If you want to make this country great, imagine the strength of a nation whose children have been fought and know They have fought.
Last month, my son reached two years in remission for a weird and malignant cancer that almost brought him attention and his life. He is alive, well and enjoy the 20/20 vision due to an innovative treatment that was Pioneer by researchers from the National Health Institutesamong others, and funded by the Government subsidies The Trump administration is blockade and threatening to cut. If the president continues in this course, the children diagnosed during and after this administration will be unnecessarily worse than those who came before.
My son Jack was diagnosed in 2022 with retinoblastomaAn evil childhood cancer of the central nervous system that originates and grows in the eye. If it is not, it usually migrates through the optic nerve to the brain, finally metastasis and removing the child's life.
Because cancer generally attacks children under 3, their victims often cannot inform the symptoms of a mass that blocks their vision until it is too late to deal with procedures that can save the eye. That is when enucleation, elimination of the eye is required.
This is the reason why pediatricians developed standard detection for retinoblastoma from birth. This now preventive care has allowed medical 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 the 21st century of America.
Jack was one of the few documented diagnoses with retinoblastoma after 8 years. His oncologist suggested that his tumor had been hiding in a dark corner of his retina for years, outside his vision and that of doctors; Other doctors thought he had “self-open” or presented late and grew rapidly. We discovered it just because it broke out of the impact of a belly failure on the neighborhood pool, throwing cancer cells in a venomo constellation floating inside its eyeball still intact, visible for Jack as points that did not disappear.
Doctors took weeks to nail the diagnosis. When we left that appointment on such a wind that I had to hold on to my dress, I put Jack in the car, I turned on the radio, closed the passenger door and walked about 30 feet away to scream in the parking lot. “My baby!” I arrived by phone to my mother.
It was an advanced stage tumor, complicated by the release of cancer cells inside his eye. Now they could unite and grow anywhere inside, including the optical nerve, with its direct connection with your brain, if we do not act quickly. We could have a few days before it was too late.
“We could take our eye away,” our oncologist offered at first, “and even that might not be enough.”
Medical Researchers from Universities and the Meeting of National Health Institutes near the headquarters of the Department of Health and Human Services in Washington.
(John McDonnell / Associated Press)
Then he explained that we could try to save his eye with a very advanced procedure called intra -arterial chemotherapyor IAC. It implies threading a catheter through the femoral artery of the thigh, behind the heart through the carotid artery and towards the skull. An interventionist radiologist, guided by MRI, releases the chemotherapy agent directly to the artery that feeds the retina. This allows doctors to deliver more aggressive and specific medicines to sick cells and limit damage to healthy.
Our oncologist explained that IAC is still a very new technology, but one with an extraordinary promise whose benefits far exceeded the risks for Jack.
My son underwent six rounds of intra -arterial chemotherapy and seven rounds of intraviteal chemotherapy, in which the medicine is injected directly into the eye. He put anesthesia 13 times in six months, required monthly breathing treatments that made him spit gray foam, and lost most of the forehead and all the eyelashes around the affected eye. Its drug list included ketamine, propofol, hydromorphone, melfalan, fentanyl, topotecan, pentamidine, albuterol, prednisolone and aldosterone. At one time, I needed epinephrine because it almost entered cardiac arrest. Towards the end of his treatment, he received cryotherapy to kill the base of the tumor and woke up from surgery with so much pain that he pressed his teeth to the point of cracking.
At every step, my family recalled our privilege: living in a country that was scientifically advanced enough to have developed such miraculous treatments, to live in a city (Denver) with such good hospitals, have a good health insurance through my husband's employer. If we had lived without such access to attention, in a country that lacks our resources or only 15 years before, our history would have ended differently. On the other hand, nine months after his diagnosis, thanks to the advanced research that our country has supported socially, academically and financially, my son's cancer was in remission.
Recently, my family attended a meeting with other retinoblastoma survivors, from young people to adults who had conquered the disease decades before. As each survivor entered the conference, it became clear that this was once mainly a blindness: the price of survival was generally a loss of view and eyes. Some of the major survivors had facial abnormalities by radiation or enucleation. Some had sticks or relatives to guide them. When we told the group that Jack's body, the vision and dream of becoming a pilot were still intact, many were amazed that science had advanced so far.
But now the lack of empathy of the Trump administration threatens other children and families that face such horrible diagnoses. Continuous research on intra -arterial chemotherapy and other treatments at the University of Colorado Anschutz Medical CampusWhere Jack was treated, he is paid by programs in the administration. “These cuts so that NIH funds endanger the basis of our research that saves lives,” said a University spokeswoman for Chalkbeat Colorado. “The reduced research capacity means less scientific discoveries, losses of jobs and advances delayed in therapies and priests that could improve and save lives.”
I wonder if our hospital can continue offering innovative treatments if Jack faces a recurrence. And the newly diagnosed will have the same access to the attention we had? What greatness can be celebrated when a mother fears that she loses her son's access to the treatment that saves lives?
The recovery of my son was a direct result of the greatness of our country and its previous leaders, who had the forecast to follow progress and excellence in science and refuse to accept the loss of children without fighting. Therefore, I think my son will one day fly. And I can only expect the next child who faces a serious illness to have the same opportunity as he did.
Dayna Copeland is a writer and teacher in Colorado.
