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Thank You Make-A-Wish!

Two weeks ago we celebrated Lauren’s 5th birthday at Disney world thanks to the great people at Make-A-Wish Connecticut and Give kids the world. We visited 9 parks in 6 days and walked over 70 miles. I was apprehensive in the beginning about her using her wish to go to Disney. After experiencing it I wouldn’t have had it any other way.

One moment in particular will be forever ingrained in my memory. Lauren was able to receive a princess makeover at the Bibbidi Bobbidi Boutique. There were dozens of people packed into this room, kids and parents were whirling around getting done up. You could smell the food cooking at Cinderella’s Castle. When it was her turn, Lauren took a seat in the far corner to be transformed into a princess. As the stylist painted her nails and braided her hair, Lauren sat and the most beautiful smile beamed across her face. She lit the room. I’ve seen Lauren happy, but not like this. I’ve always called her princess but this day she WAS a princess.

All four us were touched by the magic of Disney. Words cannot explain how important it was for all of us the share that experience, together.

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Lauren's 5th Birthday!


Birthdays are celebrated to symbolize great milestones. For our family birthdays haven’t really been celebrated, they have been reminders; how much we’ve been through, how tough we’ve been and how lucky we are to have another. Today, Lauren’s 5th birthday, is different. Today we will celebrate BIG!

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Power Racing Series at World Maker Faire

Our supporters are racing in this year’s Maker Faire. They have built a custom electric racer and chose to represent LivFree! They are doing a great job as they place 2nd in their second race. We are so happy they are doing so well and representing LivFree on Pediatric Cancer Awareness Month!!!

Check out our Facebook page for videos!

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Movie Night 2018

Another great Movie Night event in the books! We thank the hundreds of people that came out to enjoy a quality family day. Again, we wouldn’t be able to pull it off without our sponsors! The town of Trumbull was very supportive especially when we needed a rain date. The whole LivFree team, especially Kathy Harvey, who helped secure great relationships with our sponsors. The real unsung heroes were the face painters, these ladies worked from start to finish non-stop. DJ Larry was great all day long as well. To Bela Sera and The Green Grunion, thank you sincerely for pulling this off in such short notice. 

Be sure to keep checking in with us for updates on event and also how we are doing with assisting families. We definitely have some really cool things coming up! 

Again, thank you all so much.

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Dexter

Today I wanted a Daddy day with the kids so I decided to take them to the movies. We got there a little early so we sat in an empty theatre just the three of us, me in the middle, laughing and joking. Lauren looked at me and out of nowhere she said to me “daddy, can Dexter some back from Heaven?” Dexter was our dog and Lauren and Armando’s “big brother”. We had to put him down last year and the kids took it pretty hard.

I explained that once you’re in Heaven you don’t come back. I was caught off guard and wasn’t sure how to respond. I usually give Katrina the look and she handles these questions... I wasn’t prepared for what came next.

“I almost went to heaven, right Daddy? When I had cancer? But I beat it up so I don’t have to go to heaven right now, right?”

Crushed. I looked her in the eye and said that’s right baby, no heaven for you just yet. I had no idea what to say. No idea how to even approach it. My heart was crushed. We always knew what could have happened with her cancer. Hearing it from her though, it broke my heart and reminded me just how lucky we are to have her, how very lucky I was to be able to be in a movie with her and her brother sharing laughs and popcorn. Luckily the lights dimmed and they didn’t have to see my tears. Tears of sadness, joy, anger, gratefulness. All rolled into one.

#livfree #fun #cancerisntwinningoverhere #pediatriccancer#childhoodcancer #cancerawareness #cancer #cancersucks #family#familytime #events #helpothers #smile #oncology #chemotherapy#chemo #health #charity #givingback #leukemia #survivor#nonprofit

(She loved her Dexter and he loved her even more)

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She "Got This"

 

Lauren had her check-up today to make sure her blood work was clear. She is 14 months removed from her chemotherapy so we have blood work every two months. It never gets easier for Katrina and I as our anxiety goes through the roof. But for Lauren it’s very matter of fact. Today, for the first time in 3.5 years she sat all by herself to get her finger pricked. She usually always sat in daddy’s lap while I held her tight. Seeing her do it by herself made me proud but also made me realize that she “got this”.

 #livfree #fun#cancerisntwinningoverhere #pediatriccancer #childhoodcancer#cancerawareness #cancer #cancersucks #family #familytime#events #helpothers #smile #oncology #chemotherapy #chemo#health #charity #givingback #leukemia #survivor #nonprofit

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Three Years Ago!

Where it all began... Three years ago we had an idea that blossomed into LIVFREE. TheSportsCenter Connecticut was generous enough to hold a fundraiser for our family to cover expenses of Lauren’s medical bills, we decided to pay it forward to another family in need. The rest is history...... “Feeling so blessed!!! At the Vieira's fundraising event I was the first recipient of their fundraiser and it was all so I can make up for lost time with Jason. Anyone who knows me knows that the separation from Jason was the hardest thing I dealt with this past year. Harder than the cancer, side effects, infections, kidneys failing, surgeries, amputation, septic shock, etc!!! Being away from my baby was the hardest!!! I now have memberships for the aquarium, chileren's museum, can go to Chelsea Piers sports complex with him, can go out to eat with him, go to the movies, and my baby will do a summer camp session at Chelsea Piers also!!! 😊❤️” #livfree#fun #cancerisntwinningoverhere#pediatriccancer #childhoodcancer#cancerawareness #cancer #cancersucks #family#familytime #events #helpothers #smile#oncology #chemotherapy #chemo #health#charity #givingback #leukemia #survivor#nonprofit

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Ronald McDonald House

 

We are on our way to cook lunch and supply the Ronald McDonald House with pantry goods. This couldn’t have been done without all of our supporters. Here is a photo of all the donations made via Amazon. Thank you all again!

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80th Family

Today was a HUGE day for us as we were able to provide family fun to our 80th family. A couple of weeks ago two lovely ladies threw a Gala for Gold and raised funds for LivFree. Katrina and I promised that we would use those funds for a very special family. This morning we fulfilled our promise and went to LaGuardia airport and picked up a family that flew into NYC from Minnesota!!! They will be spending the next few days in New York and seeing all the beautiful attractions.

Their eldest son was diagnosed with Leukemia for the second time. On March 1st he finished a 6 month isolation after receiving a bone marrow transplant from his younger brother. Due to his treatment, he missed the chance at a class trip to NYC. Now, just a few weeks after his isolation, he is now in the city with his whole family!

We could not have done this without the generosity of so many wonderful people. We will post more updates of their trip soon! Thank you all so much!

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Gala for Gold!

Wow, what an incredible night, I am in total awe of what is taking place for livfree. Just two years ago we were just two parents fighting cancer with our baby girl. Last night we were attending a gala in honor of livfree. It’s has been an incredible journey to say the least. We started out with what we thought was a crazy goal of helping 100 families fighting pediatric cancer enjoy family time. And now we are steadily approaching on that goal. This weekend we will assist our 80th family and it couldn’t be done without the help of our supporters. Over 120 people came out to support LivFree and we are beyond humbled.

Thank you and congratulations to Kristen and Amanda for such a great event. You guys knocked it out of the park. We promise that every ounce of hard work that you put into that event will go towards helping families in need.

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Three Years Ago

We brought Lauren in to her pediatrician because of some bruising. We weren’t overly concerned, kids get bruises. The pediatrician shared our sentiments but had us go to the lab to get some blood work anyway. As I waited with Lauren in my arms patiently, I saw the reaction from the technician. She turned ghost white as she reviewed the results. She printed them and struggled to put them into the envelope as she was nervously shaking. She called our pediatrician and he told me that I had to bring Lauren to the emergency room at Yale. 

This was the very beginning. I picked up Katrina from work and headed up there. I couldn’t muster the courage to tell her that it was serious, maybe I didn’t want to think that it was serious. I down played it, but I knew it was serious because of the technician, her look will stay with me forever. 

Hours passed (maybe they were minutes, there was no way of telling because our world had stopped) and in walked an oncologist. I remember thinking, “what in the world is an oncologist doing in here, kids don’t get cancer.” I was wrong, so very very wrong. Lauren, our baby, had cancer at just 16 months old. 

For me, everything became a blur. The nurses and doctors were in and out of the room, Katrina and I hadn’t slept or eaten. It was a complete whirlwind. One thing I do remember was sitting in the room, I put a pillow over my face and cried like I’ve never cried before. It didn’t last long, but I remember screaming. I lifted my head and looked to my left and I saw her face. With lines coming out of her and blood transfusions pumping into her, Lauren looked at me concerned. Not for herself but for me. It was that exact moment is where I had a paradigm shift.

We often talk about Lauren’s strength but there really are no words to describe. We witnessed her endure things that no person should ever have to. She was always so matter of fact about everything. She rarely gave us any trouble with medicine or procedures (although she HATED bandaids or tape being pulled off). I can go on and on and on.... 

Now she gets monthly check ups for blood work (to make sure it hasn’t come back). They are debilitating to Katrina and I. There’s always that fear of relapse. We get nervous at any fever, sign of tiredness and bruises... those damn bruises.

We can’t say enough about how proud we are of Lauren. At just 16 months old she took that part of her life and courageously faced it. Although we are never out of the woods with this whole cancer thing, we are happy to have closed the door on it. Now, at 4 years old, we know she can tackle anything and we look forward to the next door for Lauren to go through...

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Two Years Ago

Katrina’s letter to Lauren two years ago....

Dear Lauren,

A year ago this evening your father and I laid on our respective cots in your hospital room as we watched you take transfusion after transfusion anxiously awaiting morning so we can have some answers. Seeing that our only options were a rare virus or Leukemia based on your original blood work, we prayed hard that night that the C word wouldn't be uttered the next day... but it was. Our world was rocked. Our Angel, the sweetest little girl was facing Cancer. I felt my heart skip a beat and my legs give as the Doctors laid out your treatment... And the urgency, that's what killed me. You were just twirling around the living room to Mickey and now we're sitting there scheduling your first surgery. At 16 months old, without even knowing it, you were traveling down what may be the toughest journey of your life. And with every new medication/procedure, you haven't lost your smile- I love you for that. Now at two, you're stronger than most people I know, including myself. You actually had to hold my hand for my flu shot - thank you 😊.

People ask us all the time how we can handle going through this, but we know that we're just there for the ride. You have control of the wheel. And when it becomes hard to manage, we hold you a little tighter and kiss you a little more. My hope is that you look back at this one day and realize what an amazing woman you are. You have touched so many lives already, and you can barely speak. I can't wait to see what you do once you're writing!

So for all the scars you have to bear, wear them with pride. It's a reflection of how strong you had to be to beat cancer!

Love you muffin 💛

Mom

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Happy Birthday Peyton!

The world is definitely in good hands. The kids just get it when it comes to helping others. Peyton is the daughter of a Marine brother of mine, that I served with back in 05-06. He had followed our story and shared it with her. She then told him that for her birthday she wanted to help our cause and donate to help kids battling cancer. Well she had her 9th birthday party yesterday, and true to her word she has raised enough money to send two families to Disney on Ice next week. Thank you Peyton, you have truly made an impact on those in need. Happy birthday young lady, and thank you for being so selfless. Please take a second to wish her a Happy Birthday.  -Daniel

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Happy 4th Birthday Lauren!

 

Our baby girl is 4 today!!! She has been through so much in her short time but she has been an absolute inspiration to many. We are truly blessed to be her parents and to be able to witness such strength. Her birthdays were never guaranteed so we have a deeper appreciation for them now. 

One day when she is old enough we hope she will go through this page and witness her own journey. So if you will, please leave a quick note below for her to read at a later date. We will also leave you with some words that have changed our world...

You never know what the future holds so you should hold the ones you love extra tight. Do the things you've wanted to do and smile often. Find the blessings in everything you encounter. Do something nice for someone and be the change you want to see.

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Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month. We will never forget the day the Dr said those haunting words, "your child has cancer." If you've never been apart of this community then you'd almost never think about it, we didn't. We couldn't believe it, we didn't know things like this really happen. We saw commercials on TV but never thought they actually happened in real life. Well, it does. Kids get cancer frequently, a new child is diagnosed about once every three minutes. 

We are trying to combat this disease with smiles. We know how important it is to keep the family together and as close to their "normal" as possible. To put our own unique touch on raising awareness we will be hosting a FREE and open to the public movie night on September 16 in Trumbull. You can find more information on our Facebook page our our website. We would love for you to join us. 

This month we will be sharing some of the photos of the young kids and their families that we have had the honor to have met during or after their battle. You will see how bright their smiles shine. 

We will start the month with the inspiration behind LivFree, Lauren. This was her first check up since ending her chemotherapy treatments. She was showing us where they had pricked her finger to draw blood. We saw it as her telling cancer exactly how we all feel about it.#cancerisntwinningoverhere #livfree#pediatriccancer 

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Port Strong

A few weeks ago Lauren had surgery to remove her port and we were able to pick it up from the surgeons office today. Chills came over my body when I first held it. For those that aren't familiar with a port, it is a medical device that is implanted under the skin and is attached to a vein, close to the heart. This provided easier access for doctors and nurses to administer chemotherapy intravenously. They would simply give her an "ouchie" by pricking a needle through the skin and into the port. I've spoken before about the meaning of the port to us. The scar on her chest will continue to be a reminder of how strong she is.

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Siblings are also in the battle...

This picture represents so much to us. Lauren had the cancer but we all were there to fight it with her. We can't stress enough how much the family unit is effected when a child is diagnosed with cancer. Lauren's brother, Armando, was such a trooper. Often, we had to keep him away from other kids when Lauren's immune system was comprised. He missed out on many things but we did what we could to keep a sense of "normalcy". He was such a great brother while she was going through treatment too. He would always look after her and frequently ask questions. Although he was young, he understood that Lauren was sick and he always cared for her. He helped keep her morale high and we believe that he played a major role in helping her throughout treatment. This is why LIVFREE focuses so much on the family. We know that siblings are also in the battle.... 

Photo credit: Sandro de Carvalho

#tbt #throwbackthursday #livfree #pediatriccancer
#cancerisntwinningoverhere

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