Friday Fighters

Friday Fighters

Friday Fighter :: Jonah Delang, Age 4

Jonah and his parents on his birthday

Jonah and his parents on his birthday

Good evening, Advocates and Fighters!

While I know it's customary to kick back on Friday night (and I did have some good fun in my sewing room earlier), there are families among us who don't have that luxury. They're in hospital rooms for treatment and emergencies or at home managing symptoms. Their children are fighting for their lives against the vicious beast of cancer. So, I interrupt your Friday night to remind you about childhood cancer. About all the kids who didn't start school this fall because of cancer. About all the dreams cut short by cancer. About... darn it, I've made myself cry. And cry we should-- and then we should DO SOMETHING. 

Jonah Delang

Jonah Delang has fought cancer twice in his just barely 4 years. He was first diagnosed on December 8, 2014 at the age of 15 months with neuroblastoma and recently beat back the disease a second time. While Jonah is currently NED (no evidence of disease)-- can I get an amen? -- his quality of life is still deeply affected by cancer. Just last week Jonah spent his birthday in the hospital because of the side effects of immunotherapy treatments and a lack of effective ways to treat pediatric cancer patients. His mama's post about that struck me as significant and poignant:

September 5th, 2017:
In addition to being his birthday, today was supposed to be Jonah's first day of preschool. While it would have been so hard and a little sad for me to send him off to school for the first time, it is monumentally harder to not be afforded the opportunity. I LOVE seeing all of your first day of school pictures but I'm also terribly sad I'm not able to post one of my own. All I ask is that you appreciate how fortunate you are to be able have first day of school pictures. There are SO MANY kids spending this day very sick in a hospital bed. This floor contains at least 40-50 beds and they are all full and have been all weekend. 
Our kids need more than 4% funding. Our kids need to have the opportunity to go to school....to play without pain....to have parties at home....to be kids.

The first thing I hope you recognize here is the need for AWARENESS and FUNDING about and for childhood cancer treatment. Second, throughout the Delang families posts, I read the exhaustion and discouragement from years of fighting an elusive, vicious, potentially lethal disease. Quilts for Cure exists to stand in the gap between these families and hopelessness. Each family that receives a quilt (and a quilt is in progress for Jonah now!) is receiving a gift of love, encouragement, and beauty to add a touch of home to wherever they are staying for the battle. 

HOW CAN YOU HELP?

1) Share Jonah's story/ Quilts for Cure on social media. 

2) Support Quilts for Cure financially so that we can spread the word and ship more quilts

3) Make a Quilt!

Oh, and please leave a note of encouragement for Jonah and his family in the comments! 

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

Friday Fighters

Friday Fighter: Cheyenne Skylar Boswell, Age 9

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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!

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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

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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