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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.</div>
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And, Disney
World in 35 days! No snow there!</div>
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Stone cold biker.</div>
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Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com1tag:blogger.com,1999:blog-4162266116517247687.post-17419947169309759492012-11-09T19:28:00.001-07:002012-11-09T19:28:18.309-07:00Gratitude<br />
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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.</div>
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And she's really cool. Look at that hair growing in!!</div>
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Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com3tag:blogger.com,1999:blog-4162266116517247687.post-7150596205205128232012-10-24T22:44:00.002-06:002012-10-24T22:46:28.310-06:00Last 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.<br />
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Kaelyn and Sophia learning the art of line dancing.</div>
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Kaelyn had such a fun time dancing. Sadly this was all I caught since my SD card was full!</div>
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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 <st1:city w:st="on">Billings</st1:city>, 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.</div>
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Kaelyn being ridiculously spoiled, but sharing with her brother.</div>
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Rikki presenting Kaelyn with a gift card for a mani-pedi.</div>
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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!</div>
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Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com4tag:blogger.com,1999:blog-4162266116517247687.post-49215101114343488012012-10-22T19:40:00.004-06:002012-10-22T19:41:06.211-06:00Kids n' Cowboys<br />
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(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!)</div>
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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 <st1:state w:st="on">Montana</st1:state>
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. </div>
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The rodeo queens sure liked Kaelyn. I'm thinking it was because of her hat.</div>
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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. </div>
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<span style="text-align: center;">Kaelyn riding Wealthy, a gentle giant. Kaelyn loved the fire truck too.</span><span style="text-align: center;"> </span><span style="text-align: center;">And the fireman, of course.</span></div>
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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.</div>
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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.</div>
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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.</div>
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Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com1tag:blogger.com,1999:blog-4162266116517247687.post-41031331054469548952012-10-14T23:16:00.005-06:002012-10-14T23:16:52.706-06:00The 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!<br />
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Waiting on counts for the previous round of chemo. </div>
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Isaac always finds something to do.</div>
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And the iPad is the main reason Kaelyn is so excited to </div>
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go to the doctor every week.</div>
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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: </div>
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Kaelyn: We go to grandma's house?!</div>
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Me: Nope.</div>
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Kaelyn: Oh. We go to play with friends?!</div>
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Me: No.</div>
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Kaelyn: Oh. Go to Kaelyn's doctor?!</div>
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Me: No Kaelyn. We are going to pick up your medicine.</div>
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Kaelyn: Oh! Medicine! (Because all of the sudden she likes it? I'm ok with that.)</div>
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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?!</div>
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And corn mazes! Although we didn't do the actual maze because </div>
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there were so many other things to do. So fun!</div>
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Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com4tag:blogger.com,1999:blog-4162266116517247687.post-48233221349950976902012-09-23T16:00:00.001-06:002012-09-23T16:04:23.795-06:00LabER Day WeekendWe 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.<br />
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Not feeling so good on the drive.</div>
<br />
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 :)<br />
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Her eye is a little droopy from the neuropathy side effects of her chemo. The neuropathy will go away when she finished chemo, thankfully!</div>
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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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ89BI0gLI8823SlesXrZOJTVbuLyQPwK08O_KvLKhWZDlrLCMfnhIOJ32NcGo9xS3_Z0UXKlcNfivDvKtG0MsJHfhLh5keyJO4AOUDGU5fYmiKmrvZ_DtdLyVBQ6fIhM6mhwDyEJdrpI/s1600/DSC_0462.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ89BI0gLI8823SlesXrZOJTVbuLyQPwK08O_KvLKhWZDlrLCMfnhIOJ32NcGo9xS3_Z0UXKlcNfivDvKtG0MsJHfhLh5keyJO4AOUDGU5fYmiKmrvZ_DtdLyVBQ6fIhM6mhwDyEJdrpI/s400/DSC_0462.JPG" width="265" /></a></div>
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Always the best part of a hospital stay!</div>
<br />
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!<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5eJQ-O0S2E_SGhNo2eHKTkIyI7b6B7A_aNHTKifMoAyD9QbLTx2-Uil5pw-nSzSqgAui54wTDgoRBhevKjKDpiuhNfBGKou4pbA1K9imMDtLcfZfPLr9n6Xvd4l1MvxU_5C_RFT114qQ/s1600/DSC_0573.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5eJQ-O0S2E_SGhNo2eHKTkIyI7b6B7A_aNHTKifMoAyD9QbLTx2-Uil5pw-nSzSqgAui54wTDgoRBhevKjKDpiuhNfBGKou4pbA1K9imMDtLcfZfPLr9n6Xvd4l1MvxU_5C_RFT114qQ/s400/DSC_0573.JPG" width="400" /></a></div>
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</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC6mpZuUigcplJZxotDgGyhG37LhoHuXpnC7mRJhXgXJCVKdOTqUi7l39AQ-o-IP4t_8DxHDNifyZNZDMuCX5ePaBcaRmwYLDs0kI29ghMOL-o_cFZJglKAgYK14Yx0CibKwWGzrXXam4/s1600/DSC_0539.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC6mpZuUigcplJZxotDgGyhG37LhoHuXpnC7mRJhXgXJCVKdOTqUi7l39AQ-o-IP4t_8DxHDNifyZNZDMuCX5ePaBcaRmwYLDs0kI29ghMOL-o_cFZJglKAgYK14Yx0CibKwWGzrXXam4/s400/DSC_0539.JPG" width="400" /></a></div>
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Playing outside with family</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiggGS8hw1bEm-9-eWmd1HJqhf_xihMBc4R957bzImxGwbioFyT3GkGw24Z9rWANWzBtuau59bgVsyyHnQuE_LRRIPlyZzheWmyesjoLxrwtSTfULUxd9X3lsBUhNkZFWuL7r5Qm-pYOOM/s1600/DSC_0512.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiggGS8hw1bEm-9-eWmd1HJqhf_xihMBc4R957bzImxGwbioFyT3GkGw24Z9rWANWzBtuau59bgVsyyHnQuE_LRRIPlyZzheWmyesjoLxrwtSTfULUxd9X3lsBUhNkZFWuL7r5Qm-pYOOM/s400/DSC_0512.JPG" width="400" /></a></div>
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Yep. She's a warrior!</div>
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<br /></div>
Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com4tag:blogger.com,1999:blog-4162266116517247687.post-72439649341800181082012-09-10T02:27:00.003-06:002012-09-10T10:32:26.983-06:00T-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<sup>th</sup> through Saturday, September 15<sup>th</sup>. The following week the shirts will be made
and shipped to everyone.<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The prices are as follows:</div>
<div class="MsoNormal" style="text-align: center;">
<o:p> </o:p><span style="text-align: center;">Adult - $20</span></div>
<div class="MsoNormal" style="text-align: center;">
Men's S, M, L, XL</div>
<div class="MsoNormal" style="text-align: center;">
Women's S, M, L, XL</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
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</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnxcYKQSTTqi87Fcz80Sh-MuYd2ycjlZnv4iH64DpfIU-4JuIioPrx69sc5ahVBNFiC7pfat5pkGksMrgr1pQq7ONRzUKAom0xfuqplUxxq8fXAjhPiJknWlSGf5yknK0z8SPRlOONVlk/s1600/Desktop.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnxcYKQSTTqi87Fcz80Sh-MuYd2ycjlZnv4iH64DpfIU-4JuIioPrx69sc5ahVBNFiC7pfat5pkGksMrgr1pQq7ONRzUKAom0xfuqplUxxq8fXAjhPiJknWlSGf5yknK0z8SPRlOONVlk/s640/Desktop.jpg" width="640" /></a></div>
<div class="MsoNormal" style="text-align: center;">
(all shirts are only available in crew neck)</div>
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<br /></div>
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Youth - $10</div>
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S, M, L, XL</div>
<div class="MsoNormal" style="text-align: center;">
12 months, 18 months, 24 months, 2T</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYt0KeE0gWlJaXLyCj0kw5NCcuLR7Kkrdhvl817MSBDpIrE-N0y6caJwCeZkmxJVMb7Q5t9fPYLviLBtyKpXfvkZ1n33IB7Cj3uQmXk6bFNV7D0HouWakokUtOO_-s3HB8fN5JBDR5kFk/s1600/Recently+Updated.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYt0KeE0gWlJaXLyCj0kw5NCcuLR7Kkrdhvl817MSBDpIrE-N0y6caJwCeZkmxJVMb7Q5t9fPYLviLBtyKpXfvkZ1n33IB7Cj3uQmXk6bFNV7D0HouWakokUtOO_-s3HB8fN5JBDR5kFk/s640/Recently+Updated.jpg" width="640" /></a></div>
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</div>
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<br /></div>
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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.</div>
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<br /></div>
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Also, the prices listed include shipping.</div>
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<br /></div>
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INSTRUCTIONS FOR PURCHASE:</div>
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<br /></div>
<div class="MsoNormal">
-Shirt sizes and styles can be found in the sidebar to the right.<br />
-Each shirt ordered must be added to the cart individually to
ensure correct size and price.</div>
<div class="MsoNormal">
-For adult shirts, select the appropriate option that applies
to your order. For example:</div>
<div class="MsoNormal" style="margin-left: .5in;">
-If you are ordering 1 shirt total,
select the option for "1 Men's/Women's shirt." </div>
<div class="MsoNormal" style="margin-left: .5in;">
-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. </div>
<div class="MsoNormal" style="margin-left: .5in;">
-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.</div>
<div class="MsoNormal">
-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.</div>
<div class="MsoNormal">
-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.</div>
<div class="MsoNormal">
-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.</div>
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<br /></div>
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For any questions regarding the purchasing process, please
contact Chelsey at chelserster@gmail.com.</div>
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<o:p><br /></o:p></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIPOtFTFbdEKE6-rC7Eotxl6GpiDSdfJPoV1-DA4xyBXND7CWr7IJGPqp1VafYr4zolWPgkJ8nO5EL-s-isgVxzGwXY1LvqA9QttEWK-9h9lIj2PbmHypogXzHzXboUXyy9OxyOP_ZvnQ/s1600/IMG_20120902_142533.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIPOtFTFbdEKE6-rC7Eotxl6GpiDSdfJPoV1-DA4xyBXND7CWr7IJGPqp1VafYr4zolWPgkJ8nO5EL-s-isgVxzGwXY1LvqA9QttEWK-9h9lIj2PbmHypogXzHzXboUXyy9OxyOP_ZvnQ/s320/IMG_20120902_142533.jpg" width="320" /></a></div>
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<o:p> </o:p> </div>
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.<br />
<br />
<br />
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<img border="0" src="http://i954.photobucket.com/albums/ae22/katieolsonprice/cc/sig.png" />
</div>
Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com4tag:blogger.com,1999:blog-4162266116517247687.post-50860978205987504722012-09-06T17:30:00.000-06:002012-09-06T17:30:24.081-06:00Catching Up<br />
<div class="MsoNormal">
I suppose it's time for an update! Let's see, I last posted about Kaelyn's shaved
head. Let me say, this girl loves
it. I hope she is OK with growing her
hair back when she is done with chemo!</div>
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<br /></div>
<div class="MsoNormal">
As far as Kaelyn's health goes (side effect wise), she is
still doing really well. The last 3
treatments she has gotten sicker than usual, with a little more nausea and
vomiting and a lot of fatigue. Also, we've
really noticed the neuropathy setting in.
You can tell just by looking at Kaelyn.
You can see that her left eyelid droops a little bit. Other neuropathies that you can't see in the
picture include difficulty using her fingers and loss of balance and reflexes. For example, a couple of weeks ago we took a
trip to <st1:state w:st="on">Utah</st1:state>.
We had been holding her, and we set her
down because she wanted to see grandma. She started to run, tripped, and landed
face-first on the cement sidewalk without even attempting to catch
herself. Sadly that was when I first
realized I needed to watch her better. Since,
I've been paranoid with slides, swings, and anything else that could pose a
fall risk. But luckily we haven't had
any injuries since. Just that one nice
big bruise and scab for Durrant family pictures!</div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzR_XKYGZeCqfQRXhqSNKcOkSM12PjIzJ__zNn-pPYjCNgMZ0GtcYFb82TA33Hpcy4Rxt9TE5N3oe5rKd7s85znB91h-yRaB3Aar4JVnBXFYuTPuhs9KC5SnIz1NmYiNSAxbV8r92Ahgs/s1600/utah12.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzR_XKYGZeCqfQRXhqSNKcOkSM12PjIzJ__zNn-pPYjCNgMZ0GtcYFb82TA33Hpcy4Rxt9TE5N3oe5rKd7s85znB91h-yRaB3Aar4JVnBXFYuTPuhs9KC5SnIz1NmYiNSAxbV8r92Ahgs/s320/utah12.jpg" width="240" /></a></div>
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<br /></div>
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<br /></div>
<div class="MsoNormal">
A couple of weeks ago we had routine x-rays and ultrasounds
to make sure the cancer hadn't spread. I
can't remember the last time I felt so anxious.
Normally I don't have a difficult time going with the flow and trusting
that everything will turn out OK. I
still knew it would be OK, but I still couldn't stop thinking about the
negative possibilities. Granted, the
chance of the cancer spreading was rare.
15% chance to be exact. So why
would I be so worried about such a small number? Because rare isn't so rare anymore. You know, it's rare to have a child with
cancer, but it doesn't seem so rare to me! I know longer feel protected by anything
prefaced by "rare." To me, the
meaning of rare has changed. That's why
I was so nervous. That darn tiny possibility
was still a possibility. But again, we
are so incredibly blessed and do not have to worry about any spreading cancer this
time around! I know that will still be a
concern in the future, so hopefully I can learn to take things one day, even
one minute at a time and live my life in the present instead of wasting moments
fearing the future possibilities that are out of my control.</div>
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<br /></div>
<div class="MsoNormal">
As for Isaac, our little side note, he got tubes put in his
ears so we are hoping he will be a much happier camper and not have to worry
about any more ear pain. My kids make
cute patients. I won't deny it!</div>
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<br /></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPiP3IucIZMpsIpyUVLyduX20HseWkYg6ZHqseJ8SrWnpr7IVJOyJOlfFErw_Oe9a5D39ORdhKyDB9gRl0mSCvafd2D_hyFxlQCznSgz4Ygi3dQaB6Y_g9DBGdHbhCfPNAYo9cwNPXAHo/s1600/isaactubes.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPiP3IucIZMpsIpyUVLyduX20HseWkYg6ZHqseJ8SrWnpr7IVJOyJOlfFErw_Oe9a5D39ORdhKyDB9gRl0mSCvafd2D_hyFxlQCznSgz4Ygi3dQaB6Y_g9DBGdHbhCfPNAYo9cwNPXAHo/s320/isaactubes.jpg" width="240" /></a></div>
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<br /></div>
<div class="separator" style="clear: both; text-align: left;">
I still have more catching up to do. I'll fill you on on Kaelyn's latest hospital stay in the next post.</div>
<br />
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<img border="0" src="http://i954.photobucket.com/albums/ae22/katieolsonprice/cc/sig.png" />
</div>
Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com5tag:blogger.com,1999:blog-4162266116517247687.post-58467602330549338052012-08-07T17:05:00.001-06:002012-08-07T17:05:38.368-06:00I Don't Know Why You Say Goodbye, I Say Hello!<br />
<div class="MsoNormal">
Hello baldy! The deed
has finally been done. As sad as it was
to shave Kaelyn's head, I am actually feeling some relief today that that step
has finally been taken and is over with, and most especially that Kaelyn likes
it!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It was just yesterday when I noticed Kaelyn's hair was
coming out much faster than before. With
every stroke of her hair, tons of strands would come out. She kept getting hair in her mouth, and in her
food, and in her gum. She called that
"hair-gum." It was bothering her so much I finally decided we should
just shave it off if is annoying her and falling out anyway! So, I called a friend to borrow some clippers
and waited, and waited, and waited for Brock to get off work so we could all do
it together (except Isaac. He probably would have tried to eat the hair though,
so that was OK!). In fact, as soon as we
got home and brought the clippers inside Kaelyn said "Let's do it
mom!" Brock eventually got home and
we finally shaved it, all together! I have to say, it was kind of a fun moment.
It was breaking my heart a little, but
the fact that Kaelyn was excited about it, and liked the "tickly"
clippers, certainly helped make it easier.</div>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZpsMfJa7vxGajcxZDb-odPKHQl45aSe-X2Es8NeK8M0untgjSRGVDcWy0kPrfrvkIrp4PeE9GCmiPE4NrF_K2M9e0RwuhkcPl7fLHxl9WWnZJA7zLI91ulHYz5zeBAYFdJRk5rage49k/s1600/DSC_0955.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: right;"><img border="0" height="286" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZpsMfJa7vxGajcxZDb-odPKHQl45aSe-X2Es8NeK8M0untgjSRGVDcWy0kPrfrvkIrp4PeE9GCmiPE4NrF_K2M9e0RwuhkcPl7fLHxl9WWnZJA7zLI91ulHYz5zeBAYFdJRk5rage49k/s320/DSC_0955.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNormal">
Before the cut, I wanted Kaelyn to be prepared. I kept asking if she wanted "hair"
like Grandpa Ernie or Grandma Susan, and she said yes. I didn't know if she was quite grasping was
she was agreeing to, so I decided to pull up some pictures of another sweet
fighter of Wilm's, Kaylee. When she saw
Kaylee cute naked head she got so excited for the shave. Thanks Kaylee for your inspiration and comfort
for my daughter! And thanks to Kaylee's
mom for posting those pics.</div>
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<br /></div>
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Very first look in the mirror!</div>
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Today was our first day in public without hair atop Kaelyn's head. I was ready for just about anything, stares, looks of pity, and comments. We didn't get too much of that though. There was one boy, probably 8 years old, who came up to Kaelyn and rubbed her head. So, Kaelyn rubbed his head back. He jerked away from her, but went to rub her head again. I said "Hey! If you can rub her head she can rub yours!" Was that to defensive? I said it with a smile on my face, but in all seriousness as well! He said, "What's wrong with her. Was she born that way?" Well, although a lot of babies are born bald, I didn't go into that. I just made it quick and said her medicine made her hair fall out. And that was that! Our first experience with strangers and Kaelyn's new do.<br />
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Kaelyn continues to rub her head, Isaac hasn't noticed a
difference, and I am still catching myself forgetting she has a bald head! I know it won't take long to get used to it. And, I'm not gonna lie, I already love it!</div>
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All tuckered out from playing in the too hot sun and jumping in the overly muddy sprinkler puddles!</div>
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</div>Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com12tag:blogger.com,1999:blog-4162266116517247687.post-7951300863744248472012-08-07T15:51:00.002-06:002012-08-07T15:51:47.703-06:00Old News - Week 8<br />
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The past couple of weeks have continued to go well for
Kaelyn. She did respond with some
sickness after each of the chemotherapy sessions, but for no longer than 2
days. Each was followed by nausea and
vomiting, tiredness, and weakness. She
seems to be back to herself by day 3.
Also, Kaelyn's hair has started noticeably thinning. I noticed more hair being vacuumed up and on
Kaelyn's pillow case, but it wasn't until I mentioned to others around me that
her hair might be thinning and they replied "Yeah, I noticed," that I
really accepted it. It is just thinning
so far, and depending how I do her hair, it isn't always noticeable. Usually if I pull her hair back her receding
hair line shows as well as her widening part, but if I leave it down it isn't
really noticeable at all. So I will
continue to play this waiting game to see if we will end up shaving her
head. I wish I could get my mind off it
though! It seems like I'm constantly
monitoring her scalp, trying to determine if the thinning has slowed, or worsened. Just today I've finally been able to calm
down a little bit and try to forget about it because no matter how much I think
about it, whatever is going to happen, is going to happen! </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifvbzsytCMz9K0HH344q53AGEcD0kIMCzjH3YX6hT0RFnUcW-g7KLmJmQ7SxEm-shKUU3cB2PqSAbIIIJyzHngHJIKUY14McUf9j6AqxzKzlCiCA_CdELLtSy2WuQNFWrYt75lDDApuIw/s1600/DSC_0949.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifvbzsytCMz9K0HH344q53AGEcD0kIMCzjH3YX6hT0RFnUcW-g7KLmJmQ7SxEm-shKUU3cB2PqSAbIIIJyzHngHJIKUY14McUf9j6AqxzKzlCiCA_CdELLtSy2WuQNFWrYt75lDDApuIw/s320/DSC_0949.jpg" width="211" /></a></div>
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This pic was actually taken later than this post was written. This was when I decided it was time for a shave. See next post!</div>
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We just finished 2 weeks of swim lessons. Aside from the lack of lessons provided, and
the lack of heat in the water, I guess you could say it was fun! Every kid was crying to get out of the pool
before it was even halfway over every day!
The water was way too cold for those kids. And even worse? It was a parent and child class so I had to
get in too ;) I was sure missing that
triple digit weather at the time! But,
Kaelyn now knows how to "scoop and kick" even better than she did
before!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpxlEApdRpylPPoe6gQDe5XMHfzCcWVctnQi2d6ZecgrbPtW75BzzH1qPIdf8fArb7npim_F1PQCQH5VdfIPK2aj5z95Ws-j3GusEshkxL36cBsSZrpOrCtLulqVIvC8DtW7nx1BjwPpo/s1600/DSC_0833.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="174" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpxlEApdRpylPPoe6gQDe5XMHfzCcWVctnQi2d6ZecgrbPtW75BzzH1qPIdf8fArb7npim_F1PQCQH5VdfIPK2aj5z95Ws-j3GusEshkxL36cBsSZrpOrCtLulqVIvC8DtW7nx1BjwPpo/s320/DSC_0833.jpg" width="320" /></a></div>
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<o:p>Kaelyn mid-butterfly stroke. </o:p></div>
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As for the Make-A-Wish update, we will for sure be going to
Disney World. I have heard so many great
things about what is offered there for wish children and I'm excited for Kaelyn
to experience it. There are still a lot
of details to iron out, but the nice thing is we don't really have to worry
about any of that!</div>
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</div>Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com0tag:blogger.com,1999:blog-4162266116517247687.post-26149461457223817792012-07-20T15:09:00.001-06:002012-07-20T15:13:16.893-06:00Week 6We are officially 1/3 of the way done with chemotherapy! Well, I'm rounding up a little... we just did week 6 chemo today and we have 19 total. And, Kaelyn still has her hair! She is one lucky girl. Though, I don't really think it would have bothered her had she lost it. I know I would have been able to handle it too, but I am grateful that she has kept it so far. It is still possible that she could lose it at some random time, but we will see.<br />
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Yesterday we had a couple of Make-A-Wish volunteers stop by to visit with Kaelyn and find out what her interests might be. We filled out some paperwork while Kaelyn colored with markers. Lucky girl. I never let her use markers unless they are the Color Wonder kind! We aren't entirely sure what she will be wishing for, but I'm thinking it will end up being a Disney wish since that is what she is most familiar with right now. Disney World offers some special treatment for Make-A-Wish kids, so I'm thinking that may be where we will go. I'm so grateful that Kaelyn has this opportunity and for the volunteers and those who donate to the foundation to make this possible. These kids really deserve it. I actually read a news article last night about a dad who refused to sign off on his daughter's wish to go to Disney because she "wasn't sick enough." He said wishes should only be granted to those who have a little time left to live, to make a last memory. That is not what Make-A-Wish wants to provide for, though. Though those children would definitely be included, Make-A-Wish's purpose is to provide time away from treatment, where a child doesn't have to worry about their regular, every day life of doctor's visits, pokes, tests, and the lack of childhood! I think the Make-A-Wish foundation is so awesome and again I am so grateful for them.<br />
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Kaelyn is still doing so well. She had a mouth sore last week, which is usually due to low blood counts. Her CBC came back with normal results though, so I think it may have just been a large canker sore. Next week she receives the medication again that will potentially lower her blood counts, but so far it has never gotten low enough to cause any concern, maybe just cause a little bit of tiredness, but no immunodeficiency.<br />
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I am so grateful to everyone who has let Kaelyn and us know that they care, who have given gifts or other things to help, or who have just expressed concern or offered prayers. I don't think things could be going any better for us right now. We are truly blessed!<br />
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I hope this isn't inappropriate. This is Kaelyn's preferred clothing choice.</div>
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Showing off her new Make-A-Wish hat.</div>
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</div>Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com10tag:blogger.com,1999:blog-4162266116517247687.post-43525633986947668192012-07-02T15:53:00.004-06:002012-07-02T15:53:59.153-06:00Round 3 - Year 3<br />
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This past Thursday Kaelyn had her 3<sup>rd</sup> round of
chemo, and she is still doing great. They
said she would probably lose her hair this coming week, and if not, definitely
after she receives the dactinomycin again on Thursday. I'm still holding out hope that she won't lose
her hair, since it is possible not too! We will see though. I find myself playing with her hair all the
time, just running my fingers through it. I know in the grand scheme of things it is a
completely unimportant aspect of our lives, but I will be a little sad to see
it go. Mostly because I worry it will be
different when it grows back, and I fear it won't be as cute :) I'm sure it
will be though. At the appointment we
found out they would be upping her doses because she's back to her normal
weight since surgery. She had no trouble
getting back to where she needed to be :) As far as lab results, the only thing
that was low were her neutrophils. They
actually weren't necessarily "low," just lower than normal, and that
was a good sign because it meant the medication is working. It is likely her blood counts will be affected
more in the future and the medication builds in her system. Usually the only problems in that area with
Wilm's patients are low platelets, and possibly low RBCs, which would require a
transfusion, but that is about it.</div>
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Kaelyn's birthday was last Tuesday, and she's had a lot of
celebrating leading up to it with family visiting. She definitely got lots of presents,
including a cute sandbox for the backyard, a kid's camera, and a cute little
teepee her dad made for her that she adores. Since Brock was working for 14 hours of
Kaelyn's birthday, we just did fun things that Kaelyn wanted to do at home,
like decorated her cupcakes, played in the sprinkler, and painted with water
colors. Then we visited Brock on his
lunch and went out to Red Robin, mainly because they were the only place I
could find that still sings to customers on their birthdays! The only downside of that, Kaelyn hated
it! I don't know why, but she just
glared at all the people singing to her. It was a little embarrassing to be her mom at
that moment!</div>
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One of my favorite parts of Kaelyn's birthday was when we
got the mail. It wasn't intended to be
associated with her birthday but it did make it more special. Kaelyn got a letter from "Make a Wish Foundation"
telling her she was eligible to Make a Wish! I had always thought that these
wishes were granted for terminal children, but apparently they are for any
child with a life-threatening illness, so if you have a child in that category
you should look into referring your child, or one that you know. Rae opened the letter with me, and a bunch of
little silver confetti stars fell out of the envelope. It was so cute. I'm so grateful that she will have this
opportunity. I will tell more about how
the whole process goes in a future post.</div>
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<span style="background-color: white;">As for Isaac, he is now walking all the time and picking on
Kaelyn as much as he can.</span><span style="background-color: white;"> </span><span style="background-color: white;">Right now it
makes me laugh, but I know it won't be too long before I'll be annoyed with it.
</span><span style="background-color: white;"> </span><span style="background-color: white;">It's just funny to see how little he is
(referring to age, not size) and how he already tries to get a reaction out of
Kaelyn. </span><span style="background-color: white;"> </span><span style="background-color: white;">He mostly just like to jump on
her if she's laying down, or grab her clothes and pull on them, or take
something away from her (which she has done plenty of times to him!). </span><span style="background-color: white;"> </span><span style="background-color: white;">She screams at him and he laughs.</span><span style="background-color: white;"> </span><span style="background-color: white;">The other day Kealyn and I were laying in her
knew teepee and Isaac came in trampling us. </span><span style="background-color: white;"> </span><span style="background-color: white;">I said "Ow!" in an exaggerated,
joking way and Kaelyn got really mad at Isaac. </span><span style="background-color: white;"> </span><span style="background-color: white;">She said "Isaac, don't hurt
mom!"</span><span style="background-color: white;"> </span><span style="background-color: white;">When he did it again she said
"ISAAC – (long pause) YOU STINK!" That cracked me up. </span><span style="background-color: white;"> </span><span style="background-color: white;">She was so serious.</span><span style="background-color: white;"> </span><span style="background-color: white;">I think it was her first real insult to her
brother, so I expect more to come soon.</span><span style="background-color: white;"> </span><span style="background-color: white;">I'm
laughing now, but I'm sure that will change quickly!</span><br />
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</div>Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com5tag:blogger.com,1999:blog-4162266116517247687.post-22837909530027857612012-06-25T13:31:00.001-06:002012-06-25T13:31:13.607-06:00No News is Good NewsThat is the case for us this week! Forgive me for not updating, but there hasn't been too much to update on, which is great. As I mentioned in my last post, Kaelyn had a little trouble with nausea and vomiting following her first round of treatment. That was not the case with the second round she received Friday. I hadn't realized this at first, but only 1 of the 2 drugs will make her nauseated, and she only gets that drug (dactinomycin) every 4 weeks. So that is a plus! So as for the drug she is receiving now, I don't <i>think</i> we've seen much in side effects. I'm not entirely sure though, because it is hard to tell what may be normal for Kaelyn and what the drug may be causing, especially as far as her mood goes. She has been so SO needy! Needy, whiny, and moody. Don't get me wrong, I love the girl, but there are only a few rare moments in the day where she isn't wanting me to hold her. It's hard to know if it is a 3 year-old thing, or a reaction to the past month's events, or just feeling different with the drugs in her system. With those things in mind, I am not exactly sure how to respond. Most of the time I give in and hold her, though I try to give her other options of things to do. She will usually opt to be held, or to be held AND do whatever activity I bring up!<br />
<br />
This past Sunday was the first since before her surgery that she has attended and made it through nursery (2 hours of play at church with other kids under 3). She is OK to go to nursery since her blood counts are usually unaffected by the drugs she is on. Anyway, it was nice that she was able to take her mind off other things and just enjoy playing with friends. I am so grateful that she has the option to do so while on chemo. Every day I think how thankful I am that she can be outside in her new sand pile, or playing in the water, or going to the park with friends. So far she has been able to live a normal Kaelyn life. I know that isn't the case for a lot of patients on chemotherapy. I also know that things can change very quickly. The longer she is on chemo the worse it is expected to get, so I am prepared for that, but again we have been so blessed.<br />
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This guy loves the swings!</div>
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<div style="text-align: center;">
Oasis - overpriced. But Kaelyn's happiness was priceless!</div>
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These 2 could have stayed here all day.</div>
<br />
Tomorrow is Kaelyn's 3rd birthday. We have had family here visiting the past 2 weekends so Kaelyn has pretty much been celebrating this birthday for 2 weeks! Her one request is chocolate cupcakes with pink frosting. I'll be sure to post some birthday pics.<br />
<br />
Again, thanks to everyone following up on Kaelyn. Right now she is doing great and we are enjoying this time while we have it!<br />
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</div>Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com2tag:blogger.com,1999:blog-4162266116517247687.post-45550091046252934602012-06-16T11:10:00.001-06:002012-06-16T11:10:24.015-06:00Round 1We spent our last few days of chemo freedom playing as much as possible. Though, we are very lucky and Kaelyn's play shouldn't be affected to much by the chemotherapy.<br />
<br />
It's amazing to me how many random strangers passing us by know about Kaelyn's situation. But then I turn around to see Kaelyn behind me and realize it is because she is lifting her shirt to show everyone her awesome battle wounds! That is a great way to spread the word :) It has given me a lot of opportunity to share Kaelyn's story, and to come to hear others experiences as well. And speaking of showing the world her exciting belly, yesterday after Kaelyn had her first treatment, we stopped by Costco before heading home. Her Grandma Lesli called to check up on her and she took her entire top off while riding in the cart to "show" grandma her bandaid covering her port. The funniest part is I was observing Costco products and didn't even notice until I heard another customer laughing. Whoops! I'm glad that she finds joy in showing off her tummy though. <br />
<br />
Before Kaelyn's appointment we had the opportunity to get some family pics (something we wanted to do before Kaelyn loses her hair). We were lucky enough to have a friend offer to do some. Family pics can be somewhat nightmare-ish with kids, but in the end I think they worked out thanks to an awesome photographer. She shared the following pic with us:<br />
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<br />
Yesterday afternoon we met with Kaelyn's doctor, pediatric oncologist Paul Kelker. We all like him very much. He's had a few patient's with Wilm's tumor and is very positive about how things will go. I have heard multiple times from multiple docs that if they had to pick a cancer for their child it would be Wilm's. It sounds weird to say that, but it's true! It has such a great prognosis comparatively and we feel so lucky to have fallen into this category. <br />
<br />
After getting to know the doctor and his nurse, they accessed her port (SO much better than an IV!) to draw some blood and administer the chemotherapy drugs. (Before we go to her chemo appointments we apply some numbing cream to her port area so she does not feel any pain.) They gave her vincristine (commonly used to treat childhood cancers) and dactinomycin (one of the very first chemotherapy drugs ever). Thankfully the side effects of these drugs in children are mild and somewhat minimal. The most common side effects with vincristine, the more toxic of the two, are constipation, hair loss, and neuropathy (nerve damage causing loss of sensation and movement, and nerve pain). Hair loss typically occurs between weeks 2 and 4 of chemo.<br />
<br />
A few hours following the administering of the drugs Kaelyn got very sick. She threw up constantly for about 90 minutes. While in the doctor's office they had mentioned giving her some Zofran (anti-nausea) but we all forgot with everything else that was going on. Besides that, nausea isn't a typical side effect of these drugs. Luckily I had some Zofran of my own on hand from my last pregnancy. I called a pharmacist and asked about what dosage I could give her, and after our second try we got her to keep the Zofran down and she hasn't thrown up since. Whew! I am so glad I saved that :) Today she seems to be feeling well and is doing great.<br />
<br />
Kaelyn's next chemotherapy treatment is next Friday and I will keep you posted of anything that comes up. Thanks again for all the prayers, thought, and gifts in Kaelyn's behalf. We are so blessed to have so many who care. Thank you all!<br />
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</div>Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com8tag:blogger.com,1999:blog-4162266116517247687.post-62060662672976978632012-06-10T01:14:00.000-06:002012-06-10T01:14:21.946-06:00Back in Billings<!--[if gte mso 9]><xml>
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<div class="MsoNormal">
I haven't done much updating because life has seemed to slow
down and normalize since being in the hospital. <span style="mso-spacerun: yes;"> </span>Not much has been going on besides unpacking
and recovering from surgery. <span style="mso-spacerun: yes;"> </span>Kaelyn has
continued to do well, but occasionally complains that her tummy hurts. <span style="mso-spacerun: yes;"> </span>She is walking more and more, and even
climbing a little, though she is still very cautious and slow. <span style="mso-spacerun: yes;"> </span>I am very pleased to report, though, that she
has gained a little weight back and she looks healthy again. <span style="mso-spacerun: yes;"> </span>Kaelyn lost about 4 pounds in the hospital (a
lot for a little tyke!).<span style="mso-spacerun: yes;"> </span>I'm not really
sure how much of that was the tumor versus actual weight lost from not eating. <span style="mso-spacerun: yes;"> </span>Nonetheless she has been eating like a teenage
boy, or similar to her brother Isaac, and is gaining it back.</div>
<div class="MsoNormal">
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Here Kaelyn has snagged Isaac's snack and is studying cloud shapes.</div>
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Playing outside Grandma Lesli's house. You may have a better understanding of </div>
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how Kaelyn is eating as you view this picture of her brother Isaac.</div>
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<div class="MsoNormal">
Life has been a little different from before we found out
about the tumor (Aside from the surgery and cancer!). <span style="mso-spacerun: yes;"> </span>Kaelyn's mood seems to have changed a
bit.<span style="mso-spacerun: yes;"> </span>She wants to be held more, she
seems more shy around others, and, well, she just wants mom a lot of the time. <span style="mso-spacerun: yes;"> </span>I don't know if this is in relation to her
pain or something else. <span style="mso-spacerun: yes;"> </span>I know in the
hospital they talked a little bit about how these types of experiences can
change a child. <span style="mso-spacerun: yes;"> </span>They can affect their
personality and even cause depression.<span style="mso-spacerun: yes;"> </span>I
am not about to jump to any conclusions. <span style="mso-spacerun: yes;"> </span>For now I am thinking it is in relation to
recovery from her surgery, but it does worry me a little and makes me feel the
need to step up as a parent to try to help Kaelyn understand what is going on
and that everything is going to be OK. <span style="mso-spacerun: yes;"> </span>I
have found that very hard though.<span style="mso-spacerun: yes;"> </span>I am
sure that I am underestimating Kaelyn's capability to understand things. <span style="mso-spacerun: yes;"> </span>It just seems that she has no idea what is
going on. <span style="mso-spacerun: yes;"> </span>I would welcome any advice on
how to help her better understand her situation.<span style="mso-spacerun: yes;"> </span>The good thing, though, is so far she seems
to be going along with everything very well.</div>
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We came home to all of this on Wednesday! We are so lucky</div>
<div class="MsoNormal" style="text-align: center;">
to have made wonderful friends here in Billings. Thank you friends!</div>
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<br /></div>
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While Kaelyn was in the hospital, she had a catheter.<span style="mso-spacerun: yes;"> </span>Now Kaelyn had finally achieved potty
training about 10 days before all of this happened. <span style="mso-spacerun: yes;"> </span>That achievement has gone "down the
drain," if you will.<span style="mso-spacerun: yes;"> </span>The first few
days after Kaelyn was out of the hospital I kept thinking about how annoying it
was going to be to go through the whole potty training cycle again. <span style="mso-spacerun: yes;"> </span>Kaelyn was so resistant to it the first time,
and I was sure she would follow the same pattern. <span style="mso-spacerun: yes;"> </span>I have to remember what one of the nurses said
in the hospital though:<span style="mso-spacerun: yes;"> </span>"Potty
training is overrated."<span style="mso-spacerun: yes;"> </span>Of course,
he was joking when he said this, but the more I've thought about it I've
realized it truly is in the grand scheme of things. <span style="mso-spacerun: yes;"> </span>When life is going great, it is easy to put
focus on unimportant things. <span style="mso-spacerun: yes;"> </span>Not that
potty training isn't important.<span style="mso-spacerun: yes;"> </span>It just
seems that when it is a parent's main concern, it's importance is blown out of
proportion. <span style="mso-spacerun: yes;"> </span>Does that make sense?<span style="mso-spacerun: yes;"> </span>The more I've thought about this I've
realized how grateful I should be that potty training is even an option in
Kaelyn's life. <span style="mso-spacerun: yes;"> </span>Having spent time at
Primary Children's Hospital, and knowing many children with various illnesses, I
have seen that potty training may never be something that occurs in the lives
of some children. <span style="mso-spacerun: yes;"> </span>I recently complained
out loud about having to go through the process of potty training again to the
mother of a child with a rare neurological disorder. <span style="mso-spacerun: yes;"> </span>Now, I'm not sure if her child is potty
trained, but I doubt it knowing what I know about the disease. <span style="mso-spacerun: yes;"> </span>I immediately felt like a big idiot and
realized how trivial my worry was. <span style="mso-spacerun: yes;"> </span>I
hope that through these experiences I will continue to learn to be grateful for
the little things in life and become more aware of the struggles of those
around me. <span style="mso-spacerun: yes;"> </span>Everyone is struggling with something
and I pray that I can always remember that and be grateful for my
circumstances.</div>
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<br /></div>
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<div style="text-align: center;">
My husband recently made a few of these signs. I love this quote. </div>
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</div>
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As of now we are T minus 6 days and counting until we begin
chemotherapy treatments.<span style="mso-spacerun: yes;"> </span>I still don't
know a lot about what Kaelyn's side effects will be, or what we need to do to
prepare, but I hope to know more on Monday. <span style="mso-spacerun: yes;"> </span>I have high hopes for this girl.<span style="mso-spacerun: yes;"> </span>One really high hope is that chemo will bring
Kaelyn a love of fruit. Ha! I have no clue why she does not like ANY variety of
fruit, but I have heard taste preferences often change during chemotherapy, so
here's to hoping!</div>
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</div>Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com5tag:blogger.com,1999:blog-4162266116517247687.post-41340633625480395222012-06-06T10:35:00.000-06:002012-06-06T10:35:38.348-06:00Good News<!--[if gte mso 9]><xml>
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<div class="MsoNormal">
Forgive me, I've been a little slow to add the latest
updates.<span style="mso-spacerun: yes;"> </span>It's harder to jump on the
computer and blog when you have two children to watch, and neither of them are
stuck in a hospital bed!<span style="mso-spacerun: yes;"> </span>Just wait until
I have more.<span style="mso-spacerun: yes;"> </span>I'm sure you won't hear
from me at all then.<span style="mso-spacerun: yes;"> </span>Ha!</div>
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<br /></div>
<div class="MsoNormal">
We had a pretty good weekend, probably better than I
expected.<span style="mso-spacerun: yes;"> </span>Kaelyn again has handled the
pain pretty well.<span style="mso-spacerun: yes;"> </span>She is very protective
of her stomach area and takes things pretty slow still.<span style="mso-spacerun: yes;"> </span>She occasionally says "owie" when
she bends the wrong way or is hit or bumped.<span style="mso-spacerun: yes;">
</span>The past several days Kaelyn has usually taken a dose or two of
Tylenol.<span style="mso-spacerun: yes;"> </span>She agrees to take this because
we call it "bubble gum."<span style="mso-spacerun: yes;"> </span>It is
bubble gum flavored chew tabs, made by Equate.<span style="mso-spacerun: yes;">
</span>Brilliant.<span style="mso-spacerun: yes;"> </span>Even I think they taste
good!</div>
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<br /></div>
<div class="MsoNormal">
The weekend seemed pretty long, especially considering the
fact that we were awaiting some potentially scary pathology reports.<span style="mso-spacerun: yes;"> </span>Gratefully, though, we heard back on Monday,
2 days earlier than we expected to hear back.<span style="mso-spacerun: yes;">
</span>Dr. Jensen, the oncologist at Primary's, called me Monday afternoon to
discuss the results.<span style="mso-spacerun: yes;"> </span>I was overjoyed to
hear the results came back as a standard Wilm's tumor, Stage 2.<span style="mso-spacerun: yes;"> </span>Awesome!<span style="mso-spacerun: yes;">
</span>The pathologist in Houston
was able to verify that it was just Wilm's, as opposed to teratoid Wilm's.<span style="mso-spacerun: yes;"> </span>The technical name is a nephroblastoma, and,
in layman's terms, blastoma pretty much refers to cells that look irregular and
not necessarily all alike.<span style="mso-spacerun: yes;"> </span>Does that
make sense?<span style="mso-spacerun: yes;"> </span>So they thought there was a
possibility that some cells looked like bowel tissue, but the expert in Houston, who has seen
many nephroblastomas, was able to confirm standard Wilm's because she has seen
many similar cases to Kaelyn's.<span style="mso-spacerun: yes;"> </span>Such a
relief!<span style="mso-spacerun: yes;"> </span>So, this means we can return to Billings and take care of
Kaelyn's chemotherapy there.<span style="mso-spacerun: yes;"> </span>We still
have a lot of information to discuss with the pediatric oncologist, but we do
know Kaelyn will be able to be on a pretty mild regimen of chemotherapy, and
for only 5 months as opposed to the expected 6 months.<span style="mso-spacerun: yes;"> </span>We still are not sure of the potential side
effects of her medication.<span style="mso-spacerun: yes;"> </span>We will
probably be starting her chemotherapy within the next week.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Although I have truly enjoyed spending time in Morgan and
having the support of family and the friends I grew up with, I look forward to
returning home to Billings
and being able to control my own environment again, somewhat! <span style="mso-spacerun: yes;"> </span>Mainly bedtime / nap time routines and
meals.<span style="mso-spacerun: yes;"> </span>I always feel a little frazzled
living out of a suitcase.<span style="mso-spacerun: yes;"> </span>Also, my
parents can hopefully get back to focusing on their busy lives.<span style="mso-spacerun: yes;"> </span>They have been an amazing help and support to
us, as well as<span style="mso-spacerun: yes;"> </span>my sisters driving to
Morgan to help take care of Isaac.<span style="mso-spacerun: yes;"> </span>In
fact, my sister Raegen even changed one of Isaac's poopy diapers.<span style="mso-spacerun: yes;"> </span>She should surely chalk that up as an
accomplishment.<span style="mso-spacerun: yes;"> </span></div>
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<br /></div>
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<div style="text-align: center;">
Visiting Great Grandma Durrant's neighbors bunnies</div>
<div style="text-align: center;">
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<div style="text-align: center;">
Throwing rocks in the river.</div>
<div style="text-align: center;">
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So, right now we are 3 hours into our trip home.<span style="mso-spacerun: yes;"> </span>We stopped to rest in Rexburg so we wouldn't
have to take one excessively long trip because we did not know how Kaelyn would
do in her car seat with her incision still sore.<span style="mso-spacerun: yes;"> </span>She did really well today, though, and didn't
complain of pain until we got out of the car.<span style="mso-spacerun: yes;">
</span>She spent a good hour of the trip singing "Row, Row, Row your
Boat" to us on the way.<span style="mso-spacerun: yes;"> </span>It was
entertaining.<span style="mso-spacerun: yes;"> </span>Isaac spent the majority
of the trip either eating or crying for more food.</div>
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<br /></div>
<div class="MsoNormal">
I'm excited/nervous/not at all excited to get started with
chemo.<span style="mso-spacerun: yes;"> </span>I still do not know what to
expect, but I just want to get it over with.<span style="mso-spacerun: yes;">
</span>I know Kaelyn is going to do great though.<span style="mso-spacerun: yes;"> </span>She continues to surprise me with her
strength on a daily basis.<span style="mso-spacerun: yes;"> </span>I'm not saying
she doesn't milk this situation a bit and get a few extra treats here and there
;) But hey, that just shows me she's smart too.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I'll update in a couple of days when we've learned more
about her chemotherapy and when we will be starting.</div>
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</div>Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com8tag:blogger.com,1999:blog-4162266116517247687.post-29499379473327123472012-06-02T23:54:00.004-06:002012-06-02T23:54:50.223-06:00Goodbye Hospital!<div style="text-align: justify;">
We had such a great time at the zoo on Friday. We had only been discharged from the hospital about an hour before arriving. Kaelyn really enjoyed seeing all the animals. It made me so happy that we could spend a night doing something fun with Kaelyn and family, and for free. It was an amazing experience seeing all the children with medical needs just enjoying their time at the zoo. I think the animals knew these kids were extra special because they were all putting on a good show! I've never seen so much action at the zoo. It seems like most of the animals are usually just sitting around, sleeping, or eating, but they were quite active, and interactive, while we were there. An especially exciting time was watching the tigers (fight? play? mating ritual?). Whatever they were doing, it was fun to watch!</div>
<div style="text-align: justify;">
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Today Kaelyn has been pretty tired and a little moody. She is very particular about who can hold her because she doesn't want her tummy hurt. We have to be really gentle about how we handle her. The last couple of days have been really difficult to look into her eyes. They aren't the same. They have dark circles around them and are sunken in. Since the surgery she has also lost weight and is very fatigued. I hate that when I look into her eyes, even when she has a smile on her face, it hurts my heart. I want to be able to look past the sickness in her face. I'm sure this is all a result of the surgery, but it just reminds me of what is to come. It reminds me that I need to be STRONG for Kaelyn, and for the rest of my family. I have complete faith that we will get through this, but I am nervous for the "getting-through it" part! I know that my attitude and faith will directly affect Kaelyn, and I want to be a great mom to her when she is going through this. I know I've said and said this, and who doesn't love their child, but I just love this girl! She has already given me so much strength in just the last 10 days!!</div>
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Rewinding just a bit though, Kaelyn's last day in the hospital went pretty well. Again she refused any medications, but handled the pain pretty well. It really is hard to not be able to take that pain away from her. Not even kisses help the pain :(. She continued to eat and drink well, though, which is what eventually got her out of there a little earlier than expected. The last day in the hospital meant removing the remainder of her bells and whistles. The simple things were the leads and IV lines connected to her port. The stuff she hated were the adhesive bandages and Huber needle, which was in her port.</div>
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We did fit in a lot of play time for her last couple of hours there as well. Kaelyn was getting so used to having her little mobile IV and medication stand constantly by her side that she started pushing it along to wherever she wanted to go. It was kinda funny, especially since it is about 3 X taller than her! Here are a couple pics in the playroom:</div>
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We returned to Kaelyn's room and found a bouquet of blue sugar cookies! Thanks to Josh, Liz, and family!</div>
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Just before leaving the hospital, we were able to meet with Kaelyn's oncologist again. She was able to better explain to us the few results she knew of the pathology that was done in Salt Lake. I explained it a little bit before in a previous post, but I understand it a little better now so I will try agian! We were told that the majority of the cells found in the biopsy were identified as Wilm's tumor. There were some other cells, though, that were not as they expected. They believe these cells were teratoid cells. Teratoid cells are immature cells that can become any other cell. So, Kaelyn's pathology results showed what looked like bowel tissue where there should have only been kidney tissue. Primary's sent the specimen on to another pathologist in Houston to verify what they saw. If these truly are teratoid cells, that would mean Kaelyn's diagnosis would be Teratoid Wilm's tumor. This is still a very treatable cancer. The only problem is that it is VERY rare. The oncologist did some research and was only able to find that there were only about 80 documented cases ever, with only about 25 of them being studied. The majority of these cases turned out fine, just as a regular Wilm's tumor would with treatment. The only downside is that there is just such little experience with this type of cancer, and they don't know exactly what to expect, like they would with a typical Wilm's tumor. So, the plan now is to wait until next week when the pathology report is finished in Houston. If it comes back as teratoid we may end up having to do chemotherapy in Utah. There is still a lot that is up in the air, but when I know I will update! I still feel really good about things. Kaelyn has proven to be such a trooper.<br />
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Keep those prayers coming! Thanks to everyone for your love and support. Hopefully I'll have more updates sooner than later.<br />
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</div>Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com5tag:blogger.com,1999:blog-4162266116517247687.post-66139934816675435472012-06-01T13:43:00.002-06:002012-06-01T13:43:51.636-06:00ChampionLast night Kaelyn's grandpa Ernie spent the night in her hospital room with her again since he has not been able to be here because of work and church things. Brock and I were able to get a solid 5 hours of sleep in the hotel, which is better than interrupted, uncomfortable sleep at the hospital!<br />
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I was really nervous to leave Kaelyn with my dad last night because she had not successfully taken any pain medication since the epidural was removed and seemed to be in quite a bit of pain unless she remained completely still. She ended up falling asleep pretty close to 11. That's when we headed for the hotel and left my dad to fend for himself. When we returned this morning we found out she had woken up twice in the night while they were doing her vital signs. Both times she cried for a couple of minutes but went right back to sleep. The rest of today has been pretty great. She is in some pain, but she handles it really well. I guess she will not be taking any pain medicine since she refuses, but I'm okay with that as long as she can handle it. This just confirms my beliefs of her always being a tough girl!<br />
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Again, the doctors have been very impressed with her handling the pain, her eating and drinking, and her walking around and playing. She is our little champ. Our goal was to be discharged today and to have her pain in control enough to be able to visit the zoo. Mission accomplished! They are currently in the process of discharging her and we are planning to hit up the zoo tonight. I am completely amazed about how things have gone. I was so worried last night because I was convinced she would refuse to take her medicine, no matter how bad the pain got. I never even thought of the possibility of her being able to handle the pain without medication. <br />
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We're gonna miss this hair!</div>
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It looks like we will be hanging out in Morgan over the weekend until we think Kaelyn is healed enough to make the long drive back to Billings. The oncologist here is pretty sure we can take care of all her treatment in Billings. If that is the case we will probably head back early next week.<br />
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Visits from Isaac</div>
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The next preparations are for chemotherapy. It makes me sick reading about the precautions I have to take for myself and my family because the medication is in Kaelyn's system! Things like handling her soiled laundry with gloves, washing the laundry twice, and avoiding all of her body fluids. It is disturbing that we will be filling her body with such things, but it is really our only option, and we know that everything will be OK. Many have been through it before and have been OK. I am confident there will be a much safer remedy in the future, but we have to deal with this now, and this is how to deal with it!<br />
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We're looking forward to our last week or so until chemo. Hopefully we can squeeze in some fun activities!<br />
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</div>Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com7tag:blogger.com,1999:blog-4162266116517247687.post-48627233114450202452012-05-31T19:48:00.001-06:002012-05-31T19:53:18.478-06:00Mostly UpLast night ended on a high note with Kaelyn being allowed to drink a couple of ounces of chocolate milk, after much begging on our part. She was definitely in heaven for the 60 seconds of chocolate milk, and thereafter.<br />
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Following such a delightful snack, Kaelyn slept through the night, nearly until 10 o'clock the next morning! Because she did well with the chocolate milk, she was OK'd to try some breakfast. She was so happy she was allowed to have scrambled eggs and gobbled them up in no time. She had some cream of wheat and a small vanilla milkshake on the side. It was bliss!<br />
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She had lots of visitors today, which meant lots of gifts too! Thanks to everyone for thinking of Kaelyn, the gifts have definitely cheered her up!<br />
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As far as progress made today, Kaelyn had breakfast and a little but of lunch, chicken nuggets and fries by request (healthy, I know, but at this point she can have whatever she wants). She has not eaten anything since then, but a couple other things have changed since then too. The pain management team decided, with our approval, to remove the epidural and move on to oral pain management. Kaelyn took her first dose of oxycodone without it even phasing her. They removed the epidural 30 minutes later, making sure there was an overlap in meds to avoid pain, and conserve pain control. When it came time for Kaelyn's second dose, though, things did not go as smoothly! Normally Kaelyn does NOT like to take liquid medication by mouth. We've gotten use to chewable Tylenol at home, but they don't have anything available in that form. Actual pills cannot be broken up and mixed into food because her dose is too small, about a third of a pill, and so that would be to difficult to measure in an exact amount. So, when the time came for the second dose, Kaelyn was in a little bit of pain and was fighting having to take the drugs. I don't think she even got half of the dose down that she was supposed to take, so the pain returned quickly. Our only option at that point was Tylenol, which she still fought. So, she is still in pain, and it's hard to help her understand how we can help that pain. It looks like she is reverting to sleep in order to block out the pain. The only problem with that is she isn't getting up and walking around like she should be. As a parent, I just want her to be comfortable. It's really hard to see her in pain, especially when typically she is so tough and doesn't complain about owies... though she does like band-aids! <br />
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Today Kaelyn's oncologist came in to discuss a little bit of the pathology report. They actually have not received the report back, but she talked with the pathologist over the phone. The report has not come back yet because the pathologist found some cells that were atypical of Wilm's tumor, though the majority were Wilm's tumor. The oncologist isn't too worried. Those cells that are atypical may be so just because of some simple staining errors, or they may be teratoid cells. If they are teratoid cells, the treatment would still likely have a positive outcome, there may just need to be a change in the type of chemotherapy. So, we are hoping to hear back by Monday. The pathologist sent samples on to an "expert pathologist" in Houston, TX, for a second opinion, so that is what we are waiting on now.<br />
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As of today, our hopes are to be discharged by tomorrow so Kaelyn can go to the zoo. Hogle Zoo is hosting "Dream Night at the Zoo," a private evening set aside for children with chronic illnesses or disabilities. They will be showing their newest exhibits, serving dinner, and will have several activities for the kids. We were lucky enough to get 5 tickets, but we'll be even luckier if Kaelyn can go. That is dependent, though, on her pain control at that point.<br />
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So, today has been mostly up. Sometimes it's hard to remember how positive the day has been when you are currently stuck at a low point. Our next challenge is going to trying to figure out how to help Kaelyn understand the purpose of the medicine and how it can help her. The more she refuses to take the medication, the worse the pain will get. I know we will need help beyond ourselves to help Kaelyn to understand, so all prayers would be appreciated. I know this is going to take time, some pain on Kaelyn's part, and some discomfort on our parts seeing her in pain, but I just have to remember how easy we have it, and I'm just so grateful to know we get to keep her around with us.<br />
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Tomorrow will be better!<br />
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</div>Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com7tag:blogger.com,1999:blog-4162266116517247687.post-49367336812923979522012-05-30T12:41:00.003-06:002012-05-30T12:41:54.981-06:00Blue CookiesLast night was glorious. My parent got us a room in a hotel about a block from here, and I don't think I've ever slept so deeply! Isaac was with my mom in Morgan and my dad stayed at the hospital with Kaelyn. And that bed was so comfy. I can't stop thinking about it! Haha. Kaelyn slept through the night again, which is great. I keep worrying she will wake up in pain, but so far we haven't had to worry about too much pain, thanks to the epidural. I'm worried about switching to oral pain medications, whether they will work as well, or whether or not she will take them. That is too worry about for another day though. Today's focus is again on getting Kaelyn to drink fluid. Yesterday she was OK'd to have sips of clear fluid, and today has moved up to clear fluids. She has been pretty reluctant to drink anything, though, because she wants food! My dad said she was saying "blue" in her sleep last night. All day yesterday she was asking for a blue cookie. I don't know where this blue cookie came from (I'm wondering if it might be the blue Oreo packaging??) but by golly when she can eat she'll get all the blue cookies she wants! I think blue cookies do have some kind of cancer-fighting qualities anyway.<br />
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Kaelyn is supposed to be walking 4 X a day. We are just about to head out for our 2nd walk. She has done really well with this. She never wants to stand up, but once she is up she doesn't have a problem. <br />
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We met with the surgeon this morning and he said we should have the results of the pathology report by tomorrow. We are pretty much waiting on that little report to answer all of our lingering questions! So we will be very excited when those results come in.<br />
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Again, the surgical team came in this morning and is very pleased with how well Kaelyn's is doing. They removed the bandage over her incision today and it didn't bother her so the left it off. It's about 7 or 8 inches across her upper belly, starting from her left side and ending just past her belly button on the right side.<br />
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Sometimes I worry I over do it on the pictures, but I've had complaints of not enough so the remainder of this blog post will be dedicated just to that!<br />
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Grandpa Ernie hiding from Kaelyn.</div>
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A view of Rae's hookups. They actually took out her IV since they have her port for medications, so she's down 1 today!</div>
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This morning's walk... or ride.</div>
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We love this girl so much. It's been nice to spend some one-on-one time with her, and to watch how well she is enduring all of this. She asks for food all the time, but quickly gets over the fact that she can't have any. I certainly would be behaving much differently if I had to go for days without food! Looking through these pictures, it looks like we have lots more fun here than at home! Kaelyn can make lots of messes and someone else will clean up after her. That's one of my favorite parts. :)<br />
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I will continue to update when more info comes in, but we're pretty much on repeat until that pathology lab comes back.<br />
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</div>Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com7tag:blogger.com,1999:blog-4162266116517247687.post-25143601714353766212012-05-29T13:24:00.000-06:002012-05-29T13:30:20.170-06:00Hospital Stay Day 2Kaelyn has continued to do well since her surgery yesterday. She was probably only awake for a total of 3 hours following her surgery yesterday. She mostly just shook her head yes and no to answer and questions, and flashed several smiles. A little while before she fell asleep, she said her first word since surgery: "Hamburger." I have no idea why she said hamburger when she has never really had an actual hamburger, but at the same time it broke my heart a little because it was such a simple request that she totally deserved but she is not allowed to eat or drink yet. Such a bummer. She took it well though, and luckily was back to sleep and slept through the night. It has been a little more difficult today to take her mind off food. They finally agreed to let her have sips of water. She is not allowed to eat or drink anything because her bowels were put under a lot of stress during surgery. They were moved out in order to remove the tumor, and it can take them a couple of days to get back to normal. We are all hoping for farts and poops here, pardon my french. When she starts making that kind of progress we can work towards eating.<br />
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Rae (that's her middle name) has been doing well in every aspect and has really surprised me. Around 10 o'clock today we asked if she would like to go for a walk and she said yes. It was a little difficult to start. She was taking tiny steps and complaining of some pain, but once she realized she could do it we were having trouble keeping up behind her with her IVs and such. We walked about 400 ft to an outdoor patio with lots of fun toys for kids. Kaelyn laughed and smiled and had lots of fun with the bubbles out there. She was a little tired after that so she rode the wagon back to her room.<br />
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The hardest part today has been trying to convince Kaelyn to wait for food. We have yet to hear from the doctors today but when I do I will update everyone. For now, though, it's nap time :)<br />
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</div>Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com8tag:blogger.com,1999:blog-4162266116517247687.post-37149117665912967082012-05-28T16:26:00.002-06:002012-05-28T16:26:22.896-06:00Post-OpI am very happy to report that the surgery is over and went well!! Thanks to everyone's prayers and the skilled docs and nurses. Kaelyn was in surgery for about 5 1/2 hours today. They removed the tumor without any problems, and the surgeon reported it to be about the size of a canteloupe, which was a bit larger than we expected. It's hard to imagine something that large in the abdomen of an almost 3 year-old. She is such a trooper though. The doctors (and we) have been pleasantly surprised how well she has taken everything. They had a room prepared for her in the pediatric ICU, but she has done well enough to not have to stay there. Also, they said she was smiling when she woke up from surgery. I surely wouldn't be smiling! She has been asleep for the most part of the 2 hours we have been with her, which I am happy about. I don't want her to be in pain, which I'm sure is probably inevitable but I am fine without for as long as possible!<br />
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I just love this girl. I know I've said it before, but this whole experience has not felt as sad as I would have imagined it to be. I mean, I do not like to see her in pain, of course, and I do not look forward to the chemotherapy and other uncomfortable treatments and side effects she will have to go through, but really it has just opened my eyes to how very blessed we are to have Kaelyn, that she is still in good health, that we get to keep her here with us, and also the eternal perspective the gospel gives that no matter what happens, her body will be restored and we will always be together. This has also helped me to understand faith so much more, and to feel of it's power. Kaelyn has inspired me to have this faith, as I know how much the Lord loves and cares for her. I will be forever grateful to have had the opportunity to have my little family unit and the trials that have brought us closer together thus far.<br />
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Isn't she cute though?!<br />
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</div>Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com10tag:blogger.com,1999:blog-4162266116517247687.post-40119950884923103372012-05-28T11:17:00.003-06:002012-05-28T11:18:00.324-06:00Big DayWell the day is finally here! I can't wait to get this over with. We had a good weekend spent with family. Grandpa Nevin and Grandma Susan were able to come down to Utah to spend a couple of days with Kaelyn. We also visited some family grave sites over the weekend and were able to spend some time with extended family.<br />
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Kaelyn's "going-away kidney party" was a huge success. Cold Stone created a delicious cake to celebrate the event. Kaelyn definitely loved it. She even got money and a birthday card from a confused grandparent.<br />
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The weekend was great, but there was no fooling Kaelyn when we woke her up early this morning to bring her back to the hospital. She is now under the impression that if we are going anywhere in the care with just Mom, Dad, and her, that is where we are going. She's right though, it is! She was definitely bummed to be back at the hospital, but on the upside she was giving lots of hugs.<br />
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At about 8:30 we gave Kaelyn some medicine to sedate her to help with separating from us and going to the OR. She was very happy on that stuff! They took her back at 9, and now we are just playing the waiting game. We receive updates from a nurse in surgery on our cell phones, and so far everything is good. Thanks to everyone for your thoughts and prayers. Again we are feeling very good about everything so far and we trust that everything will go well. We love little Kaelyn so much!! Thanks for checking in on her. <br />
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</div>Caskey Crewhttp://www.blogger.com/profile/17006797764131925579noreply@blogger.com4