Hi my name is Mae. My almost 4 month old son was diagnosed with Neuroblastoma cancer 4s on July 31st.
It's been a 2 month struggle to find out what was wrong with my little guy. He is the youngest of twin boys.
He started out having a "bloated" belly. His pedi said it was just gas and constipation, but I wasn't buying it. I begged his Dr. to do tests, and he wouldn't do it, just sent us home at his 2 month appointment.
We took him to the ER to get some answers. They did an xray and CT scan and found he had an enlarged liver. We were immediately transferred by ambulance to the Univ. of MO Children's hospital. We were in the hospital for 5 days. They ran every test under the sun and still they didn't know what was wrong with my little boy. It was so rough to watch him go through all this being so young, and being away from his big sister and twin brother. I'm so thankful my wonderufl husband was by my side through it all.
After 5 days in the hospital and numerous tests, they sent us home to be seen as out patients.
On July 31st they did a liver biopsy and finally got a diagnosis. Neruoblatoma 4s. Which our Dr's have said is the best kind to have at his age, so I'm clinging to that!
They have done CT scans, xrays, ultra sounds, MRI's, MIBG scans, bone scans, bone marrow draws, TONS of blood work, urine and stool tests too. And of course the liver biopsy. They've done so much to the little guy!
As far as treatment goes, he won't be getting any for the moment. Every month he will go in for a urine test, and then every 3 months they will do CT scans, MRI's, and an MIBG scan to monitor the cancer.
His liver is still large, though I think it's gone down a little. He also had a marble sized tumor on his adrenal gland that is already dead.
I know my Super Keegan is a fighter and he'll come through this just fine!
Thank you all for reading. It's been rough not knowing anyone else going through this. Keegan is the only Neuroblastoma patient at the hospital.
Mae
"This has been one of the most supportive places I have ever been. I found MDJ by mistaking looking for drs to help me with my many health issues and since that day over a year ago I have found a tight nit little family that keeps me going when the times are tough and offers me a place of retreat to share my successes and failures with others. I get to see the humor and seriousness of what I experience as well as the resources to learn about my health conditions. Thanks MDJ" (peasha)
