Category: Neuroblastoma

Precious Angel Bears - Eddie and Sofia

4/18/2014

Remember back to last month when we made Lucy's bunny?

We decided this was a great idea and that we would continue to do such gowns for the children that gowns were requested for, but unfortunately passed away before their gown was able to be made and sent to them.

The first of the three I have been working on is going to the Livingston Family in memory and honor of their son Eddie who passed away from Neuroblastoma in 2013.

His nickname was "Superman" and his gown was actually requested by a mutual friend of the family and myself. Isn't he such a handsome little man? I bet he is an even more precious angel - flying around with his cape and all...having all kinds of fun like little boys should!

We purchased the superman fabric, but two days after having his fabric Eddie passed away, so the special bear below will be headed to his family in Florida.

The second of the three is going to the Scott family in honor and memory of precious Sofia who passed away in March (on my little man's birthday actually) from complications with Spinal Muscular Atrophy Type I.

Her gown was requested by a friend of the family, who also asked that we still send her gown to them as a keepsake. Once again, we decided to make an angel gown with a bear to be sent to them.

And here is the beautiful princess Sofia.

Her angel bear and gown will be making it's way home this weekend as well. Her gown was completed (in her size), but wasn't able to be sent before we learned she had passed away.

So, we sized it down to fit the teddy bear, below is her angel bear. It didn't quite want to sit up on it's own - hence the kinda of squished look in the photo.

Will be working on getting the third one done and posted - it is such an honor to make this tributes to the families we've received requests for and while we weren't able to provide their child with a gown to wear throughout their journey, at least we now have a way to honor their fight.

To the Livingston and Scott families - we are still praying for each of your every day...and while the loss of a child is beyond all words and the hurt will always still be there in many ways, we pray each day you find a little more peace, a little more comfort and a little more love from those surrounding you in prayer.

Much love and many blessings,
Gracie's Gowns

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A Time to Remember - Two Years

3/25/2014

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This past weekend we celebrated our two year anniversary in making hospital gowns for children across the United States and around the globe. What a great accomplishment, what an amazing experience, what a blessing for my own life the past two years have been (even with the crazy times)...but we also took the time this year to celebrate the lives of the children we have made gowns for and remember those that have passed away over the past two years.

Each child we made a gown for that traded in their super hero capes for angel wings had a lantern with their name, date of birth, date the became an angel, diagnosis and anything else the family, us, or the person who purchased the lantern in their memory wanted to say on it.

This year we released 45 lanterns - there were a few duplicates from where Gracie's Gowns had a lantern for the child and someone else wanted to purchase a lantern in memory as well, but overall there was one lantern per child. We had a few lanterns as well for children that we did not make a gown for, but were warriors as well - and we gladly added remembering their courage, strength and smiles to our ceremony.

Due to some weather related issues, we started later, but lanterns went in the water around 8:00 p.m. and the final one went out about 10:00 p.m. It was a very cold night, but watching the lanterns float in the water, seeing their reflections and just how they illuminated the water was breath-taking. Even more so, it was very, very emotional for me. Too have a visual of the children that lose their lives battling illness was heart-breaking...to know that this is only the children our organization has personally worked with in two years was devastating. There are so many more children who pass away each day, week, month and year that if we lit a lantern for each of them - we'd have to worry about them catching themselves on fire...there wouldn't be enough water for them all to float.

Watching the candles go out was probably the most emotional part of the whole night.

The lanterns - if the wind didn't blow them out - started to sink as they were wet. They are biodegradable, which is the point for them to get wet and sink/fall apart/etc. But as they did...you would see this light, barely above the water...like it was holding on unto the last second. Fighting until the very end to stay shining. They flickered, almost went out, flickered some more, got brighter and held on...and then once the water came closer, the flame disappeared without any warning. Just like our little warriors.

They fight until the very end, giving it 100% and then some - they have so many close calls and yet still manage to pull through and almost make a complete turn around and then...in a blink of an eye, they are gone.

Here is all of the lanterns we released out in the water - a beautiful tribute and celebration of their life.

Over the next few months, I will be creating an angels/in memory of page here on our website. It is my hope to get each child that we know has become an angel and learn about the ones we do not already know, on that page with their parents permission and help.

This will become an annual event for Gracie's Gowns - and for those that may not be able to attend at night, it is in my plans to do a balloon release during the day and make that a family event as well.

To view all the photos and lanterns from the event - you can visit this link below:

Gracie's Gowns Two Year Anniversary Lantern Release

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Fabric with Lots of Love - Lilahroo's

3/12/2014

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I have the wonderful opportunity to help out another great organization with some fabric to continue their mission. This time it is for Lilahroo's! Monica makes these precious, cozy, comfy and just wonderful blankets for children fighting medical challenges.

Do we have one? No - but my, oh my, you can just see from her photos and stories of children that have received one just how comfy they are! As someone who has made blankets for years, these are great quality, with wonderful fabrics. Cozy flannel on top and super soft minky on the back...perfect blanket ingredients!

Here is Autumn with her gown and Lilahroo while at her clinic appointment! Doesn't she look super cozy there?!

There website to learn more about what they do, who they are, how to support and even all the stories from families that have received a blanket from Lilahroo's is:

http://www.lilahroos.com/

They are also on Facebook at:

https://www.facebook.com/pages/Lilahroos/621064347914209

So since the kiddos and I are getting a lot closer to moving time and we've been holding onto some of these fabrics for a while now, without any requests to use them for, here are the cozy flannels we had to send Monica's way and even a minky fabric too:

They will be on their way shortly - as in probably tomorrow's mail!!
Can't wait to see what little ones get wrapped up in a cozy blankie made from these fabrics.

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CureFest 2013

11/2/2013

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On September 1st, 2013 - Gracie's Gowns participated in CureFest for Childhood Cancer on the National Mall in Washington D.C. with 52 other organizations. We banded together for the day and there on out to advocate for pediatric cancer awareness, research, treatments and cures.
The event was co-hosted by Journey 4 A Cure and theTruth365 - both have done amazing things for children battling and surviving cancer. They not only bring awareness and research funding, but they get to you on a personal level - they tell each child's story, I'm sorry I need to rephrase that - they have each child tell THEIR story, each family share their experience in ALL aspects of the cancer world, the successes and even more heartbreaking, the losses. They show the real statistics of the pediatric cancer world and if you read each of them...it will change your life forever.

At CureFest they had several speakers - parents, siblings, organization representatives...but the ones that shook you the most were the children.

Gabriella was one of those children - her speech had you laughing at one minutes, inspired throughout and in tears over the reality of what cancer does to children. Her speech was beyond motivational - there was no way you could hear her give "the cold hard facts" without making it your mission to do something to make a difference.

I am posting her here, because this past weekend, Gabriella lost her battle very suddenly to a brain tumor. She was diagnosed in November of 2012 and passed away October 26, 2013. She made the last year of her life a mission, a legacy even...to show Virginia and the world they HAVE to do something to improve the lives of children battling cancer, to "give them their childhood" to not only treat, but cure the cancers and in a way that doesn't rob them of the life they deserve. She raised funding for the Make-A-Wish foundation after she was granted the wish to go to Paris, France with her family - she knew that other children deserved the chance to have that one lasting memory with their families. She helped raise over $250,000 for Make-A-Wish in just one campaign.

Gabriella - know that you are deeply missed, but never forgotten! You have impacted and changed so many lives that can only be counted by God. Your parents will continue your work, those that are touched by you have been inspired to do the same as well. We may never do it as great as you did, but we will always try our hardest.

Throughout the day we gave away 50 goodie bags to those that stopped by our table - here is a collage of the items that were included. Knowing we were headed to this event, simply because it was local enough to us to do so, I invited other organizations and businesses to contribute to our bags and help spread the word about who they are and what they do.

Healing Helpers participated with their Heart Key Chains that they also embroidered a Yellow Ribbon on.

Socks4Surgery participated with their information and magnets.

Pink Door Fabrics sent some quilting bundles of fabric - Chelsea and Charlie have been amazing with donating and letting me purchase fabric at a lesser cost for gowns.

Bee Brave sent their mini stress relievers - which if you remember from our blog on them, they were made from scraps of fabric from our gowns.

We of course included our bracelets and information.

Hollie is a Thirty-One Consultant and contributed her information and nail files from Thirty-One Gifts, she also contributed our raffle item for the day too!

The Hensons contributed their information about Zeal for Life (will update this with their website, once I have it again, it is not with me right now).

Tricia contributed her Pediatric Cancer Awareness bows! One of which was given to Gabriella when we met her. She wanted it so bad and decided it looked great on her dress for the day!

THANK YOU to everyone who contributed to our bags! I know each item was well received!

One of the best moments was meeting The Beltran family! We had been working on these freckles for his siblings and when I found out that they were going to be at CureFest, I just knew I had to get them done.

Dominic was a local little guy that passed away from cancer - he loved superman so the fabric was made with superman and each one had a different color for the eyes, arms, legs and stomach and then we embroidered his name in gold.

This is the page they created for Dominic on Facebook and they are continuing their efforts for pediatric cancer research, awareness and advocacy!

https://www.facebook.com/Staystrong4dom

Here are the rest of our photos from CureFest for those who want to see some of them. I hope you enjoy them and check out all the amazing pages and organizations we've posted on the blog.

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Busy Buddy by Bee Brave

8/18/2013

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This amazing tray with a removable pillow that also becomes an amazing storage keeper is called a Busy Buddy - the amazing mother, daughter team behind it is called Bee Brave!

Our son David, was a recipient of a Busy Buddy - he is autistic (you can read back through the blogs and find his full story) and we spend two hours in the car every trip to therapy, every appointment, every specialist and every testing...which this summer was three days a week...for him, it is boring and frankly he hates it!

I cannot tell you how much he LOVES this - he can use it at home on his lap to color (we don't have much table space, and he can take it away from the girls), he uses it in the car, he can hide his most treasured possessions inside the pouch for the pillow (it has a zipper)...and well it worked great for mommy when I was laid up in bed and I was able to write out the new requests for gowns even.

David is pretty picky about what he likes - what child isn't right?! I had just made him a special little bean bag seat/ottoman thing...lol. And this was the fabric he picked out for it. The amazing part of his Busy Buddy, was I was able to send in this fabric and her mother made the pillow with it! David was so excited to see his "moo cows," "piggie" and tractor on the fabric.

Melissa went one step farther and matched the painting on the tray to the fabric as well! Once again - he was in HEAVEN! It was so great to see his face light up when it arrived in the mail and it was perfect timing as we had therapy the next day! But he wanted to take it outside to play with his trucks in the sandbox instead...lol.

So we compromised - he is David with his Busy Buddy!

He was allowed to take it outside with him, but it had to stay with mommy, I wasn't about to have sand start coming out the zipper pocket...lol.

He doesn't always smile, but he wanted to say "mooooo" as his picture was being taken. The boy loves cows, what can I say? He wants to be a cowboy when he grows up.

When I sent in David's fabric for his Busy Buddy we also went a couple steps farther and created a wonderful bond and work relationship on the Gracie's Gowns end with Bee Brave.

We sent all this amazing fabric over to Bee Brave to help make the pillows for other children, teens and adults that end up being on their sponsorship list!

Of course, it is mostly all scraps from gowns that have been made for children by Gracie's Gowns. Some of our gowns we have lots left over, and this is the case with these fabrics, but we also sent lots of smaller pieces to use as well for their mini stress relievers!

We filled up a diaper box of fabric and mailed it out to Melissa and her mom and something even more amazing is stemming from this too!

We are participating in CureFest 2013 in Washington D.C. - it is an event sponsored by The Truth 365 to bring awareness and support for Pediatric Cancer.

The event is on September 1st, 2013 and all of the participating organizations, work with children who have cancer, fund pediatric cancer research, promote awareness, etc.

Bee Brave - is sending us 50 mini stress relievers for our goodie bags to distribute throughout the time of the event! We wanted to help promote other organizations that are small like us, but work with children who have cancer, and just chronically ill children as well and let them not only put informational materials in our bags, but include a little item too!

Melissa sent me this picture of some of the ones heading our way here soon! All I can think of when I see this is the precious kiddos that received gowns from the same fabrics and it makes me tear up, knowing they have inspired something so amazing in my own heart and really and truly are the heartbeat that keeps Gracie's Gowns running!

If your organization isn't attending CureFest and would like to include an item and informational materials in our goodie bags, we are putting together 50 bags. The items need to be at my house no later than the 29th of August so I can get them put in the bags.

Direct sales companies are allowed to include an item, but I am only taking one representative per company - and you must include a sample item with your information. Please contact me BEFORE sending anything, just to make sure I don't have another representative already - and that I need to keep my eye out for a package - same with any organization.

To learn more about Bee Brave you can visit their
Facebook Page at (stop by and send them some love, Gracie's Gowns style of course):
https://www.facebook.com/beebrave2013

And their website is:
http://www.beebrave.org

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Brave Little Brayden

6/15/2012

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As I have the honor of making gowns for children across the United States battling cancer and other life-threatening conditions, my heart is heavy as I read about these conditions and the LIMITED amount of research and attention they tend to receive. It is my prayer that as my children grow older they will be the generation that finds cures and erradicates these conditions (at an affordable level as well).

The times my heart breaks the most, is when I read the stories, journies and battles of infants starting their fight at only a few weeks or even months old. I have learned to look at it this way ~ What is God's ultimate plan for this child's life? Who will they impact and whose life are they going to change in only the way the Lord can do? That being said I still cry, feel it is unfair and wonder why these things happen to such little children, or any child for that matter.

This month I had the joy of making a hospital gown for little Brayden, who was diagnosed in December 2011 with Stage III Neuroblastoma, he was just under a month old. Neuroblastoma is one of the rarer childhood cancers and one of the less researched cancers as well. There is roughly 650 cases a year (that number may have changed since I last looked it up, but I think it is still very close to it).

Neuroblastoma is very dear to me, because Grace (who Gracie's Gowns is founded in honor of), battled Neuroblastoma from 19 months old (official diagnosis) to just over 3 years old. This was my first up-front encounter with childhood cancers and greatly impacted my life throughout my pregnancy with our oldest and since...my daughter was only a few months only when Grace passed away. I pray many times that should she face any more obstacles in life, that she would have the smile, courage and optimism that Grace did to conquer them.

To learn more about Brayden and to follow his journey and fight against Neuroblastoma you can use either of the following links:

Facebook Fan Page:
https://www.facebook.com/pages/Baby-Braydens-Fight-With-Neuroblastoma/374681565883710

CaringBridge Page:
http://www.caringbridge.org/visit/braydenbrorson

Here is little Brayden showing off his hospital gown (he is the first one to try out and use our infant gown design, so I pray it is working well in the hospital and is soft and comfy for him.

Brayden ~ our family is praying for you and your family each day and night!

Keeping fighting and never give up! While this is a very large bump in the road and trial in life, you can kick it's butt.

We are following your FB Page and CaringBridge page and look forward to crying about the setbacks, but even more celebrating the successes with you!

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Precious Angel Bears - Eddie and Sofia

A Time to Remember - Two Years

Fabric with Lots of Love - Lilahroo's

CureFest 2013

Busy Buddy by Bee Brave

Brave Little Brayden

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