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.

Coasting

Miles officially finished his immunotherapy Thanksgiving day.
He feels well.  Imaging December 12.
Every day is Thanksgiving.  Leave an impression.

Cycle 3, good for me

Miles here,
The first half of my antibody cycle has been much, much better than the one before. I haven't pressed the button to receive my PCA (morphine) through IV that helps me control my pain at all. As usual, the nurses and doctors are fantastic and the support from my friends and family at home is even better!
In between cycles I've been playing football and we've had a pretty good start to our season. The team beat Souhegan Valley (Amherst) and we had a tough loss to Manchester, but we will see them again.
The Oyster River Football Program is doing a calendar raffle for the month of October. Tickets are $10 and you have 31 chances per ticket to win gift cards to local restaurants, salons, apparel retailers and cash prizes. The grand prize is $250 cash. To buy a ticket, text me at (603)923-8677 or email me at goldbergmiles@gmail.com.

Thank You, T-cells and Immunoglobulins

Eleven weeks after his right lower lung lobectomy, and with two cycles of immunotherapy in the books, Miles had his surveillance chest CT today. Result: negative.  No bad stuff seen.  No new tumor growth visible. Fantastic news for this great kid and all of us supporting him.  Positive attitude = strong immune system.

Guess who played nose tackle in the OR 7/8th grade football season opener yesterday.  Yes, number 41, Miles G, with a padded port and red cleats. And a win, to boot.  Nice work, team.

Miles appeared on the Dennis & Callahan Show, also broadcast on NESN, on August 29, to support the 2016 Jimmy Fund Telethon.  Here's the link:
Miles Jimmy Fund Telethon Interview 2016

Cycle 3 of 5 is about to start.  Onward.  Now get back to your homework, kids.