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