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.
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.
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.
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...
Miles says he feels good. Good people around. This past weekend included cousin Tina's visit and a solid new wheelchair ramp outside 82 Old Stage Road constructed by Gavin Webb and Paul Kell. Tam and Becca worked his back and legs and brain.
The kid adapts. Leg one is splinted: the benefit of surgery is currently outweighed by recovery time and the opportunity to try some new medicine. Leg two is burdened by tumor: limited flexion and extension and can't bear weight. So Miles has saddled up his wheelchair to get around. Transferring positions can hurt, but he gets comfortable wherever he's sitting. He uses pain medicine when necessary, and leads a company of ice packs, rubs, and warmers.
Enemy locations:
Left knee
Lung peripheries
One rib
T2 and T6
Shoulders
Plan:
New medical course: combination of Avastin, Sorafenib, and Low Dose Cyclophosphamide. The first is an IV infusion, given at the outpatient Jimmy Fund Clinic once every three weeks. The latter two are oral.
Radiation therapy: New for Miles--not a typical osteosarcoma treatment. Aimed to palliate his left knee.
Physical and Occupational Therapy: keep everything lubed and strong.
Set-up with radiation oncology is this Wednesday. Medications start Thursday.
Update:
Miles left school at midday yesterday. His right (rotationplasty) leg felt suddenly sore while walking down the hall with his crutches. He made the correct diagnosis right away: fractured at the surgical site--even a little floppy. Thankfully, he's had minimal discomfort. Dr. Thut and Webb saw him right away. His x-ray shows the metal plate holding the bones together broke in half.
His leg was splinted and it's comfortable for him. Miles is getting around primarily by wheelchair, with some crutch-assisted soft steps.
We are considering next steps for his right leg and everything else. Lots of discussions. Will update soon.
