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.

It's Our Second Home

First, apologies for the absence.  This has been an absolutely exhausting week.

Second, many thanks to everyone who donated platelets and blood!!!! Kara Mazer told me that this was one of the first times the supply at Children's National actually kept up with the demand.  Everyone who donated made a huge difference to children undergoing chemotherapy with low platelets, for sickle cell patients and for children undergoing surgery.  You helped in a huge way!!!  And we thank you.  But most importantly, know how much you have helped.  And Harry might be the next child you help.

Harry's numbers dropped this week between Monday and Wednesday.  There was talk of an transfusion today as his platelet number was almost at 7.  This was expected as at some point, as the patient reaches the nadir.  Harry began literally to shake when the possibility of a transfusion was discussed and he shook for two hours afterwards.  Harry refused to discuss it, but he was afraid of receiving blood from a stranger.  As parents, we're not allowed to store our blood for him as it could disrupt a marrow transplant from a family donor later, if needed.

Harry's numbers this week so far:

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

Unfortunately, these numbers prevent Harry from attending the Best Buddies Leadership Conference in Bloomington, Indiana this weekend.  Harry worked all year to establish a Best Buddies Chapter at his school. (In October, Harry rode in the Best Buddies Challenge, a 100 kilometer bikeathon to raise money for the organization which helps children with developmental disabilities.)  Finally, in May, Harry received approval from Sidwell. It is the first Best Buddies Chapter at a DC school.  

Harry planned on being in Bloomington for the past six months and organized his summer around it. Plus, where was Harry's favorite non-Sacha Baron Cohen movie, "Breaking Away," filmed?  Bloomington.  

As if we had not been spending enough time at CNMC, we got some extra time there this week. Eden arrived home from Camp Ramah New England on Sunday -- and got off the plane at BWI with a limp, a swollen knee and 100.4 fever.  We went from BWI to CNMC ER where, over an eight-hour period, she had a puncture to drain fluid (why should Harry have all the fun?), had blood drawn, and then waited to learn what she had, and if she needed surgery.  Yes, surgery.  

Patient # 2 

Eden's WBC was 77,000.   So, yes, we have one child with only 1,000 white blood cells and another with 77,000.  And, though Eden offered some to Harry, they alas cannot share.  (At 50,000, they will open you up and clean out a bacterial infection, if there is one.)  As we waited to learn whether Eden had a bacterial infection or just (!) plain old Lyme disease, and whether she needed surgery, we recognized the irony.  We also wondered how many hours we might have between hospital appointments for our two children, and whether we might have a double-feature horror story -- two children, simultaneously each with their own IV line in different departments (hey, do we get a sibling discount?).  

And our only healthy child halfway across the world, somewhere in Central Asia,, in a country no one can find on a map.  CNMC sent us home with antibiotics and an assumption of Lyme disease for Eden, which was confirmed three days later. As we departed, Eden commented that this was like our second home. While most of our friends have second homes in the Hamptons, on Massachusetts islands or on the Eastern shore, this depressed me.  But Eden always cheerful commented, at CNMC "they always are happy to see us and treat us so well.  Isn't that like a second home?"  Who can argue.  And we did spend 5 days there this week.  Thanks to Ben Donvan and his mom Ranit Mishori for hanging with Harry while we were in the ER.

Harry, meanwhile, was actually experiencing pain and spent Saturday and Sunday immobile on the sofa.  He could not move for forty-eight hours, and then with crutches only.  (MRI scheduled for Thursday night.) After a magic night of poker with the boys on Monday, he was able to walk.  Poker Mondays cure all! Thanks to the poker crew and Jeanie for hosting.

Harry was lucky to have two special friends this week.  First, Charisse Reiner has adopted him as her only son.  Charisse spent last Thursday with Harry at our home, which allowed me to take care of things outside the house.  And then she volunteered to come to the hospital today so I could donate blood.  And Harry was thrilled,(or as thrilled as a 15 year boy can be spending the day with someone his mother's age) as he has a far more challenging Scrabble competitor than his mother.  Charisse was with Harry when he received the notice about a transfusion.  And, as she is a pulmonologist, she was able to ask all the appropriate questions a regular mom wouldn't think of, such as flossing teeth, clipping nails and a lot of questions involving long latin sounding words.

Harry with his favorite pulmonologist-Scrabble partner, Dr. Charisse Reiner

The second friend reverts back to politics.  We talked about the Democrats, with our love for Tamera Luzzato.  We mentioned the Republicans as Senator McCain called Harry last week.  And before Shabbat last week, the Independent weighed in:  Senator Joseph Lieberman and his wife Hadassah called Harry.  Joe has been a great friend who has watched Harry grow up at Kesher and was there for his bar mitzvah in June 2012.  (The Senator had been in touch with us ever since the diagnosis, but this time, he called Harry directly.)  Both he and Hadassah, who herself has battled cancer, cheered Harry on. Their touching call brought a big smile to Harry.

The pre-Shabbat callers of the week

Chemo, Cousins and John McCain

Calling each stage of chemotherapy a round makes some sense: the patient steps into the ring and battles a one-two punch -- the cancer AND the side effects of treatment -- especially in the early rounds. 

Harry did ok in round one.  When he came out for round two, he started to feel the blows, with a return of the severe nausea he experienced at the outset of chemotherapy -- some days even before Harry received his Ara-C (Cytarabine) home infusion in the afternoon.

Yes, today, you can receive high dose chemotherapy in the comfort of your own home, even while sitting as Harry did, on his couch.  

The infusion was delivered manually over a five-minute period through Harry's port -- the removable external line plugged into the IV that goes right into Harry's vena cava.  



Today's infusion was done by Barbara, the in-home nurse sent by Walgreens Infusion Services -- Walgreens being, yes, the official pharmacist of Children's National.  

Harry's nausea didn't prevent him from doing practice math drills, watching the Argentina-Netherlands World Cup semi-final, or the Tour de France. To keep the food down and remain hydrated, Harry made a concerted effort to avoid "Maury." 

Harry was grateful for the presence of a few friends, and especially happy that his big cousin Jacob was there to spend a few days with him. Jake's presence allowed Amy & Ken to actually work, as he was in charge.  This was not an easy task this week.  But by the time, Jacob was joined by his brother Josh on Friday, Harry was ready to go out again and tour DC - going canoeing,  Toki Underground, even Ben's Chili Bowl and watching lots of late night movies.  The visit made the week much better.  What was really nice was that the three cousins got what Harry calls "bro-sin time."  (Meaning without sisters.)



The Three Bro-sins: Joshua, Harry and Jacob

Notice a family clothing resemblance?

Though the Dems won Ken over last week in Nantucket, there was a big swing back home to the Republican camp this week (who knew Ken could be a swing vote?  Madame Secretary, Mr. Vice President - you are still in the game for Ken.) The 2008 Republican presidential nominee, Sen. John McCain, called Harry to see how he was doing.

McCain noted his deep concern for Harry, indicating how much he felt for Harry in his struggle, how difficult it must be, and how much he admired his courage...."in putting up with all those liberals at Sidwell Friends."  

This is why the Senator is still an SNL favorite.  After the pitch perfect delivery of this joke, which had all of us laughing, the Senator spent ten minutes discussing his own battle with cancer, as well as other lesser issues such as the situation in the Middle East and on the U.S. border.  He invited Harry to visit him in his Senate office before too long, which Harry very much hopes to do.

Special thanks to our friend Dan McKivergan and Brian Rogers for setting this up and bringing a big smile to Harry during a tough week. 

Harry's New Friend

Lastly, we are deeply grateful to everyone who is giving platelets and blood at Children's National.  This effort has made a major difference for the patients.  As a reminder, privacy rules prevent the blood center from letting us know who has donated, so please let us know so we can thank you. 

This week's numbers:
Normal                      Harry 6/18       6/24        7/1         7/8
Hemoglobin  12-16      14.1                13.3.     13.2         13.3
Platelets 150-350        235                 174.       168        170
WBC  5000-10000     8750                 6300.      6200       3900
ANC.    Above 1500.                          4700.      2770     1460

Round Two Commences; London Comes to Washington

Round Two  begins Tuesday.  Harry's short vacation from chemo is officially over. This round is called "consolidation."  (Round One was "induction.") This, it was explained, is because it consolidates the mission of fighting cancer.  (Don't worry, I didn't really understand it either.)  We've been told this round will last eight weeks -- and blood counts will drop after two weeks.  This round will be a more grueling regimen than the first round.

There are several new medications.  First, Harry will be given Cytoxan intravenously which affects the bladder and requires massive IV infusions and drinking lots of water to maintain hydration.  Cytoxan, to boot, has a metallic taste.  Second, he will be given Cytarabine which irritates the eyes and gives flu-like symptoms. And, lastly, Mercaptopurine which causes severe nausea and can lower blood counts.  Harry continues with Erwinia and Vincristine.

There will be spinal taps every week for the first 4 weeks.  This is mostly to inject chemotherapy.   The first day, Dr. Schore told us to expect to be at Children's National for 8-9 hours.  The other days, they expect only four to five hours (meaning 6-7). After his Tuesday appointment, an outpatient nurse will visit the house Wednesday, Thursday and Friday for 'quick' chemo -- administration of Cytarabine.  This saves time and a trip to the hospital.

Do you want to hear more?  Weeks 3 & 4, he needs to be at the hospital four times a week for the triple Erwinia shots as well as spinal taps and infusions.   And those weeks may force Harry to stop biking as bruising is increasing -- not from falling but from rigorous physical activity.  This creates more of a risk for bleeding in the muscles.

Amazingly, Harry handled everything well.  Though he had several headaches, the only nausea he felt was caused by watching Maury Povich: the program featured two sisters who claimed that their babies were fathered by the same man, their cousin, making their offspring simultaneously cousins and half-siblings.  (A paternity test proved one sister wrong to her strong dismay, no less.) 

The long day ended with a visit from Ken's longtime friend, Chris Masek.  Ken and Chris were in graduate school at Sciences Po in the mid-1980s and have been close ever since.  Chris, who is French and lives in London, came especially to Washington to see Harry and Ken.  All of us were deeply touched.

We had planned to stay at the Maseks' home in London in part to watch the start of the Tour de France which opened last week in England to record crowds.  Though Harry wasn't able to see the Tour in person, Chris brought a bit of London to Harry with two major surprises: a 2014 "maillot jaune," the jersey worn by the Tour champion as well as the incredibly cool Rapha uniform of Team Sky, which Harry is cheering for on a daily basis. 

The anesthesia takes effect as Harry gets ready for a lumbar puncture

Chris Masek and Harry in his "Mellow Johnny"

Chris and Harry "Sky Team"



The evening ended with a delicious meal from Amy Shenker and the arrival of Harry's cousin, Jacob, from New York.   Jacob, a junior at Binghampton, will hang out with his younger cousin this week.   

A Million Thank Yous Will Never Be Enough, plus How Ken Came to Love the Dems

First, Karen.  My dear friend Karen Kornbluh decided to surprise us with dinner from 2 Amy's on a Wednesday night.  The doctors had just told us that Harry couldn't go to London and was limited essentially to a one-hour flight from DC.  We planned to rent a home on Nantucket, where we have vacationed all but three of the past fifteen years.  Ken casually joked to Karen about whether she knew anyone with a private jet to get us there. (Truth is, Ken's Republican contacts couldn't get us a flight.) We have nothing against commercial carriers -- our main concern was whether we could expose Harry to germs on a big plane. Karen, always in the know, took out her phone and sent an email (because Karen is old school and does not text.)

Karen emailed her friend Tamera Luzzatto, who said she would ask around.  In Washington, this usually means the run-around...it's DOA.  But....on Saturday night, we received an email that things looked good. We still did not think much of this.  But by 6:30 am Sunday morning, Tamera emailed that she had been with pilot friends who may have a spot.  And when Tamera called later that day, she confirmed our spots and told me the friends were wonderful people, progressive and good Democrats.  (Ken feared the ride would be rescinded when they saw his email address.)

Tamera & David visit in Sconset

There is a reason why Tamera is a legendary figure in Washington.  She is not just smart, but a genuinely kind person who reaches out and when given a task (even that of a strange favor) gets the job done.  Both of us feel Tamera should be running this country!  Luzzatto 2016!  (And even though Tamera is the one with the  historical Jewish 'roots' [only through marriage]  when you think of David, one word comes to mind - Mensch!).   By 11 am Sunday, I heard from Tamera's pilot friend Stephanie Cooper Greenberg. 

When Stephanie and I spoke the next day, she was so gracious that she made me feel that I was doing them the favor of allowing Harry to ride with them.  Stephanie is warm and generous and the kind of a person who puts you totally at ease.  From the moment you meet her, you feel as if you've always known her. Not only did Stephanie give us a flight to Nantucket, she picked us up at the airport, drove us to the house and invited us for dinner the next night. Stephanie, and her husband Irwin, are angels.  They fly wounded veterans as part of the Veterans Airlift Command.   Stephanie trains therapy dogs for children with autism, people with learning disabilities and for oncology patients.  As she told me, these issues have taken precedence over politics.

And dinner at the Greenbergs during Hurricane Arthur was the best part of our trip. Not only did we feel right at home, we met some outstanding individuals, including noted physicians and staff from Johns Hopkins University Medical Center.

Stephanie meeting the plane in ACK

Harry may never go commercial again

Nantucket has always been a special place for us ever since we started visiting fifteen years ago. Ken's dear friend from college, John Marganore, offered us his beautiful home in Sconset the second he heard we were thinking of visiting Nantucket. Unfortunately, the fact John could offer the house meant that he and his family wouldn't be there to spend time with us.

John and Ken have been there for each other in tough times for more than three decades now. John, you may recall, is the biotech CEO who was already owed a million thanks for reaching out to industry colleagues as soon as Harry was diagnosed.  John got Harry into an experimental protocol for a targeted therapy for BPDCN were he to need it.

We are deeply grateful to John, Christine and their daughters Sophie & Lexie, for allowing us stay at their gorgeous place in Sconset. They were traveling in Europe, so here's a photo of a photo of them:

The Maraganores at the Downey Flake

During only four days, we crammed a lot in - Something Natural, Cisco Brewers, Proprietors, Black Eyed Susan's, Boarding House, Juice Bar, Sconset Market, Fat Ladies, The Pond, Pharmacy, shopping 'downtown', Fireworks at Jetties and SURFING...(Downey Flake -- we'll get you next time.)

Harry's friend Casey joined us (a day late as he got stuck in Boston due to the big storm!  Stuck by himself.  At age 15.)  Once Casey arrived, they met up with Sam Panner.  

On the Beach with the Panners. 

  

Platelet Spa

Jessica Nemeth donated today and sent me the best note.  I had to share it.  I only wish there was a photo!

Hi Amy,

Just a note that, based on my experience this morning, I am now referring to the CNMC Blood Donation center as "the platelet spa". The opportunity to recline in a big padded chair, covered with warm blankies, while watching movies and reading magazines for two hours? YES PLEASE. Oh, and the lovely phlebotomists who come around and give you OJ and snacks whenever you want? CERTAINLY.

I signed up again for next month, and will continue to do so. Tell everyone to come join me at the spa!

Hope you are having a great vacation,

Jessica

So please contact Kara Mazer of CNMC.    kmazer@childrensnational.org.  Her number is 202-476-6524. Kaea can answer questions, schedule appointments, and let you know if you are allowed to donate.  And thanks, Jessica!  Next time, please send a photo.

And Round 1 concludes

As of Wednesday, we are done Round One.

Tuesday, Harry had his last chemo of round one.  And it was a lumbar puncture (a spinal tap).   To most people, this sounds scary.  He had to be put under anesthesia.  It's the spine.  But, actually, it's the waiting that gets you.  You're told not to eat after midnight.  You have a 9 a.m. slot.  Somehow that 9 a.m. turns into noon.  And you become a Snickers commercial ("You're not you when you're hungry."). Two-hour appointments become six hours.

Harry, always proud to be in good shape, had his heart rate at 44.  He asked the nurse doing his vitals if she had seen patients with lower numbers.  He meant more athletic.  The unnamed nurse replied, "well yes, I've seen people dying.  So that would be 0."   (Hey, we call it malignant humour for a reason.)

This week was especially disturbing for Harry.  To those who know him, he has cared about two things regarding his appearance - his hair, which since age three he has worn shaggy to super-long.  And his fitness routine and great conditioning which the steroids have replaced with a puffiness.  It has been difficult for him to recognize himself in the mirror.

Wednesday, Harry had another PT scan to see how the chemo is working.  This is the scan that causes you to become radioactive.  Harry is injected with a big metal needle with isotopes.

And, then, we are not allowed within 4 inches of him and supposedly limited contact of only 2-6 hours during the next 18 hours.  I can forego hugs but will take the chances on the timing.   After another fast for this scan -- hey, it is Ramadan -- he enjoyed a breakfast of mushroom "Reuben," lox Benedict (see a pattern here?), plus kale salad, hash browns, grits, mac and cheese -- and, yes,  he ate it all.  High recommendation for Le Coupe on 11th!

The actual discharge papers

This week's numbers:

Normal                      Harry 6/18       6/24        7/1
Hemoglobin  12-16     Harry 14.1         13.3.     13.2
Platelets 150-350       Harry  235          174.       168
WBC  5000-10000    Harry 8750         6300.      6200
ANC.    Above 1500.                             4700.      2770

The new number ANC is absolute neutrophil count which marks the body's ability to fight bacterial infections.   Any number over 1500 is considered normal.  The higher, the better.  Any number under 500 is highest risk for infection and you must be admitted to the hospital.

There is a lot we learned about Round Two.  But I'll save something for next week.  Happy 4th!


We are off to Nantucket for 4 days!!!!