Walk-off

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.

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.

Thanks, Kids

For the sake of these times--strewn with happenings planned and unplanned, avoidable and unavoidable, enjoyed and saddening, inspiring and maddening, natural and artificial, absorbed and repelled, understood and incomprehensible--we pause, as we sometimes do.

A toast to our children, including our parents' children--all borne to sustain and give purpose.  

Merry Christmas

From The Mom:

Wishing you all peace, health and happiness this holiday season and in the new year. Thank you all so much for your love, support, prayers, and generosity. We are all so fortunate for the close family and friends that carry us day to day and hour to hour. We love you all. Thank you.

Bring It

Each day is unpredictable.  Monday and Tuesday were contemplative with some nice visits. Overnight was difficult though--Miles had some breakthrough pain and interrupted sleep.

By the time Miles met the radiation oncologist Wednesday morning, his back pain had accelerated and he was experiencing leg numbness.  By Wednesday night, after his two stationary hours in the MRI tube, we learned there is additional tumor in the spinal canal of his mid-back, slightly compressing the spinal cord.

So Thursday, in addition to his first dose of IV Avastin, he received a prioritized dose of radiation therapy to his thoracic spine. Friday, he got a second hit of photons to the spine and his first to the left knee.  Ten daily doses are scheduled for his back, and five to his knee. 

His pain medications were adjusted, and he started some oral steroids (dexamethasone) to help with swelling.  Together, the modifications have helped. Miles is much more comfortable overnight, and is transferring without pain.  Also, he started the two other meds that are part of this 21-day cycle: sorafenib and cyclophosphamide.

He'll be staying in Boston Monday through Friday next week for daily outpatient radiation therapy and a few office visits.  Meanwhile, he's got a comfortable splint for his right leg, has picked up wheelchair speed since starting steroids, and is enjoying his paced indulgence in that spectacular note jar from school...