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