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...

Securing Sector M

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.

Broke

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.

A Meniscal Tear Would Be Better

The World Series is the best of seven.  The contest is rarely expedient--an expected battle, with great performances, miscues, camaraderie, heartbreak, emotional ups, squandered hope, and sudden rallies.  Pick your year, remember your team.

Miles had some lingering left knee pain towards the end of football season. X-rays a few weeks ago were normal.  Got worse...got MRI...got results:
New tumor in left leg--upper tibia, lower femur, extending behind the knee. This is recurrence number two, and the third ineffective medical regimen. Osteosarcoma is a formidable opponent, leaving Miles and his team few options. Miles feels well however, his knee ache currently mild, and after assimilating information over the last few days, he is dressing for the game.

Here's the setting:
The intact leg is compromised with tumor.
There are new metastases in both lungs.
There is apparent spread to one rib and the left pelvis.
Leg surgery is not recommended unless we can demonstrate systemic improvement.
We have not yet discussed when and if lung surgery would be helpful.
Miles' oncology team at BCH/DFCI is reviewing options, and has shared the leading possibilities with us.
We hope to have a medical treatment plan in place next week.

But to be clear, there are remaining questions and more information to be gathered. Louis knows his brother's doctors are very concerned, and he knows his family and friends and doctors and nurses are rallying.  At the time of this posting, Louis is being drafted into the NBA (NBA 2K17 for PS4), and Miles is sounding pretty good on guitar.  Their bellies are full and it's Thursday.