Yesterday I sat down with our Oncology Doctor, Dr. Dean, to review the remainder of Declan’s treatment road map. Stan and I wanted to gain a better sense of what to expect now that radiation is over.
Essentially, the remaining road map is less intensive. He will be receiving chemo every 3 weeks and barring any issues with his acceptance of a few of the new chemo drugs he will be receiving; we should be out patient for the remainder of his treatment in ending March 2011. In addition, Declan will have MRI’s at 1, 3, 6, 9 and 12 months (the 12 month will be at MD Anderson with his Radiation Doctor to be shared with our Oncology Doctors all others will be here). After the year, he’ll be re-evaluated as to whether they continue every 3 months for another year or spread out some.
It’s hard to believe we will not be spending as much time here at Fairfax. I’m actually waiting for discharge paperwork as I type this. While I’m glad that Declan will be able to be home with everyone (his Mommy is VERY excited about this part) I have this sense of melancholy for the folks we will not be seeing on a regular basis; both patients and caregivers. To say they have become special to us is an understatement. I certainly feel as though some are an extension of our family because of the bonds we have formed over the months Declan has spent within these 4 walls.
I’m not sure how to explain this feeling, I kind of feel as if I’m going off to high school or college or walking into my first job…the anticipation and excitement of being home is mixed with a little anxiety over knowing it’s just me and Stan every day from now on caring for Declan and making sure he’s safe and comfortable. That’s probably more dramatic than it needs to sound…I mean, we’re not being banished to some far off island where we’ll be on our own…a la Lost, minus the weird black smoke and people trying to kill us at every turn…we’ll be coming in for weekly count checks with our Oncology Group and visiting with Physical, Speech and Occupational Therapy every week. But it will be different.
The good news is this marks a big milestone for Declan, at least in our book, due to the less intensive treatment days. We’re hoping for easier times on his body and perhaps a return to more normal days of being a baby (at least on the off weeks).
My jubilation at our milestone is tempered, however, by the knowledge that 2 little girls, ages 2 and 3, were just diagnosed with Leukemia yesterday on Declan’s floor. I hate to know another family has been hit with this debilitating news. I pray only the best for these girls, their families and all the others families like ours battling this beast. In fact, I pray for these kids to return to their ‘norms’; a return to tea parties, learning to crawl, making mud pies, pool parties, football practice, riding bikes…heck, to just being a kid.