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Gold Ribbon Heroes: Tristen, Caison & Carter

Gold Ribbon Heroes: Tristen, Caison & Carter

 

Meet the Rush family warriors: Tristen, 6, Caison, 3, and Carter, 8 months old. Each of the boys have bravely fought retinoblastoma at a very young age. grh tristen Caison and carter copy

When Angie Rush was an infant, she was diagnosed with retinoblastoma. She fought hard, survived and now has three young boys with the same diagnoses.  ACCO was lucky enough to speak with the Rush family and get some insight into their unique story.

After spending four weeks in the NICU, Tristen’s parents Angie and Aaron advocated to have his eyes checked which revealed that he had retinoblastoma. “When he was diagnosed, you always hope for the best and assume everything was okay. It was really heartbreaking for us, even though my wife went through it when she was younger – it was unknown. She went through it as a baby, so when your son has it, it was kind of a whirlwind and you don’t know what to expect. It was overwhelming and heartbreaking and for a brief moment you have sadness and crying and then it turns into determination” said Aaron. Their son Caison was diagnosed at just two days old after the parents urged doctors to check his eyes after Tristen’s diagnoses. For the first six months, Carter was tumor free but in January of 2020, doctors found several tumors in his eyes. “We thought he was free and clear and that he wouldn’t have it – but we just pushed through the sadness to tackle this cancer,” said Aaron.

Each of the boys’ treatment plans have been very similar. They have all had monthly eye exams, chemotherapy for six months, laser surgery as needed and evaluations under anesthesia. The chemotherapy has caused minor hearing loss in Tristen so he wears hearing aids. Caison currently has a small vision deficit in one eye which doesn’t seem to slow him down.

img_3502According to Aaron, the boys have been minimally affected by their diagnoses. Tristen is currently in survivors clinic status and has once a year eye exams. He is extremely personable and loves to make people laugh. He is funny, smart and full of energy. He loves to draw, playing outside, playing sports, helping around the house and swim, among other hobbies. Caison is in observation status and gets eye exams every three to four months. He is very friendly but shy. He loves to show people new things, playing in the dirt, being outside and making up funny stories. Carter is currently on active chemotherapy treatments and has monthly eye exams. He is a happy baby who smiles at everyone! He can roll over, sit up and is working on crawling.

Please help ACCO send well wishes to the Rush family!

To learn more about retinoblastoma, please visit: https://www.acco.org/retinoblastoma/

To nominate your Gold Ribbon Hero: https://www.acco.org/gold-ribbon-heroes/

To donate to help kids like Tristen, Caison and Carter, please visit: https://www.acco.org/donate/

 

Gold Ribbon Hero: Molly

 

Meet Molly, a 19-year-old currently battling stage 3 anaplastic ependymoma. This warrior is currently a freshman at the University of North Carolina Greensboro studying musical theater. grh molly

A week before leaving for college, Molly experienced debilitating headaches. She went to the emergency room and was sent home with benadryl and a migraine diagnosis. After being asleep for 40 hours straight,  Molly had an MRI which revealed a tennis ball size tumor. On August 15, 2019, Molly was diagnosed with stage 3 anaplastic ependymoma. That same day she was meant to move into her college dorm. Her mom said it was a complete shock, while Molly was just worried about going to school.

Treatment began almost immediately with a total resection of the brain to remove the tennis ball tumor followed by months of rehab and seven weeks of proton therapy.  In January she had her first post op MRI and will keep having scans until officially cleared.

Music has been instrumental in Molly’s recovery. Three weeks after surgery, she danced for physical therapy. Within six weeks, she was on stage performing at a benefit. She wants people affected by cancer to “let yourself have bad days but know that you are strong enough to have good days too. Let people envelope you in love, because you aren’t doing this alone.”

unnamedMolly is an advocate for childhood cancer and has made some very exciting public appearances. She sang in front of 20,000 people at the Hockey Fights Cancer Night at the Blue Jackets and raised awareness at the Governor’s Mansion. In addition, she helps to raise awareness for pediatric cancer research by committing to ride a bike for 100 miles with her sisters.

Mighty Molly has been determined since day one of her diagnosis. She is a performer, singer and dreamer. She hopes to be on Broadway or a cruise ship to entertain the masses. Only six kids were chosen at UNCG for her musical theater and the spot was saved for her when she was unable to attend her first semester. Help ACCO send well wishes to Molly and her family.

To learn more about childhood cancer: https://www.acco.org/blog/childhood-brain-tumors-staging-and-prognosis-factors/

To donate because kids can’t fight cancer alone: https://www.acco.org/donate/

To nominate your Gold Ribbon Hero: https://www.acco.org/gold-ribbon-heroes/

#childhoodcancer #childhoodcancerawareness #awareness #goldribbonhero #themightymolly

 

Gold Ribbon Hero: Lilliana

Meet Lilliana, a survivor of Burkitt’s lymphoma!grh lilliana  

Lilli loves to draw and paint, and is currently looking at colleges to pursue a career as a social worker.

Lilli was diagnosed with thyroid cancer at the age of 13 on September 13, 2013 and was understandably scared and upset. Shortly after her initial diagnosis, the family got a call saying it was much more serious saying they needed to pack their bags for a two week stay in the hospital. Lilli was diagnosed with stage 4 Burkitt’s lymphoma.

Treatment was intense for Lilli, she endured seven long months of chemotherapy and spinal taps. She had a port placed in her chest and shortly after had to have it removed due to a severe infection. “I faced many challenges during my treatment both physical and mental but during the whole time I never let myself get a bad attitude about any of it.

“Personally, as a 13-year-old girl, my biggest trouble was feeling confident without my hair. During that time, I did not feel pretty and the only pretty thing about myself was my hair; but, I overcame it and learned that I was beautiful no matter what” said Lilli.

On April 8, 2014 Lilli was cleared for remission and in June of 2019 she was declared out of remission! She is now 19 and attends the survivorship clinic at Pittsburgh Children’s Hospital for check ups at least once a year. Please join ACCO in sending Lilli well wishes in her future endeavors.

Lilli was featured in a Buzzfeed article about her journey. Read her firsthand story here: https://www.buzzfeed.com/lillianabailey99/childhood-cancer-gmzl5dpr8
Learn more about childhood cancer here: https://www.acco.org/types-of-childhood-cancer/

Donate to help kids like Lilli fight cancer: https://www.acco.org/donate/

 

Gold Ribbon Hero: Natalie

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Meet Natalie, a 12 year old aspiring astronaut who wants to become the first woman to walk on the moon! This courageous and determined little girl is a wilm’s tumor survivor!

At three years of age, Natalie was diagnosed with a bilateral Wilm’s tumor. Symptoms started with a swollen stomach and developed into vomiting and constipation.  Her pediatrician ordered an x-ray of her abdomen and initially said it was stool in the images. As a precaution, labs were drawn which came back showing Natalie was severely anemic. She was sent home and ended up in the Cincinnati Children’s ER that night. The family was in the ultrasound room for more than an hour before receiving the diagnosis.

Natalie was immediately admitted into the ICU and chemo started within a few days. A month later Natalie was rushed into emergency surgery in septic shock due to complications and as a result, the tumor and her right kidney were removed. After two months in the hospital, Natalie was released. Four months after the initial diagnosis, Natalie had surgery to help salvage her left kidney however doctors had to remove it and place her on dialysis. Over the next year, she was put under daily chemo and dialysis treatments. In October of 2012, Natalie received a life saving kidney transplant from a family member.

Today, Natalie is a normal 12 year old who loves spending time with family, drawing and participating in drama club. She was officially cured in October 2016 and is very thankful to be a survivor. She still has to go in for labs and doctors visits, but according to her mom Tracy, “she handles all of that like the pro she is.”

Please join ACCO in sending well wishes to the young astronaut to-be, Natalie!

For more information about Wilm’s tumors, please visit: https://www.acco.org/wilms-tumor-and-other-childhood-kidney-tumors/

To nominate your Gold Ribbon Hero: https://www.acco.org/gold-ribbon-heroes/

To donate to help kids like Natalie: https://www.acco.org/donate/

Gold Ribbon Hero: Naomi

Meet Naomi, a kind-hearted little girl who loves unicorns and helping people. Naomi is currently on treatment battling Pinealoblastoma, a subtype of a brain tumor and spinal cord tumor. grh naomi

Red flags started to arise after Naomi collapsed in school; she didn’t even know her name. Naomi visited the emergency room several times before doctors finally took a closer look. They found a mass in her pineal region and immediately sent her to Children’s in Cincinnati. On October 3rd, Naomi and her parents were given the diagnosis of stage four pineoblastoma with metastasis in the spine.  “We got the MRI results and they took us in a big room. It took my breath. I couldn’t believe it. All I wanted to do was go grab her and hold her. We were lost” her father, Kenneth, remembers.

The treatment plan for Naomi is rigorous consisting of 30 proton radiation treatments and six months of chemotherapy. October of 2019, Naomi had four brain surgeries and doctors told the family that if they got all of the cancer and it comes back, there is nothing they can do.

Naomi is a kind soul. While in the hospital, she bagged up her Halloween candy and passed it to the children that didn’t get to go trick or treating. She is working to start a teddy bear drive to donate to the hospital. She is currently undergoing chemotherapy for the next few months. Please help ACCO by sending her well wishes!

Follow Naomi’s story here: https://www.facebook.com/naomisfight/

To learn more about childhood cancer visit: https://www.acco.org/blog/childhood-brain-tumor-cancers-detection-and-diagnosis/

To donate to help kids with cancer: https://www.acco.org/donate/

 

Gold Ribbon Hero: Sal

Meet Frank “Sal,” a 16-year-old sports enthusiast and Lumineers fan. At the age of 14, Sal was diagnosed with germ cell testicular cancer and is currently in remission! IMG_3438

Sal was complaining of a swollen testicle after a bike accident and his parents took him into the doctor’s to check it out. Instead, they were sent straight to the emergency room after the doctor suspected it might be ruptured. Within ten minutes, the doctor informed Sal and his parents that it was testicular cancer. Initial impressions were scared and upset but Sal was determined to beat it.

His treatment was accelerated by receiving a total of 28 chemotherapy treatments. The treatments were rigorous; both in and outpatient and once the initial 24 treatments were complete, they were sent for four additional outpatient treatments. “He went through treatments like a champ, now he can help other children to see that they can get back to normal,” his mother, Elizabeth said. During his journey, Sal had abdominal surgery to remove a mass from his kidney where his cancer had spread.

Elizabeth remembers, “I was diagnosed two years ago with breast cancer and I am currently 1.5 years in remission. I thought I handled my diagnosis and treatments like a pro until I watched my son go through this. He blew me away. He never complained, sat in the hospital for six days in a row, 24 treatments over seven weeks and still smiled for pictures. When he lost his hair, I cried, not him. He has been unbelievably strong through this.”Sal

During treatment, Sal was not able to join the football team, however he has joined the track team and already earned second place in a conference for his long jump. According to his mom, “Frank is the most giving kid, he plans to advocate that you can make it and do bigger and greater things even when you feel like rock bottom.”

 

To learn more about childhood cancer: https://www.acco.org

To donate to help kids with cancer: https://www.acco.org/donate/

Council of State Governments Magazine “Capitol Ideas” features ACCO

As a new partner member of the Council of State Governments, ACCO’s #WhyNotKids State Advocacy Initiative is highlighted in an article in Capitol Ideas detailing our leadership and solutions for overcoming the disparity between adult and #childhoodcancer research funding. Capitol Ideas is a magazine of CSG sharing ideas for model legislation and top priorities for states across the nation. Special thanks to CSG for featuring ACCO. Read the full magazine hereScreen Shot 2020-01-28 at 8.29.00 AM

 

Gold Ribbon Hero: Mady

Meet Mady, a courageous 13-year-old dancer with a love of fashion and makeup. ACCO first got in touch with Mady’s mom, Ashley in February of 2019 after Mady met Randy Fenoli at Kleinfeld in New York City. We’ve been following Mady’s story ever since. 46520356_10204986397936700_5712957268534755328_o

 

This month Mady relapsed and this time it was evident in her spine. She is beginning cycles of radiation in early February in New York. 

Mady was first diagnosed with neuroblastoma at the age of 8 years old. According to Ashley, “Mady was playing softball and rounded a base. She hurt her ankle which caused pain throughout her body. I knew something was wrong but didn’t know the extent.” 

“It was the scariest day of our lives. The doctor sat us down and said her gut feeling was right – they had found a tumor on Mady’s left adrenal gland.” The doctor ended up doing more scans and discovered neuroblastoma. Mady was scared and confused and of course, Ashley was terrified of the outcome. FB_IMG_1577455932435

Treatment started shortly after with several rounds of chemo and radiation which made Mady extremely sick. She was devastated when she lost her hair but she kept fighting. Later, it was discovered that Mady’s body was resistant to the chemo so they quickly switched to two different immunotherapy treatment and two mibg radiation therapy treatments. Mady has had two ports placed, had her left adrenal gland removed and endured biopsies of skull lesions.

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After two years of treatment, the cancer went dormant but relapsed in January of 2018. In March of 2018, Mady and her mom traveled to New York twice monthly to begin a trial treatment which cleared her of disease after 13 rounds of immunotherapy. In August of 2019, she had her first set of clear bone scans in almost four years. 

Mady’s attitude has been determined throughout treatment saying “it’s okay, I’m going to beat it!” From day one she had faith that she was going to beat the disease and has persevered when nothing was working. You can follow Mady’s story here: https://www.facebook.com/groups/1038894766152004/

Please help ACCO send well wishes to Mady and her family by commenting on this post! 

To nominate your Gold Ribbon Hero click here

To learn more about neuroblastoma, click here.

ACCO provides information, resources, support, awareness and advocacy to families who are affected by childhood cancer. Donate today to help the littlest warriors.

 

UPDATE: May 22, 2023, ACCO is sad to announce that on May 19, 2023, Mady passed away while surrounded by her family. 

 

Gold Ribbon Hero: Adrian Z.


grh AdrianMeet Adrian, a shark and travel enthusiast that was diagnosed with Pituitary Germinoma at the age of 16. 

Adrian’s symptoms started in August 2017 when he was complaining of frequent headaches accompanied by nausea and vomiting. In October 2017, an MRI was taken of his brain revealing a mass in his pituitary region which compressed his left optic nerve.

On November 10, 2017, Adrian underwent his first brain surgery to remove the top portion of his tumor however the rest of the mass was not able to be removed. The top portion of the tumor was sent to the lab revealing Intracranial Pituitary Germinoma.  Just 12 days later, Adrian was sent back into brain surgery to remove built up fluid on his brain.
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Adrian’s mom, Veronica said “we were already devastated seeing him come out of a brain surgery. We were so nervous, but once we heard it was actually cancer, I cannot put it into words the devastation, fear, anger and a million feelings/thoughts/emotions we experienced. As a parent, it is the most devastating thing to hear that your child has cancer.”

Adrian began his first round of chemotherapy leaving him very weak. Three weeks later, he started his second round of therapy. In total, Adrian completed four rounds of chemotherapy and followed with 21 days of radiation.

Through all of the treatments, Adrian did not complain about his pain or struggles. Cancer gave Adrian a new outlook on life and his hope is that all affected with cancer around the world are cured of cancer and can live fulfilling and happy lives.

Adrian was awarded two separate trips which ultimately brought the family closer together in their journey. On his wish trip, Adrian was able to go shark diving, cave diving, and swim with the dolphins. “It allowed us to live in the moment with one another, something that we hadn’t really done because we would always anticipate every appointment, every chemo cycle, every surgery. It was something we were always anticipating, whether it was his health, we were always worrying. It just gave us just that hope to look forward to the future and not think about those things,” explained Veronica.edit2

Adrian is now 18, and thriving as a survivor.  He is currently being monitored by oncology every three months and is on hormone replacement therapy for his pituitary gland. Please join us in sending well wishes to Adrian and his family!

For more information about childhood cancer please visit: https://www.acco.org

Nominate your Gold Ribbon Hero here: https://www.acco.org/gold-ribbon-heroes/

 

 

Q&A with Smiley Riley: Our Giving Tuesday SuperHero

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“Smiley” Riley, as his family and supporters call him, is currently fighting childhood cancer. But Riley tells us he’s determined to “kick cancers butt!”

In honor of #GivingTuesday, Riley is helping ACCO raise funds and awareness to give back to kids like him. While he is currently in the hospital receiving treatment, we asked Riley’s mom, Ashley, to ask him a few questions about himself. His advice to other kids going through childhood cancer is inspiring to all…

What is Riley’s age, cancer type, date of diagnosis and status?

Riley is 5 years old. He has High-Risk Neuroblastoma and was diagnosed on Easter, April 21, 2019. Scans as of November 2019 revealed no traces of Neuroblastoma. But we will continue Riley’s treatment as planned.

How did you find out Riley had cancer?

Starting in February 2019, he was having leg pain and limping. We were in and out of the doctor’s office for weeks. The pain wouldn’t go away and the limping got worse. But tests and X-rays didn’t reveal anything. Eventually, the pain went to his arms and shoulders. We took him in again and bloodwork was drastically different. Within a week we were sent to Children’s and diagnosed within a few days!

How did you explain to Riley what cancer was and did he understand?

We told him a nasty sickness was inside his body. It was a sickness that required a lot of medicine to get rid of. Some of the medicine was going to make him sick also and he’d lose his hair. But they were really strong medicines that were going to get rid of the cancer. Unfortunately, our family dog was diagnosed with a tumor last September 2018 and we didn’t know when Bailey, our dog, was going to die but it would be soon. He immediately associated his sickness with Bailey and asked if he was going to die too. I about lost it when Riley was talking about it. We told him that dog cancer and human cancer are different. I don’t know if he fully understands his sickness but he was able to realize he didn’t feel good.

Had your family heard of childhood cancer before Riley was diagnosed and what was your reaction when you heard, “Your child has cancer.”

We knew about childhood cancer but not to the extent that we do now. We also never realized how many different kinds of childhood cancer types there were as well! I was actually by myself on Easter Sunday morning. Ben had gone home to check on our other sons and he was on his way back to the hospital. Riley had an X-ray and within 20 minutes he was doing a CT scan and very soon after that 3 doctors came in. Now when things typically happen that fast at the hospital, I knew I was about to get bad news. Hearing the words come out of the doctor’s mouth I felt like I had been hit by a truck. And then there was the feeling of disbelief this can’t happen to my child. And the flood of emotions overtook me. Then telling my husband over the phone was one of the most difficult phone calls I have ever had to make. We both were in shock that Riley had cancer and couldn’t believe this was happening to our little boy, our Smiley Riley.

What has Riley’s childhood cancer experience looked like so far?

Riley has had 5 chemo treatments and is currently on his 6th. He has had radiation therapy up at CHOP and he will be getting a transplant of his own StemCells on November 27. After this hospital stay, he will have more radiation and immunotherapy. He has had blood transfusions while going through this process. He is one of the strongest little guys I know. He’s missed lots of school, which breaks our hearts because he’s such a social butterfly and loves Kindergarten. We signed him up for Flag Football and soccer and he loved playing when he was able too. We try and keep life as “normal” as we can for him. Hospital stays go pretty well! He loves all of his nurses. Children’s has become home away from home. Although he loves getting out and going back home to his 3 brothers.

How has ACCO helped your family during this time?

ACCO has been another wonderful resource and tool to have for our family and for Riley! The cozy Cat and Medical Kit have been one of Riley’s favorites! He plays for hours with it and tests out his doctor skills. It has become a great tool for him to talk through things that he has gone through and he just gives Cozy Cat special care that his nurses and doctors do for him.

What is Riley’s motto or how does he take on going through treatment?

Smiley Riley Strong! And when you ask him what his superpower is he will tell you “Kicking Cancer’s Butt”. He came up with it all on his own. He was talking to one of his nurses one day and she asked him what his superpower was. She said I bet smiling! He said no ma’am. “Kicking Cancer’s Butt”! I about cried! He goes through his treatments like Hulk Smash! He just “smashes” right through it. Although it’s very hard sometimes, he pushes through. He knows these difficult treatments are to help him get rid of cancer.

What does Riley wish people knew about childhood cancer?

Kids with cancer are fighters. Love on them and support them. Don’t ever treat them as broken.

What does Riley want to be when he grows up?

He wants to be a chef and a baseball player

What would Riley say to other kids, like him, fighting cancer?

It’s ok to be scared and feel bad but just Keep Strong and Keep Smiling.

This Giving Tuesday, make a difference for kids like Riley. Donate to ACCO…because kids can’t fight cancer alone.

 

Donate on GivingTuesday

P.S. Your donation could go twice as far! Our partner Jel Sert will match Giving Tuesday donations, up to $1,000!