Thanks to Sam and Kyle for posting on the ACOR listserv encouraging "old timers" to visit this space. I'm not a newbie but hardly an old timer. When my son was diagnosed, I reached out to Kyle after finding Ezra's story online.
My son, Wilson, was diagnosed May 26, 2013. He was 10 days shy of his first birthday. We thought he had a recurrent ear infection or mastoiditis (my hubs has ear problems so weird ear stuff seemed more likely than cancer) so took him to the ER on the Sunday morning of Memorial Day weekend. Parked in a two hour spot. Ha! The resident was quick to diagnosis an ear infection but the attending was visibly shaken by his belly size. Given he was nearly 9 lbs at birth, we thought a big belly was a good thing on a baby. Ultrasound showed a mass. CT of head showed the small lump behind his ear was connected to a softball sized mestasis. They called it a "good size"; I was like a good size? Or like a bad good size? Yeah, they meant good size as in huge. Ugh.
We were discharged six days later thinking, hoping, praying we were dealing with stage IV intermediate risk NB and would need 8-9 rounds of chemo. Got the call a week later that he was mycn amplified. A bummer to say the least.
One round intermediate risk protocol chemo, give rounds of high risk chemo, resection surgery (lost both adrenal glands), BuMel stem cell transplant, 32 rounds of radiation (each under general anesthesia), and immunotherapy.
Currently followed by oncology, endocrinology, kidney disease, and audiology.
We have never been NED but are nearly two years off treatment. Scans in September. He is negative for ALK and PHOX2B.
If you would like to follow or read more about Wilson, feel free to check out our caringbridge site.
Love to all who have fought or are fighting.