Hair today, going tomorrow

This week, the impact of the chemo became very apparent.  Harry's hair is now thinning and spotty.

Hair on pillow after a night's sleep

And his blood counts began to drop:

Normal                      Harry 6/18      Harry 6/24      
Hemoglobin  12-16     Harry 14.1         13.3
Platelets 150-350       Harry  235          174
WBC  5000-10000    Harry 8750         6300

While Harry's numbers are still within normal, they have dropped, bringing the fear of compromised immunity and possible risk of infections.

Harry had an 'easy' week with only one appointment at the hospital for an infusion on Tuesday.  Planning is something that has become day by day.

As we mentioned, there was a possibility of a break between rounds and a trip to London.   Harry will be given a five-day break.  But the doctors all agreed London is out. A seven-hour plane ride across the Atlantic is not safe for Harry.

Due to the risk of infection, he needs to be within an hour of a hospital at all times.  Plus, airplanes and airports are germ factories.  So no Tour de France (which begins in Leeds during that window) and no hanging with Sacha Baron Cohen on the set. (Hey, if you have to spend a summer with chemo as the main activity, you would dream big as well for your only break.)

After some discussion, we were given permission to go up to Nantucket.  The major points were direct flights under an hour or a private plane or drive.  Harry's chemo break falls July 3-7.  Fourth of July weekend.  Direct flights from DC are sold out.  (The organizations that facilitate travel for cancer patients on corporate jets had no flights to Nantucket.) As ACK is a haven for private jets, we have begun to ask around to see if someone may have a spare seat.  No matter what, Harry will get five days of vacation.

Harry was also granted an overnight by his doctor since it was a light week.  He was able to go visit Casey and the Asian clan (their term, not mine, and Harry is an honorary member) in Annapolis.  Casey, Miles, Amal, Juno and Harry sailed, kayaked, and drove golf carts.  It was a great 24 hours away from DC and Amy tagged along staying a safe ten minutes away.

In addition, he was able to watch World Cup, play poker with the JPDS crew, and have Shabbat with two of the funniest guys around: Aaron and Ben. Harry finally has less hair than Aaron, so people will now know which one is the cancer patient.

Before Harry's appointment, Amy made another platelet donation.  If you can donate blood or platelets,  please contact Kara Mazer of CNMC at kmazer@childrensnational.org.  Her number is 202-476-6524.  Thanks to those who have already donated or scheduled appointments.  Due to medical confidentiality rules, we will not know who the generous donors are.  So please let us know. 

And after saying goodbye to Eden (who left for Ramah), going to chemo and donating platelets, it was wonderful to find a meal from Beth Kanter Goodell waiting for us!  With an added bonus from Mark Katkov.  It was a treat at the end of a long day!  

Jeanie finally got Harry to do something we have not in three years - clean his room.  Four large outdoor garbage cans of trash and donations were hauled off!  After five hours, it was a vast improvement with room for his bike.  (At some point, we will get under the bed.).   Big thanks to Jeanie and C. Lee!!!!


And then Lyric, Gracia and Carmen faced an almost equal challenge: reorganizing our kitchen.  After five hours, they uncovered terra incognito: much more floor space in the kitchen thanks to six filled garbage pails hauled off.  Ken is especially grateful as he now thinks he has saved a fortune on a kitchen renovation.   

Something Red

We have something to ask of you.

Remember last month when you kept asking 'what can I do?'  Perhaps you were shut out of meal sign up. Maybe you responded a minute too late, putting you in 6th place for the DustBuster.  You actually wanted to haul cases of water through a parking lot and up to Harry's room.  What we ask now is easier and harder.

We want your blood.

This isn't Dracula or Tony Soprano. This isn't like when you grandmother would complain "the next thing they will want is my blood."   We really want your blood -- and your platelets in particular.

This is not for Harry specifically, but for Children's National Medical Center.

CNMC is desperately low in platelets.  Platelet donation is more involved than blood donation.  It requires 2 1/2 to 3 hours.  You first need to get a spot test.  Then you get to answer a lot of private questions that will surely give you great cocktail party conversation for months.  (Make certain you ask your spouse in advance how many transgender prostitutes they have been with this month.)  Finally, you get hooked up to a machine that will draw draw blood continually, suck out the platelets and return the rest back in.  And, if you come up to the infusion center, you can see the machine in action - actually giving those platelets to a child in desperate need with sickle cell anemia, leukemia, or an array of illness which lower their platelet levels.

If you cannot donate platelets, donate blood.

But here is the important part: you need to go to Children's National Medical Center at 111 Michigan Avenue, NW to give.  While it is wonderful to donate to the Red Cross, they are actually sell your blood to the hospitals.

That's right: CNMC has to pay the Red Cross for blood.  So please contact Kara Mazer of CNMC.    kmazer@childrensnational.org.  Her number is 202-476-6524.  She can answer questions, schedule appointments, and let you know if you are allowed to donate (trips certain countries could prevent you).   I am attaching the eligibility requirements above so you can see if you, your spouse and/or your children can be donors. 

The donation center closes at 4 p.m.  To donate platelets, you need to be there before 1:30 p.m.  (I actually got caught by this twice.)  But it does open at 7 a.m.

In addition, we also hope to have the bloodmobile visit JPDS, Kesher, Adas and Sidwell in the Fall.

And as long as you're there, don't forget to get swabbed to be a possible bone marrow donor.  All this takes is a swab on the cheek.

No blood involved.  Harry is very lucky as Raina is a perfect match, should we need it in the future.

But many children wait months, possibly years, and we see their parents on the 4th floor hoping to find that match.

Please contact Kara.

Many thanks for all your support, good wishes, positive karma, keeping us in the light and every positive measure of faith, love & friendship.

Amy

P.S. And yes - please forward this on!

Inspiration from Lance (yes, that Lance)

Apologies for no updates this week.  With Harry home, we were trying to adjust to outpatient status.

Harry was happy to be home as the food is somewhat better and he can make requests to the kitchen at any hour.  Harry felt well enough to have a few outings with 'the boys': "22 Jump Street" -- he has cancer and can watch R-rated movies (his friends don't have that excuse) and a poker night. He was even able to go to his sister Eden's graduation from JPDS!

While he went biking outdoors, he was still not at his usual strength which frustrates him.  Luckily, he received a video message from someone who has gone through this himself: Lance Armstrong!  He recalled his own health struggle, gave Harry lots of encouragement, and offered to even go out for a ride with him sometime!  Harry was thrilled to get Armstrong''s encouragement --I have rarely seen him more amazed -- and the touching video brought tears to everyone in the examination room, including Dr. Marcus.  Deepest appreciation to Aunt Jill, Milan Martin, Diann Hamilton, Mike Nesladek and Mark Higgins for arranging this.  Below is Harry's reaction to the video.

Harry had three chemo treatments this week.  When one is a patient in the hospital, the treatments just occur, whether you have guests, are watching a movie, or just hanging out.  As an outpatient, things are very different: visits can take six hours, with the wait just for medication alone lasting 2 1/2 hours.  Yes, that was our wait time on Wednesday.  And a small rash near his port may force us to abandon our plans for London.  This is how infections start.  But his blood counts remained within normal range again,

The week ended with Harry leining his bar mitzvah Maftir & haftorah at the hashkama minyan at Kesher Israel.  The early show at 7:30 am.  We perhaps were even more proud of him Saturday, than on his actual Bar Mitzvah, two years ago.  Harry practiced Friday during chemo with his teacher Howard Rosen, who came to the hospital infusion center, to practice with him.  And Harry attended Mairav Diamond's  Bat Mitzvah later that morning.

Next week will be easier, with only one chemo session scheduled.  If you want to visit, please email Amy (abkauff@gmail.com).  We are trying to limit to one visit a day as his exhaustion is rising.

Going Home

The Blood Numbers are Good

Harry will be home tonight.  Yes, his numbers are that good!

Let me answer some basic questions right at the outset:

First, Harry still has cancer.  While we appreciate the congratulations, he is not magically cured.  He is just doing well enough to leave the hospital, mostly for insurance reasons.  He has a very long road of chemotherapy ahead, three and a half  years in total.

That being said, we are all very excited about Harry going home.  It is wonderful that he will be in his own bed tonight.

But primarily this is what is changing: he will be in his own bed and outside the hospital. We are very grateful.

The rest remains the same: the chemo, IV drips, triple injections, and weekly spinal taps, will be par for the course the next few weeks, and over the next seven months.  No biking camp, nor business camp at Palo Alto for Harry. And we need to keep an eye on his temperature, his blood counts, and the like.  So please don't ask what he plans to do this summer.  The answer is chemo.

His 4 am blood results:

Normal                      Harry
Hemoglobin  12-16     Harry 14.9
Platelets 150-350        Harry  272
WBC  5000-10000    Harry 6060

Harry is in the normal range for all counts!  What this means is that his platelets show that, should he get cut, punched or fall off his bike, his blood should clot and emergency treatment will not be needed.  The WBC shows that he is at little risk of infection as of now and can be out in public.  This could change and change dramatically as he undergoes more chemo.

But we still need to take precautions: he should not be in contact with anyone who may be ill, and we need anyone who sees him to wash their hands or use Purell when you visit.

Father's Day Brunch

Ken's cousins, the Liebowitz's & the Kay's came by for Sunday brunch, bringing bagels, lox & all the accompaniments:

And the nurses gave Harry another triple shot of chemo:

And it was spirit day, so Harry had a tutu send off.

The Donvans

One day a song needs to be written to John Donvan and Ranit Mishori to thank them for all they have done the last few weeks.  That will have to wait for an appropriate lyricist.  In the meantime, I cannot thank John enough for moving us out today, including Harry's famed bike equipment and the now famous Wahoo Kickr, donated by Jeremy Fand, and the great guys on Skippy's Team and Team Velo 5.  Here, John is being helped by Christopher Lombardi of CNMC, also a cyclist:

After arriving home, Harry & Ken went down to Revolution Cycle to get some repairs done on Harry's other bikes.  Then, we had a traditional Japanese dinner at Izakaya Seki.

Happy Father's Day.

Visitors, visitor, visitors on our 3rd Shabbat at Children's National

Saturday was quiet.  As we now see on our third weekend here, nothing much happens medically on Saturday or Sunday.

But Harry had visitors, visitors, visitors.

Ken's Uncle Seli, just fresh from his 79th birthday, came down from New York for a second visit with Harry. Seli, though suffering the effects of a significant stroke (characteristically without complaint), made these trips, as he put it, because neither of Ken's parents are around to visit. Spending time with Uncle Seli has always been special for us, and we look forward to happier occasions before too long.

Harry's JPDS friend Harris Karlin stopped by, and brought all the necessities (no cigars or whiskey, alas) for some serious poker.  Harris, Richard (his dad), and Cole and Jonah Aronson 'gambled' in the lounge, while the parents, Harris' mother, Ann, Pamela Auerbach and Doug Feith stayed back.  Pamela again, transformed the hospital room, organizing, straightening, and helping pack up.  Forget about her high-powered legal career: keeping this room organized has become Pamela's new specialty (and we are now absolutely terrified to disappoint her!).

Marina Feldman & Maia stopped over after Rebecca Weiss's Bat Mitzvah.  Rebecca did all the aliyot and davened musaf -- and delivered a fabulous speech combining her love of baking & spying (both mentioned in the parsha). Maia and Eden spent time with Alicia, a sweet 13-year old patient next door who is in for her last round of chemo.

We cleared out of Harry's room because he spent much of the afternoon with return visitors Casey Dorfman & August Caldwell, who brought Judith Besnainou with them. August gave Harry and Casey matching tattoos. (This is the second set of markers we'll be following closely this summer: these tattoos will give us an indication of how often teenage boys actually bathe and shower.)

One of Harry's favorite doctors -- Dr. Shalabi (she, now known to you readers as the White Sox fan) -- came to say good-bye as she is not on call on Sunday:

Lyric Winik made an incredible meal, hot from the oven, full of produce from the farmers' market.

The day ended with Harry watching "Wolf of Wall Street" with Ethan Josovitz.  (Yes, slouching towards Gomorrah indeed:  now that our son has cancer, we have become a slightly less concerned about shielding him from movies that are, well, inappropriate.)

After catching the end of the Japan-Cote d'Ivoire soccer match, Harry headed for an early (pre-midnight) bedtime.

Should Harry's blood count look good at 4 am -- yes, that is when blood is drawn around here -- he will be going home tomorrow, to continue on the very long road of chemotherapy as an outpatient.

Choose Your Headline

So much to tell today, and so very tough to decide what gets top billing.  If this were The New York Post, we'd have to go with:

SACHA BARON COHEN ON DA LINE

That's right!  The man who keeps Harry up at night, who has shared this journey and been part of Harry's world for the last two years, called him.  And they chatted for 13 minutes!  (Special thanks to Norm Eisen for dreaming this up and deep appreciation to Jeff Shell [with an assist to Natalie Horsburgh] for setting this up.)  They discussed all his characters, Hebrew being the secret language, and how his own children cannot see his movies (but our 11 year old Eden does!)   SBC invited Harry to the set of his new movie shooting now in London.  And guess what - Harry actually has a six-day break in early July.  So he may be London-bound.  Worth 3 1/2 years of chemo?  

  

Which one is Harry?

The second breaking news story, which The Wall Street Journal might have led with:

HARRY HEADS HOME SUNDAY

As I wrote yesterday, all his numbers look great!  So the doctors are allowing Harry to go "out patient" and come in three times a week for treatment.  While he is home, he will try to live as normal a life as possible, and go out as long as his platelet levels stay high.  He would still love company, and may be able to go out to a movie or go on a bike ride.   Please contact Harry or me, but do keep visiting him as the visits with his friends have truly helped the most.  I will notify everyone on the sign up as well.  And as for meals, we should be ok on our own, but may ask for a little help as he will still be in treatment three days a week till July 2.

But if this were the Sidwell Oat, it might lead with:

TEACHERS LEAVE CAMPUS

Normally, Harry might be nervous to see three of his teachers, but it was great visiting with Jon Mormino (math), Laura Jordan (history) and Gail Krotky (the freshman dean).  Ms.  Krotky asked Harry which he preferred this year: math or history.  He responded that it was a tough call, which would have been easier his research paper grade had been higher.  But Ms. Jordan did knit him a great cap, so all may be forgiven.

Amazing how different teachers look out of school

As Harry is heading home, they allowed him to walk around inside the hospital.  He visited the chapel.  

And the kosher pantry.  

Last, Raina stopped by today as she leaves tomorrow evening for six weeks.  She skipped her "Safety in Tajikistan" seminar to come by.  (Hope she stays safe without the seminar.)

We are looking forward to Shabbat dinner with the Kupfers.  Home made challah and fish straight from the grill.   Shabbat Shalom.  

"The luckiest unlucky"

Harry's day started at 11 am when he was forced to wake up (since he stayed up until 2 am, he would have slept until 2 pm if allowed.).

During rounds, his blood numbers were all within normal range.  Typically, during chemo, days 7-10 after induction, which Harry underwent last week, are considered the nadir, when the greatest drop in numbers are seen.  The three things that are monitored are hemoglobin, platelets and white blood cells.  Normal for each is listed with Harry's numbers alongside:

Hemoglobin  12-16    Harry14.7
Platelets 150-350       Harry  274
WBC  5000-10000     Harry 5800

Harry is in the normal range for every category!  Again this is amazing and shows how strong he is. Most patients have a sharp drop.  As our friend Leon Wieseltier observed tonight, "Harry is the luckiest unlucky person I know."

This morning Harry's Gan teacher Menuhah Peters came by with a project her class had made to brighten the room.  Each parent outlined their child's hand. Children then decorated their "hand" with markers. Together, children and parents picked a positive kavannah to write in English and Hebrew. And on the back was the child's name and photo.  How can you not feel better looking at this?

Miles Zhang was back.  He, Harry and 'Dr.' Melissa Lu placed a game of Monopoly.  

Pop Pop said his goodbyes as he returned to Florida.  While Amy took him to the airport, Harry's advisor David Connell stopped by.  Harry suggested a service project in which he would spend time with teen cancer patients.

Later, Esther Kimmelman Block came by and shared her experience as a leukemia patient.  Esther and Harry were at JPDS together.  When Harry was diagnosed with ankylosing spondylitis, Esther was diagnosed with epilepsy.  Now, both are cancer patients.  Esther gave Harry her hipster hat collection which she thankfully no longer needs as well as her other tools for getting through the first year.  These meant a great deal to Esther and are now dear to Harry for that reason.

The night concluded with a visit from Lindsay Kaplan and Tamar Eisen, and Leon.  Harry had a better reaction to the chemo as he was on a stronger anti-nausea  medicine - Kytril.  This was suggestion by our Patron Saint of Medicine - Laura Tosi - who two years ago did chemo, took kytril and then saw her patients.

Harry also did two endurance rides today!  And big shout to our fabulous team of nursing Lindsey & Amy.  (Lots of Lindsa/eys and Amys today apparently!)

Check out tomorrow's post as we will have a special guest star.

Thank You, Sir. May I please have another?

Both Harry and Ken slept in until 11 am, causing Harry to miss some morning visitors.  Cheryl Troy stopped by with her coconut bars still warm from the oven.

Most of the day was spent undergoing chemo treatments.   First, off to the OR where Harry had another dose of chemo directed into the spine and a spinal tap (but no Christopher Guest).   Then, a triple shot of asparaginase.  And, to finish off the day, an infusion.  Yes, a triple shot, a threefor, a trio, the trinity of chemo.  Harry is unfailingly polite -- guess we get some credit for a good upbringing -- our nurses tell us that Harry is the only patient who says "thank you" to them for his chemo.

                                                   Harry with Dr. Leigh Marcus, the admitting physician
                                                    


Harry received a Cubs shirt from the Chicago Yonovers.  Jack and Mason, who attended the Indianapolis 500 last year with Harry, wished Harry could be like the Cubs in his fight with cancer. Hearing this comparison made Harry, for the first time, afraid of his prognosis!  (Dr. Shalabi, who is also from Chicago and is a White Sox fan, noted that Harry shouldn't worry -- he is definitely going to do better than the Cubs.)

Andy Harris stopped by with fun stuff for Harry, but also the things parents need for spending nights in the hospital: earplugs and sleepmasks.   This summer, Andy will be shaving his head as part of a camp ritual.  Hopefully the teachers will be able to tell them apart this fall.

Marina Feldman, fresh from Maia's kvel-inducing Bat Mitzvah, stopped by with treats.  And Paula Shoyer returned with another of her fabulous meals.  But alas, Jake & Joe forgot the frisbees for a hall game of ultimate.  Not only did Harry enjoy the meal but Ben Donvan brought over Ben Cooper, Ned Harrington, & Miles Zhang for dinner and "Superbad."  I mean Hotel For Dogs, because Superbad is rated R and these boys would never see anything R rated until they are 18.  This was Raina's last night before the big trip (Tajikistan). And the boys' night together allowed the rest of the family to be with Raina. It also provided for massive if not inhuman consumption of all the snacks we've been piling up.

The night ended for Harry (who cannot sleep these days) with a midnight showing of Ali G.

It's Sometimes Sunny in Room 423

For the first time since chemo began, Harry woke up smiling and laughing when he emerged from sleep at 11 am.  He had a big breakfast that included French toast as well as macaroni and cheese.

Harry stayed happy all day. We expected Tuesday to be a good day, as it was six days since the first major chemo blast, and our expectations were actually exceeded.  

Harry was delighted to see his Sidwell classmate Jade Lintott and her mom, May Liang. Ken expressed deep gratitude to May and her husband, Jim Lintott; not only are May and Jim good friends who happen to hold market-oriented political views (as does Jade), but Jim, more importantly in this instance (yes, occasionally, even during the days of Obama, there are more important things), is also Chairman of Children's National Medical Center. Jim, who has spent endless hours as Chair -- and the CEO he hired, Dr. Kurt Newman -- have helped make Children's the extraordinarily caring and well functioning institution it is.  Every major medical expert we consulted, from Munster to Los Angeles, including leading specialists at Dana Farber, CHoP and beyond, indicated that this is an excellent place for Harry to be treated, both for the quality of care and the quality of the medical professionals. In addition, the Lintotts have assured that this place, which offers remarkable and loving care, keeps a special eye on us, for which we are profoundly grateful.     

Harry was also delighted to see Sophie Bass, who was Harry's classmate, first for six years at JPDS, and now at Sidwell.  Harry, Jade and Sophie caught up on class news, teachers, and amusing stories as Ken, Felice (Sophie's mom), May, and Pop Pop chatted in the Ronald McDonald/aka Harry Weinstein lounge.

Harry then spent some time on his Wahoo Kickr: an hour doing a workout that would have sent any other member of our family into fatal cardiac arrest.  

After the big workout, and a lunch that included meatballs made by Lisa Schreier, Harry then had visitors from the Sidwell Investment Club: club heads Ali Ahmed, Sam Margolis, and Andrew Sager.  They brought Harry a slew of movies about business (including "Office Space," which Harry watched, and a Monopoly game.)   

David Zimand, the assistant head of school at JPDS, stopped by for a visit and dropped off Eden, as did Vanessa Gluck and Ben May who brought Gatorade.  Vanessa, an anesthesiologist, shared advice on how to beat pain, which Harry needs as he gets ready for another spinal tap on Wednesday.   

The visit was followed by a late afternoon showing of..."Borat" for PopPop as Dad received "psychological counseling" from his friend, the geostrategist Walter Russell Mead. 

For dinner, we followed the sage advice of Leon Wieseltier once again and ordered Radius Pizza, which friends told Leon was a terrific place for those who eat take out pizza.  Harry ate six slices of 18" pizza as well as pasta -- which would have been a normal meal for him two weeks ago -- and, like the aforementioned cycling, would have sent anybody else in the family into fatal cardiac arrest. 

Harry's sister Raina then spent a couple of hours of alone time with Harry before she leaves for Tajikistan later this week.  They spent quality time watching "It's Always Sunny in Philadelphia."  

  

    

3:30 AM: Perfect for Sleeping, Cycling, and Sacha Baron Cohen

Harry's day began just as any normal fifteen-year old boy's might: with a 3:30 AM viewing of "Borat."   

Ken, who was on overnight duty, has long been known as more lenient to the kids with regard to bedtime, but this was a little over the top. Sacha Baron Cohen is Harry's favorite actor so watching the movie brought great joy to room 423 at Children's National.  Ken thought the viewing was, as "Borat" says and Harry often repeats, "a pain in my chrem."

After the late night (or early morning) movie, Harry decided to go for a spin on Wahoo kickr, achieving speeds over 25 mph.  But after a good forty minute ride, Harry had to take a break, rehydrate and recuperate from the headache he just gave himself.  

The recuperation included a late nap that went until nearly 11 am, when Harry awoke to three visitors: Alfred Moses, and two of Alfred's colleagues from Promontory whom Harry interned with in 2013.  (Erica Bovenzi, Promontory's Chef Administrative Officer, admitted that they adored eighth grade Harry when he came to Promontory dressed in a double-breasted suit daily, with the Wall Street Journal tucked underneath his arm.) 

Though Harry is clearly showing a pre-disposition to guests of the fairer sex these days, he is shirtless because wearing a shirt can be painful with the IV port protruding from his chest.

Peter, Jacob and Etan Basser came by to chat.  While Jacob and Etan joined Harry to watch the absolutely hysterical and completely inappropriate "Superbad," which Pop Pop, who is still in town, also enjoyed. Peter, who is at NIH, and Ken chatted re the treatment regime.  

Sam Rabinowitz stopped by and played a more sedate game of Scrabble with Harry, who is the reigning family champion.  Hopefully he wasn't as competitive with Sam as he is to us.

Harry may be partial to women, but even that doesn't explain the next photo: 

Here, Harry is getting a simultaneous triple injection of chemotherapy called Erwinia (sounds like a hypothetical middle-class London suburb in a David Lodge novel) administered by Katelin and the two Lindseys (Lindsey K and Lindsey O).  No complaints from Harry on this one, and thankfully, no reaction - a real contrast to the Pegasparaginase which gave him a horrible allergic reaction the other day. 

Other visitors today included Uncle Jeffrey and our friend Tova Jaffe, who shared her experiences being a cancer patient at age 16 with Harry.

On the prayer front, the Catholics have greatly surpassed the combined Protestant denominations and are settling into second place behind the Jews:  our neighbors, the Ferrells, arranged for a mass to be said for Harry at Georgetown, and our old friends, the Devines, have asked Jay's uncle, Monsignor Malone, "to storm the heavens" on Harry's behalf.  

Special thanks to Mindy Sosland for taking Raina shopping in advance of Raina's departure for her State Department fellowship in Tajikistan that starts later this week, and to Adina Kanefield for driving Eden to Children's from JPDS.

Weekend Report

First off, big thanks to Nanci Bramson for driving Eden everywhere this week!  From playdates to bat mitzvah parties, Nanci has really done it all.

Last night, nurses were scared as Harry's dystolic blood pressure dropped to the 30s; however, this reading actually showed that he was actually in peak condition as athletic people tend to have lower numbers, and their bodies get the blood where it needs to go with greater efficiency.

Dr. Eugene Hwang has been in call this weekend.  He and Harry really hit it off.  Unfortunately he specializes in brain tumors (damn!).  He spent the majority of this morning's rounds chatting with Harry about DC biking because he is making the transition from mountain biking to road.

Today, Harry had five visitors from school.  In the morning, Sofia with an F and Maya, his friends from Chinese class, came and hung out with him.  The girls also watched Harry bond with his PCT, who has similar rheumatoid issues, as they discussed the pain and treatment plans.  Once Harry's doctors showed up, these girls, like everyone else, went to the Ronald McDonald Center.  (We seem to use the lounge more than anyone else. We Weinsteins now feel guilty that we almost never go to McDonald's, except on the rare occasions when we're in Israel or really thirsty and can't find a nearby Starbucks.)

In the afternoon, his school friends Sophia spelled PH, Maddie, and Milan all worked on a complicated Lego structure with Harry.  Every time they almost got it, something just had to go wrong.  Nevertheless, they had a great time laughing about the whole thing.

Dr. Sandy Burnham, Harry's rheumatologist from CHOP, drove down from Philly on a Sunday for a visit. The two shared pastrami sandwiches and discussed medical breakthroughs from different perspectives -- Sandy from the medical side and Harry from the impact on investing.  Anyone who is Facebook friends with Harry knows how crazy he is about Inovio Pharmaceuticals.

The day ended with a taco bar from Lauren Strauss and a training session with Coach Frank of Rock Creek Velo.  Even in the hospital, Frank won't let Harry skip practice.  Frank fit the bike and tried to sync the Wahoo kickr to an iPad.  Harry wanted do threshold training and asked Frank to investigate medical journal articles citing interval training and chemotherapy: the student instructs the master.

Unfortunately, Amy has to be in Chicago Monday and Milwaukee Tuesday.  Ken and Pop Pop will be overseeing things those days.  A huge shout-out to our star nurse team yesterday and today, Katelyn and Tammy.

Shavua tov

Our Shabbat got off to a better start compared to last week's inedible New York Pizza after seven hours in the ER. This week, brisket chef extraordinaire Leonard Chain brought over the good china for a full Shabbat dinner featuring cocktails by Jackie Eyl!  It was a touch of normalcy to have Shabbat with friends.

Thanks to Ken's Aunt Marilyn, we now have some Zoroastrian help.  Her friend, a Zoroastrian named Persi Kanga, is saying a prayer that in all honesty sounds an awful lot like Hebrew!  Shintos, we are still waiting for that sacrifice. And Presbyterians, Mormons, and Rastafarians, it's time to step up!  We're keeping a list. And checking it twice.  

Saturday started with a visit from school friends August, Ned, Ben, and Christian (sponsored by Alison's cookies).   Next was a visit from the Skelsey-Jia reunion tour.

Pop Pop came in from Florida and found his way to CNMC thanks to the best driving service in DC: Helaine's Hack Service.  (Who knew that a former Deputy Associate Attorney General of the US, from the Obama administration, no less, had such skills?)   He will be in town this week to help out as Amy needs to work Monday & Tuesday, and Raina leaves for Tajikistan.  Aunt Lisa, Aunt Jill, Uncle Matt, cousin Owen, and cousin Jack all came in as well for a Kauffman reunion.  But Harry was not feeling well, and more time was spent in the Ronald McDonald Lounge than in his room.  The hospital has since renamed it the Harry Weinstein Family Lounge as more of Harry's visitors made themselves at home.  Owen and Matt at least had the chance to detour to Horace & Dickey's and Dangerously Delicious.

Harry started a second day of chemo but had an allergic reaction.  The medication was stopped and Benadryl was administered.  Most of the day was spent sleeping it off.

Dinner was Harry's favorite spicy (stinky) Chinese food from Great Wall of Szechuan delivered by the Neufelds who braved the traffic stoppages due to the Gay Pride Parade!  For those of you not in DC, every street in any part of habitable DC was closed for parade partying.  Driving through it was like picking up Chinese on Bourbon Street during Mardi Gras but without the beads.

And, after dinner, Harry was back on the bike for the first time since his diagnosis!  Thanks to the unbelievable generosity of Jeremy Fand and his riding group in Westchester, Harry has an incredible Wahoo Kickr bike trainer for his recovery.

Here's Harry taking a post-Shabbat ride:

Lice or Cancer?

As we enter the weekend, and turn to Shabbat, we look at religion.  Many prayer services have been dedicated to Harry's recovery. We mentioned several Jewish & Catholic services this week, and have a fourth Shavuot learning session to report, this time in Kemp Mill.  Our friend Robert Chartener felt the Episcopalians should not be outdone, so, as a trustee of the National Cathedral Foundation, he contacted the Dean of the National Cathedral to include Harry in prayers at the Cathedral.  Harry will also be named in prayers at Trinity Episcopal Church in Concord, MA this week, thanks to Robert.  We are now looking for Shinto sacrifices and Zoroastrian offerings to cover our bases.   

Harry slept in until 11:00 AM, and shortly thereafter, his first visitors arrived. Two friends from school, Victor and Abass, came in time to attend a Hope for Henry event with Harry. They got to meet the girls from the DC Spirit, Washington's soccer team!

Ms. Lanpher, Harry's English teacher also paid a visit.  Ms. Lanpher was unlucky enough to have both Harry and Raina in sequential years.

Next, Harry's friends from Chinese class, Danny and Abby, came and watched "Ali G" with Harry.  Abby, seamstress extraordinaire, promised to make Harry a hat.

But the biggest thing was the support from the JPDS crew.  Harry's most important visit today came from John Cullen, the hairdresser, and Harry's JPDS friends, Jacob, Bennett, Alan, Aaron, and Bryan.  The boys decided to shave their own heads in solidarity in solidarity with Harry.  Harry asked John if he could get the "distinguished, sexy soccer player" look, and he definitely did.  The boys then discussed whether they should shave other bodily hair together.  Alan suggested they all get Brazilians.  With shaved heads, they wondered: do they look more Israeli or Russian?

Amy asked Nanci whether she would stay in the room when Bennett shaved, to which Nancy replied: "I've already shaved him when he had lice."  So if anyone asks Harry has lice, not cancer.  Shhh!

Harry announced that he looked like Aang from Avatar: The Last Airbender, which greatly confused Ken.  "What's an Airbender? It's impossible to bend air!"

The medical highlight was that the BONE  MARROW test came back NEGATIVE!  There is no cancer in the marrow, meaning that we are in an early stage with no leukemia.  Ever think you'd be happy just to have lymphoma? So here's the great (or as great as cancer news can be): only one malignant tumor and nothing in the spinal fluid or marrow.  Yay, kind of?

Party Tricks

A quick Shavout update for the last two days.  While I promise brevity, a lot went on:

On Wednesday, Harry had three procedures:
  1. A double bone aspiration to see if the cancer was in the bone marrow (which would make this a full blown leukemia). We are still waiting for results,
  2.  Installation of a central line - this is a port into the chest through which he will receive chemo.  This replaces an arm IV.  All fluids now go through this central line.
  3.  A spinal tap to see if cancer cells are present in the spinal fluid: the answer is no, they were not.  Again, this is great news.  The less it spreads the better.

In addition, he received chemo directly into the spine while under anesthesia.  He later received his first chemo through the IV as he entertained friends.  This is called "party trick chemo" as the chemo goes in red -- and can come out of you red as well.

Wednesday night, the chemo effects kicked in but by Thursday afternoon they were a full force hurricane.   Think Katrina but in your body combined with the pain of a double aspiration right where your initial disease, ankylosing spondylitis, is headquartered.  Harry was tough, refusing pain meds (I'm not afraid of addiction, just aware if it.). Finally a morphine trip was inserted against the patient's wishes but answering his parents prayers for relief.

While we have started chemo, we are still in touch with many biotech friends and are debating joining a clinical trial for SL401 which has had success with adults.  A place will be reserved for Harry in the clinical trial, should he choose.

FROM THE BEGINNING

From the beginning

Many have asked how we found out....

Three weeks ago on Friday, May 16, I noticed a bruise on Harry's arm.  It looked like any bruise you see on your child.  Especially boys that are often out, running about.  He did not recall falling, getting hit, bumping into something, leaning too hard, walking into a tree, getting a bro punch, or any other reason that he would have a bruise with a lump underneath.  He said it had been there but just gotten bigger. Again, no mom would think twice about it.  

But Harry is on humira for ankylosing spondylitis - an autoimmune condition of the spine and sacroiliac joint. (Five years ago he was in the hospital with unknown pain.  It took almost a year to diagnose.). Humira has side effects, so I made a mental note to check out.  But mostly I thought I needed to have it looked at as Harry was leaving on a bike trip in June for 3 weeks.  If it had gotten bigger, I wanted to make certain it would not give him problems on the trip.

The next night, Saturday, we had family movie night.  And I selected "Terms of Endearment."  Really.  I only chose it to show Raina that there are crazier mothers than her own.  During the film, Debra Winger is told her cyst is malignant.  At that point Harry said, "I have a cyst.  Think mine is malignant?" To which I replied "Shut up Harry.  Don't be such a drama queen."

Monday we went to our pediatrician.  She thought it was most likely a lipoma (benign cyst) and should be removed.  But before sending us to the surgeon she suggested an MRI which would be needed for the surgeon anyway.  The next day, Tuesday, we got the MRI.  Wednesday, we were told it was inconclusive and a biopsy was needed.  I did not freak, because I assumed it was ok.

We were scheduled for a regular appointment at CHOP rheumatology the next day, Thursday.  I called our rheumatologist and told him about the situation.  As a possible side effect of Humira is lymphoma, I asked if we should schedule the biopsy for this visit.  But he thought it best to do it in DC.  At the exam, all looked good.  His blood levels and all other tested functions were completely normal.  Completely.  Not even vitamin deficient. The radiologist at CHOP looked at the MRI and agreed a biopsy was needed.  

I called our patron saint of all medicine, Dr. Laura Tosi, to ask if she could do the biopsy.  She said she did not do that but would get us in to the best person she knew.  I assumed it was at Children's.  It turned out she booked us at Washington Cancer Institute.  She got us in for the next day the doctor, Robert Henshaw, M.D., was in, Tuesday, May 27th.  We saw him that morning and he biopsied Harry.  We expected the results on Friday.

But on the next day, Wednesday, which was also Harry's 15th birthday, Dr. Henshaw called and asked us to come back for blood work.  Remember the doctor, not his nurse or the front desk, but the doctor called. I told him Harry had his blood done five days earlier at CHOP and all looked good.   He called up and verified the numbers.  But two hours later I received a call from his office asking us to come in the next day.   They asked us to come in.  It had to be bad.  But I figured a sarcoma.  A  contained sarcoma.  And treatment was easy.  Maybe he could still go on the bike trip.  

We could never have anticipated what he would say.  "Either a lymphoma or leukemia.  We are not certain and you will need to go to Children's for a bone aspiration which we will schedule for Tuesday."  I had prepared Harry for a sarcoma but not a full blown cancer.   Sarcomas can be removed and need a little radiation, not chemo.

The next morning, Friday, May 30th, Harry went to school and took his math final.  Like any other day.  He hung out with his friend Casey, and asked me to pick him up around 2 p.m.  I stopped at the market with Eden.  I cannot recall which aisle I was in, but my cart was full when the phone rang.  The pathology report had come in and it was a rare cancer no one had heard of - blastic plasmacytoid dendritic cell neoplasm.  I was told to pack an overnight bag and come to the emergency room at Children's National.  Harry needed to be admitted ASAP.  And here we are......

Radioactive Underwear

It wasn't Valentine's Day, but Harry did receive underwear from a girl!  With limited time for us to do laundry, Mayim Lehrich arrived with boxers: flowers, flags, palm trees.

Harry's friend Alfred Moses, who just returned from a long trip to Israel, came by to visit, as did Harry's uncle, Michael Solomon.

Gil Rosen stopped by with his special kale shake to cure any ailment, and the Donvans have allowed hot meals by bringing a microwave.  And thanks to the Altshuls we are swimming in water - so hold off on bring more for a bit.

Leon Wieseltier, who has been extraordinarily helpful, brought Harry a huge stack of classic movies to watch as he begins chemo. 

We were all tested to see if we would be a marrow match.  A transplant is sometimes necessary and we were told to test immediately rather than wait till it became necessary.

Next it was off to the PT Scan or, as my phone autocorrects it "Pets can."  The scan caused Harry to become radioactive temporarily.  And as Harry said not like Peter Parker who was bit by a spider but like Hulk who was actually was transformed by radiation from the mild Bruce Banner to the large green superhero.  Even entering the machine, he cracked a smile. As he was radioactive he was not allowed contact (even his parents had to keep their distance) and visitation was canceled :(.

But the results were worth it.  Nothing new lit up!  The PT scan only showed the original tumor - meaning he seems clean everywhere else.  This is huge!  Tomorrow, Harry has the bone marrow aspiration (to see if it has turned to leukemia), a spinal tap and the installation of a central line.  We may need to rearrange visitors as we will not know the timing till 7 am.  

Harry starts ALL chemo tomorrow and the prognosis is very good.  And even better: Harry hates the tone of this blog and plans a takeover in the near future featuring his snarky humour.