“Every man must decide whether he will walk in the light of creative altruism or in the darkness of destructive selfishness.” – Martin Luther King, Jr.
Obviously, I’m new to blogging. After being asked by a friend (who’s a much more experienced blogger, and now has her own website) about my blog’s audience and format (which I had no idea how to answer at the time), I have thought a lot about the direction of this blog. I decided that while I can easily write about myself in a journal style, and probably will at times, I want the blog to be less personal and MORE PURPOSEFUL. My audience is likely made up of my friends and family who already know me personally, as well as DSRCT patients and families from around the world that have found my blog through a web search. I hope that those who find their way here can benefit in some small way, finding useful resources and HOPE somewhere in these pages.
Next week, my son and I will travel to Houston for follow-up scans, which he’s been having in 6 week intervals since beginning a Phase 1 study of CAR modified T cell infusions. Every 6 weeks we go to Houston, and if the PET/CT or CT scan shows no new or progressive disease, Cole gets infused with another dose of his own genetically modified T cells. The infusion is quick and painless except for an IV stick, and Cole has had no side effects so far. The last scan showed decreased metabolic activity of the inoperable liver tumor (it’s lowest SUV since recurrence in 2010), along with a small nodule developing within the existing tumor. We are hopeful the tumor is mostly necrotic (i.e. dead cells) and the small nodule is the remaining active tumor cells (huddling together in fear). Since beginning the study in March of 2012, Cole has had seven infusions and no progression of disease. Each time we go for scans there is an element of fear and uncertainty, as the news from the scan could result in a total change in the treatment plan. But thus is the life of a cancer patient, and after 6 years we are used to it. While scanxiety is normal, we focus on remaining hopeful, and Having Only Positive Expectations. We are looking forward to our trip, as we will be visiting our friends at the Christus-Stehlin Foundation for Cancer Research. Cole’s going to get to work in the lab with the researchers!
As always, we try to make the trips fun any way we can. In six years of traveling to both New York and Texas for Cole’s medical care, we have fortunately been able to make most of our trips more like family vacations than dreaded medical travel. When possible, we find affordable or free fun activities to do aside from doctors appointments, bring along company like Nana, Cole’s cousins, his half-brother, or a friend, and have traditions like picking up candy from the Chocolate Bar for his infusions (the infusion creates an overwhelming smell and taste like creamed corn!). We stay at the Houston Ronald McDonald House when possible, not only because of the convenience to the Texas Medical Center and the significant financial savings, but because staying where there are other kids and activities to entertain Cole and the opportunity to meet other families in similar situations makes the trips less stressful. When we drive, we stop at historic sites and parks along the way. My friend who’s traveled with us in the past was always clever enough to create games and scavenger hunts for making the 17 hour drive with kids more fun.
Focusing on the positive, I can say that I have traveled more, seen more, and done more as a result of this cancer journey than I ever would have otherwise. I have been able to give Cole many more life experiences than I would have otherwise, and really know the value of our time together and make the most of it. We have visited countless local, state, and national parks, roadside attractions, museums, and historic sights. We’ve been to amusement parks, pro-sports games, and beaches. We’ve hiked, zip-lined, gotten up close and personal with dolphins, visited museums of military history, and fished in the Gulf of Mexico. We’ve met famous athletes, actors, and folks from all over the world. In many ways, cancer has blessed our lives…
Did I just achieve personal AND purposeful at the same time?? Here’s hopin’!