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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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Post Surgery Update

What an emotional day yesterday! Lauren's port removal surgery went as well as to be expected. She, as always, was amazing during prep/recovery and even in the room before anesthesia. They were able to get it out without any complications and after about an hour or so she woke up with a good appetite. We have been home allowing her to rest as needed but to our amazement has been doing her best to keep up with Armando. We're convinced that there is nothing that she can't handle. We are so appreciative of her strength and all the doctors, nurses and surgeons that have gotten her to this point. We will always be indebted to them for our baby's health 💛.

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Scar of Strength

Lauren has fueled up for the next chapter in her battle. This morning she goes in for a minor surgery to remove her port. For those not familiar, a portacath or port, is a medical device implanted under the skin that is directly connected to a vein. This makes the administration of chemo and drawing of blood much simpler. It's another signal (last major) of the end of her treatment so it is another "good" milestone. We are definitely excited but still nervous and prayers and thoughts are once again requested. 
Today she will receive a scar on her chest, close to her heart. She will forever wear that scar as a constant reminder of the most important battle she has or will ever face. I hope that she is never insecure or embarrassed by this scar. I hope that she will wear it with pride. I hope she realizes that it represents the strength she has but more importantly the strength she gave to others.

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First Post-Chemo Checkup

Today Lauren goes to the clinic for her first post chemo checkup. They will draw blood and check her counts. The anxiety is pretty strong right now as we can't help but to be nervous. For over 2.5 years chemo has been keeping the cancer away and now there is no more chemo. Such a paradox, a chemical that could kill her actually kept her alive.... Lauren has been doing great since. She has a ton of energy, laughs so much and is so happy. We are pretty confident that all will go well today, just anxious. Once we get the good results back Lauren will be able to ring the bell. This is a huge milestone for her as it indicates the end of her treatment. We will be sure to post the update tomorrow. In the meantime a small positive thought or prayer is requested. Again, thank you all for the support.

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LIVFREE at the Zoo

Wow, what a day. We cannot thank the 300+ people that came out in the rain to support us as a family and as an organization. We are going to be taking a short break from fundraising and we are going to focus on helping families. To date we have assisted 50 families, all thanks to your continued help and support. We do have our second annual movie night already set for September 16th. We promise that will be a blast!

As for us, we are going to be finding our "new normal". We have lived the life of daily chemo, weekly doctors visits and everything else that goes along with cancer treatments for over two years. We are so happy for Lauren to be done and we are looking forward to this new chapter.

 

Our good friend, Ryan Kassim put together a great little collection of our celebration at the Zoo. Be sure to take a look at all the special moments!

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Last IV Treatment!

 

Our baby is flexing on her IV pole! Lauren had her last dose of vincristine today. It's a huge milestone as it is her last intravenous chemo. We are very overwhelmed by emotion. It has been the fastest two and a half long years ever (it makes total sense if you lived it). There is so much to reflect upon as so much has happened. Cancer has changed our lives in so many ways and although we wish Lauren never had cancer, we are grateful for all the blessings it has given us. 
#cancerisntwinningoverhere

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Three More Weeks

Three more weeks until we are done with mercaptopurine. 
Three more weeks until we are done with methotrexate. 
Three more weeks until we are done with vincristine. 
Three more weeks until we are done with dexamethasone. 
Three more weeks until we are done with Pepcid. 
Three more weeks until we are done with lactulose.
Three more weeks until we are done with all this chemo, God willing.

Also, three more weeks until we celebrate at the Zoo! Be sure to join us.

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If you're going to have chemo...

This week has been a complete whirlwind. There have been some really high highs and some pretty tough lows. Being apart of this community has definitely been the most intense emotional rollercoaster you can ever imagine. We realize that we have been blessed this far with Lauren's response to treatment but we always live with the fear of bad news. Though we hope we never get that news, the reality is that there are families that do. We take comfort in knowing that those families are rooting for us as much as we are for them, but it can still be hard to share our progress. 

Today was a huge milestone as Lauren had her last lumbar puncture. This is the hardest procedure for us as we witness her get put under sedation, fluid drawn from her spine and then chemo administered through the same needle. We keep talking about how strong she is but you really have to witness this to truly understand her strength. When she woke up, she didn't miss a beat and enjoyed a tea party and then some pizza. I swear you'd never know what she had just been through. 

Pictured below is Lauren as stylish as ever. We've said this before but if you're going to have chemo you might as well do it in style. We are so happy this is all coming to an end but we are also keeping our thoughts with the other families still fighting.

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St. Patricks' Day

 

St. Patrick's Day is a huge milestone for Lauren. Two years ago she was declared in remission, meaning they didn't detect anymore cancerous cells. Leukemia is different from most cancers as treatment last way past remission. She has been on chemo daily for the last 2 years and two months. She has only one more month of chemo treatment and hopefully, god willing, she will have beaten cancer for good. It's been a very long road so today is a cause to celebrate. As she gets older St Patrick's Day will have a great meaning for her and I couldn't think of a better day to celebrate.

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The past year

Lauren,

February 11th was the 2nd anniversary of your diagnosis. Another year of your fight has passed. It has been such a long road but there is light ahead. In April, you will be done with all the chemo and we cannot wait. You have been amazing throughout his whole process, handling every instance with a smile - that beautiful smile. We are aware that the fight isn't over but you've conquered some tremendous obstacles in your short life. We have the confidence that you will continue to fight in every aspect of your life.

So much has happened this past year. Your beautiful blonde hair has grown back and we love it. You gave up your pacifier (chooch) with out too much of a battle. You started school which really took a toll on us, but as usual, it didn't bother you too much. The germs, ugh, they drive us crazy and that was the hardest part. You have a "boyfriend" or two or three. You've started to open up more with other people and are letting them see your light. For a while only mom and dad saw it and we couldn't wait for others to see it as well. Then there is LIVFREE. Being a part of this community has opened our eyes. There are so many, too many, families battling cancer just like us. This year we started an organization in your honor. To date we have helped 43 other families. We cannot explain how much of a big deal that is. Mom and Dad get the credit but that really belongs to you. That brings us to our last point from this year...

You have been such an inspiration to so many people. The outreach has been tremendous. We continuously get letters or messages telling us that your strength has helped them get through a tough time or that they were able to put things into perspective after hearing your story. There really isn't a better compliment than that.

We look forward to you ringing the end of treatment bell! We promise to have a HUGE party to celebrate.

Love,

Mom and Dad

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Tea Party

Honestly, I couldn't tell you how many times she has been put under anesthesia. I couldn't tell you how many times she had a needle put into her chest to access her port. Nor could I tell you how many times she's had her finger pricked to draw blood. The number of bandaids must be ridiculous. The amount of medication is astounding. The belly aches, the tears and the pain; I can't paint that picture for you. What I do know is that childhood cancer is no tea party. But Lauren, she makes it one...

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Running through the halls

Shortly after our post last night, Lauren spiked another fever of 103.6 which lasted a better part of the night. Ice packs accompanied by Tylenol finally brought down it down at 4:30am. She has been fever free since and her heart rate has maintained between 111 and 120.

She woke up in great spirits and with quite the appetite. She also was energetic enough to walk about the room. A complete 180 from yesterday which makes us (and her doctors) so happy! To add to a great day, Santa personally delivered a present to her thanks to the help from her favorite nurse, Ms. Kait - in the doorway 😊.

After the mid morning rounds, the Dr.'s determined that she was well enough to go home. We are to keep up with the antibiotics for ten days and Tylenol as needed for the next few. She was so excited to go that she ran through the halls, literally.

Thank you everyone for your kind words and prayers for our little Angel 💛.

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Energy to Color

And we're back....Lauren spiked a fever last night and we had to bring her into the ER. Though they were able to bring down the fever with some Tylenol, a bag of bolus and a dose of antibiotics her heart rate was still very high as was her respiratory rate. They requested an X-ray which showed a small matter next to her heart which they believe is just some congestion. With all of that, they suggested we stay overnight to continue to monitor her. At 4am she spiked a fever again and breathing hadn't gotten any better- actually they heard some wheezing during rounds around 7am. 

They are treating her for pneumonia as they believe the scan showed early signs of such- though it may be just a bad cold she's fighting. They prefer to be safe than sorry. The nebulizer helped with opening up her lungs to relieve the stress she had with breathing. Additional tests were run at this time for the most common virus'. 

At 12 this afternoon she spiked another fever of 104.7 - they are giving her Tylenol around the clock for that. We were also given the news that she tested positive for RSV so we at least know the source at this point. We will receive the second dose of antibiotics shortly.

She is resting a lot as she has had little to no energy all day and has barely eaten anything. Just recently the fever broke and she is down to 98.9 and heart rate is down to 140. She even had enough energy to color for five minutes or so! 

She has a pretty bad cough still but they're hoping the fluid (she's on a continuous drip) will break that up in due time. Duration of our stay will depend on her fever/ heart rate. Hopefully we are out by the weekend. 

As always, positive thoughts are appreciated!

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Fingers crossed!

Lauren had her scheduled chemo (vincristine) yesterday and did great! Her counts have maintained over the last few visits and they have bumped her back to 100% of her oral chemo, which we are not exactly happy about. She has been so energetic lately and it's so wonderful to see her that way. This week is tough in general due to the chemo drip and five days of steroids, we just don't want to lose that smile. Fingers crossed that her body adjusts quickly...

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23 families and counting!

Although we haven't been posting much we have been hard at work. We have been planning for our next event in January, which we believe will be a ton of fun. Mostly, we have been putting packages together for families. Last weekend we delivered to our 23rd family. We appreciate all the support from our sponsors and our donors and we want you to know your generosity is helping families during their tough time. Here is what our packages look like.

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Grease Birthday Party!

We capped off Lauren's birthday week with an awesome birthday celebration. We dressed up as the cast of Grease and Lauren was Sandy. She had such a good time celebrating with her cousins. What nobody knew is that Lauren had spent last night in the ER. One of her chemo medications made her spike a fever of 104 and we brought her in right away. They gave her fluids and Tylenol and we thought for sure we had to cancel the party. To our surprise her counts were the highest they have ever been and they let us go home. Around 4am her fever broke and Katrina and I had decided that we were going to call everyone in the morning and cancel. When we woke up at 9am Lauren popped up and started asking about her party. She was a brand new kid. The fluids and Tylenol had done their job. Last year we didn't have a party as she was neutropenic and couldn't be around other kids. We saw the look in her eyes, she wasn't going to let anything stop her from enjoying this birthday. So, here she is totally rocking her Halloween consume. She refuses to let the side effects from chemo hold her back. People talk about how much of a fighter she is. Our perspective of her fight is special, we have the best seats in the house and she still amazes us on a daily basis.

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Happy Birthday Lauren!

Lauren turned 3 on October 9th! Birthdays have so much more meaning now. She is getting so big, smart and fun. Next weekend is her big party but we think we should celebrate all week long.

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