Friday Fighter: Abriel Bentley, Age 9

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!”

Abriel at her 9th birthday party last month

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!!! 🙏🏻🙏🏻🙏🏻🙏🏻

Abriel post-op this month

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.
Winning is EVERYTHING. Once again, Abriel is fighting of her life

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

Friday Fighter: Cheyenne Skylar Boswell, Age 9

Hello Friends!

I’m delighted to resume our Friday Fighters series, and I hope to be posting more regularly again! (see the action items at the bottom if you would like to share your child’s story here with us)

When Hubster forwarded this beautiful mama’s email to me this afternoon, I read it with tears in my eyes. My heart breaks that Cheyenne was taken so young by the beast DIPG. Please allow this story to move you, and when you reach the end, take action against childhood cancer today!

Cheyenne was a miracle from the day she was born. I was 5 months pregnant when I was in a building that partially collapsed on us. They doctors told she was going to be mentally handicapped when she was born. Cheyenne was born March 13, 2000. 13 days after her due date. She was perfect when she was born. Cheyenne was full of life. HE laugh was infectious and people wanted to be around her because he brought so much joy. When she was 6 years old she went with me to my school to watch and help me with lights. She was one of those kids who made sure you were making eye contact with her because she needed to know that you were paying attention to the conversation.

It was this night when I looked her in the eye that I noticed that her right eye was turned in towards her nose. I  asked her what was wrong with her eye and she told me that she didn’t know.

I made an appointment with the eye doctor but it took a week to get in. During this week she started to slur her words, complained of bad headaches and started throwing up in the mornings. The eye doctor told us it was just lazy eye.

Good thing I didn’t wait the three weeks that they wanted for the CT scan because she would have passed before it. I took her to the emergency room and they did a scan and we were taken by ambulance to Children’s hospital of orange county (CHOC).

It was there we were given her diagnosis on December 17th 2006.

Cheyenne was 6 years old when she was diagnosed with cancer. A DIPG called a Brain Stem Glioma.

When my daughter was diagnosed with cancer my heart stopped for a second. How could someone so sweet and so amazing have to face such a horrible thing. But how she showed me strength. She taught me how to look past the trial she was fighting and see the good that was coming from it. The new friends we had made. The things she got to do because of how much she helped others while she was fighting the same disease. We were told no one lived past 12 months and she fought for 27 months. She broke the rules and defied the odds. She used her time to help others. She cleaned the house at OCRMH, she helped the staff in the office like Katie and Brandon. She made blankets for the other kids at the hospital and used all the money she got to bake for her Dr’s and nurses and to fill the treasure boxes. Cheyenne carried around a cuss jar and would go up to random strangers on the street if they cussed and tell them they owed a dollar. She would also tell them the money would go to CHOC and people paid it.

She was my birthing coach when her youngest sister was born. She stood by my head held my hand and told me it would be OK. She then went over while the nurses were cleaning Devinlee and started singing to her. She sang her favorite song ” I am a Child of God”. She loved her so much from the minute she was born.

 No one has ever shown me more on how to be a giving person without wanting in return. So when she told me to start a foundation to keep her legacy alive and help others how could I not.

On December 17th 2008 Cheyenne was diagnosed  with a second cancer called Astrocytomas. We were told that this cancer was immune to chemo therapy and her body couldn’t handle anymore radiation. Besides the radiation had caused the second cancer.

On March 16th 2009, just 3 days after her 9th birthday at 9:23 pm I heard her last heart beat and felt her her last breath leave her body as I held her in my arms at home in my bed where she wanted to leave this world. I spent time bathing her and dressing her in her favorite outfit, that that Anaheim Ducks bought her. I then held her in my arms for 3 hours until the funeral home came to get her. I didn’t want to let her go.

We have spent the last 8 years celebrating her life. We go to her graveside every year on her birthday and angelversary for the whole day. We have cake, release balloons and share memories with others who love her too. Not a day passes that we don’t think about her or talk about her. She taught us so many things. Cheyenne has 4 sisters and 2 brothers. She touched their lives in so many ways.

 Now her little sister has stepped up to help others as well. She used her voice to raise over $1000 between 2 fundraisers at her school. Now Devinlee and I use our voices and our strength to keep helping others who are dealing with what our family fought through. It is a tough battle and these families need all the help that we can give them. We have decided to spend our lives living the way Cheyenne did, in service.

 Forever grateful

Angel mommy Virginia

Mother of angel Cheyenne Skylar Broswell

3.13.00-3.16.09

Virginia, thank you for sharing Cheyenne with us! Our prayers, encouragement, and love are with you and your family.

Y’all, I challenged you at the beginning of this post to allow your heart to be moved first to emotion and then to action. It’s time to DO SOMETHING about childhood cancer!

ACTION ITEMS:

  1. Give money so that we can serve like Cheyenne—by giving more quilts to more children in need. In addition, a portion of our annual budget goes toward cancer treatment research so that we can have better ways to fight terrible cancers like DIPG.
  2. Give time by making a quilt to donate. If you are not already a quilter, email me at hollyanne (at) quiltsforcure.org, and I’ll see what I can do to connect you with some lovely local quilters.
  3. Give your story. Has your child fought for his or her life against childhood cancer? Is he or she fighting now? Email your story to john (at) quiltsforcure.org to be featured on Friday Fighters!

Thank you, everyone!! Don’t forget to follow @quiltsforcure on Facebook and Instagram to stay up to date on what the organization is up to, and don’t forget to SHARE SHARE SHARE these posts to spread the word about the tragedy of childhood cancer and get people to DO SOMETHING about it.

HollyAnne

I

Friday Fighter: Derek Cantor, 5 months

Derek Cantor

Hey Everyone,

Today I want to share with you a little bit about Derek Cantor’s short, extremely difficult fight with Rhabydosarcoma. I want to give you a head’s up, though, that this muscular cancer is difficult to view in its later stages. I want to show you the heartbreaking pictures of Derek’s fight because it is important that we understand the pain and gravity of his cancer, but please use discretion– especially if your own children are nearby.

Derek’s Bookshelf Quilt; Pieced and Quilted by Vicki Holloway

I learned about Derek’s story a couple of weeks ago and asked Board Secretary Vicki to finish a quilt for him. We agreed that the quilt should be larger than baby sized because we knew it was likely that little Derek’s battle would end before his quilt arrived. In this instance, we hope that this quilt, which heads their way tomorrow, will bring comfort to his parents as they grieve their little boy.

Rhabydosarcoma

Derek Cantor was born on November 17, 2016. When he was born, he already had rhabydosarcoma tumors on his chin and neck. This muscular cancer is made of cells that should have developed into Derek’s skeletal muscles, but instead they became cancer. From birth, Derek endured aggressive treatments for several months before entering hospice care this spring. As his tumors progressed, they caused him extreme pain, even blistering his skin and making it painful to be held. Derek passed away in his sleep on April 23, 2017.

ACTION ITEMS:

1) GIVE Donations to CURE Childhood Cancer help fund research to find more effective treatments for childhood cancers. In the Comments box of your gift, include this information: “For childhood cancer research in memory of Derek Cantor. #QuiltsforCure”

2) QUILT About 40 children will be diagnosed with cancer today, tomorrow, and the next day… If you are a quilter, please make a simple, heartfelt gift of comfort for one or more of these kids. You can learn more on our Donate Now page.

3) SHARE Spread the word about Quilts for Cure so that we can honor more kids, distribute more quilts, and make a bigger impact fighting against childhood cancer!

#morethan4

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 Fighter: 4 year old Katie Green

Katie the Miracle

Happy Friday, Fighters!

Remember the little girl I mentioned last week who is getting the quilt with all the different colored hearts? I’d like to introduce you to 4 year old Katie Green who is fighting hard against Acute Lymphoblastic Leukemia.

Katie is a miracle baby, born 17 years after her older sister. She’s a happy kiddo who loves to play with the other kids in her extended family. She loves blue and purple, Paw Patrol, and dinosaurs! Katie was diagnosed last summer on June 21, 2016. While her prognosis is good, cancer is still a huge battle.

Katie in the hospital this week

But let me invite Katie’s mama, Susan, to tell you a bit more about her precious baby’s story:

“She was born with three heart defects and had to be started on digoxin and Lasix at only three weeks old. She was unable to nurse and had to be on double strength formula just to get her enough calories. While they were waiting for her to get strong enough for heart surgery, her heart started to heal itself. Her cardiologist was amazed. Her ASD and pulmonary artery resolved themselves as she grew. She still has a VSD but it has shrunk considerably and in May of 2016 the cardiologist declared she would not need heart surgery. 
In June of 2016 she was diagnosed with leukemia. With intensive chemo she went on to remission in  Aug 2016. She continued treatment and in Jan 2017 she started maintenance chemo which will continue thru Sept 2018. We are very hopeful that she will overcome this too.”
 Katie, we are so thankful that you have a good prognosis! Your quilt will be ready soon, sweet girl!
Katie’s quilt in progress
ACTION ITEMS
1) COMMENT: Leave a message of encouragement for Katie and her family. You can follow Katie’s journey on Facebook at Katie’s Krusade. 
2) GIVE: Make a donation to CURE Childhood Cancer in Katie’s honor. Under the notes option on the donation page paste this message: “In Honor of Katie Green. #QuiltsforCure”
3) QUILT: 44 children in the US will be diagnosed with cancer TODAY. Make a simple, heartfelt quilt for one of them this weekend.
Also, if you ever have questions about how to get involved or how to share you child’s story, just email me at hollyanne (at) quiltsforcure.org
#LoveBeatsCancer
HollyAnne

Friday Fighter: Katherine The Brave King, Age 7

In Loving Memory of Katherine The Brave

Good morning!

I sat down to write about Katherine The Brave last night, but I was tired from a long week and just felt like I should wait till this morning when my mind is fresh so I can write well and honor her memory.

Katherine “Katie” King was born on February 26, 2009. She was an “old soul,” full of personality and intelligence and creativity. At the age of six, Katherine was diagnosed with DIPG, Diffuse Intrinsic Pontine Glioma, a highly aggressive tumor at the base of the brain with a 0% (ZERO percent) survival rate and only a 9 month average survival period after diagnosis. Furthermore, DIPG has 0 (ZERO) treatment options, and pediatric brain cancers collectively receive only 1% of the National Cancer Institutes annual funding (All pediatric cancers collectively receive less than 4% of the NCI’s annual funding).

After Katherine was diagnosed on June 2, 2015, her mama, Jaime, began searching the internet for wisdom from people who had gone before her on this heart breaking road. Sadly, she found very little information because many people do not talk about pediatric cancer, even when they have experienced it, because it is so painful. Jaime decided that she would document Katherine’s journey, to make it her personal mission to make people MAD at childhood cancer.

From Jaime: “This is #DIPG. This is #BrainCancer. At random moments she says I’m dizzy and I know the eyes rolling up. Nausea, confusion, drooling, slurring, gagging, and exhaustion will follow. We can’t call anyone. They won’t help. They can’t… This is #PediatricBrainCancer. It’s ugly and cruel. This is what #4percent gets us. Nothing… Please, please share the ugly, and honest, truth about this cancer. Share the whole truth. Cancer isn’t always bald happy children receiving gifts after they finish chemo. It’s ugly, and some diagnoses come with a zero percent survival rate. These kids should be mourned before they die, so that people get angry and spread the word. So, spread the word! #KatherineTheBrave #PleaseShareKatherinesStory”

Get MAD. Get mad that Katherine died from DIPG on June 6, 2016 at age 7. Get mad that her family had no options. Get mad that there are 300 families in the US each year that are sent home to watch their child die because there are no treatments for DIPG. Get mad that less than 4% of the NCI annual funding goes to children. Get mad and DO SOMETHING!

ACTION ITEMS:

1) Share this blog post so that more people know about DIPG and childhood cancer. Encourage people to take ACTION.

2) Give Make a donation to CURE Childhood Cancer. In the comments of your donation write, “In Honor of Katherine the Brave King for DIPG research. Quilts for Cure Friday Fighter Initiative.”

3) Honor I want to share your child’s story as a Friday Fighter and honor them as part of the E Pluribus Unum Project. Please email me at hollyanne (at) quiltsforcure.org

Fight on,

HollyAnne

PS Thank you, Jaime, for allowing me to use y’all’s Facebook Page as a resource. Y’all check out this Babble article about Jaime’s mission, too.

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

Friday Fighter: 3-year old Trucker Dukes

Happy Friday, fellow fighters!

Each week, we celebrate and cheer for someone who is fighting with everything they have against childhood cancer. Today, I’d like to introduce you to Trucker Dukes, a darling three year old who is fighting for his life against Neuroblastoma. I “met” Trucker via Facebook last week, and my heart melted. I can’t wait to make the Hawaii “E Pluribus Unum Project” quilt so I can write this sweet little man’s name in BIG LETTERS so that everyone who sees it will know that Trucker is a tough, amazing fighter!

Here’s an excerpt from his Facebook page:

“Trucker Dukes, the youngest son of Maui fire fighter Joshua Dukes and Maui jewelry maker Shauna Dukes, was diagnosed with Stage IV neuroblastoma, an aggressive cancer that has spread to 50% of his body. The 3 year old has an older sister and two older brothers.

“A few months before I took him to the doctor he had a fever for a week,” Shauna said. “His molars were coming in, so I thought, ‘Man, he’s just a fussy teether.’ Later, we found out that it is really common for neuroblastoma patients to have a fever.” Trucker’s fever and irritability returned a few weeks later and Shauna’s mom noticed that his stomach looked distended.
Shauna took him to the pediatrician that morning on November 24, 2014.

“He also had a little black eye, and the doctor asked how he got it. I didn’t know. Now in retrospect, I know that black eyes are signs of neuroblastoma, and I think that is what alerted the doctor.” Shauna continues, “I expected her to say, ‘He has an infection, go home, here are some antibiotics.’” Instead, Shauna was told he had a big mass in his stomach and more tests on Oahu were needed. A low hemoglobin count required a blood transfusion on Maui. “I feel like I haven’t really woke up from the nightmare ever since.”

 

Trucker was treated first in Hawaii and then in New York City. He is currently back home in Hawaii with his family being treated with prayer, good nutrition, and lots of love to improve his quality of life for as long as possible.

Trucker has been named an honorary Maui firefighter. His precious oath reads:

“I, Trucker, Honorary Firefighter for the County of Maui, Department of Fire and Public Safety, do solumnly swear on this 14th day of December, 2015, to fight hard against cancer, to love my parents, family, and friends, to continue to be as strong and brave as I have been for the past year, to light up the lives of everyone around me with my smile and laugh, and to never lose my hope or my spirit, so help me God.”

Please say a prayer for Trucker as his fight continues and his pain has increased again. You can also post your best tough face on Facebook and tag it #truckertoughchallenge to encourage Trucker Boy. Here’s mine:

Take ACTION for Trucker and other Fighters:

1) Like Team Trucker on Facebook and join the #TruckerToughChallenge to encourage the Dukes family

2) Like Quilts for Cure on Facebook to stay up to date on our work

3) Make a heart quilt block for #OperationSmiley this weekend using our easy tutorial. We’re up to 52 blocks (nearly 3 quilts); please help us make even more for Smiley Kylie’s upcoming birthday.

Hug your dear ones extra tight tonight,

HollyAnne

All images courtesy of the Team Trucker Facebook Page.

Friday Fighter : Kylie Myers

Happy Friday, Friends!

Welcome to the inaugural Friday Fighter post of the Quilts for Cure blog! Each week, I’ll introduce you to someone who is fighting against childhood cancer with everything he or she has– whether a child who is fighting for his or her life, a parent fighting for their child, or folks like us who are liaisons and cheerleaders. Our common denominator? We all believe, as today’s fighter did, that “cancer should die and not the kids.”

Kylie Myers was a surprise to her family and a joy to all of us who were blessed to know her. I knew her as a first and second grader, with gaps in her smile where her baby teeth had fallen out. She was like walking sunshine.

Here is a little snippet of her story and impact in her Daddy’s words:

“SmileyForKylie was named after 12 year-old Kylie Myers. She was diagnosed with Ewing’s Sarcoma on April 9th, 2014. After we cried and prayed together, she said, “God must have a great, big plan for me.”

We wish God’s plan included earthly healing, but sadly, it did not. Kylie beat cancer for good on Feb 13th, 2015. We will miss her every day. Before she passed, she gave her family a charge to kill childhood cancer so no other child would have to endure what she went through.

Kylie’s radiance was easy to see all of her life. She showed it constantly with her warm and beautiful smile. She loved being on stage and had an enormous presence that belied her small frame. It is easy to see why she was always called ‘Smiley Kylie.'”

Kylie loved all things creative. The stage was her happy place, but she also enjoyed knitting. When I first approached Mark (Kylie’s daddy) about Quilts for Cure, he said that he was sure Kylie would have loved quilting. She didn’t have the opportunity to quilt, but she was given a number of quilts while she was sick, and we donate our quilts in her honor to continue to share her joy with other Fighters.

You’ll hear lots more about beautiful Kylie as we continue sharing her joy, but I hope you enjoyed this overview! Today, I have a couple of easy steps for you to join us:

1) Like Quilts for Cure and Smiley for Kylie on Facebook

2) Follow Quilts for Cure and Smiley for Kylie on Instagram

3) Revisit our Operation Smiley blog from Wednesday, and commit to making at least one heart block this weekend, even if you don’t consider yourself a “quilter” or “crafty.” 604 families will receive the devastating news of childhood cancer between February 1st and Valentine’s Day (the 14th). Do you think we can make 12,080 heart blocks so that every one of those families can have a quilt? Because I think we can!

Spread joy today,
HollyAnne

    PS This video is a precious part of Kylie’s stories, too, told in her mama’s words.