Bedpan Popcorn Night

Wednesday, Harry checked back in to CNMC for the final treatment of Round Three, Interim Maintenance.  It began with a lumbar puncture to inject medication into the spine.  And Harry now takes these without anesthesia.  He says that anesthesia feels worse than surgery.  And tastes terrible.  Apparently, one's sense of taste is altered by IV drugs, as we've found out.  So Harry now prefers most medication in pill form.

After the lumbar puncture, we checked into "our" room, 423.  This may be our last stay in 423.  After this round, Harry does not have any scheduled in-patient stays.  (Any admittance will be because he is actually ill.) And, for our last stay, they spiffed up the room!  It was repainted, and the floors so polished it looked like the set of a Mr. Clean commercial, replete with new furniture and new bathroom fixtures.  I think my complaints about the "crack den" last time really resonated -- and they are fixing up all the rooms.   Or they think I'm so crazy that they wanted to clean up before our next visit.  Maybe both?

Thursday, after Harry had 24 hours on methotraxate, Tzvi Haber came by for movie night.  Now for Tzvi, it would not be movie night without the popcorn...and the popcorn had to be official and fresh, so he came prepared.

yes it is bedpan popcorn!  Levi & Tzvi dish it out.

Second, you need a big screen!

projected onto the window shade

Third, you need a great movie.  Or one Harry, at least, thinks is great, so it was "Stepbrothers."

Tzvi volunteers with Chai Lifeline, which supports children and families going through serious illness through Camp Simcha  (http://tabletmag.com/jewish-life-and-religion/180424/camp-simcha), trips and other fun spirit-lifting activities.  But Tzvi has been much more than just a volunteer to Harry, as he comes every hospital stay to visit.  He has become a real friend.  And Tzvi, a Baltimorean, was accompanied by his friend Levi, from Monsey, New York by via of Novosibirsk.

Visitors whose photos I forgot to take included the Lehrich family who brought an amazing dinner of tofu veggie, stir-fry & mac and cheese (she let her kids choose the menu). And Dr. Kurt Newman, the President & CEO of Children's who came by for a long visit with our beloved navigator of things CNMC, Eileen Walters.  (Sorry I forgot to take photos !)

Tonight, we look forward to Alex Boyar's falafel & schwarma Shabbat dinner.  Shabbat Shalom!

Best Buddies Homecoming With A Side of Skins

Harry and one of the Best Buddies Cheerleaders!

Ken crosses the finish line

He did it!  Harry completed the 100k Best Buddies Challenge on Saturday.  Being a neurotic Jewish mother, I had expected he would have to stop at some point, but this time, I felt well-grounded in my angst. I made certain the Best Buddies folks would keep an eye out for Harry and have a trail car or support van nearby.  Plus Ken would ride along side him.  Harry agreed that riding together with his dad was more important than completing the route quickly.  This sweet attitude lasted less than 30 seconds, after which Harry blew past Ken.  Harry wound up getting off trail and had to retrace his path.  He was a bit upset that he finished an hour past his time last year, but it was still close to 4 hours. Not bad for a guy on chemo.  Ken, not a guy on chemo, took a bit longer.  Maybe 2 hours longer.  Maybe more.  But he finished and made it back alive.  Bruised, bloody but definitely with a pulse.  In the end, my neurosis was misplaced: I should have had Ken shadowed, not Harry.

Lunching with the Lintotts after a shower

Deep appreciation to everyone who supported Harry.  He was the 9th highest fundraiser overall!  And his team, Sidwell, took first place among all schools!  He raised $5400 which all goes towards programs for promoting friendships and job creation for individuals who are intellectually disadvantaged.  (Another wonderful program is Ken's Krew www.kenskrew.org, which trains individuals entering the workplace and helps them secure jobs).

And after the race we spent time with May Liang Lintott & Marcus, whose generously sponsor the annual event.


From Best Buddies, Harry has met many wonderful people whom he admires.  One is Syd Lea who won this year's ride.  Syd is a seven-time Special Olympic gold medalist.  For those who ride, the Leas are the First Family of cycling.  Brother Bobby, is a two-time Olympic cyclist.  And both their parents, Rob & Tracy, ride competitively.


Later that evening Harry went to dinner and homecoming with foreign exchange student,  Jassi.  Unlike many schools that actually dress up for a dance, Harry's school has a theme.  This year was Wizard of Oz, and he tried out his inner flying monkey. 

Homecoming

Miles, Harry & Casey in the box

And, if the weekend was not already jam-packed, Sunday was Redskins Day. The United Arab Emirates Embassy donated seats in its luxurious owner's suite to Children's National Medical Center.  Harry was lucky enough to be gifted 4 seats and field passes to the Titans game.  He brought Casey & Miles -- and since premium parking was included, he brought along Ken, whose muscles were still aching.  After walking on the field near Redskins greats, and enjoying snacks at the buffet, Harry, Ken and the boys watched some football before making up all the calories they burned off Saturday at the kosher stand at FedEx Field.  (Harry and Ken agree: kosher food at FedEx is much better than at Nats Park.  But the kosher stand at Camden Yards tops them both.)  All four enjoyed a close game and a great Redskins victory.  Maybe the Redskins need Harry in the house every home game.

Ken & Harry on the field.  Harry's karma helps the Redskins to victory

Back to the hospital tomorrow, Wednesday for 4 days.   

Crack Den Drama

On the way to Philly

I know we call it the 24-hour meth binge, but I never expected CNMC to give us the hospital crack den.  After a morning at CHOP, anything else is like going from the Four Seasons to the Sheraton. 

But this was more like a Motel 6.  Or 5.8.

No we are not getting medical treatment in Hondouras 

Room 433 was peeling paint, peeling fabric on a broken sofa that moves as if possessed, strange spatter marks on the wall, a sticky floor, and it was our assigned room.  Our usual 'home' 423 was already occupied.  And we understand that kids coming for a month need the larger rooms.  Without making a scene, I notified every important person I knew, from shift nurse Erin, to charge nurse Nancy, to our fabulous navigators Eileen & Sarah, and the NP Jessica - so maybe I did go a bit over board, but we did get moved.  And the best news is that room 433 is getting a makeover.  So now everyone knows when you need a room redone, just put me in it.  I'll make certain that facilities, environmental science and the President's office get involved.
As I mentioned, the day started at CHOP.  Or, rather, before CHOP at High Street on Market, Bon Appetit's 2nd best new restaurant (after Rose's Luxury). Breakfast was a Forager Sandwich (mushroom, kale, cheese) and a beet-cured gravlax on a pretzel role with whipped celery cream cheese, cheese scones and several loaves of bread.  Yes, loaves.  This is gluten at its very best and in so many forms.

But onto CHOP.  Dr. Sandy Burnham felt that Harry's back and sacroiliac joints, the source of his ankylosing spondylitis, seemed fine.  His knees, however, were filled with fluid and definitely rheumatic.  The groin pain may be nerve-related, so there may be another specialty to add to our Hardy Boys' list of unsolved  mysteries.  (Did the Hardy boys wind up in med school?)

Uncle Michael Solomon

Afterwards, we sauntered up Locust walk and Harry went into Steinberg Dietrich to sit in on a few Wharton classes.  He would have stayed all afternoon if not for lunch and a master class in finance with Uncle Michael.  At Han Dynasty over Dan Dan noodles, they talked investment strategies and biking (Harry - ever channeling his Jillian Michaels- told Michael to get his rate up higher.)

Must be a good issue of the DP

We trained back, making a quick stop at Union Market to get gravlax and cheese for our High Street bread (if you thought this was a cancer blog, your wrong.  It's all about the food.).  And into room 433. As of this morning room 433 has been sealed off and they are working to improve it.

We are now in room 409 for the first days of Sukkot.  Hopefully being released before or after Shabbat.  Email me if you want to drop by.   And Harry has 6 more days to raise money for Best Buddies. Thank you to everyone who has contributed to Harry's Best Buddies race on October 18.  He has raised three times the amount of his original goal and has increased his goal since he first set it!  When you open his page, the photo is Harry leading the pack in last year's ride -- when he took the lead over numerous former U.S. champions and former Olympians for several miles. http://mydc2014.bestbuddieschallenge.org/harryweinstein.  We are very grateful for everyone's support so far and hope Harry makes it to the top 25 fundraisers in the DC area.

Go O's

Thank you to everyone who has contributed to Harry's Best Buddies race on October 18th.  He has raised three times the amount of his original goal and has increased his goal since he first set it! When you open his page, the photo is Harry leading the pack in last year's ride -- when he took the lead over numerous former U.S. champions and former Olympians for several miles. http://mydc2014.bestbuddieschallenge.org/harryweinstein.  We are very grateful for everyone's support so far and hope Harry makes it to the top 25 fundraisers in the DC area.

Harry had a great week.  He felt good and was even able to make the walk back and forth to Kesher Israel on Yom Kippur.  Perhaps it was going to the Orioles' opening playoff game on Thursday night with his Kesher pal, mentor and the all-around great guy he looks up to: Alfred Moses.  Five years ago, they began sitting together in synagogue on Yom Kippur and have done so every week every since.  Alfred has filled a role of family elder statesman that we do not have here in Washington. And even years later, Harry is a bit shy and reserved around Alfred whom he reveres. Even after interning for him at Promontory.

On Sunday, PopPop came to visit before heading back to Florida.  While a short visit, it was great to see him and it made the week all the more special.

On Monday, Harry heads up to Children's Hospital of Philadelphia to figure out what has been going on with his back, groin & knee. Then, he comes back to Washington on Tuesday to check into Children's National Medical Center for a three to five-day stay for another meth binge.

Harry and Alfred Moses enjoy a big Orioles' victory at Camden Yards

Though hearts are with the Nats, our stomachs are with the Orioles who have better kosher offerings 

Harry with his sisters and Pop-Pop at Jaleo