Category Archives: Fighters’ Stories

Meet Rey: August 2017

Rey’s mom writes, “Reynaldo, my son was diagnosed with Choroid Plexus Carcinoma back in Jan. 21th 2013 with a Grade 3 tumor which was removed. He went through chemo and radiation which did not work. In April 2014 two tumors grew and both were treated by gamma knife radiation, the treatment removed one of the tumors and the other was barely visible but was inactive. After two years in remission Rey began to complain of headaches and dizziness, he had a scan and in May 1 a new tumor came back. Rey is on the IBRANCE clinical trial in Washington DC and we travel back and forth from PA for treatment and follow-ups often.

My son is a strong kid with a great big heart, his only concern is for me. One day Rey told his me that, “The only thing I’m worried about with dying is leaving you behind. I’m not afraid I know what heaven is like and I know up their I won’t suffer and my cancer will be gone.”


Please pray for this sweet family who are in need of your prayers and support. Rey’s birthday is later this month and he will turn 16. He loves to fish although hasn’t been able to do it for a while. He also likes the Steelers, Giants, and Phillies sports teams and enjoys playing games with friends online. With his gentle smile, sweet laugh, sparkling eyes, and amazing unwavering faith – this child has made an imprint on our hearts forever.

If you would like to provide financial assistance to directly help support this family, they have a Facebook fundraiser to help with travel back and forth as well as medical expenses. #TEAMREY #FINDACURE

Meet Colton: May 2017

Colton’s mom writes, “Colton was diagnosed October 20, 2016 at the age of 13 with Leukemia. He has been a real trooper fighting his battle with cancer. Colton has keep a positive attitude despite all the hospital trips each week and not being able to go to school. He is currently being treated in Baltimore. Each week we drive up to Baltimore and stay at the Ronald McDonald House. Since we are regulars at the house he loves meeting the new kids and showing them all the games and activities they can do to help them past time being away from home. He always has a smile on his face no matter if he is feeling bad from chemo or not.

I am so proud of Colton for learning about cancer and knowing how to take care of his body while fighting this disease. He can name every pill he takes each day and when we talk to the Dr. he asks questions to understand more about cancer. Colton is my super hero son and we will fight and win this battle together.”

Please keep our friend Colton, his brother Connor, and his family in your thoughts and prayers.

Meet Nicholas: March 2017

Nicholas’ mom writes, “Nicholas was diagnosed with Metastasized Ewing’s Sarcoma on March 10th, 2015. 5 days before his 8th birthday. His main tumor was in his right tibia. He had a spot on his hip, spine, and lesions on his lungs. He also had a tumor in his heart. In March 2015 he had open heart surgery to remove the tumor in his heart because they could not treat him with it in there. It would have shriveled up and broke apart and went in his lungs and killed him. He had his port placed in April 2015. He started strong chemo in April 2015. He finished in October 2015. He started maintenance chemo on December 2015 and stayed on it until January 2017. He also had radiation to the tumor on his leg and the one on his hip and spine. He had good scans until his scans on January 11th, 2017 when during a PET scan they found a spot on his right hip. On February 6th 2017, he started strong chemo again. He will do 5 days then have 2 weeks off. We were supposed to start a new cycle Feb. 27th, but due to his counts still being low we have to start a new cycle on March 6th. He will have 2 weeks off. Then the week of March 20th they will do scans again to make sure the new chemo is working. And then we will start radiation on the spot on his hip.”

This road is so long and is an up and down roller coaster for all who are asked to travel its path. Please pray for Nicholas and his family, for healing, comfort, and strength to endure. Pray for Nicholas’ upcoming birthday on March 15th that he will have an amazing 10th Birthday without having to think about chemo or hospital visits!

Happy 10th Birthday friend, may you celebrate and enjoy all the things turning DOUBLE DIGITS has to offer!

Fighter of the Month: August 2016


Julia is a 15 yr old T-Cell ALL warrior. She has been in treatment since August 2014. Julia has a strong faith in Christ, joy, and a quiet strength. The journey has been long and hard. Julia is expected to finish chemo treatments in December, she will then begin a series of surgeries to repair damage to her joints. At this point, she needs both hips replaced and has a torn meniscus in one knee. She also has joint damage in both knees, although it is not certain if she will need knee replacements at this time.

Julia has a Facebook page: Team Julia

She also has a Caring Bridge page: Julia Fulmer

Chris’ Story

Written by Chris’ mom Amy:

Chris fishing two weeks prior to diagnosis; July 2012
Chris fishing two weeks prior to diagnosis; July 2012
Chris was born with hemihypertrophy. It is a condition in which one part of the body is larger than the other and is associated with an increased risk for certain cancers. In Chris case, his left leg is longer and bigger than his right leg. At 6 months of age he was sent to an orthopedist and geneticist. The orthopedist followed his leg length discrepancy and the geneticist evaluated him to rule out genetic syndromes and to screen him for Wilms Tumor. When we visited the orthopedist the first time at 6 months, we were sent for a screening ultrasound, this was the first time we heard of Wilms. I remember coming home and crying that day, knowing that my son was at risk for cancer. As time went on, Chris had AFP tumor markers drawn and screening abdominal and renal ultrasounds every 6 months. As he hit 7 years of age, we thought the risk for developing Wilms was behind us. His screenings were to end at age 8. So, at one of our last scans, I heard the words, “There is a growth”. I remember that day so vividly. I couldn’t believe what I was hearing! We were almost at the end of all of this. MY child couldn’t possibly have cancer…that happens to someone else, not us.

And then our world was changed forever. We entered the world of cancer….

What then followed was a whirlwind of emotions, tests, scans, and blood work. Meeting with oncologists and surgeons, going to the clinic, feeling scared, angry, depressed and sad. How did we get here???!!!!

At Children's Hospital for surgery; August 2012
At Children’s Hospital for surgery; August 2012
After several scans and tests, there still wasn’t a clear diagnosis. His growth was outside the kidney, not inside as seen with typical Wilms. Also, Chris’s AFP level was extremely high, which is also not typical of Wilms. Our only option at this point was surgery to get a definitive diagnosis. His surgery was performed at Children’s National Medical Center on the first day of the start of his 2nd grade school year. The tumor was able to be removed, but took with it part of his kidney. Unfortunately, there was spillage of his tumor, which immediately moved him from a Stage II to a Stage III cancer. Two slow painful days of waiting revealed Extrarenal Wilms Tumor, a rare form of Wilms. He went back to surgery the next day for insertion of his port. Chemotherapy and radiation (because of spillage) were to begin the next week. But then Chris started having abdominal pain, vomiting bile, and abdominal swelling. He was rushed off to emergency surgery two days later for intestinal obstruction. So a 3-4 days stay at the hospital turned into a two week stay. Chris then had 7 days of radiation and 8 months of chemotherapy. Within that time frame, there were several ER visits and 2 hospital stays.

Make-A-Wish trip Disney Cruise
Make-A-Wish trip Disney Cruise
Of course our faith was shaken. How could it not be? I was so angry, sad, depressed, helpless and felt weak, when I knew I should be strong for my son. I felt like God had abandoned me. Why wasn’t he answering our prayers. How could he let this happen? I know I will never know the answer until He decides to reveal it to me. Through all of this, I have grown closer to God. I come to him in praise and thanks each and every day for what we do have, for being together in the present moment, for the nights I can still tuck my kids into bed and hug and kiss them. I never want to forget because it allows me thankful for today. I can’t forget because it has forever changed who we are. I look at my son today and see his strength and bravery and I feel truly blessed. Today I am happy to say that Chris is NED!!! We now live in 3 month increments… scan at a time!

Chris’ Crew on Facebook