07/24/2025
GoFundMe Update/Jia’s Prognosis & Treatment Plan:
To all of our amazing supporters:
Thank you from the bottom of our hearts for helping us reach our $100,000 fundraiser benchmark. We can’t express enough how much it means to us that so many people have given so generously.
Last week, we had a really bad scare with Jia. She woke up on Thursday, 7/10, with leg pain, which brought us to the ER for an X-ray and then an overnight stay at the hospital so we could get an MRI. The MRI showed lesions on Jia’s legs, and the team was worried that her cancer had relapsed. After an excruciating week of waiting, we were able to do a repeat MIBG scan, which — thank God — showed no cancerous lesions.
During this time, we received an outpouring of love, prayers, and well-wishes. We also received many questions about the implications of new lesions, which I simply didn’t have the energy to answer. Now that we’ve passed that hurdle, I think it’s a good time to share more information about Jia’s disease and her path forward for treatment in the coming months and years.
Jia’s official diagnosis is MYCN-amplified high-risk neuroblastoma. Fortunately, this is a cancer that can be treated. Unfortunately, it is one of the hardest—if not the hardest—pediatric cancers to treat, with statistically the lowest survival rate among treatable pediatric cancers.
Tumors with MYCN gene amplification tend to be more aggressive, more resistant to some treatments, and more likely to relapse.
Historically, MYCN-amplified high-risk neuroblastoma had a 5-year survival rate of 30–40%, meaning only 30–40% of children survived past the 5-year mark (the point at which this cancer is considered “cured”). Our oncologists have reassured us that with recent advancements in treatment, the 5-year survival rate is now closer to 60%.
The reason this cancer has such a poor prognosis is that relapse is common, and if a child’s cancer returns, it is extremely difficult to treat. Only about 10% of children survive relapse. This is why we were so terrified last week, and why we were so relieved that Jia’s MIBG scan did not show signs of relapse.
I share these statistics because I want everyone to understand the reality of the journey ahead. Even after we finish the next 4–6 weeks of transplant, we will have 2.5 weeks of radiation, followed by 6 months of immunotherapy. Then—if, God willing, Jia is still in remission—it will likely take another full year for her immune system to recover.
Once Jia enters full clinical remission, our lives can start to return to “normal.” However, in a strange way, this is the part of the journey that scares me the most: the surveillance phase—waiting, hoping, and praying that relapse doesn’t happen before we reach the 5-year mark, when Jia will be about 9 years old.
I only allowed myself to truly feel the magnitude of this terrifying truth a few weeks ago, after we returned home from her first transplant. Until then, it felt like we were simply surviving day by day, week by week. I couldn’t even allow myself to comprehend what the next month held, let alone the next few years. Once I did start thinking about long-term prognosis, the grief hit me like a truck. I felt gut-punched by the fact that a 60% 5-year survival rate was considered an “improvement.” Because on the flip side of that is a looming, horrible 40%. How on earth could I make it through the next 5 years with those statistics haunting me?
Then we had the scare with the lesions on Jia’s legs, and all of my fears about the future were replaced in an instant with fears about her surviving the next month. Suddenly, I felt greedy for wanting to be guaranteed five years—I was begging God just to let Jia finish the next phase of treatment.
That experience shifted my perspective on Jia’s prognosis. Ultimately, even though the statistics will always be scary, they aren’t Jia’s story. She is an individual with her own unique journey. She is incredibly strong, resilient, and brave, and she has already overcome unimaginable obstacles. We are blessed for every minute we get to spend with her.
In the months and years ahead, when fear creeps in, I want to hold on to the relief I felt when our oncologist told us Jia’s MIBG scan was clean. After that phone call, I promised myself that I wouldn’t spend the next five years in terror like I spent the past week—unable to enjoy the precious moments I had at home with Jia.
We are already creating a “remission bucket list” with Jia—of all the places we want to go and the things we want to do once she’s in full clinical remission: traveling to Korea to see family, going to Disneyland, exploring new places. Your generous donations will not only help us get through the upcoming months of treatment, but will also allow us to make the most of every day we have with Jia once she is in remission.
We’ll never be able to fully express how touched we are by the gift you’ve given us—the ability to take time off work and be fully present with our sweet girl. Please know that each and every donation is appreciated and makes a meaningful difference in our lives.
With love,
Dena, Hoya, Jia, and Adela
Help Support Jia in Her Battle Against High-Risk Neuroblastoma … Joshua Nederhood needs your support for Support Jia's Fight Against High-Risk Neuroblastoma
