Thank you for all your support regarding these updates. Without it, we
wouldn't be so vigilant about them. Lets hope they continue to improve each
time, and that Ari will be writing them soon!
July 29, 2002
It has been awhile since we have written another update. Time has flown by.
Thanks to HaShem listening to all the prayers and good thoughts for Ari, we
haven't had any major events happen. Lots of activity, but no major happenings
(In this business, nothing major is generally GOOD!). To catch you up, here's
what's been happening:
Ari went to Sephardic Adventure Camp with Rick (who was the camp doc) for two
days in early July. Camp was held near Leavenworth, WA in a beautiful setting.
Luckily, the juice he has each day contains garlic and the millions of
mosquitoes didn't find Ari tasty for a change. He brought his bike to camp and
was able to transport himself around the grounds on it.
He spent some time at Safeco Field. He went with Steve Kelley, the Seattle Times
sports columnist, and his wife to celebrate her birthday-they met Lou Pinella
and got a signed game ball by that night's pitcher, Joel Piniero (thanks Steve!)
We took it easy during the nine days before Tisha B'Av. Ari started on the daily
oral chemotherapy, etopocide. The plan is to use it indefinitely. The schedule
is to take the pills for three weeks straight, followed by one week off. He
seems pretty wiped out these days. We are not sure if it is from the etopocide
or the after effects of the gamma knife.
His balance is somewhat worse right now and he is occasionally experiencing
double vision. These effects are probably from the gamma knife, and were not
totally unexpected. These symptoms can last for a while, as there was swelling
on the brain from the treatment that could take months to recover.
He began taking steroids the last week of July to see if they could reduce the
symptoms he has been experiencing and gain a little appetite. It was his choice
to go on them - as he told the doctor, he just wants to be able to bat. (the
kids play a made up baseball game in our living room which they have named
"Stanley Javier" after the retired Mariners player. When not experiencing the
double vision, Ari can still bat because batting uses the left side more than
the right.)
Ari began physical therapy again. (We stopped when the tumor recurred) It is
good to exercise and move his muscles. He sees a 93-year-old yogi (who was a
paraplegic that healed himself to walk despite the doctors' belief that he
couldn't) for inspiration and positive imaging. We started some
electro-acupuncture treatments to improve his balance. The acupuncturist
recommended we see a specialist in acupuncture and Chinese herbs as well as Qi
Gong.
Since mid June Ari has been religiously taking vitamins and supplements, not
eating red meat or sugar, allowing fresh juice mixed with all kinds of healthy
"stuff" to be given to him through his G tube. He has done all this without
complaint (actually, he has done everything without complaining and very little
questioning). (For those of you who have known Ari over the years, you will
appreciate how dramatic that is!) Dr. Dan Labriola designed the vitamin regimen.
http://www.cancure.org/dr_labriola.htm
We are anxiously awaiting the report from Jeanne Wallace, a Ph.D nutritionist
who has become a specialist in brain tumor support. The report is typically
35-40 pages and is custom tailored to the specific patient. Our hope is for her
to tie together all the complementary treatments we have investigated and/or
tried.
The best thing Debbie has done is taken a leave from her part time job at the
Seattle Hebrew Academy. Our good friend has taken her position on a very
flexible basis. The entire SHA office has been very supportive throughout this
entire ordeal, and we must publicly thank them for all their support.
Earlier in this update it was mentioned that it was a quiet month. Actually
there was one huge event in our lives that deserves to be shouted about. Rabbi
Cohen-Scali of Congregation Ezra Bessaroth arranged a day of learning in order
for Ari to merit a full recovery. A total of nine Rabbis gave divrei Torah
(words of Torah). Many members of the greater community attended (at all times
during the day there were at least 100 participants). The whole event was
special. What an outlet for those that wanted to do something for Ari. We
appreciated every one who attended. The effort it took to come to such a
happening on a beautiful Sunday morning was greatly appreciated and duly noted.
A special thanks to those that told us they couldn't attend but that they would
dedicate their Sunday's study to Ari.
Rabbi Cohen-Scali tried to set up a link to learn with the Chief Rabbis in
Israel. However, because it was the first Sunday after Tisha B'av (and no
weddings were allowed during the previous 3 weeks), the Rabbis were unable to
arrange a convenient time. As an alternative, the two Chief Rabbis were kind
enough to each write a message and fax a bracha (blessing) for Ari's recovery. A
special thank you to Congregation Ezra Bessaroth for hosting the event, Rabbi
Cohen-Scali for making it happen and Rabbis: Benzaquen, Farkash, Greenberg,
Kletenik, Kornfeld, Levine, Levitin and Maimon for their inspiring words of
Torah.
Ari was also happy to see an old friend, telephone chavrusa and former counselor
from camp. "Hanny" lives in Brooklyn and learns in Israel but took off for a
weekend to come and visit Ari and Zach. He was happy just to "hang" with Ari
since Ari didn't have a whole lot of energy to sightsee etc. We really
appreciate Hanny's kindness shown by his visit.
That's it for now. We realize many of you check the website frequently in order
to keep up with what is happening. Please accept our apologies when it takes
awhile sometimes to write it all up. Despite the intense household focus on Ari,
there is a lot happening to the rest of the Grashins as well. We mentioned
Debbie has taken a leave of absence from the Academy, David is looking for a new
job (all suggestions / offers appreciated!), Josh and Mayer are preparing for
college; suffice it to say, as usual, life is not dull around here.
We pray that the next writing will bring forth good news in every way. Kol Tuv.
The Grashins
P.S. Please (continue to) say a bracha for a refuah shlemah for our dear friend
"Mikey" Butler, REFAEL MECHAEL YITZCHAK BEN NECHAMA SARAH. Danny & Nina's (Mikey's
parents) emunah, betachone and sense of humor (not necessarily in that order)
continue to give those that know them the strength to face adversity. Thanks
Danny & Nina. This update is dedicated to Mikey (and we WILL get Mikey and Ari
together!)