Owen’s journey with neuroblastoma began around the 2nd week of June 2017. My wife had taken him to our new pediatrician in Lancaster, CA (we just relocated for my job) for an issue with dry scalp. The pediatrician noticed a hard area around the left side of his abdomen. He thought that his spleen might be inflamed. We were told to come back in three weeks.
Three weeks later, still the same issue, so blood work was ordered which came back clear. Owen was referred for an ultrasound. The ultrasound picked up a mass between his kidney and spleen. The ultrasound paperwork said that it resembled neuroblastoma (which we had never heard of before), but needed to see an oncologist at Children’s Hospital LA for more tests to either confirm or deny.
A few weeks ago Owen had more blood and urine drawn as well as a CT scan. The blood still came back negative, while the urine came back with increased levels of certain catecholamines that are only elevated when neuroblastoma is present. The CT scan also revealed that his left adrenal gland had been entirely taken over by the growth. The next step to officially diagnose Owen with neuroblastoma was to have a scan known as an MIBG. Owen was injected with a radioactive isotope and 24 hours later, he was sedated for his roughly two hour long scan.
About a day later (July 21st), we received confirmation that our sweet 15th month old boy indeed had neuroblastoma and that it has spread to two places in his left leg. Since it has spread, he is classified as stage IV. We all went down to CHLA yesterday to speak with the pediatric surgeon, receive and X-Ray of his left leg, and meet with his oncology group. We set an appointment for Wednesday, August 2nd, to have a biopsy performed on the main adrenal tumor and have a chemotherapy port inserted near his chest for when his treatment begins. He will also be having two bone marrow samples extracted from his pelvis in order to see if the cancer has spread there (MIBG scan doesn’t pick that up).
After the biopsy results, the chemotherapy will begin in hopes of removing the growths in his leg, stop any further spreading, and to shrink the adrenal tumor enough for safe removal.
After the tumor removal surgery, he will need to be put on another round of chemotherapy. While we do have insurance, we have been told that the portion that is not covered can be quite costly. Just the initial scans and labs have accumulated a few thousand dollars on our end (just in 1 month!!). He will need many more follow up scans on top of the expensive chemotherapy treatment. For every trip we also have to drive almost two hours each way down to Los Angeles. The financial advisor at CHLA said that bills starting in the tens of thousands and up are typical during certain chemotherapy treatments.
Anything will help. We want Owen to live a full and happy life and do not want the onset of financial burdens to influence our decisions and avoid the best possible treatment for him.
Thank you for your time and support,
Edric, Danielle, and Owen
- Quan Luu
- Nigel Norman
- Georgie Lamont
- Abby Shaw-Giles
- Jhonie Medina