A Big Thank You..

Many of you have asked how are we doing, so I decided to post an update on the business  side of things.  


It is amazing the responses that we are receiving; you do really want to help Tyler and his family!  We have had responses from CA, NJ, PA, CO, AK, AZ, SC, and even Canada.  


Most of the page views are coming from Facebook.  So please keep reposting, you are making  a difference.  In addition, there is increased volume from the Mom In Management post from earlier this week.  Thank you to all the bloggers you have reposted on their pages as well.


We are close to $600 and our big goal is $3000.  I am planning to put a counter up this weekend to track the progress.  The raffle is scheduled for December 15 using random.org.  So let's see if we can get there together! 
With all my love,
Heather

The Blogging Community has Joined in Supporting Tyler

My friend Daria at Mom In Management posted this on her site and these wonderful Bloggers responded.

I am really grateful to all of these Bloggers for their help in supporting Tyler and Scraps of Love.  Please go visit and leave a comment thanking them for their support!

With all my love,
Heather

Giving Thanks when you are a 15 Year Old with a Brain Tumor

Written on November 23, 2010 by Daria

 

Do you remember being 15?
For me, the sky was the limit.  The world revolved around who kissed who behind the garage at so-and-so’s party.  SAT’s and sending applications to colleges were starting to loom on the horizon.  I was scaring the life out of my parents while learning to drive.   And I was cautiously enjoying the new to me, but ageless dance with boys that my teenage body had gained me entree to.
Now imagine being 15, but instead of worrying about who so-and-so asked to the Homecoming dance, you’re worried about whether you’ll fall down from a seizure while walking across the street.
Instead of thinking about college, you aren’t able to finish high school because your seizures are too severe and frequent they disrupt the rest of the class and you and they can’t learn.
Instead of learning to drive, you are worried about learning how to feed yourself again once the surgeons remove a part of your brain.
Instead of scaring the life out of your parents because you forgot to yield to other traffic, your parents are terrified that you won’t be alive next year.

This is Tyler’s Reality

Tyler is the nephew of a very good friend of mine.  

Scraps of Love

Scraps of Love is my friend Heather’s brain child.  She decided to make a homemade quilt and raffle it off to help offset Tyler’s non-insured medical expenses.    She has lovingly created the most beautiful and cheerful quilt I’ve ever seen.  It is pictured below.  The picture doesn’t do it justice – the colors are bright and happy and it just makes you smile to look at it.

How You Can Help

Let’s raise $3,000 to cover the upcoming deductibles for Tyler.   This won’t cover all of their needs.  It won’t help with Christmas presents, or food on the table, but it will take a huge burden off of Tyler’s family.
I have seen the greatness of the people in the blogging community and know that as a community we can do this!
I’m asking you to copy this post and add it to your site.  Help us get the word out any way that you can.   Repost on twitter, facebook, print a flier out and stick it on your company bulletin board – any means and methods that you have to spread the word.
Our goal?  To get people to buy a raffle ticket for this beautiful handmade quilt.  Direct donations are also welcome, of course.    A paypal account has been set up and can be accessed on Scraps of Love for Tyler.
Then please add your blog to this blog hop so we can see the power of blogging and recognize each of you for your help.  As a thank you, you will automatically be entered into my Vera Bradley giveaway if you leave a comment on this post with how you’ve spread the word.

Blog Hop

Quilt Update....

We made great progress over the weekend on the quilt top.  It is finished! Now we are working on the back piece, then the quilting and binding.  The target date for the raffle is December 15. 

Tyler's Story...

When Tyler was 9 he started having partial onset seizures where he remained conscious and fully aware of his surroundings. He had convulsions which usually lasted 1-1 ½ minutes. They wore him out, and he usually got a pretty bad headache afterwards. He endured many medications to try and control the seizures. At that point in time he was able to live a pretty normal life. Don’t get me wrong, the seizures were always on his mind, but Tyler was not going to allow this to control his life. His neurologist tried very hard to keep our hopes up that this was just a childhood seizure disorder and there was a strong possibility he would grow out of this.

Within the past year Tyler’s seizures have changed, progressing into Grand-Mal seizures. The first one of these seizures I saw Tyler go through, I went into a state of panic because I thought I was losing my son. He now experiences full body convulsions, loss of conscience, his eyes roll back, and his lips turn blue because his body is so tense he can’t breathe. It can take up to five minutes for him to regain consciousness and when he does, he does not know who he or anyone around him is. As a mother, this is the hardest thing I have ever faced.  The other change that happened in Tyler’s life was that he started high school. Tyler had experienced seizures at school before, but high school is very different. It was a difficult transition for Tyler to face.  No matter how much Tyler did not want this to control his life, he knew it would. Tyler is now attending school through a home-bound program, and has decided to put sports on hold until he is a little more stable.  

Andrew and Tyler

Tyler’s neurologist decided the changes with Tyler warranted a referral to the Children’s Hospital (CH) in Denver. At our first visit to the CH we were given a few different options we could try to control the seizures, but we were told the likelihood of those options working were slim. Dr. Knupp, his neurologist at the CH, thought our best approach would be to have Tyler attend an EMU (epilepsy monitoring unit) where he is monitored via EEG 24 hours a day in order to capture a seizure on record. With this record they could determine Tyler’s candidacy for brain surgery to remove the portion of the brain that was triggering the seizures.  That was my first “oh my goodness” moment. Tyler was in the state of mind that he did not want to know all of the details he just wanted them to fix it.

Upon arriving to the CH to undergo the EMU, they also ran an MRI with contrast. Tyler was diagnosed with a tumor from this MRI. I will never forget the moment the doctor informed us. Tyler was still in the mindset that he did not want to know, his words were “please just fix it!”  I must have looked as though I was going to go into hysterics because the doctor was quickly trying to convince us that finding this tumor is a blessing. He stated that many people have seizures and the doctors are not always able to find the reason why.  I would give anything for Tyler not to have to go through this. I want him to live his life without conditions. He has faced enough already!  My other son Andrew has also witnessed his big brother and best friend endure all of these events. Tyler could not be any luckier to have such an amazing brother. Andrew also deserves to be able to live his life without having to worry about his brother.

Tyler is scheduled to go back to CH in January for more EMU testing before surgery.

We are so grateful for all of the outreach and support that we are receiving from so many of you.  Please remember to keep Tyler in your prayers and thoughts as we will keep you in ours!

With much appreciation and gratitude,
Kathy

A Note from Tyler's Mom

I would like to start off by thanking Heather for her love and support by creating the Scraps of Love for Tyler project. She, like everyone around, has so many things in her life that keeps her very busy.  Taking on this project is an amazing gift to our whole family. Just the knowledge of having wonderful people that care about Tyler and wish for him to be better is heart-lifting for me.

Tyler is doing well for now. We have temporarily relocated to be closer to family and it has helped enormously with lifting our spirits. Although we will miss our friends, I have faith we will be able to go back soon.   I appreciate the unending love of my family to be able to support me and see the whole picture. For Heather to create Scraps of Love for Tyler to help assist in the financial aspect of Tyler’s care means so much to all of us. Knowing we are not alone in this is a great relief.

Tyler is scheduled to go back to the Children’s Hospital in Denver in January. I would like to personally thank everyone for all of the prayers, love, and devotion you have given. It is heart-felt and means a great deal to our entire family.

Much appreciation and gratitude,

Kathy

"Please just fix it, and make it better."

Exciting news the first 4, 10" squares are completed!  Only 44 more to go! This part goes fast so I bet, I am putting the squares together by this weekend.  :0)


Last night, I was remembering the day that the doctor's told my sister and Randy (Tyler's dad) about the brain tumor, and this is what Tyler told his parents, 
"Please just fix it, and make it better." 
Those words continually run through my mind and motivates me to dedicate myself in helping his parents to make it better. Scraps of Love for Tyler is one of the ways that I am trying to help and it is through your support that we can help fix it for Tyler. Thank you for all that you do and remember to tell your loved ones that you love them...


May you always be blessed along your path!
With all my love,
Heather

1,500 Children a Year in the US are Diagnosed with a Brain Tumor

Thanks so much to all those that are helping spread the word about Scraps of Love for Tyler.   It is wonderful to see how many of you who want to help!

All of his Aunties, Uncles, Grandparents, Brothers, Mom, Dad, Cousins, and Friends are all so grateful to have Tyler in our lives.  Our hopes for him are without end and that especially includes a long healthy life.

Last night, I did some google searches on brain tumors in children.  I learned that 1,500 children a year in the US are diagnosed with a brain tumor.  Startling, huh? This has been such a scary process for us, and I feel for each child and each family and pray that they are able to find the support that they need.  It also sparked a desire in my heart to think how to expand Scraps of Love for Tyler as a charity in the future to support other families and to pass along the goodwill that we are receiving.  I do not know what this will look like, but the seed is planted.  I'd love to hear your thoughts on this idea!

Last night I finished the matching of the last piece for the 10" squares and the quilt is really moving along.  This is such a fun process.  I simply laid all the fabric out and moved the squares around until I determined the best fit.  Here is a picture so that you can see what I mean.
All of my love,
Heather

A Short Message from Tyler and a Progress Update

Hi everyone, 

It is so exciting to see the blocks take a life of their own. We have made so much progress over the weekend. My children are so excited to help match the colors and run to fetch things. Here is a sneak peak at some of the blocks.  There are 48 blocks so it is a little difficult to get them all in the picture but I think you can start to see the pattern. I think we are still on track to have the quilt finished in the first couple of weeks in December.

I spoke with Tyler this weekend and he wanted to let you know that he thinks this is really cool and thank you to everyone who wants to help him.  

All of my love,

Heather

Scraps of Love for Tyler grows...

Hi everyone,
I want to share my work space that I have set up and share a sneak peak at the squares that are starting to form.  There are 8 pieces that form one 10" square, and does the word 'whimsical' pop into anyone else's mind too? 

This project is helping me to put my energy, love and hope into every stitch. I am sure that you can understand.  There have been many times since the doctor told us that Tyler would require major brain surgery that our whole family has been overwhelmed with the "not knowing" and the desire to do more than wait.  This project serves so many purposes for me and my family from the use of excess energy to letting my hopes and dreams for Tyler take shape but most of all allowing my family a way to express themselves about what is happening in a safe environment.

I would love to hear your thoughts and experiences as well.
All my love,
Heather

One big happy hug!

Ohhh! These fabrics are so fun!  They are vibrant, happy and just make me smile as I look at them.  Thank you so much Kim for donating most of this fabric.  They are going to make a beautiful scrapy quilt.

A letter to my friends.....

For those we love... Scraps of Love:

There comes a time in each of our lives when we are compelled to go beyond our normal actions and do the extraordinary.  This is such a time for me.  This is the story of how Scraps of Love came to be.

Five years ago my nephew Tyler suddenly began having seizures.  During a recent stay at Children’s Hospital, Tyler was diagnosed with a large brain tumor that is believed to have been causing the seizures all these years.  

Tyler is 15 and loves sports, especially wrestling, fishing, hunting, gaming and hanging out with his friends.  Right now, though, he cannot do many of those treasured things that boys his age get to do. Worst of all, Tyler is currently unable to attend school. He is a sweet-natured boy with a tender heart.  When people meet him they cannot help but instantly like him. I wish that at 15 he did not have to undergo this trial in his life, but I am determined to do something to help ease the challenge, even in a small way.

His long term treatment will require major surgery along with recovery and rehabilitation.  His rehabilitation will require him to relearn all of the basics of life you and I know how to do and many of us take for granted each day.  Each of his current hospital stays costs his family $750, but that does not include the other expenses that parents incur when they spend several weeks at a child's bedside.  He will require at least three more stays before surgery is performed.  In order to help his family with some of these costs, I have determined to undertake a project that I have named Scraps of Love. 

How did all this come to be? During an outing with a dear friend, I asked "what do you think of a spaghetti dinner?".  She said "Oh, no Heather, lets make a quilt!" I instantly agreed.  What better way to spread our love than through our stitches.  With the help of some very talented quilting friends, I am creating a twin size quilt that will be raffled off to raise money that will help offset Tylers non-insurance-covered hospital expenses.   

Each fun and bright fabric that will be sewn into this quilt was chosen for the joy and happiness that they will bring to someone’s home, not to mention the love that will go into each stitch.  There will be regular updates with pictures on the progress of the quilt, so check back often to check on the progress of what could be your quilt!

Raffle tickets can be purchased here through Pay-Pal.  Each ticket is $20. Each ticket purchased will be assigned a number in the order it was received.   When the quilt is finished, we'll use Random.org to pick the winning number.  I will ship the Scraps of Love quilt to winning person via Priority mail.  Donations of any size are very welcome.

With all of my love,

Heather