Introducing Leopold the Longarm

Leopold the Longarm, quite at home dominating my sewing room

Hello everyone!

As you may have seen on social media this weekend, I have some terribly exciting news! A generous quilter named Sally donated a Tin Lizzie 18 longarm to Quilts for Cure, and we picked it up and set it up on Saturday!

Close up of Leo with a practice piece/baby quilt loaded on the frame, ready for quilting

For those of you who don’t quilt, a long arm, sometimes called a “quilting machine,” is a large sewing machine set on a frame so as to quilt very efficiently. When quilting on a domestic (“normal”) sewing machine, you have to push and shove and scrunch the bulk of the quilt through the harp or throat (the space between the needle and the machine), and that slows things down a good bit (hence why I’m still quilting the #OperationSmiley quilts all these months later). With a longarm, the machine moves across the quilt, and it’s much faster.

Practicing stitches and motifs

This longarm, who I’m affectionately calling Leopold, is a game changer for Quilts for Cure. It will make it easier to complete quilts and get them out to kids in treatment. It will make it easier for me to test ideas for Quilt Alongs (like the one coming soon). And, if y’all are game, it might even give me the courage to tackle another #OperationSmiley next February.

Completed practice piece which will be a baby quilt for donation

I’ve been working hard on my machine quilting skills, so Sunday I put them through their paces to see how things translated into working on Leopold. I was so pleased with the results, that I’ve squared it up and will put a nice blue binding on it to make a baby boy quilt. Yesterday, I finished piecing #OperationSmiley quilt #8 and loaded it up. By george, I’m spoiled already– the whole thing was quilted in just an hour or so! I can’t wait to bind it, and get going on #9!

Operation Smiley Quilt #8

 

 

I hope y’all are as excited as I am! Thank you, Sally!!

ACTION ITEMS

  1. Make a Quilt to give to one of the 40,000 children in treatment for pediatric cancer in the United States
  2. Give money to Quilts for Cure so that we can make more quilts and contribute to research for a cure
  3. Spread the word with everyone you know about Quilts for Cure– share on your social media, with your quilt guild, etc.

Oh, and a quick update on Abri– Her family received the most marvelous news this weekend that she has NOT relapsed! It’s a bit complicated as to why the original test results were  misleading, but this is wonderful, wonderful news. As she is still facing several surgeries to repair her leg and replace the bone that Ewings Sarcoma destroyed, two fabulous quilters, Amy and Jen, are collaborating to make her a quilt to keep her cozy through the rest of her recovery.

More soon!

HollyAnne

Quilts for Cure is a 501(c)(3) Nonprofit!

The 5th #OperationSmiley Quilt is done!

Hello, Friends!

Today’s news is thrilling: Quilts for Cure is officially a 501(c)(3) nonprofit!!

This opens many doors in our future, but the most immediate effect is that we can begin fundraising. Our projected budget for 2017 is about $116,000 which includes operating expenses, raising awareness about childhood cancer, funding the E Pluribus Unum Project, and, most importantly, giving $75,000 toward childhood cancer research through CURE Childhood Cancer.

Official nonprofit status also means that we can accept in-kind donations. Quilt donations are considered in-kind donations, and we are also interested in hotel and airline points so that I travel to quilt guilds to raise awareness about childhood cancer and about what we are doing. All of these donations are now tax-deductible.

Lastly– mark your calendars! Our summer quilt drive and fundraiser will be a quilt along! It will be fun pattern that appeals to all levels of skill. More details soon– I’m very excited!!

ACTION ITEMS:

1) GIVE Make a financial donation to QFC today to help us reach more people and be more effective in our fight against cancer and FOR kids.

2) TRAVEL Help me spread the word by donating hotel or airline points. Email john (at) quiltsforcure.org for instructions.

3) QUILT Make a love-filled quilt for a child in treatment. Find all the details HERE, and email me if you have any questions. hollyanne (at) quiltsforcure.org

4) SHARE As always, please share this blog across your social media channels. We can beat childhood cancer together, and spreading the word gives us a bigger team to do it. You can find us on Facebook and Instagram @QuiltsForCure.

Fight on,

HollyAnne

Introducing the Quilts for Cure Board of Directors

Operation Smiley Quilt #4

Hello, everyone!

Today I’d like to introduce you to the Quilts for Cure Board of Directors! First, though, a quick update: Azalia received her quilt! Thank you so much for responding to the call to action, Mina! Azalia is in the hospital now for her fourth round of chemo, and she has a treasure of a quilt on her bed keeping her warm.

Azalia and her quilt

Now, more business-y things: The Board of Directors met for the first time last week, voted to incorporate Quilts for Cure, approved the Bylaws, and the 501(c)(3) paperwork has been filed at last! If you’ll indulge me, I’d like to introduce us each to you. This information is also available on the “Our Team” page of the website.

HollyAnne Knight, President and Chair of the Board

HollyAnne Knight (me), President and Chair of the Board.

HollyAnne Knight is the creative visionary behind the E Pluribus Unum Project and Quilts for Cure. As an artist, she has worked with many mediums, from watercolors to oil paints to wool and now fabric. She believes that all of her creative experiences influence her quilting, giving her a unique and ever-developing approach and style. Her work has been displayed at both the City of Duluth’s City Hall and at the Atlanta Botanical Gardens. She is a mother of two, teacher, and entrepreneur, which are key to the heart and operations of this project. In addition to creating the E Pluribus Unum Quilts, HollyAnne serves as social media manager, content writer, primary networker, and quilting instructor. She is excited to use all of her skills to bring “more love and less fear” (Claire Brewster) to the the children and families fighting pediatric cancer and to engage other creatives in that mission as well.

Instagram: @stringandstory

String & Story: www.stringandstory.com

Andi Barney, Treasurer

Andi Barney, Treasurer.

Andi learned to sew in 2008, after she had brain surgery and was stuck at home by herself for two months.  She took a beginner class, and off she went! Turns out garment sewing is not her skill set, but once she found out she was pregnant shortly after, making her first quilt for the nursery lit a fire in her that she had never known.  For many years, quilting for others provided an extra income for her family while she homeschooled her son, Aaron, who is now 7.  The Barneys still homeschool, and quilting is just a part of everyday life for them.

In 2009, she was a founding member and founding President of the Atlanta Modern Quilt Guild, and served on the board for 4 years.  She is the immediate Past President of the East Cobb Quilters’ Guild, Georgia’s largest guild, and previous 1st Vice President, Publicity Chair, Quilt Show Publicity Chair, and current Quilt Show Entry Chair.

In 2015, her dear friend Brie Klug bought Red Hen Fabrics, and they became co-owners of the quilt shop.  She is also the owner and certified master technician of Atlanta NW Sewing Machine Service, which is located inside of Red Hen Fabrics.  In addition, Andi and Brie have a pattern and pre-fused, laser cut applique company called M.F.E.O. (Made For Each Other) that they launched earlier this year, and will be taking to market in Spring 2018.  Because they don’t like to sit still, Andi and her husband also have a laser engraving and sublimation company, Lasting Impressions, that they have expanded this year.   All these aspects of quilting have given her many opportunities to travel and do guild lectures and workshops, work with many organizations, and contribute to community service.

Instagram: @atlantanwsewingmachineservice

Atlanta NW Sewing Machine Services – www.vintage-stitch.com

Red Hen Fabrics – www.Redhenfabrics.com

M.F.E.O. – coming soon

Lasting Impressions – www.atlantalaserengraving.com

Vicki Holloway, Secretary

Vicki has spent over 20 years as a nurse. She has worked with many clients over the years, helping them cope with illness and the unintended consequences of being ill. Cancer affects not only the person who is diagnosed but also the family and community of people whose lives are touched by it. In addition, quilting has been a life long passion of Vicki’s. She started out by making simple square quilts with her mother from polyester fabric and tying them with yarn. Vicki continues to quilt every day and believes quilting is a way to give a symbolic hug to someone. A quilt is a physical representation of love and caring. Teaching and making quilts is a way that Vicki enjoys sharing with others and to give hope to those touched by pediatric cancer.  She wants the cycle of caring and giving to continue. It is truly greater to give than receive…. and to be part of something much larger than ourselves.

Instagram: @Vickilholloway

My Creative Corner3: https://mycreativecorner3.wordpress.com

Operation Smiley Quilt #4

Andi and Vicki are two of my BQFs (best quilty friends), and I am so delighted that they are on our board. Quilts for Cure is in wise, generous, and enthusiastic hands with these lovely women on board. Thank you, Andi and Vicki!!

ACTION ITEMS:

1) Sign up for our newsletter. Starting sometime in May, it will be the way I communicate the most regular updates about fundraising, the number of quilts we have distributed, etc.

2) Your Story Does your child have cancer? We would love to share your story on Friday Fighters and find a quilter to send a quilt to your family. Please email me at hollyanne (at) quiltsforcure.org

3) SHARE Please share our website, blog posts, and social media information on your website, blog post, and media information. The success of Quilts for Cure will be in many, many people coming together as a network of advocates for our children. In addition to www.quiltsforcure.org, you can find us on @quiltsforcure on Facebook and Instagram.

Thank you, everyone! Keep fighting!

HollyAnne

 

Friday Fighter: Amazing Kate Amato, Age 11

 

#AmazingKate

Dear Friends,

I knew that Quilts for Cure would someday exist for about two years before I knew exactly what it would be or when it would get started. In February, we launched with #OperationSmiley in memory of the beautiful Kylie Myers. This week, we held our first board meeting and filed the 501(c)(3) paperwork!

In that two year interim between Kylie’s passing and launching Quilts for Cure, I continued to learn about childhood cancer and the beautiful families it devastates. Today’s fighter, Kate Amato, was one of the fights I followed. I cheered for Kate, and now I continue cheering for her family.

Kate was diagnosed with alveolar rhabdomyosarcoma, an aggressive soft tissue cancer, in 2014. She fought hard for two years, winning the hearts of over 20,000 people on her Facebook page. Her smile, her humor, and her generosity are captivating. On November 30, 2016, we all joined her family’s grief as Kate’s battle ended.

Kate and Caroline

Today, Kate’s family continues to fight. Her younger sister Caroline is an outspoken sibling advocate with TheTruth365. Kate’s family is also in the midst of an important Kickstarter Campaign called Kate’s Crusade. Kate’s Crusade is a proposed video game for kids fighting cancer. Studies show that visualization can affect reality, so the premise of this game is that kids can take ownership of their cancer fight, picture their treatments working, and maybe even impact their real-life battle.

Kate loved animals!

ACTION ITEMS:

1) COMMENT: Leave a note of encouragement for the Amato family as they continue to fight against childhood cancer in Kate’s memory.

2) GIVE Pledge $10 to Kate’s Crusade or give $10 to CURE Childhood Cancer in Kate’s honor. When you give, be sure to include this information: “In honor of Amazing Kate Amato #quiltsforcure.”

3) QUILT We have hospital partners in several states who are ready to receive quilts for their patients. In addition, we often receive quilt requests from individual families, and we pair them with a quilter. Get on board by visiting our Give a Quilt page or emailing hollyanne (at) quiltsforcure.org

Fight on,

HollyAnne

Friday Fighter: Azalia Taylor, age 13

Welcome back, y’all!

I met a lovely young lady on Instagram yesterday by the name of Azalia Taylor, and I had to introduce her to y’all right away! Azalia is 13 years old, she lives in Puerto Rico, and she is fighting for her life against an Endodermal Sinus Tumor. This type of cancer is most common in boys under three, so for it to appear in a tween girl is very unusual. Azalia was diagnosed in December 2016 and had a softball size tumor removed. Now, she is undergoing chemotherapy. Azalia is passionate about clean eating and her personal relationship with God. She credits both for her great joy and hopeful outlook as she continues treatment.

#OperationSmiley Quilt in Progress

When Azalia commented on one of the Quilts for Cure Instagram photos yesterday (shown above), she said something so beautiful:

“I want to learn how to make quilts! They are so cool and individual and unique… none are the same. Just like every cancer is not the same for everyone!”

Azalia’s friend Dylan shaved his head in solidarity

I also asked her to write about her experience having cancer so that I could share it with y’all:

“I just turned 13, but I was diagnosed at 12. My live was cool but getting a cancer diagnosis has changed everything forever! It has invaded my life, and I see it as an unwanted intruder. I’m a tween! i would have never guessed in a million years that I would be diagnosed with cancer. yet, here I am, and although my world is different now, I will NOT let it take away my trust and love for my Heavenly Father, or my desires and hopes, or my joy and happiness!! It has made me more aware of who I am– a cancer warrior, and that comes from within me. I will NOT be discouraged!! So, I want others to know that cancer can change things, but it doesn’t define who I am!”

“My beautiful Caribbean Sea!! Life is good!!”

You are a BEAUTIFUL ROCKSTAR, Azalia! I’m following Azalia on Instagram, and I’ll keep y’all updated as she kicks cancer’s butt!

ACTION ITEMS:

1) COMMENT Either here or on Azalia’s Instagram, @azaliacancerwarrior, please leave a message of encouragement for her and her mama, Mar-Lee.

2) QUILT Who would like to make Azalia a quilt of her very own? Email me at hollyanne (at) quiltsforcure.org!

3) CONNECT Do you know a quilter in Puerto Rico who could help Azalia realize her dream of learning to quilt? Email me at hollyanne (at) quiltsforcure.org

Finally, for all of you also celebrating this weekend, Happy Easter! He is Risen!

With Joy Like Azalia’s,

HollyAnne

Friday Allies: Stash Fabrics

Three beautiful fabrics sent by Stash Fabrics

Welcome back, Allies!

I must confess, progress on many things has stalled a bit as I have officially tested positive for the flu. Ack. If you follow my personal quilty journey on Instagram @stringandstory, then you know that this week has been #flupocalypse at our house. I have been slow to reply to emails; thank you for being patient! I promise I’m catching up!

Fabric from Stash Fabrics bordering an #OperationSmiley quilt

Today we are celebrating Stash Fabrics for being another fabric sponsor for #OperationSmiley. When I realized that we were going to make 10 quilts, I also realized we were going to need more fabric. You may know Stash from the Stash Fabrics Design Star Challenge, but you may not know that Stash is based just north of Atlanta, about 45 minutes from me. Thus, when I needed more fabric, I reached out and asked if they would help us encourage kids of our city. Marvelously, they said YES!

“Stash Fabrics is a family owned and operated online fabric store out of Alpharetta, GA. It was founded by Beth Louche after discovering her love of modern fabric. The business started as a hobby, but quickly grew into a full time gig of cutting and shipping fabric around the world. We are now a team of four lovely ladies and are working to open up a studio adjacent to the shop. While the online fabric store was the original dream, we now hope to fulfill the mission of spreading our love of creating within the community. Studio coming 2017!”

Stash sent three fabulous prints for borders and backings as well as white fabric for quilt labels. Thank you, Stash Fabrics!! I’m looking forward to the Stash studio opening up!

That top fabric is shadow puppets– isn’t that the cutest??

ACTION ITEMS:

1) COMMENT Leave a comment saying THANK YOU to Stash Fabrics for supporting #OperationSmiley.

2) SHARE Spread the word about Quilts for Cure by copy and pasting this on Facebook or in an Instagram caption:

“Quilts for Cure exists to raise awareness about childhood cancer, to honor kids who are fighting or who have fought against cancer, to raise money for a cure, and to provide quilts for kids in treatment. We need YOU to defeat childhood cancer. Learn what you can do by visiting the website: www.quiltsforcure.org”

(Feel free to use photos from Quilts for Cure to share this information, as long as you give credit to the original source.)

3) QUILT The weekend is here. Can you make a block or two this weekend that will snowball into a quilt for a child? Don’t hesitate to be part of the quilting community that stands strong with the childhood cancer community. Remember, #LoveBeatsCancer

Keep Fighting,

HollyAnne

Updates and How to Help

Hearts made by Naomi’s Mama

Hello Friends!

I wanted to pop in to touch base about what is going on at Quilts for Cure, ongoing project updates, and give you some action items for the week.

#OperationSmiley: Once again, I want to give a BIG THANK YOU to everyone who has sent blocks, fabric, batting, thread, and more. I have one more corporate sponsor, Stash Fabrics, that I will blogging about soon, so keep an eye out to learn about them and send your thanks. We currently have 1 quilt completed, 2 at Red Hen to be quilted, and 1 that needs to be basted. Then, I have a gorgeous pile of blocks that will become 5-6 more quilts. One generous quilter, Gale Fisher, made a whole quilt and is having it quilted. While the yellow, navy, and white hearts will go to two hospitals here in Atlanta, this last quilt will serve a special purpose and go to a four year old girl, Katie, with leukemia whose mama emailed me this week. Thank you, Gale! (More about Katie soon! 🙂 )

Florida in progress

E Pluribus Unum Project: The Georgia quilt is finally basted and ready for quilting! I’ve entered this quilt into a local show and should hear back in the next couple weeks if it will hang! Even though the back will not be showing, I would like it to be full of the names of Georgia childhood cancer fighters. Please help spread the word and ask families to email me their children’s names. I’m continuing to connect hexies for the first Florida quilt, and I’m already planning the first South Carolina quilt. Mathew Boudreaux, aka @MisterDomestic, generously sent some gorgeous scraps last week that will be perfect for incorporating into these quilts.

Gale’s quilt in progress for Katie

Donation Quilts: In the last week we have received two requests for quilts from families fighting against childhood cancer. One was Katie who I mentioned above, and the other was Nicholas who I mentioned last week. Gale is finishing the quilt for Katie, and my new friend Becky in Indiana has agreed to make a twin sized quilt for Nicholas. Thank you both so much!

501(c)(3) Status: Our incorporation finally cleared (huzzah!), two amazing women have agreed to be on our board with me, and we will have our first meeting very soon. After the board meeting, we will finish filing for nonprofit status, then kick off both our newsletter and our fundraising.

Upcoming Quilt Along: While Quilts for Cure always encourages quilters to make and donate completed quilts year round, we also love doing projects together. This summer, we will do a Quilt Along with a simple yet fun and flexible block. We will make just one block each week, and I’d encourage you to donate the finished quilt thru Quilts for Cure. I’ll share more next month, but I couldn’t resist a little teaser so y’all can save some summer quilting time for this!

More hexies for Florida

ACTION ITEMS:

1) SHARE Post the E Pluribus Unum Project blog post to your social media accounts and ask folks to spread the word. I want to fill the backs of all these quilts with the names of brave young cancer fighters, but their parents can’t email me their names unless they know about the project. Would you like me to honor your child on a quilt? Email me his or her name and home state at hollyanne (at) quiltsforcure.org

2) QUILT As word continues to spread, I have no doubt that we will receive more specific requests for quilts. Go ahead and get started on a project, and let me know what age/gender it would be best for. Then, when a request comes, I can connect you with a special cancer fighting warrior right away! Plus, we are continuing to network with hospitals, so there is always a way to comfort an encourage a child with cancer through quilting.

3) RECRUIT Plan to participate in the Summer QAL and invite your friends and guild members to do the same. The key to Quilts for Cure is community– the community of quilters coming together and coming alongside families in the cancer fighting community. Together, we will beat cancer because #lovebeatscancer.

Get to work, y’all!

HollyAnne

 

Make Quilts!

#OperationSmiley Quilt 1

Hey Everyone!

I have a few quilty things to talk about today.

First, I finished the first #OperationSmiley quilt! I haven’t counted up all the blocks recently, but I’m confident we will make 10 quilts. I took the components of quilts 2 and 3 to Red Hen today where they will be completed by students. I have pieced the main part of quilt 4, and will add borders tomorrow. I hope that I will also get it sandwiched and basted so that I can get back to quilting a column each night– both for progress on the quilts and for regular free motion quilting practice.

Second, I’m am searching for a willing quilter who lives in or near North Carolina. I received a message from a grandmother this week requesting a quilt for her 15 year old grandson, Nicholas, with an inoperable brain tumor. I think a twin sized quilt (70 x 90 inches) would be just right. If you are interested, please email me at hollyanne (at) quiltsforcure.org, and I’ll get you more info. Also, please help spread the word!!

Finally, don’t forget that Quilts for Cure is accepting completed quilts. You can find out more info on our Donate Quilts page, or email me at hollyanne (at) quiltsforcure.org.

ACTION ITEMS:

1) Spread the word to help us find a quilter to make a twin sized quilt for Nicholas. If you’re interested, please email me at hollyanne (at) quiltsforcure.org

2) Gather your orphan blocks, UFOs, and do some stash busting, and make a quilt for a child with cancer!

3) Tell your quilty friends and guild members about Quilts for Cure in person and on social media. Share this post!

Go gold,

HollyAnne

PS Kylie’s mama was on the Hallmark Channel this morning with their kitty Liza. Check it out HERE.

Friday Allies: The Warm Company

The Warm Company Logo

Hey Everyone!

I know it’s Tuesday, not Friday, but Quilts for Cure has received a lot of generosity lately, and there are kiddos I want to feature on Fridays, so we’re going to mix it up a bit and share about The Warm Company today.

The Warm Company is based in Washington state and was founded in 1979, and they are my go-to for batting because of the quality and accessibility of their product. They are also an American based company with an American made product: “3 million pounds of American cotton – grown by American farmers – processed annually in our American factories by American workers for Quilting – an American tradition proudly shared around the world – We are The Warm Company.”

As y’all know, finding willing batting donors has been the hardest part of #OperationSmiley because many companies either only give to 501(c)(3) organizations, or they sell batting at a steep discount (which is still too expensive for us since we aren’t fundraising yet). The Warm Company sells discounted batting to non-profits but they also have prepackaged boxes of batting to send to initiatives like ours who are just getting started.

Two of the three battings sent by The Warm Company for #OperationSmiley

We received 1 queen size batting and 2 baby sized 100% Cotton Battings from The Warm Company. In all, that’s enough for about 3 #OperationSmiley quilts! Many thanks to Lindsey in Customer Service and The Warm Company for helping #OperationSmiley succeed!

ACTION ITEMS:

1) Leave a comment for The Warm Company telling them Thank You for being part of #OperationSmiley

2) Share the blog post from last week about the E Pluribus Unum Project. I am actively working on the Georgia and Florida quilts, but I am collecting names of childhood cancer fighters in all 50 states.

3) Invite your friends to like and follow Quilts for Cure on Facebook and Instagram

16 blocks that arrived yesterday for #OperationSmiley

Thank you for your continued support and enthusiasm! 16 more blocks have already arrived this week and word is spreading about the E Pluribus Unum Project! Looking ahead, our incorporation will hopefully be approved any day now, and then we will be able to start fundraising so that we can pursue an even greater impact in the lives of brave families fighting against childhood cancer and give money to CURE Childhood Cancer’s research projects to help find a CURE!

Go Gold,

HollyAnne

Friday Fighter: Naomi Black, Age 7

Naomi, Age 7

 

Hello, Friends!

I hope you’ve had a fabulous week! #OperationSmiley is steadily moving toward 10 quilts, and I’m working away on the first Florida E Pluribus Unum Quilts.

Speaking of which, I will be adding today’s Fighter, Naomi Black, to the Ohio E Pluribus Unum Quilt. Naomi is a seven year pediatric brain cancer survivor, after being diagnosed at only 7 weeks old. Her mama, Sandy, generously wrote a bit of Naomi’s story for us:

“Following an uneventful second pregnancy, Naomi was born via emergency cesarean section because her heart rate plummeted during an induced labor.  Upon arrival, she was whisked to the special care nursery for respiratory issues and an irregular heart beat.  While still recovering from the delivery, a neonatologist explained that Trisomy “of some kind” was suspected.  It was learned after about a week that she has Down syndrome, or Trisomy 21.

Once at home and nursing like a champ, Naomi was monitored closely for poor weight gain and a rapidly increasing head circumference.  As the sutures separated and her head became misshapen, an ultrasound was finally ordered.  It was at this appointment that the presence of a brain tumor was revealed.  I was told to take her to the local children’s hospital emergency room immediately.  Naomi was only 7 weeks old.

 It was pure chaos once we arrived, with countless physicians and nurses coming into our room to “examine” her.  The neurosurgeon was in disbelief that Naomi was behaving normally at home and had not had any seizures.  She was admitted for what became more than a week long stay, having a procedure first to relieve the pressure inside of her head, an MRI to see exactly what was going on inside of it, and then the tumor resection.

 The surgery lasted nearly eight hours.  Naomi was under anesthesia and heavily sedated for a total of four days.  Once she was awake again, it was another chaotic roller coaster ride, with various complications, postponements of extubation, what seemed like hundred more doctors coming in to “examine” her, then finally a diagnosis – immature teratoma, also known as a “monster twin”.  These tumors are made up of all of the components necessary to create another human being, but they are completely disorganized.  I learned later that Naomi’s apparent popularity with all of the doctors was because of the size of her tumor.  It turns out that no one had seen a tumor that large (about a kiwi) in a patient who was so small.

Naomi had a couple of setbacks after being released from the hospital following the tumor resection.  Gratefully, she has not been hospitalized since she was about 18 weeks old, in September of 2009. 

Life after tumor resection wasn’t much different than it was for my other child, that is, until Naomi was about a year and a half old.  All types of delays started becoming apparent and she began to receive supportive therapy services from the county.  When she turned 3, her case was turned over to the public school system.  She’s been in preschool since she was three years old, and is now finishing her second year of kindergarten. 

Aside from services that she receives at school, Naomi also attends private therapy at a variety of locations, including both local hospitals.  She has also played baseball with the Miracle League and soccer with T.O.P. Soccer.  She will be eligible to participate in the Special Olympics when she turns 8 this coming May.  I think she’s going to try bowling.

While everything sounds pretty fine and dandy, let me assure you that this life – life with disability, life after a childhood cancer diagnosis – is far from fine, or dandy for that matter.  It is challenging, highly stressful, and chaotic on a daily basis.  But it is also the most rewarding experience that I have ever had.  Sadly, her sibling draws the short straw most days, having to tag along to as many as three appointments in a day just as soon as she gets home from school.  That’s just the therapy.  There are many, many medical appointments as well, that usually get worked into all of the school holidays and breaks, because there just isn’t any other place to put them.

Naomi’s diagnosis of Down syndrome has all but disappeared under the mask of the residual effects of the brain tumor.  I usually tell people the only way you’d know she has Down syndrome is by how stinking cute she is!  The tumor caused a partial paralysis on her left side, adding the label of cerebral palsy to her ever growing list of diagnoses.  It also caused a partial blindness, called hemianopsia, and another visual impairment called Cortical Vision Impairment.  Naturally, it also caused a lot of damage to her brain. While she is chronologically almost eight years old, developmentally, she is closer to 2 years old.  She continues to make progress, but it is slow.  She is an excellent teacher in the area of patience!

Naomi’s early story was chronicled for friends and family on Caring Bridge.  If you’d like to take a look, her page name is Naomi Caroline.  I updated occasionally, when we have big news to share.  Most often, I update and share photos on her Facebook page, Naomi’s Novel Neurons.  Feel free to like and follow that page if you’d like to offer encouragement and see her reach new goals.”

 

All images are from Naomi’s Facebook page

Thank you, Sandy! Your daughter is beautiful, and we are honored to know her story!

ACTION ITEMS:

1) Leave a message of encouragement for Sandy and Naomi on Naomi’s page

2) Continue to share about the E Pluribus Unum Project so I can add more names to the quilts. Has your child fought or is he or she fighting childhood cancer? Email me his or her name and home state at hollyanne (at) quiltsforcure.org so I can include them!

3)Would you like to share your child’s story? I’d love to feature him or her as a Friday Fighter! Email me at hollyanne (at) quiltsforcure.org

Trucker’s memorial service is today. In his honor, remember:

LOVE BEATS CANCER,

HollyAnne