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!