If you want to make this country large, imagine the strength of a nation whose children have been fought and know They were fought.
Last month, my son reached two years of remission of a rare and clever cancer who almost attracted his attention and his life. It is alive, well and benefits from the 20/20 vision due to a revolutionary treatment which was Pioneer by the National Institutes of Health Researchersamong others, and funded by the government grants The Trump administration is blocking And threatening. If the president continues on this course, children diagnosed during and after this administration will be unnecessarily worse than those who preceded.
My son Jack was diagnosed in 2022 with retinoblastomaMaman infantile cancer of the central nervous system that comes and grows in the eye. If he is not treated, he generally migrates through the optic nerve to the brain, ends up metastal and taking the life of the child.
Because cancer generally attacks children under 3, its victims are often unable to report symptoms of a mass block until it is too late to deal with procedures that can recover the eye. It is then that enucleation – elimination of the eye – is necessary.
This is why pediatricians have developed standard screening for retinoblastoma from birth. These preventive care now routine have enabled health professionals to find and treat most cases without loss of vision or life. Due to these developments and others, retinoblastoma has a very high survival rate in 21st century America.
Jack's was one of the rare documented diagnoses with retinoblastoma after the age of 8. His oncologist suggested that his tumor has been hiding in a dark corner of his retina for years, out of his vision and that of doctors; Other doctors thought he had “arrested” or presented himself late and developed quickly. We discovered it only because it broke out the impact of a belly flop at the pool pool, spitting cancer cells in a constellation of floating poison inside its still intact eye globe, visible by Jack as spots that are not gone.
Doctors took weeks to nail the diagnosis. When we got out of this appointment during a windy day that I had to hold my dress, I put Jack in the car, lit the radio for him, closed the passenger door and traveled about 30 feet to shout in the parking lot. “My baby!” I groans my mother's phone.
It was a tumor at an advanced stage, complicated by the release of cancer cells in his eye. They could now attach and grow anywhere inside – including the optic nerve, with its direct connection with its brain – if we do not act quickly. We could only have a few days before it is too late.
“We could remove his eye,” proposed our oncologist at the start, “and even it might not be enough.”
Medicine researchers from universities and national institutes of Health come together near the headquarters of the Department of Health and Social Services in Washington.
(John McDonnell / Associated Press)
He then explained that we could try to save his eye with a very advanced procedure called Intra-arterial chemotherapyor IAC. This implies filming a catheter through the femoral artery of the thigh, behind the heart through the carotid artery and in the skull. An interventional radiologist, guided by MRI, releases the chemotherapy agent directly into the artery supplying the retina. This allows doctors to provide more aggressive and targeted drugs to sick cells and limit damage to healthy people.
Our oncologist explained that IAC is always very new technology, but that with an extraordinary promise whose advantages carried it by far on the risks for Jack.
My son has undergone six cycles of intra-arterial chemotherapy and seven cycles of intravitrean chemotherapy, in which the drug is injected directly into the eye. He went under anesthesia 13 times in six months, required monthly respiratory treatments which made him spitting gray foam and lost most of the forehead and all the eyelashes around the affected eye. His list of drugs included ketamine, propofol, hydromorphone, melphalan, fentanyl, topotecan, pentamidine, alboterol, prednisolone and aldosterone. At one point, he needed epinephrine because he almost stopped heart. Towards the end of his treatment, he received cryotherapy to kill the base of the tumor and woke up from surgery in so much pain that he clenched his teeth to the point of cracking one.
At each turn, my family was recalled our privilege – to live in a country sufficiently advanced scientifically to have developed such miracle treatments, to live in a city (Denver) with such good hospitals, to have good health insurance through my husband's employer. If we had lived without such access to care, in a country without resources or only 15 years earlier, our history would have finished differently. Instead, nine months after its diagnosis, thanks to the advanced research that our country supported socially, academically and financially, my son's cancer was in remission.
My family recently attended a rally with other retinoblastoma survivors, from toddlers to adults who had conquered decades earlier. While each survivor entered the conference, it has become obvious that it was formerly mainly a disease of blindness: the price of survival was generally a loss of sight and eyes. Some of the older survivors had facial radiation or enucleation anomalies. Some had rods or family members to guide them. When we told the group that the body of Jack, the vision and the dream of becoming a pilot were still intact, many have been praising that science had advanced so far.
But now, the lack of empathy of the Trump administration threatens other children and families facing such horrible diagnoses. Continuous research on intra-arterial chemotherapy and other treatments at the University of Colorado Anschutz medical campusWhere Jack has been treated, is paid by programs in the administration reticulus. “These NIH financing cuts compromise the foundations for our vital research,” said a university spokesperson at Chalkbeat Colorado. “Reducing research capacities means fewer scientific discoveries, job losses and delayed progress on therapies and remedies that could improve – and save – lives.”
I wonder if our hospital will be able to continue to offer revolutionary treatments if Jack was to face a recurrence. And will the newly diagnosed will the same access to the care we have made? What greatness can be celebrated when a mother fears that she will lose her child's access to the rescue treatment?
The restoration of my son is the direct result of the greatness of our country and its former leaders, who had the foresight of continuing progress and excellence in science and refusing to accept the loss of children without fighting. Because of this, I think my son will one day steal planes. And I can only hope that the next child in front of a terrible illness will have the same chance as him.
DAYNA Copeland is writer and teacher in Colorado.
