Shabbatsgiving

The cousins at Thanksgiving dinner
(ignore the tree)

Apologies for no updates for two weeks.  I have actually been exhausted.  And something had to go.  But with too many phone calls to check in, and no time to respond - I'm back.  

The reason for the delay is the last two weeks have been none stop hospital time.  Last week Harry was having 5 treatments over 3 days.  In addition to Vincristine and doxyrubicon, he need Erwinnia 3 times a week.  These are 3 shots usually given simultaneously, and then monitored for 2 hours.  The whole process usually takes 41/2 hours.  After school.  So we are there until 630-7 pm.  It is tiring & somewhat tedious as it is mostly waiting.  Waiting in the waiting room.  Waiting for lab results.  And waiting after the medication.     And Harry is expected to being doing his school work so as to keep up.

Durwood, Julia & Megan administering Erwinnia

This week we added two additional appointments so we had a 5 for 5 week.  And Ken was away all week.  Thursday was going up to CHOP for a rheumatoid consult to see Dr. Burnham.  After afterwards getting to see cousin Grace Solomon for dinner.  

But we always try to build a little reward time afterwards which included, Dangerously Delicious Pies, Eammon's chipper, & Bullfrog bagels.  Trust me these are all unbelievable rewards!   

Also it was Thanksgiving.  As Harry had Wednesday & Friday treatments we could not go up to Philadelphia as we always have done. But Philly came to us.  Aunt Lisa, Aunt Jill, Uncle Matt, Owen, Jack & Pop Pop all came for a dinner at Diplomate (its from Philly!)  And the next night when I had time I cooked the traditional Shabbatsgiving.  (Shabbatsgiving is when you usually have to be vegetarian on Thanksgiving because it is not kosher, so on the first Shabbat following you wind up cooking a second Thanksgiving dinner with all trimmings.) 

And the big news - on Sunday Harry will go down to Florida for 4 days with the Chai Lifeline Foundation.  Full coverage coming next week.

Friday brunch with the whole family!
(sorry you can only see Pop Pop's arm)

Delayed Intensification Delayed No More

And his numbers went up!  From 520 to 2000.  So delayed intensification could be delayed no more.  

The new medications include Doxorubicin, which has a cumulative effect.  By week three, which is December 15th, we expect Harry's counts to drop, his hair to fall out, his muscles to be weak -- and Harry will again need transfusions. Of these, the factor that impacts Harry the most will be muscle weakness as it keeps from cycling.  

And the need to exercise will increased to counter the effects of Dexamethadone, a steroid that causes mood swings, anger, and insomnia.  Or just intensifies the basic side effects of being a teenager. 

He will also be on Erwinia three times a week for four weeks.  Which means three visits a week to CNMC for the next month  

There will be two lumbar punctures, hold the anesthesia.  Two full days of Ara C.  And on day 29, two weeks of home care when the nurses come to us.  Why can't they always come?  I have no answer for that.  But we would miss the gang on the 4th floor.  

Other meds include Thioguanine which will also lower his blood counts, and force him to avoid citrus & milk, and Vincristine.  

Round 4 = 6 meds.  And before you think no nausea as it is not mentioned as a side effect, just remember: it is always a side effect.   

Delayed Intensification Delayed Again

chowing down after 

Again on Monday morning we left for the hospital at 730 am.  And Manic Monday was on the radio.  Bad sign.  Both in lyrics, and in girl band.  More of a Go-Go's fan.  After a great double Mitzvah weekend (congratulations to Sami Jinich & Bati Shemtov!)  he was rested, in shape & ready to chemo down.  But to do the first step his ANC must be at 700.  And it came in at 520.  Meaning sushi is fine (and that is the really important part) but no lumbar puncture, which is needed to jump start this round.  Dr. Angiolillo assured me this is quite normal as the marrow is still repairing from the cumulative effects of massive methotraxate last round.
 
Normal                   Harry 6/18  7/21  7/23    8/1     8/11   8/18    8/29     9/11   9/26.      11/10    11/17
Hemoglobin  12-16      14.1           8.7     7.4     7.3    10.6     8.9      6.9       9.8    11.7        13.5   13.6
Platelets 150-350        235             89       65      370   309     169     40         362    369        252    241
WBC  5000-10000     8750           2006   100    640   3390   1930    1850    2580  6940    1740    2170
ANC. Above 1500.                      1150    270       50  1620    880     1210     1148  4990     470    540

Many thanks to Isaac Wolfe for the Mama Mancini's shirt.  Our favorite XM ad, second only to Rosetta Stone (and I do believe owning a new pair of shoes may make me a better person.  With a platform, maybe even a more stable person.)

The meat lovers meatball

   Till Friday when we try again.......

Delayed Intensification Delayed

If there was ever a name to sum up high school years, delayed intensification might be it.  The period right before we hit college and really become, or reinvent, ourselves into our future selves.  Well this is the name of round 4.

To go back to the beginning, Harry has 9 rounds of treatment.  This week begins round 4.  Delayed Intensification.  Or should have started.  After spending the morning at the hospital, it was found he did not make the counts.  To begin he needed his ANC at 700.  (Our usual basis is a minimum of 500 for Sushi.).  His number was 420.  So not even sushi for lunch.


Normal                   Harry 6/18    7/21   7/23    8/1      8/11   8/18    8/29     9/11   9/26.      11/10
Hemoglobin  12-16      14.1           8.7     7.4     7.3       10.6     8.9      6.9       9.8    11.7        13.5
Platelets 150-350        235             89       65      370      309     169     40         362    369        252
WBC  5000-10000     8750           2006   100    640      3390   1930    1850    2580  6940    1740
ANC. Above 1500.                      1150    270       50     1620    880     1210     1148  4990     470

But speaking of rounds, yesterday was the Hope for Henry Fight For Kids event featuring 3 boxers -  Chazz Witherspoon, Demarcus Corley & Mia St. John.  Harry hung out a bit with Chazz Witherspoon.  Harry actually boxed a bit at LA Boxing.  And had a punching ball on his room.  While he is presently unable to box, Chazz told him to continue to shadow box but most importantly box mentally.  (And I believe there could be a fabulous new low impact workout class - mental boxing/physical sleeping.  Combo of nap time with just the desire to get exercise.  Maybe the next [solidcore] for the lazy and out of shape?).

For those who don't know about Hope for Henry, it was started by my friend Laurie Strongin in memory of her son Henry who also had a rare form of cancer.  Laurie has dedicated her life to providing fun and a bit of normality to children facing long term hospital stays.  She organizes regular holiday parties, birthday presents, and even makeovers for the teens!  For more about It -www.HopeforHenry.org

In the meantime, we want to thank our cousin Julie Rosenberg, the wife of Fredric and the mother of Hamilton, for running in the Leukemia & Lymphoma Society's Moms in Training.  As a participant, she will run a 4 mile race in November to bring greater awareness to families with children in treatment. Fredric has also signed up to run the race, although he is doing his own training! For the Rosenberg-Weinstein clan her page is , http://pages.teamintraining.org/nyc/momintrn14/jmrosenberg.  And there are more cute photos of Hamilton! It means a lot to all of us, Julie. We are really touched.

Julie & Hamilton in training

On Saturday Harry joined the JPDS gang to celebrate the fabulous Ally Knapp's Bat Mitzvah!   He biked over during the day and he danced most of the night.  (And they thought he could not handle chemo this week?) A big Mazel Tov to the entire Milbauer Knapp mishpacha.

We try again next Monday.

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.