Friday Fighters

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

Friday Fighters

Friday Fighter: Gayle Katzenback, Age 20

Gayle Katzenback, Swings Sarcoma Warrior

Good morning, Advocates and Warriors!

I know it's not actually Friday, but this story just can't wait because I need your help! 

Almost two years ago, an 18 year old Gayle was diagnosed with Ewing's Sarcoma. Her doctors were hopeful about her prognosis at the time, but after a year of typical cancer treatments, her cancer stopped responding and spread throughout her body. In December 2016, Gayle's doctors said she had stage 4 cancer, that there was nothing more that they could do, and she had six months to live. Gayle's family decided to look for other treatment options and have since been pursuing alternative methods in Arizona. NINE months later, Gayle is still fighting and her body has showed response to the treatment. Hooray! 

However, Gayle still has a long road full of treatments and struggles ahead of her. That means that she needs a quilt! Even more, she has two friends who are in treatment with her: 

Christine Danielle
18 years old - Fighting her 3rd Recurrence for Ewing's Sarcoma

Jazmin Ayotte (Soon to be Henson) 
20 yrs old - Stage 4 ACC

I'd like to send 3 #OperationSmiley quilts to Arizona for Gayle, Christine, and Jazmin. 

This is where I need your help.

The quilts are ready to go, but we need about $50 to cover shipping fees.

Please give $5 or $10 to help!

There is also a fourth friend being treated with these young ladies: Christie-- a wife and a mama of three littles with Stage 4 throat cancer. While QFC focuses on pediatric cancer patients, if you would like to send Christie a quilt (or quilts for her kiddos to comfort them as their mama fights), I would LOVE to connect you with her!!

Thank you all SO MUCH!

Go Gold,

HollyAnne

Friday Fighters

Friday Fighter: Abriel Bentley, Age 9

Abri Bentley

My dear Friends,

My heart is heavy for sweet Abriel and her family tonight. Tonight I share a story that I've been following for a little while, and it is a story that was so full of joy and now has struck a terrifying plot twist still unfolding in real time.

First, here is the first part of Abri's story, written by her Mama on their Team Abri Facebook page:

"At 7:30 PM on Friday September 4, 2015 we received a knock on our hospital room door that changed our lives forever. Our beautiful, spunky, full of life little girl was diagnosed with an extremely aggressive form of bone cancer called Ewings Sarcoma. It all started a week earlier on a Thursday night while saying her bedtime prayers, Abri suddenly had a pain in her left leg below her knee. Assuming it was nothing to worry about we tucked her into bed. Friday morning Abri woke up with pain in that same spot so I assumed she probably pulled something in her leg, gave her some medicine and sent her to school. At school that day Abri went to the nurse once and was given icepack for her leg but was otherwise pain free. That evening she still said her leg was sore but bearable and again we tucked her into bed without any worry. At 10:30 PM she woke up screaming and holding her leg. Knowing at this point there had to be something wrong, we took hr to the ER where they ran X-rays and saw nothing of concern. The doctor told us that Abri's pains were growing pains and to not worry and give her Tylenol and Motrin until the pain subsided. Saturday and Sunday the pain continued off and on and she began limping. At some points the pain was so bad that she would scream and cry but then it would go away again. Monday morning the pain was still there and the limping was getting worse so we made an appointment with Abri’s pediatrician. The pediatrician could not figure out why Abri was in so much pain and also assumed it was growing pains. He sent us off to get labs drawn just to safe and told us that if it didn’t improve in another week that we should try to get her in with an orthopedic surgeon. By Wednesday morning we had had enough of Abri being in so much pain so my husband started calling around to orthopedic surgeons in the area hoping to get Abri in to one of them as soon as possible. One surgeon at Phoenix Children’s Hospital had and opening at 1:00 that afternoon so I picked Abri up from school and my husband drove her down for the appointment. I had no idea that this would be the last day my sweet girl would be attending her second grade year with her friends. The orthopedic surgeon at PCH immediately knew something was not quite right and decided to admit Abri for an MRI. That evening Abri was put under anesthesia for the first of many times to come and an MRI of her leg was taken. We were told that something appeared on the MRI and that they assumed it was a bone infection and they would be performing surgery in the morning to clean it out. The next morning Abri was put under anesthesia again for surgery but things did not go as planned. We were told that when they opened up Abri’s leg they did not see what they had expected so they did a biopsy and we would hear back in a week or so. Cancer was never even mentioned as a possibility. We settled into our room on the 7th floor while the pain team worked on trying to control the extreme pain Abri was now in from the surgery and waited for results. I remember walking up and down the hallways seeing all of the rooms that contained little bald kids and bright yellow Chemo signs and thinking “at least my baby girl does not have cancer.” I felt so sorry for the exhausted and terrified parents I passed in the cafeteria and felt so grateful that at least we weren’t one of them. Then came the knock on the door. A moment frozen in time that still brings me to my knees. Thankfully, after several more tests, it was found that Abri’s cancer had not spread to any other parts of her body. She began her 17 rounds of chemo the next week, which took a year to complete, and she had limb salvage surgery on Dec. 23, 2015. The tibia, which contained her tumor, was removed and an adult cadaver arm bone was put in its place. Abri spent 9 months in a wheel chair, lost all of her beautiful long blond hair, endured numerous pokes, shots, transfusions, scans and surgeries but is now in remission and learning to walk again. She is back in school full time and enjoying every minute of “normal” life. God is good!"

Happy Birthday, Abri

For the last couple of months, as Abri finished her school year, she began having pain in the cadaver bone they had transplanted in her leg in 2015. On June 19th, Abri had surgery on her leg during which they removed the bone because the doctor's discovered it had split vertically. Tonight, her Mama posted horrible, heart wrenching news:

"PLEASE STORM THE HEAVENS WITH ALL THE PRAYERS YOU CAN!!! PLEASE!!! We just got the call that Abri's cancer is back. They found it in the bone that they took out. Now we are headed to the hospital for more testing over the next couple of days to see if it is just in that bone or anywhere else. If it is just in that bone she has a chance. PLEASE I AM BEGGING FOR PRAYERS FOR IT TO JUST BE IN THAT BONE!!! PLEASE!!! PLEASE!!! PLEASE!!! 🙏🏻🙏🏻🙏🏻🙏🏻"

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THIS IS NOT OKAY. CHILDHOOD CANCER IS NOT OKAY. Please, like Abri's family, I'm begging you: Take ACTION:

  1. PRAY like you have never prayed before-- for Abri and for the other 42 children and their families who were diagnosed today.
  2. QUILT Abri is a spunky 9-year old girl who needs a colorful, cheerful quilt. Twin sized would be ideal, so it can brighten her hospital room as she faces the tests and treatment ahead. Please email me at hollyanne (at) quiltsforcure.org if you can send a quilt ASAP.
  3. GIVE Please support Quilts for Cure financially. The money you give provides quilts for kids, helps us spread awareness about childhood cancer, and helps to find a CURE through Cure Childhood Cancer's nationwide research programs.

Share, share, share this. Also, Abri's family would benefit from a wheelchair that is just her size. If that is something you could provide, so they don't have to wait months and months on insurance, please email me at the address I mentioned above.

Fight on,

HollyAnne