Friday Fighters

Friday Fighter :: Wes Pak, Age 11, Neuroblastoma

Quilts for Cure- Quilts for Kids with Cancer

Hello Friends!

I have the most wonderful news: 6 quilts are going out to kiddos this weekend from #OperationSmiley and the #MoreThan4QAL. So many of you have been part of these quilts-- through blocks, whole quilts, supplies, and donations of shipping funds-- THANK YOU!!

Wes Pak- Neuroblastoma Fighter

Today, I want you to meet one of the kids who will soon be cuddled in a Quilts for Cure quilt. Wes Pak is only 11 years old, but he is fighting Neuroblastoma for the 6th time in 6 years. Allow me to share his mama's words:

My name is Krista and up until June 2011 I was just your typical wife/mom stuck in my everyday routine. But as you all know, things can change so quickly as it did for us almost 6 years ago. I have been married to my husband Myong for 10 years and together we have 3 sweet boys (Wes 11, Ebin almost 6, and Eli almost 4) and are residents of York County, Virginia. In June 2011 my oldest son Wes (then 5) was unexpectedly diagnosed with stage 4 neuroblastoma, a nasty monster, a childhood cancer.

A 13cm tumor was found in his abdomen in addition to cancerous lymph nodes in his neck after having what doctors thought was constipation and a “slow in his growth spurt”. Since that day we have been living in what seems like a never-ending nightmare. My son Wes has undergone so much in his short 11 years including well over 25+ cycles of chemotherapy cocktails, 36 rounds of radiation, 16 rounds of antibody treatments as a part of an attempted but failed (for us) clinical trial, attempted but failed vaccine trial, 6+ major life threatening surgeries, numerous bone marrow biopsies, and more needles/transfusions/scans/etc. than I care to count.

Surgery came at a price of course, resulting in needing to have his left kidney removed, left adrenal gland removed, part of his liver and intestines removed, as well as have his colon taken apart and put back together multiple times. It has also caused damage to muscle in his pelvis and issues with his GI tract. He is currently on his 4th relapse and his last scans have shown progression (which is not a word you want to hear in the cancer world). Because there is not any protocol for relapsed neuroblastoma, my son is now dependent on clinical trials and the trial/error process of chemo drugs, though statistically the odds are not in our favor. His cancer has a specific mutation known as ATRX and is linked to chronic, fatal neuroblastoma meaning it is likely he will continue to relapse.

For 5 years we flew back and forth every few weeks to see a top neuroblastoma team in NYC at Memorial Sloan Kettering, but recently sought out another opinion (after being told he had done all they currently had to offer) with another neuroblastoma expert in Grand Rapids, MI where Wes and I have been since 1/15/17 and will be until the end of February. This disease has effected all of us in many ways including our other two boys who have been in this cancer world since they were newborns, but Wes has been hit the hardest.

The list of side effects that he has experienced is lengthy and none of which should ever have to be experienced by a child. Some of his ongoing or continuous issues include chronic bowel issues, anxiety, intermittent neuropathy, intermittent nausea, unexplained blurred vision, rapid weight loss, compromised immune system, and chronic but intense muscle spasms of the pelvic floor. Unfortunately it is likely we haven’t seen the true damage caused by his treatment just yet. He currently has a 504 plan with his school, Seaford Elementary and they have been wonderful, though it is a huge challenge to try to keep up with schooling while he is out so often. This journey has proven to be one that is a roller coaster of emotions and I wouldn’t wish it on my worst enemy. However, it is also bittersweet, because it has reminded me how precious life is and to always cherish the small things.
Wes Pak- Neuroblastoma Fighter

Pay family-- we are cheering for you!! Thank you for sharing your story so that more people can understand how horrible childhood cancer really is! Wes, kick cancer's butt!!

Wes's quilt is in the mail to him today, but there will be 42 kids diagnosed with childhood cancers today. Please help us send quilts to those kids, too, by making a donation! Your financial generosity helps us spread the word about Quilts for Cure and the prevalence of childhood cancer and helps us send quilts to children across the country! 

Gold forever,

HollyAnne

Quilts for Cure

Why Quilts for Cure is Important

Quilts for Cure -- Encouraging children who have childhood cancer

Hello again, Quilty Friends!

I have a story to tell you, but first let's take a few moments to look at some sobering facts: 46 children in the United States will be diagnosed with cancer today. The National Cancer Institute only gives about 4% of their annual funding toward researching childhood cancers, and as a result there has been almost no progress on treatment options since the 1980s. At least 3 children will DIE today because of the lack of new drugs and therapies. Some cancers, like the brain cancer DIPG have a 0% survival rate. Children diagnosed with DIPG are sent home on hospice for whatever time they have left. Cancer is the leading cause of death by disease in children, and even those who survive are left with lifelong complications and health risks—complications and risks that often claim their lives sooner rather than later.

Quilts for Cure -- Encouraging children who have childhood cancer

Two and a half years ago, a beautiful girl named Kylie Myers died from bone cancer. She was 12 years old, and she was one of the most beautiful people I’d ever had the privilege to know. Three years before that, her best friend Bailey Moody had a rotationplasty amputation to survive a very similar bone cancer. Two girls in a small class of about 60 at their school. Cancer is more common than we realize. And its effects are so devastating that they are hard to look at straight on. Have you thought about that? When it comes to really hard things, sometimes the best we can do is kind of scooch up and give them the side-eye before backing away again. We “go gold” in September and donate a dollar at the grocery store, and then we try to forget that something as horrible as childhood cancer exists in our world. 

I refuse to forget. 

Kylie’s dying charge to her family was to kill cancer. I don’t have to be her flesh and blood to accept that challenge. 

Bailey lived—but she lost her leg and her best friend. Those are devastating losses nonetheless. 

I taped Kylie’s picture above my ironing board. I make myself look the reality of cancer full in the face every day. 

It’s hard. 

Somedays I’m not so good at it. 

But I try my hardest—for Kylie, for Bailey, for their mamas, daddies, siblings, and for a bunch of other kiddos and families who have captured my heart. Trucker. Abri. Kate. Grant. Katharine. Gayle. And more… Too many more. Too many. 

I do my best at staring cancer in the face when I’m quilting. Like the very act of my own love and creativity can somehow beat back the evil of cancer. I’m not a scientist, but I wage my own war against cancer in my sewing room, a war that pushes back against the cold, the fear, the despair, the loneliness, the ugliness of cancer—quilt after quilt. Quilts for children to keep them warm while needles pump poison in the their veins—our pitiful attempts to rid their little bodies of a horrific disease. Quilts to hide under when the big world is so scary. Quilts to bring beauty, color, and cheer to yet another hospital room. Quilts with love in every fiber—love that I truly believe gets passed from me to these children and their families. Through quilting, I fight evil with love. 

Bailey and Kylie

Bailey and Kylie

I know a lot of other quilters who fight evil with love, too, so I created Quilts for Cure so we can fight together. We aren’t hunting for a pharmaceutical cure—we leave that to Kylie’s Daddy (Mark Myers) and the AMAZING team at CURE Childhood Cancer. Our love and our quilts enter the fray to encourage children and families who are emotionally exhausted by the turmoil of cancer. We are cheerleaders. Our quilts tell a child and his or her family, “WE SEE YOU!” While so many people only give childhood cancer the side eye once a year during Childhood Cancer Awareness Month, we stare that devil in the face every damn day and say, “No! You do not belong here, and we are going to KILL YOU!” And our love and our courage gains a little ground in this war. 

Quilts for Cure -- Encouraging children who have childhood cancer

When I told him about Quilts for Cure, Kylie’s Daddy said that it is good, and it is important for the emotional encouragement of families in the fight. “When your child has cancer, you’re in the fight because you HAVE to be,” he told me. “We’re so tired from our own fight. We need people like [Quilts for Cure] who CHOOSE to be in the fight because you bring fresh energy and hope.” 

What will you choose?

Will you CHOOSE to enter the fight?

Will you CHOOSE to stare childhood cancer in the face and fight back, rotary cutter in hand, with love, joy, and quilting? 

Will you CHOOSE to use your hobby and passion to comfort a child who is fighting his or her life?

Fight with me. Fight with us. Together, we will KILL CANCER for Kylie and for every child so that they can live happy, healthy, long, cancer-free lives!

(Quilts for Cure is a 501(c)(3) nonprofit. All donations are tax deductible)

Gold Forever, 

HollyAnne

MoreThan4QAL

#MoreThan4QAL :: Week 7 :: Some Assembly Required

Tanya's gorgeous quilt top-- with bonus kitty!

Tanya's gorgeous quilt top-- with bonus kitty!

Happy FriYAY, Fighters and Advocates!

First, THANK YOU to our generous donors this week! #OperationSmiley Quilts are on their way to Gayle, Christine, and Jazmin! Your financial support helps us send quilts all over the country, and it helps us get quilts out right away, which is especially important if a child is in critical condition. Your funding also helps us spread the word to sewists who can help us make quilts and to families fighting cancer who can be comforted and encouraged by a beautiful quilt. Please continue to give so that we can bless more families!

In many ways, this is the last "official" week of the #MoreThan4QAL. This week, we assemble our blocks into a top, baste, and begin to quilt our quilts. Please have your quilts completed by October 31. My hope is that by then I will have enough names of children ready to receive quilts that you can each send your quilt directly to a child in treatment. 

Quilts for Cure #MoreThan4QAL

Quilts for Cure has received so much encouragement this week. Thank you all for participating in #OperationSmiley, the #MoreThan4QAL, giving funds, giving fabric, and helping to spread the word! Please keep up the amazing work! We have a LOT of kids still to bless!

Go Gold, 

HollyAnne