Scan time again...

Cohen has scans every 3 months to see if he is still in remission. He had an echocardiogram and a bone scan on Monday; blood work and a CT scan on Tuesday. His scans came back CLEAN!!! His echo came back GREAT and his blood work came back NORMAL!!! YAY!!! He has been in remission for 9 months now. What a relief this has brought us. Days to weeks before his scans are so nerve racking. All of those bad feelings and worries come back. There is nothing better than to hear that his tumor has not come back.

This picture is of Cohen waiting for his scans. He was so good.

Guess who's birthday is Saturday? Cohen's! He will be 3 on Saturday April 11th. He is getting so big. I'm so thankful with how well things have gone for him. Thank you everyone for your love, prayers, and support. I can't ever say thank you enough. :)

Stir Up Wishes for Make-A-Wish Foundaton of Utah

I'm not sure why I haven't posted this before. It just dawned on me... Make-A-Wish Foundation of Utah needs your help; read below and see why:

From Make-A-Wish Foundation of Utah:
Hi Wish families – Better Crocker is doing a campaign that will benefit the MAW Foundation – but we need your votes – you can vote once daily on their website the info is below so please help us out by voting each day and tell your family and friends to do it as well. Thanks
Help Us Stir Up WishesBetty Crocker is using her magic Red Spoon to stir up wishes for the Foundation. Through part of its annual $250,000 donation, Betty Crocker® is granting 12 Wishes in 12 Weeks to M ake-A-Wish® children. The campaign will give each M ake-A-Wish chapter the chance to receive funding for a wish through consumer voting and participation. Go to www.StirringUpWishes.com to help make a child's wish come true by placing a vote for the Make-A-Wish Foundation of Utah. The more votes our chapter receives, the greater the opportunity for us to have a wish granted by Betty Crocker! Don't forget to cast your vote daily - now through M ay 25th!
In addition to voting at www.StirringUpWishes.com, find wish stories along with wish kids' favorite cupcake recipes. Each week, a new wish story and Betty Crocker cupcake will be featured, so visit often for baking ideas, inspiration and to vote for the M ake-A-Wish Foundation of Utah. You can also send a message to friends about the Stirring Up Wishes program and sign up for a weekly email reminding you to vote online.

Please try and vote daily. Thank you for your help!

Miss Kelsi

I have a few updates to give about Kelsi... Kelsi had a check up with Cardiology about a week and a half ago. Everything still looks really good. Whew! Daddy took her so I don't really have to many details to give.
She is missing her two front teeth. She looks adorable with them missing. My next post will have pictures of her without her teeth. She has lost 4 teeth now. Top front two and bottom front two. The bottom two teeth are in now. Aw the days of finding money under your pillow. So exciting!
She is doing really well in school. She's reading at a C level right now. Kindergartners should be at a C level by the end of the year. I'm so proud! She brings a new book home to read almost everyday. She loves to read them to Cohen. Such a cute bonding time for them. Maybe I should have her read the bedtime stories!

Our trip to Florida

Kelsi was granted a wish from Make-A-Wish Foundation. Her wish was to meet the princesses in Disney World. So we (including Kelsi's Aunt) went to Florida February 8th-February 14th and had an amazing time. We went to Disney World- Magic Kingdom, Hollywood Studios, Epcot, and Animal Kingdom; Seaworld, Islands of Adventure, and Universal Studios. Kelsi was given a button which helped us skip to the front of every line. We were able to ride every ride we wanted to ride and meet every Character Kelsi wanted to meet. In 5 days (7 total but 2 were travel days) we did everything you'd hope to do but would take more than a week to do it.
We had breakfast with the princesses, fed and pet the dolphins, and rode the same rides over and over again. Kelsi's favorite ride was Journey to Atlantis at SeaWorld and she loved every roller coaster we went on (and we went on everyone she was tall enough for!) Cohen's favorite ride was the teacups at Magic Kingdom. Poor Cohen felt sick the 2nd day there and barely had an appetite the whole week. He never spiked a fever but if he did it would've made our trip harder because we still have to call the doctor when he has fevers and take him to the hospital if it's high. We definitely dodged a bullet there. SeaWorld was everyone's favorite place. Feeding the dolphins was amazing. An instructor helped Kelsi out and had one dolphin lay on the ledge so Kelsi could pet her. We also fed the seals.
We stayed at a place called Give Kids the World Village. Give Kids a World is also a charitable organization. They only house children with life threatening medical issues. We stayed in our own 2 bedroom 2 bath villa; with a kitchen, family room and laundry room. The village has an icecream parlor that is open first thing in the morning to bedtime. We ate breakfast and dinner in the Gingerbread House. We had room service from Boston Market and a Pizzaria. There is a marry-go-round, movie theatre, playground themed as candy land, and a pool. In the Castle of Miracles Kelsi wrote her name on a star and they hung it on a pilar where it will stay forever. Everyday we would come home to a gift bag full of presents. We went swimming a couple of times and Cohen, who's never been in a pool before, loved every minute of it. Make-A-Wish and Give Kids the World made us fill like royalty. It was so nice to get away from the real world and just live a fantasy life.
It has taken me so long to post this because of all of the pictures we took. So I decided to do slide show and group the pictures. Enjoy; we sure did!

Characters:

Disney World/Universal Studios:

Seaworld:

I'll post pictures from Give Kids the World village another time. It's taken a long time to download all of the pictures so far. :o)


Thank you to Make-A-Wish Foundation and to Give Kids the World! It was truly an amazing experience and one we will never forget.

The scans are...

Clean!!! Cohen still has no sign of disease!!! Yay!!! We are so relieved. A huge weight has been lifted off of us. We can finally go on about our life almost as normal as everyone else. Since he no longer needs treatment or iv fluids we've decided it's time to remove his central line. He'll be able to play in the tub or even in a pool (which he has never done before) like a normal 2 year old. He doesn't want it out. We told him that it's going to come out soon and he got really upset. ☺ To him he's always had that line. Probably as far back as he can remember.
Say bye-bye central line! Bye hep-locking two lines twice a day, bye weekly dressing changes, bye pain in the butt baths.
THANK YOU THANK YOU THANK YOU for all of the prayers you've said for Cohen in the past year and 3 months! He has been so blessed to be where he is at today. I can't even believe how far he's come. Thanks again!

Cohen's scans

Cohen is having his scans and bone marrow biopsy this week and next week to see if he is still in remission. Please pray for him.
To be completely honest with you I'm pretty nervous. These are the first scans he's had since we were told he was in remission and before he started the study. I will update later next week when we're told the results.
Thank you!

HAPPY HOLIDAYS!!!

We have definitely been busy this holiday season. We went on the Polar Express with Make-A-Wish (yes both of my kids are now Make-A-Wish kids; I will post on that later) where they road on the 'Polar Express' train to the North Pole to meet Santa, tell him what they want for Christmas and receive a present.



With all of the fun snow outside they bundled up to play in the snow. Kelsi made a snowman (just a pile of snow it was so cute but I didn't have my camera) and Cohen played until he fell face first in snow. He was done after that.
We went to the Hope Kids Christmas party (Hope Kids is a support community for children with life-threatening medical conditions. They put on events and activities for the children.) They had a lot of fun. Kelsi played with her very close friend who also has a heart defect. They saw, sat, and received another gift from Santa.We saw many familiar faces from Intermountain Healing Hearts and some of the mom's of children with cancer that I've come to know. It was nice for me to be around so many families who are in the same shoes as us (both cancer and heart) and some I've known for a little over a year now. Many of them I consider my second family. It's nice to have a support group of people who know exactly what you are going through. I now have many. ☺
We celebrated a birthday and had family over for a birthday dinner. I was extremely nervous to have Cohen around extended family for the first time since his diagnosis. Luckily no one was sick and Cohen seems to be healthy still. The kids had so much fun with cousins and my cousin's daughter. It was nice to see Cohen playing with children his age.
Christmas Eve we made cookies for Santa. That was fun. Cohen decided he'd rather eat the yellow frosting than frost the cookies.Christmas Day was so much fun! Cohen got off to a rocky onery start but after the second present he was so excited. Kelsi and Cohen received a lot of fun gifts from Santa, us, grandparents, Aunts, Uncles, and cousins.I hope you all have had a Merry Christmas. Thank you so much for all that you have done for Kelsi, Cohen, Chris, and me. We appreciate all of your love and support. This is definitely the season for me to reflect on that. I'm so thankful for everything we been blessed with. Even though we've had our share of hardships they've definitely been blessings in disguise. We've learned to appreciate others and all that we have, love with our whole heart, never give up, have faith, and hope with all of our hearts. (There are many many more but it's late and I can no longer think ☺)
Happy Holidays
~Ashley, Chris, Kelsi, and Cohen.