From Miles, March 2017
Monday, June 12, 2017
Saturday, April 1, 2017
Crappy Anniversary!
Miles throws a cold rainy hello from Mission Hill. He's seven hits into this round of radiation therapy. Another nine to go, but we're not really sure. He says we're pros at the daily blast--nearby digs, up and over, quick zap, then breakfast. And the radiation is helping already--less tingling, numbness, and weakness in those special places.
He's taking advantage of the local food establishments: homemade pastas, seafood, soft cheese, pesto, among others. His new pal Larry Lucchino arranged for four tickets to this Wednesday's game against the Pirates--in the luxury suite with the big boys. Louis is excited--and, per Miles, Alden has been emailing the Red Sox organist all week.
A couple weeks ago, Miles met Ellie Atherton, a 30 year herbalist and super nurse. He asked for her guidance, and got some excellent direction on plant-based supplements, clean nutrition, and positive imagery. We are all getting in on the Elliac tea and turmeric. She's planning to deliver more good vibes when she visits Miles in Boston this Thursday.
Two years in today.
Thursday, March 16, 2017
Decisions
Miles has seen his shadow. Regardless of when, spring will come. He'll see that too.
Meanwhile, this winter posed cold hard questions. Miles likes to answer--he's always got one. As it turns out, his most recent medical mix, although light on side effects, has done little to limit spread in his bones. He's got a growing spot on his right jaw--currently the size of a small walnut. Not much associated pain, but it throws off his chew, and restricts his gape a bit. Among others, there are notable growths in his upper back (T2) and pelvis.
We're thankful that radiation therapy shrunk tumors in his left leg and lower spine a few months ago. Since that successful treatment launched Miles mostly pain-free into 2017, he's taking up Dr. Marcus' (radiation oncologist) offer to go after the new spots. We had a positive visit with her team today, and Miles completed his pre-treatment CT mapping. Before we lamb-out of March, Miles will have started a 15-day course of radiation therapy. He is looking forward to it, and hopes to be joined by various comrades during his Boston treks.
Medically speaking, a few drug options remain--none promising. Miles and his parents considered continuing his current regimen (worth a glance, since his multiple small lung nodules remain quiet). There is also a phase 1 trial available, but its benefit/risk score is low. A third option is another course of chemotherapy--a two med regimen used in refractory sarcomas. But this chemotherapy and its likely side effects have been declined by Miles. So, on we go. Miles is pursuing some complementary approaches we'll share soon.
Miles leaves for Fort Myers and Jet Blue Park tomorrow for a weekend stint at Red Sox Spring Training with other teenagers from the Jimmy Fund Clinic! It's a large entourage of 48 patients, 6 nurses, a few physicians, and other talented Dana-Farber professionals. On April 21, he sets out on that notorious 8th Grade Washington, DC tour.
The kid spreads joy and gives great hugs--at least a half dozen at DFCI and Brigham today. His social schedule remains busy--hug the dude when you can, between memes.
Meanwhile, this winter posed cold hard questions. Miles likes to answer--he's always got one. As it turns out, his most recent medical mix, although light on side effects, has done little to limit spread in his bones. He's got a growing spot on his right jaw--currently the size of a small walnut. Not much associated pain, but it throws off his chew, and restricts his gape a bit. Among others, there are notable growths in his upper back (T2) and pelvis.
We're thankful that radiation therapy shrunk tumors in his left leg and lower spine a few months ago. Since that successful treatment launched Miles mostly pain-free into 2017, he's taking up Dr. Marcus' (radiation oncologist) offer to go after the new spots. We had a positive visit with her team today, and Miles completed his pre-treatment CT mapping. Before we lamb-out of March, Miles will have started a 15-day course of radiation therapy. He is looking forward to it, and hopes to be joined by various comrades during his Boston treks.
Medically speaking, a few drug options remain--none promising. Miles and his parents considered continuing his current regimen (worth a glance, since his multiple small lung nodules remain quiet). There is also a phase 1 trial available, but its benefit/risk score is low. A third option is another course of chemotherapy--a two med regimen used in refractory sarcomas. But this chemotherapy and its likely side effects have been declined by Miles. So, on we go. Miles is pursuing some complementary approaches we'll share soon.
Miles leaves for Fort Myers and Jet Blue Park tomorrow for a weekend stint at Red Sox Spring Training with other teenagers from the Jimmy Fund Clinic! It's a large entourage of 48 patients, 6 nurses, a few physicians, and other talented Dana-Farber professionals. On April 21, he sets out on that notorious 8th Grade Washington, DC tour.
The kid spreads joy and gives great hugs--at least a half dozen at DFCI and Brigham today. His social schedule remains busy--hug the dude when you can, between memes.
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