Radio, Chair, and The Week in Pictures

Sunday, August 23
Post-op Day 2

If you missed Miles' radio interview on WEEI's Dale & Holley Show, here's the link:
http://media.weei.com/a/108421025/d-h-miles-goldberg-12-madbury-nh-with-his-parents-matt-and-jen-and-brother-louis.htm

The patient:
More mobile from the get-go this morning.  Quick to sit up and plan the day.
After breakfast, he washed up and scooted from bed to chair for the first time.
Pain well controlled.  This afternoon, the surgical team will turn off the suction in Miles' chest tube, and see how things hold.  If all looks good, he'll have it pulled out at the bedside tomorrow morning.

Chapter 6

August 22

Saturday morning, post-op day 1:

Situation Excellent!  Miles is comfortable and chatty.

Miles' operation went as well as possible.  Dr. Weldon inspected Miles' entire right lung, and identified five nodules to remove.  All were evicted and escorted to pathology.  Miles only lost an estimated 3% of his right lung volume.  He says his pain never got above a "two" overnight--the epidural pain catheter in his upper back is working very well.  A number of wires and tubes dip and rise from his bed, but not as many as with the rotationplasty.  The chest tube is expected to be pulled after 2-3 days.  Meanwhile, Miles is practicing deep breaths, working to expand his temporarily traumatized rib cage.

Breakfast is on the way.  "Miles Strong" photo collage on the door.  His favorite nurse, Vanya, is on the case.  Great view of Boston from the tenth floor.

More later.

Summer Sessions

August 18

Miles continues to amaze. His chemotherapy is double-edged: challenging, in that he is relegated to six-day stretches of IV meds and hydration; but bearable, because of the longish stretches in between treatments, and fewer side effects on the new regimen--mostly intermittent fatigue.  Miles has approached his new normal with grace and positive energy. He has enjoyed long summer days with friends and family: swimming, cheering on his friends at the baseball field, tackling his new role as football coach (many thanks to Coach Burd and the ORYA football family), catching some movies, and even finding some room for reading.  He is poised to start seventh grade in just a few weeks.

The stretch ahead: between now and school, he will accomplish much. 

This Wednesday: Miles is on-the-air! (see below).

This Thursday: he meets his prosthetist to be fitted for his first prosthetic leg. This is so exciting for us.  This is progress.  Since leg designs will have to accommodate Miles' plans for baseball, football, snowboarding, hockey, and yes, surfing, the prosthetist will have his work cut out for him, so to speak.  More on that later.

This Friday: Miles checks back into the surgical unit at Children's Hospital for the first of two open thoracotomies (lung surgeries) to address the suspected metastatic disease on his lungs.  Friday, Dr. Weldon addresses his right lung in a procedure expected to take four to six hours.  He'll explore every centimeter, excising any suspicious spots.  Miles will be in the hospital for the better part of next week.  We will be sure to update everyone on his progress.

Miles hopes to attend the first day of school with his classmates on September 2, before returning to Dana-Farber for chemotherapy the very next day.  We expect the second thoracotomy later this fall.

Miles recognizes this is a long process, but he has chosen patience and positivity as mantras, and his family and friends are following his lead.

Through this marathon, many people have asked if Miles plans to become a physician someday.  While he is seriously considering that career path, he is taking a page from mom’s professional playbook in the meantime, having a go at fundraising for Dana-Farber during this week's Jimmy Fund Telethon: 

Miles has agreed to share his story on WEEI's Dale & Holley program, this Wednesday, August 19, during the 2 o'clock hour.  Please tune in if you can.  You can catch the interview on 93.7 FM in the Boston area, or streaming live at www.weei.com

He'll be at Fenway Park all day Wednesday, starting with the interview, and sticking around for the Red Sox game that evening.

For more information on how the Jimmy Fund supports cancer patients and their families, please visit www.jimmyfund.org

Chapter 5

August 2

Miles is good on crutches.  Fast bugger.  Developing crutch parkour.  So there's really no moping about mobility, even when he's on the IV leash.  Miles might say the hardest part is having to pee so frequently for six days straight, day and night.

That's his new chemotherapy regimen: a six-hour infusion daily for 5 days in a row with continuous IV fluids.  Each cycle is three weeks apart.  He's toward the end of cycle two now.

Here's the logistical deal:

• Six weeks since surgery: healing very well.  No real pain.  A little hypersensitive to the touch.  Practicing joint motion.
• Round one of chemotherapy not as effective as hoped: leg mass grew and a couple tiny spots appeared in lungs.  So meds changed: now solely Etopiside and Ifosfamide, which he's tolerating very well, with hardly any nausea.  Does make him tired.
• Imaging in a couple weeks.  Then meet with thoracic surgeon.
• Surgery to get lung spots, end of August.  May do as two separate procedures.
• Several more rounds of chemo, likely till early November.

We are all looking forward to Miles getting fitted for his prosthesis.  That should happen this month.  We anticipate he'll be instructed on additional exercises soon in preparation for assimilating his new lower right leg. 

Meanwhile, he's definitely getting stronger, eating lots, and gaining some weight.  He's still mentally sharp.  He visited the one-day "Get Live" Football Camp, where brother Louis was ripping it up last Sunday, and got to chill for a while with Devin McCourty, who was helping out for the day.

Mark your calendars for Wednesday August 19.  Miles was invited to participate in the Jimmy Fund Telethon that day.  We suspect a charming interview, which might be broadcast during the Red Sox game that follows!  Stay tuned for more info on that one.
This all came about after WEEI Radio Hosts "Dale and Holley" visited the Jimmy Fund Clinic a few weeks ago and happened upon Miles.  They spent some time chatting and recording.  They were touched enough by his story to speak about him on air that afternoon: Miles got a great shout out.

Big thanks to the Ronald McDonald House of Boston, who hosted us with great accommodations these last five days.  Louis enjoyed his trip down too, and got to attend the Red Sox win over the Rays Friday night with Dad, thanks to Mom's gift of great seats.