Stephen's Fight - Stage 4 Neuroblastoma

Our sweet, energetic 3.5-year-old son was diagnosed with Stage 4 Neuroblastoma, a rare cancer that ~500 kids get annually. Stephen’s MRI (4/20/23) revealed two tumors + lesions all over his hips and legs… 6 weeks ago he started limping & we thought it was an injury from horse-playing with his big brother. After two weeks, we took him to the orthopedic and the X-rays were clear: "Give him ibuprofen for the pain & if the limp persists, bring him back". Two weeks later, the X-rays were still clear so, the pediatrician ordered blood. The blood results took three days and the pediatrician was alarmed by the high inflammation markers: normal is ~30 but, Stephen's was at 85!

We rushed to Miller Children's Hospital (Long Beach, CA) and spend the day poking him. All test results were negative and we were sent home: "No leukemia, no neurological infections, etc... He has a virus that needs to work itself out." We were breathing easier and decided to take the boys to Candyland for a day of fun... but, the following day, Stephen woke up super sore & even more sensitive. Mom had a feeling that something was gravely wrong so, we returned to the hospital and asked for an MRI.

I stayed overnight at the hospital. Then, on the morning of 4/20/2023, five doctors showed up in our room to deliver the worst news in my life: "The MRI indicates that your son has some sort of cancer attacking his bones. He has lesions all over his hips and legs. We have seen these results on patients with stage 4 neuroblastoma... we have to do a CT scan of his stomach and chest and pinpoint the main tumor". My first reaction was to ask 20 questions and poke for uncertainty/confusion on the doctor's assumptions... but, when they showed me the MRI... I saw my son's lower body sprayed with rice-sized holes throughout his bone structure... I started crying uncontrollably for 10 minutes... was this a death sentence?! How do I tell my wife, his mom?!

I texted my wife: "You need to get in the car & safely drive to the hospital. The doctors want to talk in person". My wife already suspected I knew the bad news so she called me frantically and wanted me to reveal the news over the phone... I wanted it to, but I couldn't risk her emotions clouding her driving to the hospital. She parked, we met at the lobby, and I shared the unfiltered truth on the ride up the elevator... we broke down in tears... and then met with the doctors to review the details of this preliminary diagnosis.

The CT scan results arrived the next day (Friday 4/21/23) and they revealed two tumors: the central tumor is in his adrenal glands and the secondary tumor is around one of his ribs. We wanted to rush and get a biopsy on the tumors but, the hospital would have to wait until Monday. At that point, we asked to be discharged and bought one-way tickets to Boston, MA. We wanted a 2nd opinion at the Boston Children's Hospital. However, within 24 hours we changed strategy... we quickly learned that the very best pediatric research & treatment for neuroblastoma was 22 miles from our home at the Children's Hospital Los Angeles (CHLA ).

I blasted my social network for a CHLA contact so we can be admitted ASAP. Within hours, our network of friends responded with amazing contacts + resources. Stephen's oncologist graciously booked us for an urgent appointment on Monday 4/24/23 at 11 am PST. There, she agreed with the original diagnosis and booked our son for Thursday 4/27/23 surgery: 1) biopsy, 2) bone marrow test, 3) install a central port (aka. medcom).

Chemotherapy treatment started on Friday 4/28/23. Stephen is scheduled for the most aggressive treatment that can be administered to a kiddo: 5 cycles of chemotherapy + 2 cycles of radiation + 5 cycles of immunotherapy. In this first cycle, he has 5 days of daily chemo, and if he doesn't develop a fever/infection, he can go home for a couple of weeks and return for cycle #2 (another 5 days of daily chemo). If no further complications develop, his full treatment plan will last ~2 years.

Spiritually, we know that our son is on loan to us and that our next second is never warranted. Physically, I wake up with a heavy boulder on my chest that wants me to cocoon like a baby. Emotionally, this is super messy... our eyes keep bursting with tears in the most random ways.

THANK YOU for being a Prayer Warrior for our son. And thank you for any contribution you are moved to make. We will use 100% of the funds towards the financial strains caused by this unexpected journey. And any unused funds will be donated to CHLA and their wonderful team.

If you want to skip the fees, Venmo us directly: @Yovany-Jerez

Here‘s the link to my Venmo profile.

And if you are the parent of a neuroblastoma kiddo, please connect virtually via LinkedIn and I would love to hear your story and learn from your observations/wisdom: https://www.linkedin.com/in/yovanyjerez/