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.