During this meeting options were discussed. “What was next?” was my biggest question. Our oncologist said there were a few routes we could go-
::: Go Home-either with “help” or on Hospice (just for the record I HATE the word HOSPICE!!!)
::: Surgery-We could go in and try to remove this “tumor” but as shown it will just grow back again and why put Keegan through another crainotomy and the recovery with much higher risk of infection?
Full Brain-NOT AN OPTION-this would drop Keegan’s IQ immediately down 15-20 points- giving him severe and profound metal retardation
Focal radiation- This radiation would be a beam directed to the specific tumor and try to kill off a lot of those tumorous cells.
::: Oral Chemotherapy-(Maintenance) is what they call it. It would be the oral form of Etoposide (this drug is known to cut blood supply off to tumors.)
::: Clinical Trials-We could look into clinical trials at any of the larger children’s hospitals throughout the country that participate in them. I asked him to look into trials and second opinions at CHOP-Children’s Hospital of Philadelphia, St. Jude, and Boston’s Children Hospital.
My only problem with this option was that my husband and I found ourselves wondering well “what if its not tumor and we radiate regular brain?” We posed this to the oncologist and our neurosurgeon. They had been trying to think of ways to test what was there without going into surgery as well. In fact they both admitted to us that they were kept awake many a night thinking about our situation and what to do.
On Tuesday August 17th we drove up to Riley for the best solution possible to “double check” that it was for sure tumor and not regular brain. He was sedated and taken for a 3 hour long MRI that was comprised of many different types of scans. We drove home knowing we wouldn’t hear anything right away.
On Wednesday the 18th at around 8 am I got handed some more lemons, these ones were sweet and not sour at all. It was our neurosurgeon, what they thought was tumor in fact WAS NOT tumor and was either contused brain or old dead tumor. These were the words I was longing to hear, these were the words I had been praying for for weeks, these were the words we deserved to hear! The doctors were wrong the tumor had not grown back and he was not on his death bed! Shortly after she called our oncologist called to tell me more of the specifics. He said he was getting ahold of the radiation facility and canceling our future radiation scheduled to start 2 weeks later and we were to come back up to Riley the next day to get Round 4 of his chemo started back up! I couldn’t have been more happy!
So here I sit, next to a sleeping 11 month old bald baby boy, who has had nothing but lemons thrown at him for the last 5 months. He is a fighter, our oncologist told me that he is pretty sure he should not have made it out of the first trimester because of all his genetic abnormalities. We are still pretty far behind developmentally. We are working hard every day though, hopefully soon he will be able to sit on his own and progress to crawling and walking. I am not pushing anything, we don’t take any time for granted but know that Keegan will develop and flourish in his own time.
How ’bout THEM lemons?