Carlos Romero (and) his father Juan recall the moment they got the call in 2017 about an anonymous donation that helped Carlos beat a rare form of bone cancer. – DENISE CROSBY/The Beacon-News/Chicago Tribune/TNS
WHEN the email came in from Juan Romero asking that I give him a call, I have to admit I did so with some apprehension.
The last time I had spoken with him, in February 2017, the Aurora, Illinois, father was desperate: His then-nine-year-old son, Carlos, was battling a rare and deadly bone cancer that tends to hit children and young adults. And he was struggling to come up with the money needed for an expensive drug, not approved in the United States, that could keep his son’s cancer in remission.
Without it, he told me back then, the tumors his son continued to develop would likely come back and doctors admitted there were no more treatment options.
The good news was the Aurora community had gone to bat for the family time and time again. And this single dad who had just had his part-time benefits cut, was nothing but grateful for the US$50,000 (RM233,000) that was raised from a GoFundMe campaign, as well as from church fundraisers and raffles held by McCleery Elementary School, where Carlos was a fourth grader.
That money allowed Juan to pay for half of the 48 treatments his son needed over a nine-month period. But the problem was, how do you go back to the same well and ask for another US$50,000? How do you continue to beg for money when you know there are so many other needy people also struggling with life-threatening challenges?
Turns out, after this story got out to the public, he didn’t need to.
Angel in disguise
When I called Juan just recently, he quickly assured me his son not only was alive and well, Carlos remained a straight-A student even after missing so much school and, as a junior at West Aurora High School, is a member of the National Honor Society and excelling in extracurricular activities.
He then told me why: After the column ran in February of 2017, an anonymous donor came through with a US$50,000 check.
This update may have been a long time coming, but is well worth the wait. As was my Wednesday afternoon visit with Juan and his two kids at their home on Plum Street, where the 59-year-old father emotionally recalled that moment he learned Carlos had a fighting chance to beat osteosarcoma, which he’d been battling since age seven.
He and his son were on their way home from yet another trip to Lurie Children’s Hospital not long after his story was published, when Carlos began asking his father about the money needed to continue with his treatments.
The account had gone dry by that time, but “I told him, don’t worry about it,” Juan remembers. “Then my phone rang.” It was the social work manager from Family Reach, a New Jersey-based foundation that offers financial lifelines for families fighting cancer, who told him there was a donor who wanted to help.
When Juan told the caller how much was needed, he expected the offer to be a few hundred dollars, maybe even enough to cobble together one more treatment.
“I had to pull the car over,” he said, after learning the amount was the full US$50,000. “Miracles really do occur.”
Determined parent
No one knows that more than Carlos, now a tall, healthy and obviously bright teen, who for years had to undergo repeated rounds of chemotherapy and surgery to remove tumors, including one that took half his left lung, only to have the cancer return again and again.
“I just remember my dad always seemed so stressed,” said daughter Daniella, now 15.
But Juan was also determined. After all, what choice does a parent have when a child’s life is at stake?
For one thing, because the needed drug was not FDA-approved, he had to convince the doctors to even begin the process of trying to get it into the country, which meant also convincing them that if they could get special FDA approval, he would be able to come up with the US$100,000 (RM466,000) to pay for it.
In addition to desperately seeking funds, Juan’s mission included repeated calls and visits to state and federal legislators, as well as trips to leading medical institutions like the Cleveland Clinic and the National Institutes of Health in Maryland.
Juan said he even considered moving to England in order to get the drug, which is available in Europe and is said to boost survival rates to around 80%.
According to the Osteosarcoma Collaborative website, even after clinical trials in the US, the drug has yet to get approval in this country, although some young patients, like Carlos, have been able to obtain it through the FDA’s compassionate use and personal importation programme, and since 2017 some have even gotten full coverage by health insurance.
Juan, who can give a detailed account of the red tape and constant denials families can face when dealing with an orphan disease like osteosarcoma, has no idea who gifted them with the US$50,000. Certainly both father and son would like to say “thank you” in person, but also understand and respect the request for anonymity.
Busy but good
Life since that phone call has been busy but good for the family. Juan, who was an accountant in Peru before immigrating in 2000 to this country, went back to school while working at Walmart to get a degree in logistics and is now looking for a career in that field.
Carlos, who got the all-clear news about his cancer last year, is a math-competition champ with plans to study engineering at Brigham Young University after completing his mission with the Church of Jesus Christ of Latter-day Saints.
“I obviously want to make money, not so I am rich but so I will not ever have to worry about this ever being a thing if something similar happens again to my family,” he told me. “I survived for a reason, to help someone else in the future.”
Likewise, his father, who continues to think about the children without access to the drug, is looking to better himself financially so he too can pay it forward when and if possible.
“One lesson I always taught my kids is perseverance,” he said. “We work hard. We try to do our best. We never give up.” – Chicago Tribune/Tribune News Service
