Our last clinic visit was fairly unpleasant. When Nico started steroids we were warned he would “get the munchies” and “feel emotional.” Those were not just understatements. Those were outright lies. I understand not wanting to tell a parent, “And if you think it’s bad now! Just you wait!” But we were unprepared for what a month of high-dose steroids does. Our oncologist said that Nico has not had the very worst reaction he has ever seen to steroids, but he is at least in the top 25% of the worst. It is rough. The bottom line is that Nico does not look or act anything like Nico. He is unrecognizable and angry most of the time. So when we are at the clinic, Jeff and I usually take turns being bitten, hit and kicked while the entire staff and other patients endure the almost constant screaming of our sad little boy.
We get some looks. Sometimes they are looks of pity. Sometimes they are looks of annoyance. A few times I have felt compelled to explain that he is on steroids and is really a sweet and thoughtful little boy. But I guess he looks like a cancer patient now and it is hard to tell who he is under his steroid ravaged body. Nico is a breathtakingly beautiful, smart, funny and precocious little person. He is just undergoing a metamorphosis right now and eventually going to reemerge as the same gorgeous and soulful guy but with progenitor cells that make the right kind of white blood cells. So I got a stolen idea. I have to give credit to two people – Miss Sophie (Nico’s teacher) and my dear friend of twenty-six years, Brandy. In two different capacities and for different reasons they both mentioned shirts and the phrase “Team Nico.”
So we have decided that at every clinic visit, everyone that sees us will also see our little guy without the affects of chemo by wearing his pre-diagnosis picture right across our chests. I designed Team Nico shirts. Our photographer here in Salt Lake City, Amber Schiavone, generously provided a high-resolution digital picture for us to use. I will include a link to my tee-shirt masterpiece at the bottom of the post. The final product will be a little different from the link – the image of Nico will be oval, and a Custom Ink artist will redraw the B-cell on the back in black and white. The shirts are orange because that is the leukemia awareness color.
I do not expect anyone but our immediate family to order/wear the shirts, but my sister suggested I make the link available for anyone that might want to buy one (or just admire my incredible tee-shirt designing skills). The shirts are a lot cheaper if they are ordered en mass, so if you are interested in purchasing one, email me and I can try to put a list together. I want to make it clear there are no profits being made (well, except for Custom Ink). I am doing this as part of my effort to make this process easier for Nico by reminding healthcare providers that he is a person not just a patient, and to also send positive messages and thoughts into the healing universe (I’m really not a hippie, ok, maybe a little).
And while I am talking about profits, a few people asked if the tributes on Caring Bridge go to Nico’s treatment. They do not. Caring Bridge is a free website that runs and operates on donations. So in exchange for giving me the site, they get to solicit donations on my page. Seems fair. I think it is a great site and am not discouraging donations, but I just want to make it clear the donations do not come to us and we are not personally soliciting donations.
Also, please keep focusing on 0.000%. The biopsy is Friday (the same day the steroids end).
Wow, I’m really long-winded. Sorry about that, and here is the tee-shirt link -
http://www.customink.com/designs/teamnicoo2/ssx0-000t-ap0q/hotlink?pc=HL-76684&cm_mmc=hotlink-_-3-_-Body_txt-_-button1
We get some looks. Sometimes they are looks of pity. Sometimes they are looks of annoyance. A few times I have felt compelled to explain that he is on steroids and is really a sweet and thoughtful little boy. But I guess he looks like a cancer patient now and it is hard to tell who he is under his steroid ravaged body. Nico is a breathtakingly beautiful, smart, funny and precocious little person. He is just undergoing a metamorphosis right now and eventually going to reemerge as the same gorgeous and soulful guy but with progenitor cells that make the right kind of white blood cells. So I got a stolen idea. I have to give credit to two people – Miss Sophie (Nico’s teacher) and my dear friend of twenty-six years, Brandy. In two different capacities and for different reasons they both mentioned shirts and the phrase “Team Nico.”
So we have decided that at every clinic visit, everyone that sees us will also see our little guy without the affects of chemo by wearing his pre-diagnosis picture right across our chests. I designed Team Nico shirts. Our photographer here in Salt Lake City, Amber Schiavone, generously provided a high-resolution digital picture for us to use. I will include a link to my tee-shirt masterpiece at the bottom of the post. The final product will be a little different from the link – the image of Nico will be oval, and a Custom Ink artist will redraw the B-cell on the back in black and white. The shirts are orange because that is the leukemia awareness color.
I do not expect anyone but our immediate family to order/wear the shirts, but my sister suggested I make the link available for anyone that might want to buy one (or just admire my incredible tee-shirt designing skills). The shirts are a lot cheaper if they are ordered en mass, so if you are interested in purchasing one, email me and I can try to put a list together. I want to make it clear there are no profits being made (well, except for Custom Ink). I am doing this as part of my effort to make this process easier for Nico by reminding healthcare providers that he is a person not just a patient, and to also send positive messages and thoughts into the healing universe (I’m really not a hippie, ok, maybe a little).
And while I am talking about profits, a few people asked if the tributes on Caring Bridge go to Nico’s treatment. They do not. Caring Bridge is a free website that runs and operates on donations. So in exchange for giving me the site, they get to solicit donations on my page. Seems fair. I think it is a great site and am not discouraging donations, but I just want to make it clear the donations do not come to us and we are not personally soliciting donations.
Also, please keep focusing on 0.000%. The biopsy is Friday (the same day the steroids end).
Wow, I’m really long-winded. Sorry about that, and here is the tee-shirt link -
http://www.customink.com/designs/teamnicoo2/ssx0-000t-ap0q/hotlink?pc=HL-76684&cm_mmc=hotlink-_-3-_-Body_txt-_-button1
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