We're back!

I stopped posting after the last blood drive, so I will begin before the next in 2 days.  Here's what Harry has been doing.   Harry was able to complete a year of treatment in only 9 months, making him a chemo over achiever.  So that called for a party at August's house!  August, Dahlia & Raina put together the bash.

Despite appearances there were lots of girls.  Ok maybe not lots but there were girls.

The Chemo Cake!

With a year down, Harry still looking at 2 1/2 more years.  But the schedule has changed.  I will detail that our our next writing.

We actually took a vacation and went to Florida.  We have never taken a vacation that did not include tagging along for Ken's work or staying at a friend's place.  This was a novelty.  Thanks to Ken's friend Jeff Shell, Harry was treated like royalty at Universal Studios with no waiting in any lines and a reserved table at Leaky Cauldron.  Then we headed down to Boca for beach time.

Of course they find the only store in Diagon Alley with Hebrew

BEACH

But of course nothing runs that easy. The day before we left Harry broke his arm playing basketball.  We just don't spend enough time at CNMC. 

February Harry & Casey went to the school Valentine's dance.  

We Got Your Blood

The beautiful bloodmobile bus outside Kesher

Thank you to everyone who came by & contributed, or even tried to contribute, blood on Sunday January 18th!  Our first blood drive help at Kesher Israel was a success with 27 donations.  We had a rough start as in the first 2 hours 9 of our scheduled donors were deemed invalid.  The blood donation has very strict requirements with travel being a major one.  Not since a blood drive at the Peace Corp did they have to turn away so many!  And not just the unusuals (Tajikistan, Uzbekistan, rural Mexico) but also recent winter visits to the Caribbean including Puerto Rico!  They are tough.  But they need to protect every child receiving blood so they take no chances.

Our fabulous CNMC team!

Ben Donvan donates after returning from Chicago!  Windy City is ok

Olivia Jia makes the sacrifice!  And before a college interview!

   Our first acceptable donors were the Wheelers!  Well Margot & Aaron were helper donors, while Jeff did the hard stuff.

Team at work with the Wheeler family!

With so many early donors rejected, we began to email, call, tweet to get new donors to come by.  A good day is 14 donors.  But a good day is Monday-Friday.  The bloodmobile does not usually go out on Sundays.  Having a full staff aboard, we needed to make certain it was worth their Sunday.   We had hoped for 30, but at the end of the day had 27 which was still great!  At times we got so crowded it was like a cocktail party in there.  

For the downside, one neighbor complained.  Several times.  The noise of the generator was too loud he said.  Seriously?  It sounds like a bus idling.  And it is saving lives.  This neighbor actually asked if the generator could be turned off.  Well, sure if you want the blood to spoil as there would be no refrigeration.     

Our next drive is April 27th at Sidwell Friends.  Followed by a return engagement at Kesher on May 3rd.  Thank you again to all the Kesherites & Georgetown neighbors who came out for this!

  

 

Lose 2 lb Over MLK weekend

That's right!  Eat what you want.  No exercise involved. How?  Give blood!  Please donate not just for Harry, but for all children who need blood.  Our synagogue is sponsoring a blood drive next week.

From the Kesher Israel website

MLK Weekend Blood Drive for Children
   

Honor the life and work of Dr. Martin Luther King, Jr., by doing a mitzvah on MLK Weekend!

Kesher Israel will be hosting a blood drive forChildren's National Medical Center in honor of Harry Weinstein on Sunday, January 18. From 9am-2pm, the CNMC bloodmobile will be parked right outside of Kesher, making it easy and convenient for you to give blood and help save a life. 

To make an appointment to donate, click here.  Appointments are required, so please register early!  Another blood drive is scheduled for Sunday, May 3rd.

Snow Day

Gardenfest

I don't know why I let Harry go to school yesterday.  He had spent the weekend with a low grade fever, headaches, neck pain and nausea.  But it was Monday morning, first day back and beginning of exam week.  I should have told him not to worry about exams.  I should have let him sleep till 10.  When I picked him up at 145 for his clinic appointment, he collapsed in the car.  He lay sleeping in the chair in the waiting room for over an hour.  He slept through the exam.  But was awake for chemo.  And beat me in 5 rounds of boggle.

Harry has had a grueling two weeks.  This is considered the toughest part of treatment.  We are still in Round 4, Delayed Intensification.  When medications have the word toxic in the name, you know it won't be easy.  These last 2 weeks he has been on cytoxin, thioguanine, Ara-C, methotraxate, vincrytine & Erwinnia. The Ara-C had nurses coming by 3 days a week during break.  And our dedicated team even came by Christmas Day &  New Year's Day.  So we were home bound during break.  And Erwinnia means 3 days per week at the hemonc clinic.

Harry also had 2 lumbar punctures, a spinal tap where meds go in.  As you may recall, he stopped using any anesthesia for this.  Most patients go to sleep and wake up with it complete.  Harry hates the after effect of anesthesia and has foregone it for the last 3 months.   Last Tuesday, the procedure did not go well.  He usually goes in chatty and comes back ready for lunch.  But last Tuesday he returned pale.  He felt a cold icy rush down his femur.  Something that he never experienced as the pain is usually spinal.  He then passed out and slept deeply, the after trauma deep sleep.  This was my worst day since July.  You think you know it all.  You've adjusted.  This is your new reality.  And then you get scared again.  And worry about the what ifs.

All was not entirely glum.  At the start of break we decided to take a quick weekend away, to Richmond.  Loaded with expert advice from my friend Lora Spiller, we crammed a lot in to make certain we Harry had a small break.  Best Chinese of our lives at Peter Chengs! (coming to Rockville in March) Black Sheep for brunch.  Toured the VMFA and the Museum of the Confederacy.   We even stopped into the Jefferson, saw the stairs used in Gone With The Wind (yes - THE Stairs) and looked at their archives.  Gardenfest - one the the best light displays in the country!  The kids loved it and posted tons of photos on Instagram (the thing they do to signal approval.)  And for those who remember A.V.'s, their son has taken the recipes and opened Edo's Squid.  Probably the best Italian food I have had outside South Philly.  Heading out we drove up Monument Boulevard, and toured Beth Ahabah, a congregation 250 years old, and stopped by Sugar Shack for a last treat.  

The Christmas tree is made of bicycles!

At least today is a snow day.  He's sleeping on the sofa.

  
    

Shabbatsgiving

The cousins at Thanksgiving dinner
(ignore the tree)

Apologies for no updates for two weeks.  I have actually been exhausted.  And something had to go.  But with too many phone calls to check in, and no time to respond - I'm back.  

The reason for the delay is the last two weeks have been none stop hospital time.  Last week Harry was having 5 treatments over 3 days.  In addition to Vincristine and doxyrubicon, he need Erwinnia 3 times a week.  These are 3 shots usually given simultaneously, and then monitored for 2 hours.  The whole process usually takes 41/2 hours.  After school.  So we are there until 630-7 pm.  It is tiring & somewhat tedious as it is mostly waiting.  Waiting in the waiting room.  Waiting for lab results.  And waiting after the medication.     And Harry is expected to being doing his school work so as to keep up.

Durwood, Julia & Megan administering Erwinnia

This week we added two additional appointments so we had a 5 for 5 week.  And Ken was away all week.  Thursday was going up to CHOP for a rheumatoid consult to see Dr. Burnham.  After afterwards getting to see cousin Grace Solomon for dinner.  

But we always try to build a little reward time afterwards which included, Dangerously Delicious Pies, Eammon's chipper, & Bullfrog bagels.  Trust me these are all unbelievable rewards!   

Also it was Thanksgiving.  As Harry had Wednesday & Friday treatments we could not go up to Philadelphia as we always have done. But Philly came to us.  Aunt Lisa, Aunt Jill, Uncle Matt, Owen, Jack & Pop Pop all came for a dinner at Diplomate (its from Philly!)  And the next night when I had time I cooked the traditional Shabbatsgiving.  (Shabbatsgiving is when you usually have to be vegetarian on Thanksgiving because it is not kosher, so on the first Shabbat following you wind up cooking a second Thanksgiving dinner with all trimmings.) 

And the big news - on Sunday Harry will go down to Florida for 4 days with the Chai Lifeline Foundation.  Full coverage coming next week.

Friday brunch with the whole family!
(sorry you can only see Pop Pop's arm)

Delayed Intensification Delayed No More

And his numbers went up!  From 520 to 2000.  So delayed intensification could be delayed no more.  

The new medications include Doxorubicin, which has a cumulative effect.  By week three, which is December 15th, we expect Harry's counts to drop, his hair to fall out, his muscles to be weak -- and Harry will again need transfusions. Of these, the factor that impacts Harry the most will be muscle weakness as it keeps from cycling.  

And the need to exercise will increased to counter the effects of Dexamethadone, a steroid that causes mood swings, anger, and insomnia.  Or just intensifies the basic side effects of being a teenager. 

He will also be on Erwinia three times a week for four weeks.  Which means three visits a week to CNMC for the next month  

There will be two lumbar punctures, hold the anesthesia.  Two full days of Ara C.  And on day 29, two weeks of home care when the nurses come to us.  Why can't they always come?  I have no answer for that.  But we would miss the gang on the 4th floor.  

Other meds include Thioguanine which will also lower his blood counts, and force him to avoid citrus & milk, and Vincristine.  

Round 4 = 6 meds.  And before you think no nausea as it is not mentioned as a side effect, just remember: it is always a side effect.   

Delayed Intensification Delayed Again

chowing down after 

Again on Monday morning we left for the hospital at 730 am.  And Manic Monday was on the radio.  Bad sign.  Both in lyrics, and in girl band.  More of a Go-Go's fan.  After a great double Mitzvah weekend (congratulations to Sami Jinich & Bati Shemtov!)  he was rested, in shape & ready to chemo down.  But to do the first step his ANC must be at 700.  And it came in at 520.  Meaning sushi is fine (and that is the really important part) but no lumbar puncture, which is needed to jump start this round.  Dr. Angiolillo assured me this is quite normal as the marrow is still repairing from the cumulative effects of massive methotraxate last round.
 
Normal                   Harry 6/18  7/21  7/23    8/1     8/11   8/18    8/29     9/11   9/26.      11/10    11/17
Hemoglobin  12-16      14.1           8.7     7.4     7.3    10.6     8.9      6.9       9.8    11.7        13.5   13.6
Platelets 150-350        235             89       65      370   309     169     40         362    369        252    241
WBC  5000-10000     8750           2006   100    640   3390   1930    1850    2580  6940    1740    2170
ANC. Above 1500.                      1150    270       50  1620    880     1210     1148  4990     470    540

Many thanks to Isaac Wolfe for the Mama Mancini's shirt.  Our favorite XM ad, second only to Rosetta Stone (and I do believe owning a new pair of shoes may make me a better person.  With a platform, maybe even a more stable person.)

The meat lovers meatball

   Till Friday when we try again.......