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.   

Adios August

Harry's last week of August was spent in what has become normal fashion for him: an infusion and three shots of Erwinia three times a week. As a reminder, part of Harry's chemotherapy is a drug called Erwinia which can only be administered by three simultaneous injections in the upper arms or thigh muscles. Remember how much that tetanus shot hurt?  Imagine three tetanus shots at the same time, three times a week, for two weeks per month.

Platelets & hemoglobin counts were on a downward slope last week.  And there was discussion of blood & platelet transfusions on Friday.  But Harry was feeling good and had Chinese practice scheduled at 4 p.m.
A transfusion would keep us there until 7 p.m.  So he decided to risk it until next week, promising us lots of rest. And he honored his promise, as he slept in until almost 1 p.m. on Saturday.

Normal                     Harry 6/18       6/24        7/1      7/21.     7/23    7/25       8/1      8/11   8/18    8/29
Hemoglobin  12-16      14.1                13.3.     13.2       8.7          7.4    7.7        7.3    10.6     8.9      6.9
Platelets 150-350        235                 174.       168        89          65      78         370   309     169     40
WBC  5000-10000     8750              6300.      6200     2006       1005  1420     640   3390   1930      1850
ANC.    Above 1500.                       4700.      2770      1150       270    480         50    1620  880       1210

On Wednesday at CNMC, Harry had some company.  Esther Kimmelman-Block was at the clinic for her appointment and came by to hang out.  Esther is a JPDS classmate of Harry's who was diagnosed with leukemia two years ago.  Her medical protocol is almost identical to Harry's.  So, Esther has been a wonderful source of what comes next, and what we need to check out (Camp Sunshine).

We mentioned last week that an eye exam was on the to-do list.  And that leads to...new glasses.  Ta-da:  

And many thanks to the Weiss family (and Miguel) for a fun (and early) Shabbat dinner!  

DC: Home to the Country's Best Restaurant and Best Baseball Team - Something for Every Weinstein

(FYI - This is a writing split.  You don't have to guess who wrote what.  Just know I tuned it down...)

We expected another long day on Tuesday.  Harry had planned ahead and invited Jacob & Bryan to come to the 2:00 p.m. dance party.  But we had an unexpectedly short day.  In and out in 2 hours!  First time we had such luck. And  Dr. Anne Angiolillo was in clinic today.  That is always a good thing, because Dr. A (or Angel-O) only has two rules - no playing with birds and no sushi if the ANC is below 500.  Beyond these barriers, anything goes.  Two weeks ago, she encouraged Harry to get back to the gym and to outdoor cycling.  She immediately noticed the impact of getting Harry back to working out his aggression through athletics, and not his parents. So the day had to be celebrated with more skateboarding.

Dr. A

As Harry is back on chemo after his break, his counts began to creep down (but remain in sushi range):
Normal                     Harry 6/18       6/24        7/1      7/21.     7/23    7/25       8/1      8/11    8/18
Hemoglobin  12-16      14.1                13.3.     13.2       8.7          7.4    7.7        7.3    10.6     8.9
Platelets 150-350        235                 174.       168        89          65      78         370   309     169
WBC  5000-10000     8750              6300.      6200     2006       1005  1420     640   3390   1930
ANC.    Above 1500.                       4700.      2770      1150       270    480         50    1620  880

And as his blood counts decline, his exhaustion rises.  When I picked him up from a friend's house, he quickly fell asleep in the car just like he did at the Gan.  And he slept for an hour in the car as I ran errands. (Is leaving a sleeping fifteen-year old alone in a running car with air conditioning on, as bad as leaving a sleeping three-year old?  Is it better or worse than when Jeane Kirkpatrick left her dog in her car, with a window cracked open, to go to the dry cleaner? At least I am not on the front page of WashPost Local section yet.)

And while have been concentrating on medical issues, we have been ignoring the basics.  This week, Harry went back to our orthodontist, Dr. Byrd, and found his teeth had not slid back to where they were before he stopped wearing his night retainer.   

Dr. Byrd's waiting room is always packed, and knowing Harry's weakened immunity, she allowed him to wait in her office (which is always much nicer than any waiting room.  As her patients know, Dr. Byrd's offices are nicer and more relaxing than being at home.)  

Dr. Kang: we'll see you tomorrow for that eye exam & glasses to go with the new hair style. Don't worry,  Dr. Giannini, you're are next.  But we feel every time Harry has a bite of salami or a bagel from the Zabar's basket - you're with us for a simulated at-home dental experience. 

Dr. Byrd and Harry

On Tuesday, Harry then went to see the best baseball team in the country, the Washington Nationals.  Many thanks to our wonderful neighbor, Eileen Ferrell, for giving us her great seats on the club level on the first base side.  Harry was delighted to be in enclosed space, while Raina and Jonah enjoyed our normal third base side seats. 

It was a very memorable evening.  Leon Wieseltier has already been an incredible source of wisdom and strength to us.  Last week, as Harry was in an "Entourage" phase, Leon did yet another extraordinary deed and reached out to his friend, Doug Ellin, the show's producer, to get Harry some incredible swag.   (It was a huge Hollywood week for Harry: Jeff Shell and Natalie Horsburgh continued the Hollywood theme by sending even more great  Universal Pictures movies and swag .  We are deeply grateful.  And running out of space.)

Later in the game, Leon brought us up with his family to sit in the Nats' owners' box.   He and the Lerners could not have been more gracious.

The moment we arrived in the owner's box, Harry was greeted as if he were a big-time celebrity, a la Vinnie Chase, by Steven Neuwirth, a friend of the Lerners who contributed to Jeremy Fand's fund to get Harry the Wahoo! trainer.  After some hugs and a nice chat with Neuwirth, Ed Cohen, and Ted Lerner, and some owner's suite food, we sat down to watch Anthony Rendon's bottom of the ninth walk-off single, driving in Bryce Harper for the Nats' 9th win in a row.  An amazing evening.

Harry and Steven Neuwirth, a.k.a. Jeremy Fand's friend (and the Lerners' friend as well!)

    

Harry and Edward Cohen, Principal Owner of the Washington Nationals

Then, on Wednesday, Bon Appetit announced that DC had the best restaurant in the country on Wednesday.  So where do we go Thursday?  Rose's Luxury, which lived up to its name.  I arrived at 4:30 p.m. for a fun sixty minute line wait in the rain.  (No reservations.  As my lobbyist line mate stated, with either admiration, sarcasm or just despair over missing a billable hour - it's an equal playing field for all Washingtonians.)  

We ordered every dish that was vegetarian or could be made vegetarian.  And we shared.  (But next time the lychee salad is mine alone.  And Eden claims the matzah ball carrots.)  Harry & Casey were even given a tour of the kitchen from chef/owner Aaron Silverman:

Kitchen tour with chef Aaron

Harry and Casey take on Rose's Luxury

  

And allowed us to join in

Afghan or Afghan: 2 definitions

He became a blankie guy thanks to Molly Reiner and her knitting talents.  Molly spent her free time this summer knitting Harry this beautiful afghan.  Harry has spent almost as much time nestled inside of it, as Molly took to create it.

Raina however sees Afghan in a different light and continues to practice her Tajik (spoken in Afghanistan.

My posts are a week behind and I apologize but my life feels as it is moving a week behind.  So I guess it balances out for me.

The weekend away made a huge difference in Harry's overall attitude and his numbers.  While not normal, still a huge improvement.

Normal                     Harry 6/18       6/24        7/1         7/8.       7/21.     7/23        7/25       8/1      8/11
Hemoglobin  12-16      14.1                13.3.     13.2         13.3      8.7          7.4          7.7        7.3    10.6
Platelets 150-350        235                 174.       168           170        89          65          78         370   309
WBC  5000-10000     8750              6300.      6200       3900      2006       1005      1420      640   3390
ANC.    Above 1500.                       4700.      2770       1460       1150       270       480          50    1620

Tuesday he was back for a full day.  830 am until almost 430 pm.  But to make the time go faster we had two special guests.  Raina spent the day with us!  And what can make Larry David go faster than sharing it with your sister.  Second was cousin Ted Sandler who just graduated from college and got to spend his week before beginning work donating blood, sitting in the hemoc clinic and driving up to Radnor to visit his grandmother (my beloved aunt, who is really a cousin, Ruth Jane Schwartz.). 

Luckily this was a week where the nursing came to Harry, and he received 3 treatments at home with Barbara, our Walgreens nurse.
 Monday's poker included late night skate boarding down Ordway - DC's version of SF.  Back to the hospital tomorrow.

Sometimes Nemacolin is Better Medicine Than Chemo

We learned in the hospital that seeing his friends is better than any chemo treatment.  The week has already gotten off to a good start.  On Sunday, Harry was visited by Sam, Max, Alan, and August.  They hung out and Harry showed them his new obsession - "Curb Your Enthusiasm."  And they saw Saul Goodman in possibly the prequel to the prequel for "Breaking Bad."

Most of my week was spent dealing with the hospital and insurance on billing.  We received our first bill:  for $349,384.85.  But the good news is we only owed $208,907.76!  After three days of constant calls, we learned that A) hospitals need to have better people handling billing (and please stop calling it "customer service"!) B) once you befriend a nurse, and get a direct line into your insurance company, it is amazing how fast service can be  C) hospitals will try to bill you above the insurance agreement, hoping you will pay.  The takeaway: always, always argue.  After our $10,000 deduction, turns out we only owe $150.  For now.  A genuine bargain and $349,234.85 below MSRP.

The bill for $208,907.76:  it had us turned sidewise as well!

Harry's numbers were too low the previous Friday to continue treatment.  His body was begging for a break. With no chemo this week, Harry felt better immediately.  He went to the Dupont Farmers' Market on Sunday and walked around the neighborhood on Monday.  And he was up for Monday poker night at the Jinich's.  And he looked so good, I even snuck in a little sushi.  (Sorry, Dr. A).  Wednesday, he went to the Nats' game with Aaron,  Doug Fister pitching a masterpiece against the Mets.  (Sorry, Aaron).  And Harry's blood counts went up enough that we were told he could take a weekend away, albeit with the normal restrictions - no airports, no leaving the country, somewhere within 60 minutes of a major medical center, no swimming in lakes or rivers, and no arguing with the patient (that last rule is is just for his sisters.).

After resolving the insurance issue, we realized we had an extra $208,757.76!  Vacation time!

With short notice, a return trip to Nantucket was not going to happen.   After several recommendations we decided to go up to Nemacolin. It actually sounds like a chemo drug.  Nemacolin.  Very therapeutic.   Booking on a Thursday for the next day, left us with limited room options. Five people in one room was tight.  But the wonderful folks at Nemacolin understood Harry does not get many days of vacation.  Mason at the front desk arranged for us to have the Presidential Suite (where presidents George H.W. Bush and Bill Clinton have actually stayed.).   It was spectacular - two king bedrooms, a living room, a dining room, full terrace/courtyard and a spectacular view of the mountains.  A bath tub so big it takes 40 minutes to fill.  And a butler.

Harry spent three days being normal - fishing, shooting, rope climbing, zip lining, paint ball combat, golf, mountain biking, off-road jeeping (can we verb-ize it?) and even a massage.  Maybe not normal, but pampered.

Many thanks to Mason, Brian, Katlyn, Keith and the fabulous team at Nemacolin.  This was an incredibly memorable weekend for us.  Back to the hospital on Tuesday.

Mason Lincoln & Harry (He is really tall!)

Harry and the Terrible, Horrible, No Good, Very Bad Week (oh, did I say how bad it was?)

Harry had another tough week.  From Monday through Wednesday, he had constant nausea and was quite ill.  Harry's blood numbers continued to drop.  His color was off and he was thoroughly exhausted.  And on Friday, when the possibility of a transfusion was mentioned, things were so bad, he actually said he wanted it.

Normal                      Harry 6/18       6/24        7/1         7/8.       7/21.     7/23        7/25       8/1
Hemoglobin  12-16      14.1                13.3.     13.2         13.3      8.7          7.4          7.7        7.3
Platelets 150-350        235                 174.       168           170        89          65          78         370
WBC  5000-10000     8750              6300.      6200       3900      2006       1005      1420      640
ANC.    Above 1500.                       4700.      2770       1460       1150       270       480          50

This transfusion, however, did not bring the energy boost he received from last week's infusion. Harry's color improved.  But his ANC is so low, he cannot go out for fear of infections.  His body does not have the ability to fight off anything.  This meant telling a friend recovering from a cold not to visit. 

Anything can land Harry in the hospital.  A cold can become like pneumonia for him, and an infection would be like Ebola to him (and, of course, there is also now an Ebola outbreak to add to the worries). So no hugs, kisses or contact.  Which was a problem because Raina came home for two days.

Raina had been in Tajikistan on a fellowship for the past six weeks to learn Farsi.  She returned late Thursday night (even later than she should have since Lufthansa lost her luggage) and was off Sunday morning for a high school journalism seminar this week in Michigan.  Ken, who left for a Hudson conference in India on Wednesday, returned from Bangalore on Sunday morning.  And with two international travelers (and the aforementioned Ebola epidemic), I had to enforce disinfecting showers before saying hello to Harry.

Fatwa on hugging very temporarily lifted: Raina returns!

The numbers were also so low, that Harry's doctors have decided he needs to take a week off from treatment. Unfortunately, this is not a vacation.  It is more like a hibernation.  Should Harry's blood counts rise, he may be allowed to take a long weekend away beginning Thursday.

Despite getting a clean MRI last week, the lower back pain continued.  We need to find out whether it is a muscle or nerve problem as the MRI showed there was no inflammation in the bone or joints.

our cousins - Joe & Leslie Sandler (with Douglass!)

The week was not without visitors.  Our cousins Leslie & Joe Sandler came by for a visit.  Due to Harry's exhaustion, he missed some visitors bearing gifts, such as Rob Davis dropping off tomatoes, the Ingbers who did a Costco run, and Gil Rosen with his miracle Douby juice.  And, of course, big thank yous to Charisse again for being with us at the hospital and Lyric for organizing our life.

What Eden & I do for fun these days

No Sushi For You

The dreaded transfusion happened today.  Harry had been dreading the possibility. It's a shame the transfusion had to be on Friday.  How cool would "Transfusion Tuesday" or "Bloody Monday" have been?   Though Harry's blood counts went up a little, it wasn't enough to permit anesthesia on Monday.  So it was either a civil war-style lumbar puncture (remember the hospital scenes from "Gone With The Wind") or having a transfusion.

Makeshift nurse Scarlett O'Hara preps for a lumbar puncture at the makeshift hospital at the church in Atlanta 

Speaking of numbers, when the ANC is under 500, there are perks for a teen boy - no flossing allowed and no trimming of toe nails.  But swimming and sushi are also banned, so it's a wash, except for the toe nails and teeth.


Normal                      Harry 6/18       6/24        7/1         7/8.       7/21.     7/23        7/25
Hemoglobin  12-16      14.1                13.3.     13.2         13.3      8.7          7.4          7.7
Platelets 150-350        235                 174.       168           170        89          65          78
WBC  5000-10000     8750              6300.      6200       3900      2006       1005      1420
ANC.    Above 1500.                       4700.      2770       1460       1150       270       480


Speaking of transfusions on Bloody Monday, it makes me wish we could have U2 at the official music in the hemo clinic.  But, instead, every day, a dance favorite from the '80's is played.  Today it's "Thriller."  They seem to really like Michael Jackson (ok, no anesthesia jokes or ones about presumed child molesters either, I promise).  And the hallway turns into the set of "Ellen" as the nurses and assorted patients and brave parents have a five-minute dance party.   (Laurie Moskowitz: Could I beg you to have Bono change the musical misdirection?)  

Harry really needed blood today

Harry has been complaining of pain for two weeks.  As I mentioned, he was immobile last weekend.   Wednesday, I bought him shoes at The Walking Store and that seemed to help.  On Thursday night, he had an MRI.   The pain could have marked the return of the ankylosing spondylitis, but given the fact he has weekly spinal infusions of methotrexate, it seemed not to fit.

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 a common cause for hip replacement at a certain age.  But that age is usually not fifteen.  For five days, we lived in huge fear that this would be our next 'side effect.'

Heading in for two hours of magnetic imaging 

The results on Friday morning revealed no such damage.  There was a small synovial cyst in the spine. Probably a result of the weekly lumbar punctures.  The cyst, combined with unstable flip flops (heck, I'll name the brand: Vineyard Vines), apparently caused the great pain.

A big thanks to our hero Stephanie Cooper Greenberg who ran two triathlons (yes, two) last weekend and sent Harry her finisher's shirt and asked him to come up and do a triathalon with her next summer.