Sunday, September 29, 2013

Be Beautiful, Be Yourself

Last night was the Global Down Syndrome Foundation's annual Be Beautiful, Be Yourself Fashion Show! Kennedy has been looking forward to this day for MONTHS!! A couple weeks ago, she and two of the other models from the show were able to go on the news program Colorado and Company to promote the Fashion Show. Kennedy had a blast and she met Ben ;).

Here are a few pictures from that day - I'm supposed to get a video of it later! If I do, I'll be sure to share it!!

The big picture is Dave Logan (he used to be a football player and now is a sportscaster and radio personality) who we met out in the lobby... he stopped for a picture with Ben, Kennedy and Chase. Kennedy loved her new outfit from The Nest. She got to go a few days beforehand to pick out her outfit, which she had a great time doing, and she gets to keep it now, which is awesome! :) Ben and Kennedy had lots of time to hang out in the green room and became fast friends - Kennedy says he's more awesome than Justin Bieber! ;) Kennedy, Ben and Chase did a GREAT job on the show and it was good practice for what was to come! :) 

Yesterday afternoon when we got to the hotel, Kennedy went in to get her hair and makeup done.... 
Which I promptly fixed afterwards (just the hair, not the makeup) ;). 

Kennedy, Katie and Beth hanging out waiting for hair and makeup :) 

There was no shortage of fame last night! Kennedy got to hang out with Tim Harris from Tim's Place
John Roberts and Kyra Phillips (Fox News, CNN, CBS, War correspondents, Journalists, etc etc etc. :) Kyra also received an award last night and John got to walk Kennedy down the runway! 
John C. McGinley from Scrubs and also dad to the famous Max who happens to have Down syndrome
And... two more Broncos cheerleaders... that makes 4 in the last week. Think she's part of their squad yet?! :) Miss Colorado was also there and I know a reporter got a picture of Kennedy with her, but I didn't get one. Hopefully I'll get a copy!

Before the show, the models got a chance to practice with their buddies that were assigned to them for the evening... this gave us parents a great photo op as well!! :) Somehow I missed the beautiful Alexandra, but you can read all about these models right here
 Top left: Kristina and Katie, Top right: Tim and Hayden
Bottom left: Lexi and Opheal, Bottom right: Stephen and Rafi

Top left: Natalie and Beth, Top right: Ben and Sofia
Bottom: Tait and Kennedy with Kennedy's buddy Chloe, they had lots of fun together!

They practiced one more time and then it was off to take pictures with stars and hang out until dinner time... 

All the models and their buddies lined up to practice the finale

Kennedy and me hanging out before dinner

After an AMAZING dinner, it was time for the fashion show... I didn't get pictures of all the models here because I was trying to stay out of people's way. ;) 
 My girl - rocking the stage! 

Tait, Kennedy, Ben and Sofia :) 

 Waving goodbye at the finale...

The whole group singing "We are the World" 

And as for these two... 
Whew! I think it's safe to say that Kennedy has her first crush (you know, besides Justin Bieber). AND she's growing up way too fast! At least we know she has good taste! Something tells me that the Ben and Kenn story is not quite over. ;) 

Thanks for sharing our night with us! I have heard rumors of video so of course I will share if I see it! :) 

Wednesday, September 25, 2013

Remembering Daniel

Today is Daniel Barden's 7th Birthday. Like the other kids from his class at Sandy Hook Elementary, Daniel was so well loved and so cherished by his parents, Mark and Jackie, and by his older siblings, James and Natalie.

Daniel was an energetic child who loved music, especially the drums, and loved to swim and play soccer. He often thought of others... you could many times find him holding the door open for adults, helping his teacher in class, and looking out for his classmates. In kindergarten he befriended another student with special needs who couldn't speak knowing that even though she couldn't speak to him that she could understand him... the next year they were placed in the same class. He seemed to have a deep understanding beyond his years.

In Daniel's memory, his family and friends have set up a website and Facebook page called What Would Daniel Do to encourage others to display the same kindness and compassion towards others that Daniel did. On this website, you can read more about Daniel, buy bracelets in his memory and donate to his fund. They are hoping that his memory will live on forever in the kindness of others.

Happy 7th Birthday, Daniel! We will never forget... 

Monday, September 23, 2013

Miracle Party!

FIRST - TODAY is Chili's Day!!! Don't forget to go eat at Chili's!!! St. Jude's will receive 100% of Chili's profits today!! Go! Eat! Help fight childhood cancer!!!

Every year we look forward to the Miracle Party... it's one night where families who have been affected by childhood cancer from all over the place can come together and party! We love meeting up with old friends and making new ones each year. The kids look forward to the limo rides and the games, we look forward to the food and entertainment, Kennedy and Keeghan look forward to the dancing! Oh... so... much... dancing! LOL

Here are some pictures from our night! Thanks to all the MANY, MANY volunteers who made this night possible!!

 Kids with Jack Sparrow

 Keeghan's dragon face painting

 Kenn with two of the Bronco's cheerleaders... as a newly self-proclaimed Bronco's fan, she was THRILLED about this! haha

Dancing away! LOL 

 Kennedy and Lila dancing

 Goofy girl! haha

 Having a conversation... over the super loud music! ;) 

 Kass - hanging out 

 Crazy boy! :) 

 Me and Linda

Kennedy and Stacy

 Kenn and Lila - waiting for the limo

 Riding the train

 Riding the train... 

 Linda and Lila

 Lila and Kennedy on the limo

 Sisters :) 

 Going on a limo ride


 Kennedy with her dancing friends lol 

 She found a mermaid!!

 Kennedy and Kennedy! - Super Survivors!!!

The Kennedys - Miracle Parties throughout the years. :) 

Until Next Year... :)

Thursday, September 19, 2013

Carter's Story

*Editor's note: I have been blessed to know and love a few of the kiddos whose stories have been shared on my blog during Childhood Cancer Awareness Month the last two years. Carter is one of those kids. He has been in class with Kennedy for the last two years and when he was diagnosed last Spring, my heart sank knowing the journey that he was about to begin. Kennedy, on the other hand, took the news of her friend being sick in stride. "Oh... 'kemia" she said, "I had that. I'm fine now. Carter will be too." She was able to go back to school and reassure all their friends, who were just learning that Carter was sick, that eventually he would be ok just like she is now. That childlike faith is what I strive for everyday. I feel blessed to be able to walk this journey with Carter and his family and honored to be able to support them however we can. Right now Carter and Kennedy's class is doing a fundraiser to raise awareness and help families who are dealing with childhood cancer. If you would like to donate to a great cause, please check out their website! We love you, Carter! Keep kicking cancer's butt!

Super Carter’s Story…

Carter is a typical 8-year-old kid. He loves LEGOS and being active – playing basketball, running cross-country, swimming, riding his bike, and playing with his sisters and friends. As his mom, I would describe him as fun, sweet, thoughtful, kind, smart, responsible, loud, friendly, and compassionate. Carter is very personable and has made many friends with other children fighting cancer, his amazing nurses and wonderful doctors at the hospital.

Carter’s journey began earlier this year when flu symptoms would not resolve, and his doctor ordered additional tests and x-rays, which discovered a huge mass in his chest and the diagnosis of T-cell acute lymphoblastic leukemia. Our family was told treatment would last 3 ½ years and chemo must begin immediately. For the last 4 months Carter has undergone 8 spinal taps, a couple bone marrow aspirations, dressing changes for his PICC line (now he has a port), surgery, countless pills and steroids (as many as 22 in one day!) with awful side effects, countless blood and platelet transfusions, more chemo and different types of chemo than I can remember, radiation to his brain, many long hospital stays, fevers, upset stomachs, extreme fatigue, CT scans, echocardiograms, and more needle pokes than most people will receive in their entire lifetime. He missed his last month of second grade and pretty much the first month of 3rd grade. He has missed out on lots of fun due to chemo, appointments, feeling very bad, and having a very low immune system.

Through it all Carter is an inspiration; a beacon of hope, courage, and love. He is the true definition of a hero. Carter wakes up every morning with a smile. He is strong, brave and more courageous than any man. That is not to say that there has not been tears because there have been plenty, but he picks himself back up and goes back in to fight and kill all those cancer cells, "those bad guys!” Although this is an extremely difficult time for Carter and our family, he still finds plenty of reasons to smile.

During one of his recent hospitalizations, Carter had a traumatic experience with getting his port accessed. Because he had been in the hospital a week, they needed to de-access him (take the currently needle out of his port in his chest) and replace it with a clean one. Carter’s nurse had trouble getting the new needle in; it would not draw blood back. She had to press on his port and try to get it in better, only to have to take the needle out and try again. This was very painful for Carter, it was heartbreaking to watch. His nurse felt so bad, she called his favorite nurse from the infusion clinic (the chemo clinic) to come and get Carter accessed, luckily she was able to get it right in. Carter’s original nurse felt so bad, she came in and apologized to Carter. What did he say? He said, “Don’t worry, it is okay, everyone makes mistakes.” I was so proud at that moment, as I don’t think I could have said that.

Carter has a long road ahead of him, but we have no doubt that he will prevail. He will kick cancer to the curb and he will continue to do great things and make a difference in this world. Carter is a superhero like no other!

 Carter Gates
Acute Lymphoblastic Leukemia

Tuesday, September 17, 2013

Dylan's Story

Renee asked me to tell a story of one of the strongest people I have ever yet met, my son Dylan.

I will try and keep it as brief as possible.

I can't tell the story without a little history of my family and myself.

I became a father at the age of 19 in 1991 with my oldest son Nathan. As a VERY young and new father and husband I had no clue what I had gotten into. Luckily, I had the best wife anyone could ask for Tracy. She put up with all my immaturity and together we started our family. It was a challenge but we were in it together and we did the best we could and that turned out pretty well! Nathan is and has always been someone I can take pride in . He makes us both happy with his great personality , bright perspective, and one of the smartest fellows I know!

We had our second child born on June 24, 1996. When he was born he decided to give us a BIG surprise!

Dylan had Down's Syndrome.

We, the whole family, were in shock. We had no idea anything was “wrong”. We had no idea what exactly Tristomy-21 was, we had no idea what a treat he would be! After being told all that....Dylan was taken from our local hospital to a Pediatric Hospital . Tracy didn't even get to hold him in her arms before they took him in the ambulance. I don't know how I can explain the anguish I felt for her. No one should ever be put through that.

Dylan was released and went home with a clean heart! We were so happy ! A few days later we headed back because he needed surgery. He had a Duodenal Stenosis. How crazy those days were . We were so scared and thought the world was ending. It was repaired and we were back home within a few weeks.

I personally had never been around many folks with Downs. I didn't have a frame of reference. I only knew that this little fella depended on me for his life. HOW could I let him down?

He became so precious to me. His snuggles were different. It was obvious to me really quickly that he was a unique little fellow!

We had our times during many years, I am one that believes in traditional parenting. NOT the new age time out stuff. Dylan and I shared a many days butting heads! I remember him sitting in a high chair and knocking off a sippy cup because he was mad! I also remember him getting a pop on the leg for that! I don't regret that.

He became a HIGH functioning child and learned to speak and collaborate with his class. He was quiet until he knew you, but you were a member of the “special club” when he trusted you! Dylan would open up and NO ONE ever forgot when Dylan admitted you into his heart.

Dylan was a special child because of his personality. Downs just made him a softer hearted individual. I really believe he “felt” more than most people. His heart was so open to the emotions of others. When he hurt someones feelings and knew it, it hurt his heart and he had to let them know he was sorry.

I have a special place in my heart for all Downs children because I believe they know so much more about feelings than we non Downs do. We should learn from them.

In November of 2006 In November, he started being somewhat lethargic, running a low grade to moderate fever, not eating as well, having joint pain, and having joint swelling. After several trips to the Doctor, several blood work ups, a trip to a pediatric immunologist, and a CT scan (which all showed normal), a complete diagnosis was not positive. We were told possibly he had juvenile onset rheumatoid arthritis in May of 2007, and started treating as such.

On the night of August 7th 2007 Dylan had a severe chest pain. After several more tests, another CT, a biopsy, and a bone marrow test , we finally had a definitive diagnosis on August 7th, 2007. Dylan has Nodular Sclerosis Hodgkin’s Lymphoma.

In January 2008, Dylan went into remission. However, in August 2008, he relapsed once again. This time, he had to undergo a more intensive chemotherapy, an autologus stem cell transplant in February 2009, and radiation. When we thought we were finally finishing treatment, Dylan developed Post-Transplant Lymphoproliferative Disorder, which was a different form of cancer due to transplant. He underwent another 6 month round of chemo for this.

He went into remission in December 2009 and stayed in remission for a full year. Then in December 2010, he started running fevers again. Of course, this caused us great fear that his cancer had come back again.

However, after several tests, it was determined that he had histoplasmosis, which is caused by a bacteria found in the dirt. People with suppressed immune systems tend to develop this. It put up a red flag to his transplant doctor, who said that Dylan's immune system should be built up from his stem cell transplant enough to fight off this bacteria. After further testing, it was determined that Dylan had an immune system deficiency. His immune system started shutting down when he reached about the age of 10....which is what caused all of the above to happen.

We took all that in stride. We watched a strong child fight for his life. Dylan did everything he could do. The whole while he showed us how to be strong, love, and try to be ourselves.

He developed something called chorea in 2012 and it continued to devastate his central nervous system until he passed away on August 7, 2012.

I know it is strange to learn life lessons from a child.

I want everyone to know that I thank God for having him as a son. He has taught me so many lessons I would LOVE to share, if anyone wants to know!

Dylan never asked for anything besides macaroni and cheese.... He only wanted us to all work together and keep stuff working without too much interference. He didn't Like problems!

Nodular Sclerosis Hodgkin’s Lymphoma
June 24, 1996-August 7, 2012

Sunday, September 15, 2013

Olivia's Story

Olivia is a beautiful four year old little girl with Down syndrome. We first noticed that something wasn't right with her on Easter weekend 2012. She didn't want to eat much, was running a low grade fever and only wanted to be in mama's arms. She seemed to whimpering from pain quite a bit. We thought she was teething as her fingers were always in her mouth. I finally had a blood test done about a week later (the symptoms were on again off again) when I noticed that Olivia did NOT want to walk, and this is a girl that LOVES to walk!!! When we got the results of the blood test we learned that it was leukemia. She has ALL Leukemia.

This type of cancer is treated on an outpatient basis, but may require a few short hospital stays depending on how well she responds to the chemotherapy. The treatment lasts for two years and two months. She currently has 10 months left of treatment and will finish on June 29, 2014! She has done very well with her treatments and has not had any hospital stays...thankfully! Olivia has been one of the lucky few who has done well with chemo treatments and we have not been back in the hospital for fevers or infections. Having said that hasn't been an easy road. The chemo treatments have made her more delayed. She used to be only about one year behind and now she is two years behind and three years behind in her speech. The steroids make her very cranky and she will cry for no reason! She often times doesn't know what she wants and grinds her teeth terribly. It is difficult to watch. The first thirty days of treatment were the worst! She was irritable and inconsolable. I can't wait until she is off treatment and can really blossom and not be affected by chemo. In addition, I am too scared to put her in preschool because I don't want her to get sick and then she could end up in the hospital. She is so ready for school too.... Cancer sucks...

Acute Lymphoblastic Leukemia