Knee Deep

May 15. 

Miles started his second five-week chemotherapy cycle yesterday--a planned 48 hour stint at Children's Hospital.  He's moving through it with a sense of style and experience.  As usual, he is charming the staff.  There are a lot of smiles, and a sense of appreciation for each other as new paths cross.  His leg pain is well controlled and his nausea is minimal.  If you are taking his food order though, be ready to switch on-the-fly, because peach yogurt can turn into filet-o-fish can turn into strawberries can turn into Szechuan beef very quickly.

Miles is doing his best to mix things up, despite the gravity of his bed and IV pump.  His goals:

 

 

No TV recently, but plenty of chit-chat and a streak of Master Chef episodes on his iPhone.

Ginger ale is typically his beverage of choice.  Water and hot tea follow.  He is responsible about keeping room items in order, since space constraints can turn bathrooming into a steeplechase.  You might expect a lot of complaining throughout this confining, fatiguing, poisonous ordeal, but it's rare.  Miles is agreeable (sometimes with bargaining) nearly all the time to reminders and suggestions.  Occasionally, he crescendos "wait wait wait," or "no no no," or "what are you thinking!" but you can see him downshift from Hulk to David Banner within seconds.  He is working hard, and stopping to smell flowers along the way.

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So, opening day for Oyster River baseball.  Where to begin.  Overwhelming appreciation for the community's support of Miles and family.  Pete, Mike, Butch, ORHS, parents, family and friends: thank you.  Creative, heartfelt, well-spoken, generous, and uniting.  Miles will always remember the how the scene of 2015's first pitch boosted him through the game of his life.

 

 

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Next topic: Rotationplasty





Chapter 3

May 1st -- one month in.

Life is different.  We are forced to think in new ways about familiar and unfamiliar happenings.  Sometimes this is difficult.  Sometimes it is strangely fun.  It is true that big challenges flush out hidden talents, ideas, and emotions.  Being with Miles has always been fun and thought-provoking.  But he's pulled out some pretty slick concepts lately.  A lot of you have remarked how resilient kids are to adversity, compared to adults.  True that.
And just when you think the positivity and lack of wallow equate to denial, the earnest vulnerable boy comes out.  So, I think Miles has balance.  He will need it, literally and figuratively.
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Miles had two-and-a-half weeks between chemotherapy treatments, regaining his spunk.
He's completed plenty of schoolwork, hung out with friends, visited with family, been to baseball practice, battled it out with Louis (totally unfair, considering the crutches), went to a Red Sox game with Mom and brother, and has generally just been doing his thing.

As the typical treatment scheme for osteosarcoma is Chemo--Surgery--Chemo, we met with the surgical team last Thursday to discuss options.  A heaviness accompanied us to this monumental day.  The choices are clear, and we are leaning toward a repair that both eliminates the primary tumor and allows a solid return to athletics.  Miles has been talking about it.  He says if he could skip the chemo, and just get on with the surgery and rehab, he would.  We know though, that "cure" is paramount, and this requires a parade of systemic medicines scavenging the far corners of his insides to eliminate stray cancer cells.  So, on we march.
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This is week 4 of treatment--inpatient IV methotrexate and two-to-three days of IV fluid flush.  This began yesterday, so we anticipate being home Sunday.  This same treatment is slated for next week, but Miles is planning to do the IV hydration part (two-to-three days) at home, with a backpack-based pump.  A welcome set-up, we think.

Miles' blood counts have held strong--no anemia, platelets good--and his intermittent nausea and pain are controlled with medication adjustments.

We learned from Dr. Rodriguez-Galindo (Miles' primary oncologist) that Manny Pacquiao (boxing Floyd Mayweather tomorrow night) has a foundation that serves children in his home country of The Philippines--scholarships, clothing, etc.  The topic came up, as Miles is considering streaming the fight tomorrow night.  Not typically a primary interest of his, but hey, we'll exploit any applicable metaphor these days.