This week has been uneventful and eventful at the same time - if that makes sense. JT has begun to settle down into the routine of the school year...Up early, bus stop and the such. So far, so good. And that's the uneventful part of the week.
As for the eventful happenings, well, there have been a few. We begun the week with me taking JT to wonderful potluck benefit put on by my co-workers at DBC. To everyone who stepped up and cooked and donated I want to thank-you so very much. The food was amazing and although JT was pretty shy I hope you each got the opportunity to see the little guy. You are all wonderful people and your kindness and generosity is truly inspiring. Thank you again and again and again.
On Wednesday morning, James hit a milestone. He had run the month long course of antibiotics and was now able to get rid of his IV 'robot'! For that he was very happy. What he wasn't too happy about was the fact that he was also going to lose his access needle. What's the big deal you ask? Well, to remove said needle the nurse was going to have to remove the tegaderm adhesive that covered the access area. Imagine pulling off a 4" by 6" piece of thin, clear contact paper off your chest - do you sorta understand his anxiety now? Anyhow, the little guy didn't like it one bit, but it all came off and now he just has a regular band-aid (Spiderman, of course) on his chest. For now, he's free of tubes and needles and can be six years old for a while. Something he was able to do at his school BBQ that same night as he tromped around the playground with his pal Tate. We just hope and pray that these meds worked and that we aren't faced with yet another infection in the coming weeks.
Today James had his follow up appointment with the ophthalmologist, Dr. Jeffery Berman, who discovered JT's swollen optic nerves back in June that set us off on this wild ride. Dr. Berman looked over James, and told us that the nerves were flat and that his eyes do not require any patching, corrective lenses or surgery! Great news. But then again, after six hours of brain surgery, countless days/hours in the hospital and over $90K in medical bills those damn nerves better be 'flat.' Seriously though, it was really great news to hear.
Not quite sure what this weekend will bring but I'm pretty sure that we'll be laying sort of low. Next week JT is back at the hospital on Tuesday for a routine MRI to see how we're doing post-radiation and pre-full chemo. I'm not positive that anytime there's an MRI one could call it 'routine' but the boy has done his 3,000 miles and it's time to take him in for an oil change. After what he's been through since his last MRI, we'd be really surprised to see any tumor regrowth, but c'mon, we'd be naive to ignore the simple fact that another tumor really could be there. It's a fear that we have to live with every time he slides into the big magnet machine. Not to squash the mood here, but unlike some other cancers there isn't a 'cured' phase for medulloblastoma. As the oncologist said months ago, as JT grows and he is free of tumors you move into a more comfortable emotional place. JT becomes a survivor.
Please play safe, take care of each other and enjoy the weekend. We'll be checking in with you shortly. Love to you all,
dct
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