Cohen's scans are clean!!!

Cohen's MRI and CT scan came back clean. His blood work and echocardiogram came back good as well. Yay for our little buddy. He's been in remission for almost a year and a half now. We're so blessed with how well both Kelsi and Cohen are doing. Thank you all so much for your support, thoughts, and prayers. We hope you all have a merry Christmas and a happy and healthy New Year!
Thank you!!! xoxo
Normally I post a picture but I left my camera at work :(

Cohen has scans tomorrow

Cohen is going in for his scans tomorrow. Since he had an allergic reaction to the contrast for the CT scan the last two times he will get a MRI for his chest and abdomen and a CT scan for his head. He will then have an echocardiogram and a doctor visit the next day. Please keep our little buddy in your thoughts and prayers; I will update on Tuesday when we know the results. :o)

Cohen's scan and Kelsi's Appointment

Great news first. Cohen's scan came back clean!!! Kelsi is doing great!!!

Cohen's day started off pretty good. We weren't sure if he was going to stay still for the CT scan so we prepped him for sedation. He was ok without eating since he was going to get a sucker and a new car. He was even brave when he got poked twice when they were trying to give him an iv. I kept reminding him that if he stayed still during the scan he would get a sucker and a car and not have to be asleep. He did it. He was so still that they only needed to do the scan once. Here's the kicker. They give him contrast that he has to drink over an hour and then they give him contrast through his iv during the scan. He has had both of these contrasts since day one of being diagnosed but last June he had a small allergic reaction that they were able to treat with benedryl. This time they pretreated him with a steroid and benedryl to prevent a reaction. Well that didn't work. He had a really bad reaction, that luckily started after the scan was done. His face started turning a red/purple color and he was wheezing. Poor kid had a panicked mom, a couple doctors, and a handful of nurses around him acting fast. The medicines they gave him helped pretty quickly. He was watched for about two hours an then sent home. He was happy when he final got what he was promised.

Kelsi's appointment went really well. The doctor said she looks great. They turned her pacemaker down to 60 bpm. Since she is getting older her heart doesn't need to beat any faster but her heart will sometimes beat faster on it's own, especially when she's active. By turning her pacemaker down it saves on battery time. She will probably need the battery replaced in 6 years.

My kids are doing great and I love that it's almost been 10 1/2 months since we've had to stay at the hospital. Thank you so much for all of your support and prayers!

It's been awhile...

And things have been going great. But before I update you on what's been going on recently I wanted to let you know what's coming up. Cohen has his scan next week so please keep him in your prayers. Kelsi has her cardiology check up next week as well so please keep her in your prayers. I will update the results next week.

Kelsi started school again last month, 1st grade, and she is a very smart girl. She's been learning challenging spelling words and has been getting 100% + the bonus words. I'm so very proud of her. She loves school and loves to read. I hope that determination continues throughout the years. She started dance in the summer and loved it. We were worried that she'd get too tired because of her heart, but she's doing great so we decided to put her into tumbling during the fall. Her life is so busy right now. Full days of school, homework every night (reading, spelling, and a worksheet,) and tumbling. She's free during the weekends and plays with her brother and friends. That's weird in it's self. When your child says can I go play at my friend's house? I'm just like but don't you want to stay here and play with us? Parents get boring to their kids too soon! It's ok though because at least she has friends that she can play with. But oh does the drama start at a young age!

Cohen started preschool last month as well. He likes it some days and not others. That's to be expected, but for the most part he likes it. His speech is getting much better and he has friends. He's so excited to have friends that he talks about them all the time. I can't believe how big he is getting.


Crazy kids... :)

Support... Walk for Healing Hearts

Support can mean a so many different things when you are going through something difficult. It means having someone to listen when all you can do is vent, having a shoulder to cry on when you can no longer hold back your tears, someone offering something so simple when you just can't do it yourself, someone bringing you food when your sick of eating the same thing, someone giving you advice when they've been there, etc. There is a support group that we belong to that do all of those things and much more for us and for others. They were there for us when what we were going through wasn't even related to what they're about. Their group name is Intermountain Healing Hearts. They are a support group for families of children or adults with congenital heart defects (CHDs) and heart disease. We joined the group 2 days after Kelsi's last open heart surgery. Many of the members supported us through Cohen's cancer treatment as well. I've become very close friends with many of the members. Kelsi has become friends with kids that have 'heart' in common.

Their annual 'Healing Hearts' walk will take place on September 12th at the Riverview Park. The event starts promptly at 9:30am. Same day registration begins at 8:00am. Early registration is now until August 26th. To participate the registration fee is $10.00 per person or $50 per immediate family. The registration fee includes receiving a t-shirt for the event. There is no registration fee required for those to participate with a CHD.
Gather your family and friends to support Intermountain Healing Hearts by registering at www.intermountainhealinghearts.org. Donations are tax deductible.

I know I recently asked help supporting Make-A-Wish but this is also something that means so much to our little family. This group was the very first support, outside of family and friends, we received. It even means that much more to us because they supported us through Cohen's trials.

Thank you all so much!

Make-A-Wish's Rubber Ducky Derby- August 29th

You all know how much Make-A-Wish means to us and how much they've done for our little family, mainly Kelsi and Cohen. Please join us in our efforts to support Make-A-Wish Foundation of Utah for their 21st annual Rubber Ducky Derby.
Please click on the link below and donate as little as $5.00 per ducky. (You don't need to be present at the event.)
Your donation makes wishes, like Kelsi's and Cohen's, come true.
Please tell anyone else who may also want to donate.

Thank you so much!
Ashley and Chris


Follow This Link to visit our personal web page and help us support Make-A-Wish Foundation - Utah

Kelsi did a radio commercial promoting the event. She did such a great job. As soon as I have a chance to figure out how to attach it I will.

Power of a Wish news interview

In case you missed it here is the link to our news interview: http://www.abc4.com/news/local/story/Power-of-a-Wish-brings-play-back-into-siblings/c8pjBvAqLE6fxzIZhh_WVA.cspx

A year ago today...

We found out that Cohen had no sign of cancer; that he was in remission. I can't believe it's already been a year! I'm so thankful that my little man is still in remission; 4 more years to go. Too celebrate we took Cohen out to dinner, played games, and played outside. Tonight we were able to laugh, play, and enjoy each others company. We all had so much fun.


We did a news interview, Power of a Wish, for the Make-A-Wish Foundation of Utah that will air this Saturday on ABC 4 at 10:00 pm.

Thank you so much for all of your support, thoughts, prayers, etc. :)

Cohen's scan is clean!!!

Honestly that is the best new to hear. Cohen is still in remission! In fact he is coming up on a year of remission! I think we'll celebrate by buying some remission t-shirts. :)
Cohen is doing really well. He's eating like a pig and has gained weight. He weighs 28lbs! He looks like a normal 3 year old. He is definitely acting like a 3 year old mischievous little boy. Oh and I don't think I ever blogged that he is potty trained! Yay! That has been nice!
I just want to thank all of you who have been keeping Cohen in your prayers. I don't think he'd be where he is today without all of your faith. So THANK YOU! And thank you for keeping Kelsi in your prayers too. She is doing really well. I have a post coming about her soon. :)

Can you believe that it's scan time again?

Cohen has his scan (just a CT scan this time) on Tuesday June 30th. Please keep him in your thoughts and prayers. We'll update as soon as we know the results.
Thank you!

Cohen's wish

Make a Wish Foundation granted Cohen a wish on April 25th. He wished for a backyard playset. It was the perfect wish for Cohen. We really wanted him to receive something that would last. With the treatment Cohen went through, the time spent, the pain, etc... we wanted something that would remind us of the hope we had and how far he had come. Cohen and Kelsi have spent numerous hours everyday outside playing on the playset. Even after it rains they beg us to wipe it down so they can play on it again.
For the first week Cohen was intimidated to play on the playset by himself. He'd only swing or go down the slide with his mommy or daddy. Kelsi encouraged him to swing by himself and told him she'd push him. He did it! He's a little monkey on that playset now. Doing everything his big sister does. He really looks up to her and she encourages him to be brave. I love the relationship they have and now with the playset they're relationship will continue to grow!
Thank you Make-A-Wish Foundation of Utah and all of the people that donate to them! I'm at a loss of words of how thoughtful people really are. Going through the things we've gone through have opened our eyes to the numerous good things people do for others.

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!