September is Pediatric Cancer Awareness Month and we have so much work to do. Our children deserve our awareness and our action. So that’s what we’re going to do. Over this next month and beyond, we are going to share the stories of some of our brave warriors and heroes who teach us to fight hard and never give up.
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Aidan Nelson
Aidan WAS a very active boy. He played just about every sport you could think of. If he wasn’t watching a sporting event or playing himself he was constantly outside riding his scooter, building forts in the backyard, or shooting hoops with his best friend. He loved school. He is bright and has a memory like an elephant. He loves practical jokes and has the most amazing sense of humor. He also loves to travel! Because of the tumor on his spine, Aidan is now paralyzed. He can no longer play sports, he has not been to school in a year, and instead of being outside, he is stuck indoors playing video games or watching tv. He struggles with the fact that he cannot walk. He was paralyzed from the neck down and once the tumor was removed he has gained some mobility on the right side. There are a lot of uncomfortable moments and together we try to focus on what he does have verses what he doesn’t. Right now, he is working hard in physical therapy. Hopefully he will be able to get back into school in the next month or two. I will work in between caring for him. I am very proud to be his mom. He has dealt with this cancer diagnosis and being stripped of the life he knew with a lot of strength, mentally and physically, and laughs and makes me laugh on a daily basis. – Aidan’s mom, Elisha
Katie Clowers
Katie was a bubbly, strong spirited child who enjoyed dancing, spending time with her sister and playing guitar. She lived an exceptionally healthy life until she encountered a week long run with a low grade fever. What we were told was a summer virus turned into a fight with something we never imagined. After being transferred to the hematology/oncology unit of Brenner Children’s Hospital, Katie was diagnosed with Acute Lymphoblastic Leukemia on the first day of fourth grade.
This diagnosis came with many challenges. Chemo, spinal taps, bone marrow aspirations, port accesses and side effects took over our lives. This diagnosis came with blessings as well. After nearly three years of chemotherapy, Katie officially entered remission! This battle brought friends and family closer and put day to day challenges into perspective. We are now part of a tight knit community of others fighting the same monster. – Katie Clowers
Rylan Jaxon Macomb
Rylan Jaxson Macomb was granted his angel wings on April 1st 2016, following a 5 year battle with cancer. Rylan’s life would seem too short to many, but those who were touched by him understood that the quality of existence far exceeds the quantity of time in which one lives. His gentle smile could melt the hearts of those around him and his amazing personality would make people fall in love with him. Although Rylan relapsed 3 times with leukemia, he never appeared frail – he possessed strength, perseverance, and an ability to overcome incredible odds and physical challenges. With his courage he led us to believe that each day is a blessing and an opportunity to create lasting memories. He could spend hours dancing to his favorite songs and playing sports. He loved the color red and he loved his bear that he named, Red Baby. – Krisi Macomb
Taliyah Sweeting
Taliyah was diagnosed with rhabdomyosarcoma just one week after her 7th birthday. She went from what we were told was the worst case of enlarged adenoids her doctor had ever saw to a cancer diagnosis. Despite the horrible treatments Taliyah kept a positive attitude and loved trying to cheer up others around her. One of our projects was sprucing up the Broviac clips the hospital gave out. She endured 46 rounds of chemo, 5.5 weeks of radiation, 5 surgeries, and over 60 transfusions. She earned over 1100 Beads of Courage during 11 months, being dubbed the Warrior Princess. Since being off treatment she has organized a toy drive each Christmas for the Children’s Hospital, volunteers with a local cancer support group, Pink Heals as a Junior Guardian and helps raise money and awareness for pediatric cancer research. -Taliyah’s mom, Maryrose Sweeting
TJ Reilly
“My son, TJ, was diagnosed with gliomatosis cerebri at the age of 10, just 6 weeks shy of his 11th birthday (he was diagnosed on 8/17/14). GC is similar to DIPG in that it is also diffuse & is also incurable. It is pretty rare & usually found in kids. We had clung to the hope that there was a 5% chance that TJ would be one of the ones to survive. But what we found out was that the survival rate is actually ZERO & that the 5% refers to those who live more than 2 yrs past diagnosis. TJ lived 16 ½ months post-diagnosis (he died 1/9/16).
TJ was a very bright & loving boy. TJ adored his little brother Rocco, who was just 4 when TJ died. To tell you a little about his story with cancer, TJ had been having headaches for months & with school starting back up I decided to get his eyes checked, thinking he needed glasses. The optometrist said she needed pictures & did them right in her office on the spot. She told me something was causing the optic disc to “bulge” & we should see a neuro-othalmologist. Two days later TJ had a horrifying headache & we were at CHOP (Children’s Hospital of Philadelphia), an MRI was done, & he was admitted. We were told the news by an ER doc we had never met. She tried to be as compassionate as possible, knowing we had just been given the worst news of our lives. TJ was kept just 2 days to make sure the intracranial pressure wasn’t going to suddenly increase. They sent him home on steroids where we continued to tweak it week by week with the help of his neuro-oncologist, Dr. Philips, to keep his headaches at bay. TJ remained fairly stable. We never pursued chemo or radiation because we were told quite bluntly that they wouldn’t work. I’ve know parents with GC kids who HAVE done treatment & it hasn’t worked- as we were told. We wanted to preserve his quality of life & not have him sick all the time. Our time w/ him was precious. We didn’t know if he’d see that first Christmas. keep reading
A year went by & we were still maintaining the status quo with steroids. Then, a week before his birthday, he started having seizures. The day after Christmas I took the kids to my mom’s in MD & my husband had his “break from the kids & noise” stay-cation back at home. That night, under my mom’s Christmas tree, TJ had an uncontrollable seizure. We called 911 & went to Children’s National Medical Center in DC. We were there 2 days, got discharged & were back at my mom’s TWENTY minutes when it started all over again. Back to Children’s….We almost lost him that week in DC but were helicoptered back to Philly & CHOP the following Sunday. We were there 4 more days before the next MRI. Bad news- the worst news. The cancer was in his brain stem & the brain stem was twisting & herniating, soon to be pressing out of the bottom of his skull. All this time TJ was on a ventilator, medically sedated & on a versed drip. It was awful. We had to make the gut wrenching decision to withdraw life support. We had the whole family (from 2 states) & friends there to say good bye before we turned off the machines & turned on the morphine. We sang him into heaven that night. It was the saddest & yet most beautiful thing I’ve ever had- or suspect ever will have- to do.
So that’s my TJ. My angel, my son. I miss him beyond measure. I have started a foundation in his honor & memory. We are young & small but trying to make a difference in the lives of families facing childhood cancer ( www.otmfundation.net ). Right now we are under the Founding Hope program of ACCO & hope to be our own 501 (c) (3) in the next year. I attached a few pictures of TJ (Gray Matters, in innertubes in Maui), me & TJ hamming it up in a photo booth, & of TJ with his little brother, Rocco (pre-diagnosis) If you need photos of the more grim reality of childhood cancer I have those too. I know you can’t use every submission so I completely understand if TJ isn’t included in this latest project. Feel free to use his story for this or future endeavors. – Maryrose Sweeting
Olivia Malmgren
Olivia was diagnosed 2 weeks after her 1st birthday. The tumor encapsulated her entire Kidney so it was removed along with a couple of uncertain lymph nodes. There are 500 cases in the US annually and typically only diagnosed in children usually before the age of 5. Even though prognosis is higher than other pediatric cancers, there hasn’t been much changes in treatment since Wilm’s was discovered in the 1950s – removing the tumor surgically and treating with Radiation and Chemotherapy.– Olivia’s mom, Roseabelle Malmgren
Emma Jean Joesten
Emma was born a fighter, never afraid to say what is on her mind, strong, and loves life! She dances like no one is watching, eats like a horse, and smiles like every day is the best day of her life, even after 3 days of chemo! She suffered from hydrocephalus for weeks, possibly months, the only sign being a “”lazy eye”” prior to her ataxia (unsteady gait). Turns out it was the tumor and CSF compressing her brain. She endured a week’s stay in the Pediatric ICU at Lucile Packard, a brain surgery, and 2 rounds of chemotherapy, amongst numerous blood draws, a Port placement, and several other procedures and intubations. She is our Warrior Princess, and has taught us more about strength and resilience than anyone we have ever known.
I had already been introduced to Unravel through the Mama’s Night Out event in Santa Cruz 5 days prior to Emma’s diagnosis. I met a group of incredibly strong Warrior Mamas, and the support has truly been a lifesaver. I was already training for Wharf to Wharf in Santa Cruz, and I decided to dedicate my run to my daughter through donations for Unravel. What a way to pay tribute to all of the children fighting cancer (and those who fought bravely and lost)!– Emma’s mom, Katrina Joesten
Ty Murray
On March 3, 2008, our son Ty, who was only 16 months old, was diagnosed with stage 4 Neuroblastoma. The cancer was widespread throughout his entire body. Overnight he went from an active toddler to a cancer patient. We were thrown into the pediatric cancer world where our lives were forever changed. Ty was given a 30% chance of survival for five years and required very aggressive and toxic treatment in order to survive this deadly disease. He received high does chemo, multiple surgeries, stem cell/bone marrow transplant , radiation, and a painful antibody treatment which we flew coast to coast to New York for 2 years to receive. After two years of active treatment, Ty was finally declared “No Evidence of Disease” (NED) in 2010.
Unfortunately, he is now dealing with the “late effects” of the cancer treatment. Ironically, the toxic treatment used to save our son’s life is now responsible for serious health issues. He suffers from high frequency hearing loss, and due to all the radiation to his left leg, his growth plate was damaged which caused many issues to this leg. Ty has had multiple leg surgeries within the past 2 years and currently has to wear a fracture brace as his leg continues to heal. Statistics have shown cancer children are at a higher risk in developing fertility, cognitive, lung, and/or heart issues in the future. We will never feel completely safe and are always going to worry about “relapse.”
By donating today, YOU are being active in the fight against pediatric cancer… and we will forever be grateful for your support. – Ty’s mom, Carmen Murray
Julia Briana Barocio
It all started the summer of 2015. Julia was getting a lot of headaches and kept falling. We thought she was just tripping over her feet, being her clumsy self. I took her to the pediatrician for the headaches and was told she had a sinus infection. I took her back 3 more times and after 4 rounds of antibiotics doctor then ordered a CAT scan. That’s when our lives changed. Doctor showed us the image and said, “”We found a mass, this is serious. I will step out so you can talk””. I was delusional then, full of hope and with lots of faith.
One night, Julia suffered a stroke at midnight. It was the most terrible thing, still haunts me today. Julia was never the same. I lost her that night. Doctors said she may not recover. They said she wouldn’t live more than four months. I never left her side talking to her daily. Friends and family poured out into the hospital to see her. She was loved by many. She did 6 weeks of radiation and was given high doses of steroids causing her to gain over 100lbs in 3 months. Half her head was completely bald. She then did 6 weeks of acute rehabilitation at Children’s Hospital to help her walk but the return of the severe headaches and vomiting had us kicked out of rehab. keep reading
She suffered with anxiety after the stroke and was very irritable and emotional. Every outing was exhausting. Too many people around would cause her to have an anxiety attack. We had to carry the Ativan to help her.
Things kept getting worse and worse. It was difficult with the anxiety, depression and phobias she suffered. My poor baby, took so much for me to stay strong for her.
On January 2nd I called 911, she was in breathing distress. She had pneumonia and was kept 3 days hospitalized. She was immobile but could breath. Until the following month , on April 3, 2017 again called 911 she couldn’t breath. This time she had pneumonia again but they say she lost her gag reflex which meant anything she swallowed would go straight to her lungs including her saliva. The pneumonia could not be cured and would kill her. There was nothing else that could be done for her. We were sent home to die. My Julia suffered immensely. On April 21, 2017 Julia became unresponsive. She finally left on May 4,2017 at 9:17am after I found the strength to tell her it was okay to stop fighting. I told her I would always remember her and loved her with all my heart. It was okay to go with God, only he could heal her. – Julia’s mom, Sonia Lopez