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.

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 

Best Buddies is Back

Harry leading the pack at the 2013 Audi Best Buddies Challenge

Last year, Harry biked 100 miles in the Best Buddies Challenge.  And though he has been through a lot in the last year, he feels his greatest accomplishment is setting up a Best Buddies Club at Sidwell. It is the first Best Buddies high school chapter in DC.  The approval took 8 months to get.  When it launched last May, he had 32 members!

He is now organizing a Sidwell team for this year's race.  And he plans on riding.  Maybe not the full 100.  But he hopes 20 minimum.  It is October 18th.  He has scheduled his hospital stays to allow his participation (hopefully - as we know there is no such thing as advance planning.)  But he needs your support again this year.  Please support his ride in any amount at http://mydc2014.bestbuddieschallenge.org/harryweinstein  His goal is $850.

Best Buddies helps those with intellectual disabilities, by creating friendships across intellectual lines.  Harry's cousin Grace Solomon is one of the people Harry wants people to know.  Grace is fun, loves theater, sing & performing and creating art.  And just loves spending time with her cousins.

Harry, Raina & Grace Spring Break 2014 in Tampa

 

 In other news,  Harry is home!  He cleared the methotrexate a day early and was able to leave early tonight.   Though not in school, he spent part of the day in class through Dawn Berkeley's AV, and was able to see history & math.   And for Mr. Patwardhan, Harry made certain to watch lots of Dave Chappelle & Larry David to show how 14th Century English poetry still impacts modern Black/Jewish American humor.

24 Hour Meth Binge

The Herrington team on the CHOP walk

Harry returned to Room 423 on Friday.  First on the schedule: a lumbar puncture.  Last month, we watched "This is Spinal Tap," and Harry was disappointed that the movie wasn't a mockumentary of what goes on in the procedure room.  Returning to Harry's tap, he has really hates the procedure. Not so much because of the pain, but because of the anesthesia.  He feels sick for hours afterwards.  So this time, he decided to forego the anesthesia.  Something only for Clint Eastwood, Harrison Ford and 1940's Cowboys (movie cowboys, that is, John Wayne - not of the Dallas variety.  This is a "pro-Eagles" but "accepting of the Giants to avoid a divorce" blog.)  But Harry did it.  It was a major psychological victory.  He took charge and overcame the pain.


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

The twenty-four hour methotrexate drip started at 5 pm on Friday and was completed by Saturday night.  The methotrexate is administered over 24 hours at high doses and then Harry needs to be in the hospital to be massively hydrated and clear back to normal.  The toxicity of "being on Meth" as Harry puts it, presents problems for the liver and kidneys, and has other fun side effects, like painful mouth sores, so it is monitored carefully inpatient.

Shabbat Shuva dinner was provided by Pamela Auerbach with a Persian feast.  Shabbat visitors included JPDS buds Jacob & Harris who moved a basketball court into Harry's room for a game.  But Harry had to watch from the benches (or on Shabbat - the benchers).  A new development, knee pain, developed prior to this hospitalization: X-rays show no tumors or inflammation from AS, but the reoccurring pain has limited Harry's mobility.  It was also great to see Diana Beinart, down from NY, whom we miss dearly and wish she'd move back.  Even if it means rejoining the Obama administration!

Sunday brunch was hosted in room 423 with August, Ben & Casey stopping in for bagels.

OK, Harry STOP playing doctor

Jordan, Miles, Sam & Zach met up for later for 'studying'.  

Meanwhile Ned & the Schafer-Herrington crew were up in Philly for the annual CHoP Run/Walk - their largest cancer research fundraiser.  Thanks for walking for Harry!!!!

Steve Martin's L'shana Tova List

As we greet a new year, we wish everyone a year of good health, which honestly is what we have learned is most important, (unless you have heard Steve Martin's SNL Christmas  list - in which case it would be supreme & all encompassing power over every living being in the universe, followed by all the children of the world joining  hands and singing together in the spirit of harmony & peace (and the link attached will give the complete list
 https://www.youtube.com/watch?v=yXBfs2iLHRE  )

Annual Donvan Halpert Kornbluh Mishori Wallwork-Winik Weinstein gathering representing all DC independent schools.     

May all be inscribed for a good year.  Happy 5775!

https://www.youtube.com/watch?v=yXBfs2iLHRE

Trying to Walk the Walk ( Without the Limp)

For the last two months, Harry has been walking with a limp.  It is something that comes and goes and sometimes leaves him immobile on the sofa.   In July, I mentioned that we were very nervous because of the possibility of AVN - avascular necrosis.  Steroids used in chemo can cause a lack of blood flow to bone tissue, causing bones to collapse.  This is irreversible and only a bone replacement (such as an artificial hip) can help. 

The MRI, fortunately, came back clear.  But the pain was still there. An X-ray over the weekend again showed no damage to the bone.  But a pulled muscle would be healing by this point.  So a visit to OPSOM (our Patron Saint of Medicine) Laura Tosi was due.  She quickly assessed that Harry's mobility was reduced, indicating the possibility of the return of Ankylosing spondylitis. 

As you may recall, Harry's medical issues  began over five years ago with this auto-immune condition.  The disease  had been contained through the use of Humira, an auto-immune suppressant. Once Harry was diagnosed with cancer in May, he went off of Humira.  Autoimmune suppressants have been linked to increased incidence of cancer.  So without Humira, Harry may have significant pain and limited mobility.  With it, cancer.  Kind of a "Sophie's Choice," isn't it?  On October 7th, we go back up to Children's Hospital of Philadelphia for an assessment.  But the good news is the 2nd best new restaurant in the country (according to Bon Appetit) is High Street on Market, so that's where we will be dining.

In addition, Dr. Tosi thinks a hernia may be causing additional pain.  So now we get to add a general surgeon to the team.  I think there are only three specialists haven't yet been asked to see, so out of superstition, I am not even going to write them down.

This week, Harry decided to "harpoon the whale" and address his cancer in a speech at school. At Sidwell, there is a weekly Quaker meeting for worship that gathers  the entire high school together -- students, teachers, and faculty.  Students can sit silently or get up and share something of importance to them.  After three weeks of stares, whispers and uncomfortable weirdness, Harry decided to say something.  I was not there -- and Raina was actually out sick --  but I heard he combined humor, sarcasm, and facts about what he has, how he feels, and what never to say to him (such as trying to show  empathy by mentioning dead relatives who had cancer.). 

At first, the students did not know whether he was serious or joking (especially when he opened by denying the rumor that he was a skin head) but eventually he found his balance and everyone knew what was a pure joke and what was being said as a joke but had gravitas.  

I cannot imagine at 15 speaking before an audience of over 500.  And, I cannot imagine how he feels each day walking into school.  We had back to school night on Thursday and I tried my hardest to keep my eyes to the ground,  running plays like LeSean McCoy, to avoid looks of  pity and naive comments.   A big thank you to my friend Frances who said the truest thing of the  night. "You always seem to be in good humor but you must be going through hell." 

Methotrexate, the 24 Hour Treat

The point of this hospital stay was to pump Harry with large amounts of methotrexate for 24 hours, while pumping him with large amounts of saline and some leukoporin to offset some of the side effects of methotrexate -- all while monitoring his blood levels until the methotrexate level dropped below .1, so Harry could go home.

Methotrexate, you see, is a potent chemo drug but one that can cause severe damage to the liver and kidney as well as painful sores on the lips. So nurses were coming day and night to refresh his saline drip to make sure he was fully hydrated.

After the infusion, Harry's first methotrexate level was .72 on Friday night.  By Saturday morning, it was at .46. By Saturday evening, it dropped to .27.  And Sunday morning, we got word that Harry would be able to leave at 7 p.m. that evening.  This is considered quick processing!

In the hospital, Harry developed a bruise on his foot. This may be a side effect from another chemo drug he takes, vincristin.  A physical therapist came to see Harry to examine the ongoing hip/groin pain which is now causing Harry to limp.  (He needed crutches at school on Wednesday but then, as a typically forgetful teenager, left them there.)  X-rays of Harry's hip and pelvis once again came back negative, but the therapist insisted that it was a joint problem, not a muscle one.  So we await our Patron Saint of Medicine, Dr. Laura Tosi, who will return from Houston later this week and give us a consult.

Harry awaits X-rays with Kelly on Saturday night

Many of you did not know Harry was in the hospital.  We neither gave advanced warning nor did we ask for visitors.  Don't worry -- here's advanced notice: we'll be back in two weeks.  With school back in session, Harry used Thursday and Friday to keep up by watching his classes online.

The nurses were simply baffled: most could not understand Harry voluntary reading Beowulf as teen patients tend to view hospital time as time off.  But not Harry.  He wants to keep up with his work: a very good thing as Mr. Patwardhan, his English teacher, came to visit!  But fortunately there was no pop quiz.  Mr. Patwardhan is the kind of teacher you remember your entire life.  Part Robin Williams in "Dead Poet Society" by way of Bollywood (ok, really Mumbai, but who knows the difference) and great books (St. John's Santa Fe).

Harry and his English teacher, Mr. Patwardhan

Ken's Aunt Marilyn & Cousin Linda came in from California to visit.  This was, if you remember, originally supposed to be Eden's Bat Mitzvah weekend.  And though we delayed the bat mitzvah, they decided not to delay a visit. It was an even more special trip since it was the first time we saw them since Ken's Uncle Bob passed away.

Linda made an appointment from Oakland to donate platelets but after two hours of giving, there was a glitch in the aphoresis kit and she was unable to complete it.  This sometimes can happen due to a manufacturer error's.   But it was incredibly nice of Linda to do this during her vacation here in DC. She is very California chill -- no New Yorker left in her blood stream -- she didn't even complain about wasting time or platelets!

Aunt Marilyn, Harry and Cousin Linda

Ken's Uncle Seli, who is 79 and feeling the effects of a stroke, also came down to visit for the third time since Harry's diagnosis. It is always nice to see Seli who serves in loco parentis on Ken's side of the family.

Harry's pediatrician, Dr. Michelle Barnes, came by to spend time with Harry.  Dr. Barnes, you may recall, insisted back on May 19th that we get that little bruise on Harry's arm checked out.  Glad we listened!

Harry with Dr. Michelle Barnes

Another Sat night in Room 423 

A number of Harry's friends came by. Saturday night was "poker night" with the JPDS boys. And even though no poker was played, Harry and his buddies had a great time catching up.  On Sunday, Casey came back to hang out.

We had lots of good food this weekend.  One new fun activity was the "make your own" Oreo bar, sponsored by Leslie Knibb. Sharing her love for Oreos, she bought Harry every flavor imaginable. Eden then took to creating new combinations, including peanut butter-mint and pumpkin-limeade.
I am still waiting for the tequila Oreos to hit the market.  (Hey, Ted's Bulletin has bourbon milkshakes. Why not Oreos?)

Shabbat we were delivered a feast of Harry's favorites - schnitzel from the Schreier-Roses.  Harry had pizza Saturday night thanks to Sarah Brooks (with an assist by the Eyl-Chanins) and returned home Sunday to dan-dan noodles imported from Rockville by Leah Odinec (with an assist by Mani).

And last a big thanks to the Weiss family who gave me a very lemony birthday.  We had not planned anything for my birthday, as we have learned never to plan with an active chemo patient.  But Eden mentioned it to her friend from birth, Rebecca, and Rebecca's mom Laura sought out every lemon cookie, tart, cake, flower and beauty appliance to help make my day.  And it did!
    

Back in 423

Harry was scheduled to go into the hospital on Friday for three to five days.  But on Wednesday, I received a call that the hospital was at max capacity (always good to know that there are maximum germs out there waiting.). Due to hospital policy, only four patients can be admitted daily. Someone who had been scheduled for admittance last week did not make counts and had to come this week instead.  So Harry made 5 -- and we needed to come a day early to get around the four patient admittance limitation.

So here we are on Thursday back in room 423, where Harry spent three weeks in June.  We left the bike and a lot else at home this time.  (Special thanks to Eileen Walters, our nurse navigator, and Sarah Koch of Children;'s National, who arranged for Harry to 'keep' his room.)

We are now starting, Round Three: Interim Maintenance.   This round will last for two months. It consists of five days in the hospital, and nine days out.  Then back in.  This 2 week cycle runs the 2 months amounting to 4 hospital stays.  We may need a bit of help this round.  Especially with driving the girls.

Harry will receive high doses of methotrexate, a drug he has taken previously.  But the dosage level for this round is so high that it is toxic.  Or can be.

To avoid liver damage, mouth sores and other fun side effects beyond killing cancer cells, he needs to be monitored and constantly hydrated.  And he can leave once enough of the methotrexate clears his system.

Normal                   Harry 6/18       6/24.      7/21.     7/23        8/1      8/11   8/18    8/29     9/11
Hemoglobin  12-16      14.1                13.3.      8.7          7.4     7.3    10.6     8.9      6.9.       9.8
Platelets 150-350        235                 174.        89          65       370   309     169     40.         362
WBC  5000-10000     8750              6300.       2006       100    640   3390   1930      1850.    2580
ANC.    Above 1500.                       4700.      1150       270       50    1620  880       1210.       1148

Methotrexate: It even looks scary!

Harry and Dr. Jacobs prep for Round Three