.
I’m feeling Grateful, glee, good
Golly Gee I like the letter “G”
This tiger said it best. G words are great.
It’s crazy how one letter can change your life—just one extra sound. It can turn water into wine.
Jacob has Ganglioblastoma Note the G. This is the benign form, the mature version of Neuroblastoma.
About a month ago we got back scans and they were not NED. After months and months of clear scans. We were even planning on requesting from the hospital to move him to 4 months scan schedule or even more was our hope as we hated him getting so much radiation every 3 months.
Relapse was not on the mind, but that is when cancer hits you so I’ve learned, when you least expect it. As it prides itself to “expect the unexpected.”
But when he came. We were prepared. We both took our warrior positions, Steve calling doctors, and me focusing on words with “G.” Chanting for a ganglioblastoma miracle and of course spiraling into a depression. As the odds are high for relapse.
But I forgot…the odds don’t exactly work with this family.
The spot in question on his scans was not exactly a surprise. It is a piece of his original, tumor that wrapped around his aorta. This is from the origin site in his lower back.
We knew that the surgeons could not get the whole tumor. They had to make the call of leaving a little behind. Jacob had been under general anesthesia for over 12 hours at that point it was dangerous and the surgeon said “it looked different” from the rest of the tumor.
I remember being devastaed. In waiting rooms when I swapped stories with a cancer mom, you could see their breath stop when I mentioned that they didn’t get the entire tumor. Of course cancer moms our trained to not show expression and therefore, she played it cool, but I could hear it. I could see her mind racing. “At least that didn’t happen to my child.”
Even in the cancer wards I felt like the 1%. Statisically anomaly that you can’t stop watching and some scientist would love to study.
So when the head doctor called who for the record has not called us in over 2 years, I was prepared…for the worst, but he called us because it was the best, nope GREAT.
It showed GANGLIOBASTOMA! Which yes is a tumor that does need to be taken out as it is growing, but it is NOT CANCEROUS. That is all that matters.
So I’m feeling grateful, good and yes, GREAT.
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