On August 14th, 2024, our world was shaken once again. Christian went for routine scans at MSK, and the results showed what we feared most — his cancer had returned for the fourth time. This time, doctors found a new solid tumor in the lower part of his left lung.
We were devastated. In May, earlier scans had shown what was thought to be scar tissue. But now it was clear — this was cancer coming back again. Since Christian only has one lung, surgery was considered far too risky. Our surgeon warned us that this was “the tip of the iceberg.” A solid tumor board was scheduled to discuss possible next steps.
A New Hope: Targeted Therapy
The day after, on August 15th, we met with his oncologist at Westchester. For the first time, there was a glimmer of hope through precision medicine.
Testing revealed that Christian’s tumor has an FGFR-1 mutation. This opened the door to a treatment normally used in bladder and kidney cancers: Erdafitinib (Balversa). This daily pill targets the specific mutation driving his cancer.
Christian is the first pediatric patient — and the first with lung cancer — to ever try this medication. To prepare, his doctor suggested practicing with mini M&M’s, then full-sized ones, to learn how to swallow the pill. Amazingly, Christian agreed.
One of the biggest risks is to his eyesight, so he now sees an eye doctor once a month. At his very first appointment, we also learned he needs glasses — and of course, he made everyone laugh through the entire visit.
The Insurance Battle
As if cancer wasn’t enough, we had to fight with the insurance company for seven long days before they denied coverage of this life-saving medicine. The cost? $29,000 per prescription.
We refused to give up. After countless calls and pushing forward, the medication finally arrived. Christian didn’t ask to be sick — and we believe no family should have to fight insurance companies for a child’s chance to live.
How He’s Doing
Christian has started Balversa. The pill is tough to swallow, but he is managing it. So far, he’s had some belly discomfort, but nothing that has slowed his energy or spirit.
His pulmonary function tests came back okay — which is wonderful news considering he only has one lung. His brain MRI was also clear, bringing us a huge sense of relief.
Radiation therapy is still on the table, and his medical team is exploring every option. If this medicine begins shrinking the tumor, there may even be a chance of surgery down the road, though it would be risky.
Our Next Steps
Christian’s next scans are scheduled for the beginning of October. Waiting for scan results is always the hardest part — full of nerves, prayers, and hope.
In the meantime, he continues to bring light to every room he enters. His personality, sense of humor, and strength inspire everyone around him.
Never Giving Up
This journey has taught us many things, but one lesson stands above all: we will never give up, and neither will his doctors.
Our goal is simple: stop the tumor from growing, shrink it, and give Christian the best chance to keep fighting and keep smiling.
Through all of this, he remains our brave, funny, amazing boy — a true warrior.
Please help us by sharing his story and his GoFundMe page with anyone that you can.
Christian's PPB Cancer Journey 