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hankfully she has some killer moves it was a good ending to our first day at disney world day 3 universal studios christmas before heading out kaelyn and i spent some time at gktw white brock went searching for shorts it was around 84 every day we were there so nice anyway while waiting we rode the train played the free arcade games and rode the free car rides went for a few rounds on the carousel met mickey and belle and ate some free ice cream the wizarding world of harry potter was awesome kaelyn picked hermione s wand from olivander s kaelyn also loved the dr seuss portion of the park lots of rides just her size after universal we headed back to gktw to celebrate christmas winter wonderland gktw celebrates christmas each week kaelyn got to see santa pick a gift out of his bag see snow in florida and make christmas crafts the big bunny is mayor clayton the gktw mascot kaelyn got to see her favorite volunteer one last time this night she came all the way from england to volunteer day 4 animal kingdom it was a blast except we had to escape a bug s life before hopper got us kaelyn did not like that day 5 sea world i love sea world we had lots of fun here too another gift to make a wish kids is to feed the dolphins so the first 30 seconds we were with the dolphins i tossed in a fish and the dolphin spit water directly in kaelyn s face it was the funniest thing ever but of course after that she wanted nothing to do with them she just kept spitting and wiping her tongue trying to get that yucky salt water out we went horseback riding again before we left and ended the night with a dive in movie swimming and the little mermaid and a yummy bbq it sure felt like summertime there was some kind of balloon convention in town and they donated thousands of balloon to gktw kaelyn has her parrot and bulldog here she also had a jasmine balloon and a snail they had everything day 6 last day back to magic kingdom we had a few more characters to meet most importantly minnie mouse kaelyn s favorite we had a great last day we had a great entire trip we are so thankful for the make a wish foundation give kids the world resort and volunteers and disney and the other parks for making this trip so special we left this wonderful place early the next morning and froze our buns off once we were home it was so good to have isaac back with us we are back to life as we know it posted by caskey crew at 10 09 pm 7 comments 12 04 2012 late update i m sorry for not updating sooner again it s only because there has been nothing bad to report which i like kaelyn had her first mri and set of x rays following her completion of chemotherapy treatment on november 19 with great results no cancer so we proceeded to the next step of having her port removed the following week i have mixed feelings about this kaelyn has to continue to have blood work x rays and ultrasounds every 3 months this year and blood work will be a nightmare without the port she fights and kicks and screams and it takes many tries to finally get her accessed i have talked to others who have said their doctors left their child s port in for a year following chemo just to make things easier and in the event the cancer returns that leaves one less surgery it is what it is though and we ll get through it there are worse things mri prep i didn t think the chemo had too much of an effect on kaelyn but recently i am noticing that she has a better appetite and has more energy in other words she doesn t want naps anymore mixed feelings there she is so excited that her hair is growing back and she tells me this every day i personally enjoyed not having to wake her up earlier on sundays to do her hair i m going to have to learn all over again as i have been out of practice post port removal finishing up chemo treatment has been more of a transition than i imagined there wasn t an instant relief like i expected i actually feel more stressed now than i did while she was getting treatment i think there is just this constant lingering thought of what if it comes back and for some reason i m having a hard time shaking that it s always on my mind i know i ve talked about it before that her chances are pretty low of recurrence but it still bothers me i just have to remember to take it one day at a time and worry about my family s lives today not what will be going on in a year and disney world in 35 days no snow there stone cold biker posted by caskey crew at 10 21 pm 1 comment 11 09 2012 gratitude this is what i have been feeling more than anything lately we have been so blessed and i don t even know where to begin to show how grateful i am a thank you is such an understatement for the way we feel about the help and prayers offered by those around us friends family neighbors and people we don t even know have truly given us so much more than we deserve i do feel that kaelyn deserves these things but as her parents i don t know that we do the help we have received financially has certainly lightened our load and allowed us to put more of our concern on our children as opposed to overwhelming our minds with questions and the stress of how to pay for this medical help so to all of those who have contributed in any way thank you the help we have received with friends and neighbors being able to watch isaac at the last minute when we have to run to the doctor unexpectedly has been amazing it is hard not being near family at a time like this let alone being still somewhat new to the area we are in we are so grateful to all who have offered to watch isaac and who have dropped their plans to help us out thank you the help we have received from thoughts and most especially prayer has been astounding if you told me a year ago that i would be going through something of this magnitude i would have imagined myself as a huge emotional stress case that has certainly not been the case and i attribute the strength and faith i have felt to the many prayers coming our way also kaelyn has done very well with her treatment and has handled being cooped up in the house or being sick very well thanks to everyone who has thought of kaelyn and expressed your love and friendship in so many different ways i know kaelyn has felt of your love and she has become a better more loving child through all of this and she s really cool look at that hair growing in posted by caskey crew at 7 28 pm 3 comments 10 24 2012 last round of chemo party time yesterday was such a long day an extremely good long day though the last couple of weeks i ve been able to spend some one on one time with kaelyn as we ve had to spend more time at the doctor s office because her counts have been low we have first had to go in to the office to see if her neutrophils were high enough for her to get chemotherapy so we would head in and have some blood drawn grab some breakfast in the cafeteria while waiting for lab results head back to the office to play with the awesome hematology oncology toys and then wait for the chemotherapy drugs to be made up if the labs looked good they don t want to get the drugs ready if they don t know for sure kaelyn will be taking them because they are so expensive i e 2500 for 1 syringe of dactinomycin thank heavens for insurance and they expire very quickly yesterday we followed this same procedure anyway because we have been in the office longer lately i ve found babysitters for isaac the past couple of weeks thus i ve had more time to hang out with kaelyn since i have been spending less time chasing after isaac and preventing mass destruction i do love that boy i was extremely grateful that kaelyn s neutrophils were high enough for her to finish off her prescribed 25 weeks of chemotherapy and to top it off we were able to celebrate this milestone with a very special night for kaelyn at texas roadhouse and believe me they went way out of their way to make it special kaelyn and sophia learning the art of line dancing kaelyn had such a fun time dancing sadly this was all i caught since my sd card was full our texas roadhouse experience was pretty amazing it all started when a friend from our playgroup set up a fundraiser with texas roadhouse where they would donate 5 of all the proceeds for kaelyn s medical bills what a great friend and what a great restaurant texas roadhouse took this opportunity and ran with it and did way more than i would have imagined they would do they advertised all over billings putting up signs and handing out flyers they made announcements at the local hockey games and as well as on the local news and in the newspaper old navy and papa murphy s even participated by handing out flyers to all of their customers for us what a great community when it came time for kaelyn s night we were all so excited we walked in to texas roadhouse which was decorated with balloons and tons of pictures of kaelyn most of the workers were waiting at the door to meet and greet kaelyn and they all had such big smiles on their faces the place was already hopping at 5 o clock on a tuesday night we got to our reserved table and enjoyed a wonderful meal and our kids were spoiled with gifts i mean spoiled a lot of people we had never met before stopped at our table to meet kaelyn and of course they loved her our server was such a nice guy really the entire staff was just so nice and we are especially grateful for the manager who arranged it all and made it into such a big party my favorite part of the entire night was each time a certain song came on the staff would do a little line dance kaelyn jumped down from the booth and danced with them and really had such a fun time i couldn t have asked for a better way to celebrate her last day of chemo we just wish more of our friends and especially family could have been there with us kaelyn being ridiculously spoiled but sharing with her brother rikki presenting kaelyn with a gift card for a mani pedi thanks to everyone who came out to texas roadhouse to celebrate with us we had a great time and we appreciate everyone s support and thank you to everyone at texas roadhouse for making kaelyn s night so special posted by caskey crew at 10 44 pm 4 comments 10 22 2012 kids n cowboys before i get in to this i just wanted to follow up on my last post kaelyn was not able to get her chemo last tuesday as her neutrophil count was too low so we will be trying again tomorrow several months ago i got a call from the man in charge of kids n cowboys inviting kaelyn and her family to come to this event we have been so excited to go since we got this phone call kids n cowboys is a special day for kids in the montana area undergoing cancer treatment the event included riding horses getting to tour a fire truck meeting rodeo queens and rodeo clowns a delicious dinner spectacular prizes and all followed by reserved seats at billings biggest rodeo of the year and indoor to top that off needless to say we had a blast especially kaelyn we went out to a local cowboy store the night before so kaelyn could pick out a cowgirl hat she loves it she put the hat on and ran around the store yelling yeehaw it was pretty cute the rodeo queens sure liked kaelyn i m thinking it was because of her hat we hit the fairgrounds saturday afternoon and started off with horse riding kaelyn had been talking about this forever but once she saw how big a horse was close up she wasn t so sure she wanted to get on anymore but lucky for me she was willing to ride as long as i was up there with her after we got up and she relaxed a little she started yelling yeehaw horsey she eventually did ride by herself too but sadly we didn t catch that on camera kaelyn riding wealthy a gentle giant kaelyn loved the fire truck too and the fireman of course we sat by the martin s for dinner a little family who s oldest boy gavin has been doing chemo for 4 years now starting when he was 9 months he is such a cute boy and he and kaelyn love playing together following dinner there was a drawing for some pretty big prizes there were ipods 100 gift cards bikes hot wheels 4 wheelers and belt buckles sadly there weren t enough prizes for everyone but kaelyn was one of the lucky kids to have her name drawn she was so excited and ran to the front to pick her prize it was between a pink bike that was way too big for her or a cinderella themed hot wheels car after much thought tapping her finger on her chin and saying hmmm she picked the hot wheels car spoiled girl she was so excited though and we loved watching her reaction afterwards kaelyn and i hit the rodeo she loved it with a little help from some cotton candy of course we are so grateful that there are so many people in this world who can turn something negative into something positive the founder of kids n cowboys has a daughter who had cancer 20 years ago and after her treatment he decided to start up this program what a great thing this man does every year along with all those who help him out tomorrow night is kaelyn s night at our local texas roadhouse we are all so excited and i will post pictures of her special night in my next post posted by caskey crew at 7 40 pm 1 comment 10 14 2012 the end is near not the end of the world though i guess if the mayan s are right that end is near too i m referring to being finished with chemotherapy kaelyn is scheduled for her last round in 2 days october 16th there is a good chance that won t be the actual day she gets her last round though since she has been getting more and more neutropenic with her latest doses of chemo neutropenia refers to low neutrophils one of the many types of cells that make up the white blood cells my brother told me a great analogy taught by one of his professors was that the neutrophils are the marines because of the build up of chemo in her system or defense funding cuts her marines are low in number and her immune system isn t working so well so in order to prevent any worsening or other illness it could be put off until her neutrophils recover the other downside of neutropenia is having an overly cautious mother who won t let the little girl have any fun at least not with friends or any other people who may have sickness they would like to spread because that would mean another stay in the hospital and we are quite comfortable sleeping in our own beds with no needle pokes i m really hoping her counts will be up so we can to a lot of playing with friends this coming week waiting on counts for the previous round of chemo isaac always finds something to do and the ipad is the main reason kaelyn is so excited to go to the doctor every week it makes me laugh as of late how excited kaelyn is about going to the doctor one way of knowing this is anytime we leave the house she asks in the following order where we are going in hopes it will be one of these kaelyn we go to grandma s house me nope kaelyn oh we go to play with friends me no kaelyn oh go to kaelyn s doctor me no kaelyn we are going to pick up your medicine kaelyn oh medicine...