If you want to make this country great, imagine the strength of a nation for whose children have been fought and for and knowledge They were fought for it.
Last month, my son reached the remission of a rare, malignant cancer, which almost grasped his eye and his life. He lives well and enjoys 20/20 vision because of a groundbreaking treatment Pioneering work by National Institutes of Health ResearchersAmong other things and financed by the Government grants The Trump government is blocking And threaten to. If the President continues this course, children who were diagnosed during and after this administration become unnecessarily worse than those who have come before.
My son Jack was diagnosed in 2022 with RetinoblastomaA malignant child cancer of the central nervous system, which comes in mind and grows. If it stays untreated, it typically hikes to the brain through the optic nerve, which ultimately metastasis and takes the life of the child.
Since the cancer usually attacks children under 3 years, its victims can often not report the symptoms of a mass that blocks their eyesight until it is too late to treat procedures that can save the eye. Then the enuclation – removal of the eye – is required.
For this reason, pediatricians developed a standard screening on retinoblastoma that was dismantled at birth. This now routine provision has enabled medical specialists to find and treat most cases without loss of vision or life. Due to these and other developments, the retinoblastoma in America of the 21st century has a very high survival rate.
Jack's was a very few documented diagnoses with retinoblastoma after the age of 8. His oncologist suggested that his tumor had hidden in a dark corner of his retina for years, in his view and that of the doctors. Other doctors thought that it had “stared” or late and grew quickly. We only discovered it because it broke out from the effects of a belly flop on the neighborhood pool and broke out cancer cells in a constellation of poison that hovered in his still intact eyeball and Jack was visible as spots that did not disappear.
It took weeks for doctors to nail the diagnosis. When we left this date on a day that was so windy, I had to hold my dress, I put Jack in the car, switched on the radio for him, closed the passenger door and went about 30 feet away to scream in the parking lot. “My baby!” I whined my mother through the phone.
It was a tumor in the advanced stage that was complicated in his eye by the release of cancer cells. They could now attach and grow everywhere – including the optic nerve, with their direct connection to his brain – if we didn't act quickly. We may only have a few days before it was too late.
“We could remove his eye,” our oncologist first offered, “and even that couldn't be enough.”
Medical researchers from universities and the National Institutes of Health gather near the headquarters of the health and human service in Washington.
(John McDonnell / Associated Press)
Then he explained that we could try to save his eye with a highly advanced process that is called Intraarterial chemotherapyor iac. It is about threading a catheter through the thigh artery of the thigh, behind the heart through the carotid artery and in the skull. An interventional radiologist led by the MRI feeds the chemotherapy agent directly into the artery that feeds the retina. This enables doctors to provide the diseased cells more aggressive and more targeted medicine and to limit the damage to the healthy people.
Our oncologist explained that IAC is still a very new technology, but one with an exceptional promise, the advantages of which previously predominated the risks for Jack.
My son underwent six rounds of intra-arterial chemotherapy and seven rounds of intravitry chemotherapy, in which the medication is injected directly into the eye. He went under anesthesia 13 times in six months, required monthly breathing treatments that made it gray to spit gray foam, and lost most of the forehead and all eyelashes around the affected eye. His drug list included ketamine, propofol, hydromorphone, melphalan, fentanyl, topotecan, pentamidine, Albuterol, prednisolone and aldosterone. At some point he needed Epinephrin because he almost got into the cardiac arrest. Towards the end of his treatment, he received cryotherapy to kill the base of the tumor and woke up of so much pain from the operation that he played his teeth together with a crack.
At every turn, my family was reminded of our privilege – to live in a country that was scientifically preferred enough to have developed such miracle treatments in order to live in a city (Denver) with such good hospitals in order to take out good health insurance from my husband's employer. If we had lived without such access to care, in a country in which we are missing in our resources or only 15 years earlier, our story would have ended differently. Instead, nine months after his diagnosis, thanks to the advanced research that our country supported social, academically and financially, my son's cancer was in remission.
My family recently took a meeting with other retinoblastoma -surviving part, from toddlers to adults who had conquered the disease decades ago. When every survivor entered the conference, it became obvious that this was once primarily an illness of blindness: the price of survival was generally a loss of vision and eye. Some of the older survivors had facial anomalies through radiation or enuclation. Some had sticks or family members to lead them. When we told the group that Jack's body, vision and dreams of becoming a pilot were still intact, many grabbed that science had previously driven.
But now the lack of empathy threatens the Trump government with other children and families who confront themselves with such terrible diagnoses. Continuation of research on intra -arterial chemotherapy and other treatments at the University of Colorado's Protection Medical CampusWhere Jack was treated, the administration's cross -country crossing is paid for by programs in the crossroads. “These cuts in NIH financing endanger the basis of our life-saving research,” a university spokeswoman told Colorado. “Reduced research capacity means less scientific discoveries, job losses and delayed progress for therapies and healings that could improve and save life.”
I wonder if our hospital will be able to continue to be able to offer groundbreaking treatments. And will the newly diagnosed access to the care we have made? What size can be celebrated if a mother fears that she loses the access of your child to life -saving treatment?
The recovery of my son was a direct result of the size of our country and its former leaders, who had the foreseen to pursue progress and excellence in science and refuse without accepting children. For this reason, I believe that one day my son will fly planes. And I can only hope that the next child who is exposed to a bad illness has the same chance he did.
Dayna Copeland is a writer and teacher in Colorado.