Dorothy Pontillo of Cheyenne was a very snuggly baby with big smiles and loud giggles despite facing cancer treatment, medication and medical hardships in the first eighteen months of her life.
Dorothy took her first steps in the midst of chemotherapy just after she turned a year old. Her dad, Riley Pontillo, would get the little push walker from the hospital toy room and encourage her every day to walk.
“Dorothy would walk around the unit with her little walker, and we would carry her poles, lines and all of her attachments,” Payton Pontillo, Dorothy’s mom said. “She learned to walk in the hospital and did just incredible.”
It was heartwarming to her parents and miraculous to see how their little daughter was able to thrive despite the cancerous tumor growing in her tiny body.
“She just kept going and now she is just a bright and fun personality,” Payton said.
Dorothy had been born with cancer, but her parents and doctors were unaware of the tumor growing on her tailbone until after she turned a year old.
Payton said that they were just a very normal young local family. Both she and Riley had been born and raised in Cheyenne. They were now raising their three daughters in their hometown and Dorothy was their youngest.
Their oldest daughter, Scarlet, was just 4 and Evelyn was 2, when they first began rushing Dorothy to the emergency room with complications of her kidneys.
Issues Beginning At Conception
“We knew something was wrong when I was 20 weeks pregnant with Dorothy,” Payton said. “They found that her kidneys were enlarged on my anatomy scan and we met with high-risk doctors out of Denver through my pregnancy, and immediately following birth.”
Dorothy’s kidneys were swollen with what the doctors called ‘reflux into her kidneys.’ The urine was going into her bladder and then coming back up into her kidneys.
Since Dorothy was not showing signs of illness, she was put on antibiotics by a specialist in Denver with the hope that she would eventually outgrow the issues. When her parents sought a second opinion, that doctor agreed that the antibiotics were the best option.
“She was a very happy, sweet little girl that was developing as any normal one year old would,” Payton said. “Until everything changed as we started to approach her first birthday and she just became very uncomfortable.”
Payton specifically remembers one night when Dorothy was restless, fussy and unable to sleep despite being tired. Concerned, Payton took her to the emergency room the next day and it was determined that she had been unable to empty her bowels hence the discomfort.
The doctors installed a catheter and, since Payton was a hospice nurse, the doctors sent Dorothy home. However, once the catheter was removed, Dorothy immediately ended up in the hospital again.
The doctors decided to install another catheter but this time they couldn’t get it in.
By then, it had been over 24 hours without emptying her bladder and Dorothy was at risk of rupturing her bladder. She was life flighted to Denver where a catheter was successfully placed.
Once more, Dorothy was sent home since her mom knew how to manage the catheter.
Advocate For Baby Dorothy
“I was perplexed, but at that point, did not know how to demand more answers,” Payton said. “When they eventually pulled the catheter, it all happened again, and it was like déjà vu. She was right back to that level of discomfort and back to Denver.”
Finally, Payton put her foot down and refused to take Dorothy home without answers. Her little daughter was in pain and Payton wanted to know why.
“As a hospice nurse, my whole career is to make people comfortable, so to watch my own child in that level of pain and suffering was especially difficult,” Payton said. “I had hit my limit because it was clear that something was wrong.”
The hospital ran an MRI on small Dorothy and found that a grapefruit size tumor was blocking both her bowels and her urethra. Doctors later confirmed that Dorothy had most likely been born with the tumor and it had been with her since conception.
She was ultimately diagnosed with mixed germ cell sacrococcygeal teratoma with liver metastasis.
“The tumor came off of her tailbone and grew up into her abdomen,” Payton said. “It's called a mixed germ cell because it had originally been benign but because it went so long without being found, it became cancerous and spread to her liver.”
Payton was grateful that she never stopped pushing for answers and that the most important thing she did for her daughter was to be Dorothy’s advocate.
“I walked away glad that I pushed for them to look deeper,” Payton said.
Instead of being sent home as was originally planned, a medical team was immediately assigned to Dorothy’s case and within a week, treatment began to destroy the cancer.
Wyoming Rallies Around Dorothy
Even before they knew what type of cancer Dorothy had, a social worker was assigned to their case and told Dorothy’s parents she was glad that they were from Wyoming since there was an organization that specifically helped families like them in the Cowboy State.
“She told us that there's this wonderful organization who is going to help you so much,” Payton said. “We filled out a one-page application and became part of Jason's Friends.”
Riley and Payton had never heard of Jason’s Friends but were extremely grateful when they realized they would be able to be with Dorothy as she went through her cancer treatment because of the financial help they would receive.
“It is pretty emotional when we help families,” Director Christine Robinson said. “We are very unique because there isn't anything like Jason's Friends anywhere else and you can almost feel the stress being lifted off of families when they realize they can concentrate on their child and what's happening with them.”
Jason's Friends Foundation was founded 30 years ago because in Wyoming there is no pediatric treatment center in the state and to treat childhood cancer, families like the Pontillos face travel expenses and unplanned leave from work. Nearly 200 families are currently enrolled in the program.
“We take care of their household bills at home, such as mortgage, car payments, utilities, phone bills, and then covers their travel expenses, which can be lodging, fuel and food while they're gone,” Robinson said. “We also help with medical insurance deductibles.”
The money is mostly raised by private donors, and their only fundraiser is the annual Bowl for Jason's Friends. This year there will be three events, the first held in Casper at El Marco Lanes on February 28. Two other events will be held in Gillette and Cheyenne in March.
Payton said that when Jason's Friends paid their bills, what they really gave them was the gift of being present with their daughter, both physically and emotionally, because they were not stressed or concerned about paying their bills, and could be emotionally present with Dorothy.
Little Survivor
Robinson came to know the Pontillo’s well during Dorothy’s cancer fight and celebrated when Dorothy was released to go home.
“Dorothy was in treatment from June until September with constant trips to Denver,” Payton said. “She underwent four cycles of chemo and ended up having an almost 13-hour long surgery to remove that tumor.”
The tumor had adhered to all of Dorothy’s internal organs, and the medical team meticulously separated the tumor away from the small girl’s organs.
“We were never not with her and that's because of Jason's Friends,” Payton said. “That she was never alone was such a blessing because it broke my heart to walk by hospital rooms and see children alone because their parents didn't have an option to be with them.”
Dorothy is 3 1/2 years old now and her parents say that to look at her, you would never realize how she had to fight to live. If you ask Dorothy her name, Payton said, she will say that her name is Dorothy Ray of Sunshine.
“She's very thoughtful and kind,” Payton said. “She loves dress up and is constantly chasing her big sisters around and just trying to keep up with them.”
The family are expecting another baby in May and Dorothy is excited to become a big sister. As Payton describes her daughter’s enthusiasm for life, she reflects on their many fruitless trips to the doctors’ seeking answers.
“I walked away from this journey with one thing very clear to me, and that was that you will never regret advocating for your child,” Payton said. “You might regret if you don't, but you will never regret if you do, because if you're wrong, then that's okay.
“You just need to know what the whole story is.”
Jackie Dorothy can be reached at jackie@cowboystatedaily.com.
