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

Back To School

Yes, Harry will be starting school tomorrow!  Many children in Harry's situation either take a year off from school or spend the year in home schooling, to devote full attention to medical realities.  The time this summer that Harry spent with friends did more to make him feel better than just about anything else.  So we decided that keeping him in school would boost his morale and help him to keep up the fight.

We owe a huge thank you to the entire Sidwell team which worked all summer to make sure that Harry could continue simultaneously on rigorous academic and medical schedules.  We start with Jasmin Whitfield, the school nurse, and our first point of contact.  Jasmin was given the task of coordinating the team to keep Harry at school and keep him safe medically.  Sidwell has never had a student on active chemo attend school, so this was a challenge.  But that's what Sidwell is all about - meeting the challenge.

Nurse Jasmin

Jasmin was like Professor X. Xavier: she assembled a team of superheroes and brought them into action.  The team: Principal Mamadou Gueye, Academic Dean Min Kim, Dean of Students Michael Woods, Guidance Counselor Gaby Grebski, Academic Technology Coordinator Dawn Berkeley, and Learning Support Coodinator Michelle Schneck.  They held countless summer meetings to ensure Harry could attend school.  And the team also includes Harry's teachers this year - Mr. Patwardhan, Mr. Senger, Ms. Wang, and Mr. Markey.  And, in our meeting with everyone, we heard the words from Mamadou & Min that no upper school parent has ever heard in that office:  "We don't want you to worry about the grades.  They are not important."   (Ken still left worrying.)

Dean Kim

Min & Dawn evaluated numerous remote access formats to develop a system to allow Harry to be in school when he cannot be. Through applications and cameras in each classroom, Harry's classes will be webcast to him on days he may be in the hospital or unable to come to school.  In addition to allowing Harry to participate live, classes will be recorded for days Harry cannot 'attend' remote due to surgical procedures, low blood counts or just plain old feeling lousy.  And all his teachers had to go through extra training to ensure it all works.

Principal Mamadou

We are also deeply grateful to Mamadou for sending a notice reminding all parents to take extra precaution this year and keep students who feel ill at home.  As readers of this blog know, catching even a minor cold could be like pneumonia to Harry, and a fever like Ebola and Ebola - well let's not even go there!  (And Ken, for the record, has even curtailed his Africa travels.)

Harry refused to move down a level in math or to give up Chinese.  But to lighten his schedule, he will forego science this year.  His absences will make lab catch up too difficult.  So Harry he will either take an extra science junior year (and take history or English over the summer) or try to study and place out of Chem I.  Still, even without science, it will be a very demanding year for Harry academically as he will also have his extra "labs" in chemo three times per week.

In addition to everything else, Nurse Jasmin is providing Harry with a nap space, should he need some down time.

In the big thank you of the week, we are deeply grateful to everyone at Sidwell who dedicated so much time this summer to allowing Harry to continue to be part of this amazing school.