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.

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.

Dog Days

Miles completed his second round of Dinutuximab last week.  Unlike his first infusion, taken in the wake of lung surgery and a 3 week hospitalization, this round he was in front of the 8-ball, with good physical reserve.  The biggest potential side effect of this antibody immunotherapy is pain, which he had none of.  He used only a fraction of the pain medicine required the first time, and he was better than lucid the whole time. 

Special thanks to nurses Laura, Emily, Grace, and Carly--they, with other nurses and clinical assistants help Miles sail smoothly. 

So, he's back in the saddle for the last week of Summer.  Between treatment rounds, Miles did his vacation thing, not dissimilar from his buds.  He saw Coldplay at Gillette, caroused with his friends, swam at the lake, tended beehives, caught a gym-full of pokemon, and spent a week baseballing in Cooperstown.

You may have heard of, or even seen, the video produced by the teacher-friend team of Tregea & Schroeder.  Suffice to say its compilation of teachers' and friends' inspiring wishes is powerful and moving. Thank you all for keeping it real, and clearing a path.

Thanks to Becca and Tam for our first tour of the hive and its yield.

Becca inspects with a hand from Miles

Home for Three Weeks

Miles got home Wednesday evening after his first immunotherapy treatment. He is a little tired, down a few pounds, and his near-vision is a little blurry. Miles gives himself a daily injection to boost his immune system.  Otherwise, life is normal. His nurses and doctors were happily surprised by how well he tolerated this first round. 

I'm not as think as you sleepy I am

The dinutuximab is administered IV in two 20-hour courses. Miles gets a four-hour reprieve in between--where we're at during this posting. The benadryl, gabapentin, and pain medicine around-the-clock keep him schnookerdoodled. He perked up this morning after some good overnight snoozing. Miles has teetered the fence between dreamland and consciousness without pain or other significant side effects. He has minimal swelling, his urine output is adequate, and his blood pressure is holding steady.

Dinutuximab

Miles has been home for a week-and-a-half reclaiming the summer. He's been no less susceptible than everyone else to Pokemon Go, and thankfully has not walked into traffic or stumbled upon dead bodies.  He made it to the Dave Matthews Band show last Wednesday night, visited with some key peeps, and restarted athletic training.  He's been very encouraging to his all-star brother, and may have succeeded in having Louis keep that bat back and his elbow up.

He had a normal CT of the chest and echocardiogram last Friday. That same day he visited his prosthetist, Mike Amrick, who measured him for a new leg, and extended his current one by an inch-and-a-half.  A welcome symmetry.

This morning, he had a venous port placed in preparation for his medical therapy regimen which starts this Monday.

Miles is entering a large clinical trial that uses immunotherapy to treat recurrent metastatic childhood cancers.  The primary medicine is dinutuximab (Unitux). Dinutuximab is a manufactured antibody (monoclonal IgG anti-GDP for those of you with deeper interest), similar to the antibodies we make ourselves, that in this case targets a cellular protein found on cancer cells.  A second medication that stimulates white blood cells, GM-CSF, is given in parallel to encourage the immune system to attack cells "marked" by the administered antibodies.

The schedule: a 2-3 day infusion in the hospital every four weeks, for five cycles.  We think his symptoms will be mild between infusions, so he should be able to practice baseball and continue conditioning.  He's on the Oyster River baseball team headed to Cooperstown for tournament play, starting August 12.

DOB: 7-13-03

Miles made it out of the hospital just in time for his thirteenth birthday.  He'll tell you he's feeling well and pain-free.

His surgery was Monday, June 20.  In the three weeks since, here's some of what happened:

Surgical complication: leak of lymphatic fluid into the chest.  Often this stops on its own, but Miles developed a pocket of this gunk in his chest that led to a series of fevers and malaise.  Doctors administered repeated doses of TPA through his chest tube to break up the lingering pockets--helpful, but not enough.  So, Miles got the first tube replaced, and ultimately a second tube to target the nuisance spot.

Lymphatic leaks tend to respond to restricting food and drink intake, so part of Miles' treatment included nothing by mouth.  That was hard, as was the prospect that this approach could last weeks.  In the meantime, peripheral nutrition was started--nutrients through the IV.  Of course, he needed a larger catheter, called a PICC line, to have it administered.

In week three, things started looking up, as drainage slowed to a trickle.  He was allowed to eat again--major victory.  So finally, this past Tuesday, he went tube free.

A week into his stay, he wasn't feeling so great, and he spent a lot of time in bed.  But during his last week, he energized, took to his feet frequently, and regained his stamina.  Twenty-two chest x-rays later, he's home.

Thanks to all of you who visited Miles and sent your good wishes and prayers during this extended stint.  Many pictures and credits are on the way!

Waiting for Independence Day

Drainage has been dragging and Miles had a bout of fevers and headache yesterday.  Today he had two interventions under sedation: 1) PICC line placed, and 2) chest tube replaced.

The PICC line is a larger, longer-lasting IV through which lots of fluid and medication may be delivered.  Plus, it accommodates blood draws, so Miles won't need to be stuck as much.  The new chest tube sits in a position that should better address fluid collections.  He is currently feeling good with a number of wry smiles.

He is getting more TPA instilled into his chest tonight, which is designed to break up any gunk sticking around in there.  This process is painless--he just needs to shift positions a bit.

He will be on IV nutrition with nothing by mouth for awhile--not sure exactly how long, or when he will get to go home.  We are not making estimates at this point.  When he does go home, it is likely this regimen will continue.  

Louis is carrying the torch back home.

Draining

The lymphatic drainage kept coming, so yesterday "just waiting it out" turned into plan B.  One way to slow lymphatic drainage is to limit food and fluid into the gastrointestinal tract.  This means nothing by mouth for a while.  Instead, Miles will get hydration and basic nutrients via IV.

Frustrating for sure.  You can imagine Miles was disappointed with the change in plans--more time here, limited food and drink, and more IV access.  Well, he's weathering it well today, and can even joke about the fine cuisine hitting his bloodstream.  A visit from brother Louis, who drove down four Ramsays and one Kell, certainly helped.

Action

Miles is downright jovial this morning.  Maybe it's because he shed his last IV, or maybe the senna is kicking in.  Either way, he's chatty and spright.  So, let's talk positives.

This morning he donned the right leg early, grabbed his teal-green Nike top, and killed a bowl of raisin-less raisin bran all before the residents stopped in.  He's pleased with the color of his chest drainage (something we all aspire to), and his surgeon says the lymphatic leak appears to be slowing.

We are off to a good start, so I let him play COD, as long he visualizes enemy soldiers as cancer cells.  His daily chest x-ray is coming up, and then a long jaunt is in order.  Later today, the surgical team will instill a third daily dose of TPA (a clot breaker-upper) into is chest cavity to loosen up pockets of remaining gunk and encourage optimal drainage.  If we are lucky, Monday could be the day home.

Yesterday, Miles' tenth floor corner room became boyville, with visits from Stewie, Aidan, Charlie, and Michael.  Good times.  The night before, Lizzie and Steph brought chicken tenders, and Sarah delivered saltwater taffy and gummy lobsters.  AJ and Stacey stopped in with cool soccer deco on Wednesday, and Grandpa Irwin met up with Uncle Dave at Miles' bedside.  Thanks to the Novaks for the retro football hand-held--Miles actually digs the red dashes.

See question below

Day Four with a Chest Tube

Surgical mission accomplished--mass out.  Miles says his pain control post-op was good.  His epidural was discontinued midday today.  So, all in all he has shed 4 lines since Monday.  One IV site remains, and so does the chest tube.

Here's the important update:

The usual chest drainage started to look funny.  Turns out there's a leak of lymphatic fluid into the thoracic cavity (chylothorax)--a possible surgical complication. Miles had a lot of scar tissue to get through as a result of his prior surgery, and during that dissection it's likely the tiny lymphatic vessels get disrupted.

So, there's no immediate threat.  And it's not causing pain.  The leak does need to cease though.  It is shown that 75% resolve themselves over two weeks. Thus, it's a bit of a waiting game, and it puts a damper on Miles' weekend plans. Instead of heading home by Friday, he'll be around till next week.

It is possible to go back in, find the leak, and repair it.  But who wants that? Not Miles, not his surgeon, and not his parents.  So we wait.  Miles is quietly disappointed, but moving on.  He's had some visitors, and more are on the way, which always kicks up his spirits.

Thanks for the Puritan chicken tenders Liz and Steph!

Ah, You Again

Miles had a clean three-month check up in March, including a clear chest CT.  He has been feeling great, doing his doings: baseball, school, trampolines, buds. 

Two weeks ago, a new lung mass showed up on CT: right side, back middle, and not-so-small.  Bone scan and labs were normal.

So what does this mean?
We met with the medical team, who have reassembled in Miles' regard and reached out to local and world-wide experts in management of recurrent osteosarcoma.  Here's something: there are two established chemotherapy regimens for osteosarcoma--the first was ineffective, and the second got us here.  So Miles might be headed into clinical trials. Meanwhile, we turn our focus to surgery: the new growth must come out.

Dr. Weldon, thoracic surgeon who removed eight little tumors from Miles' lungs last year, sized up the new situation, and we scheduled surgery for Monday, June 20. The expectation was that most of the mass could be removed.  In the process, the right lower lobe might go, and possibly the entire right lung. Additionally, the tumor abutted the central chest cavity, and Dr. Weldon made it clear there may be cells left behind.

Well, surgery was yesterday.  Five-plus hours.  And the day's news is good: the tumor was fully-contained within the tissue of the right lower lobe of Miles' lung.  As such, the lobe was removed, and Dr. Weldon did not identify any other sites of concern.

Miles is recovering from surgery in the ICU at Children's Hospital today, and expects to be back to the surgical floor later today.  He is perky between rests, hungry, and without significant pain.  He is anxious to get rid of the central venous catheter sticking out of his right neck.  His chest tube is draining the right stuff, and the other lines work silently beneath warm blankets.

See question below about this radiograph