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How is Ari Doing?
Rosh Hashana update (September 6)
To say its been a tumultuous year would be an understatement.
But to say it has not been a spiritual year and one filled with intense lessons
that heretofore our family and friends had never even begun to experience, and
thus one we will have to keep with us, would be untrue. So going into Rosh
HaShana 5763, what message can we hope to gain from both the lessons of this
past year and the desires of this upcoming year?
September 6 Update
August 23rd update
It has been 2 weeks since our last update and we have gotten
such beautiful responses and such caring remarks, but above all so many "how is
Ari doing" questions, that as difficult as it is to step back from the
minute-to-minute care that he is receiving to write these updates, it is, we are
coming to learn, so much more scary for you all not to know what is going on. So
here goes. August 23rd Update
August 9 update
Thoughts, news, and an uplifting story of the power of prayer.
August 9th Update
No news is good news (July 29)
Ari watches and plays a little baseball, spends some time at
camp, and handles treatment like a champ. Read all about it in David's
July 29th Update
Ari's latest MRI Results (July 12)
Yesterday, they
performed Ari's first MRI since 1)the Gamma Knife procedure and 2)his starting
his new chemo and, thank G-d, no new lesions appeared and the tumor has
apparently shrunk. While this does not mean Ari is cured (we will continue to do
monthly MRI's to monitor his progress and pray for such), it does mean that for
this day, this Shabbat, this week, these nine days and three weeks and for this
Tisha B'av I will have many tears. I guess the tears will be a combination of
sadness for all our losses and of those not yet dried tears for Chaviva, along
with the tears of joy (may we continue to hear such news) surrounding Ari, and
finally some tears of optimism...a potent combination. Read more of this
update in David's letter The Art of Tisha b'Av.
Ari takes in a ballgame! (June 27th)
Yesterday, Ari went to "the Hutch" (http://www.fhcrc.org/) in order to
harvest his stem cells. His counts were very high, the collection yielded 4
million cells and because 5 million is the magic number we will be going in
again today for about 2 hours. Ari will be glad when it's over. In order to make
the stem cells multiply like crazy he is given nightly injections (thanks Rick)
that are extremely painful. It will be much nicer not having to do that.
After the aphoresis (procedure of collecting stem cells), we met the rest of the
family (sans Mayer) for lunch at the Bamboo Garden. On the way home Ari decided
he wanted to ride his bike around the loop. He called some friends who were
willing and wanted to go with him. It was a beautiful but hot day (for Seattle)…
but he did just fine.
Then his big plans of front row Diamond seats at the Mariners game was almost
thwarted. When you do any IV treatments (he's still on IV antibiotics), the Port
- A - Cath (http://www.tirgan.com/portacat.htm) stays accessed. It needs to be
carefully protected in order to avoid contamination that allows bacteria to get
into the port. Ari took a shower and forgot to put the protective covering over
the port and it got wet.
An hour before game time we called to Children's to see what we needed to do.
Turns out he needed to go in to have the dressing changes. Ari's good buddy, Mr
A. (with children and grandchildren of his own) who had arranged for the great
tickets said, "no problem, we swing by the hospital and then we will go to the
game". Greatly relieved, Ari took his dinner in the car and off they went.
What made the game so special, besides being able to see Ari and Mr. A. behind
home plate (on TV) when batters were batting, was that earlier in the day David
contacted the M's PR department to ask them if there was anything special they
could do for Ari. He told them not to feel pressured to do anything because he
wouldn't be telling Ari what he had done. He did, however, tell them that Ari's
favorite player was Charles Gipson and that was all.
When Ari arrived (late because of the hospital visit), an usher was watching for
his arrival. They gave him an M's hat (which was good because Ari was wearing
his A's hat, the rival of the night. He wears that hat because it fits the best
of all his millions of hats), a few Mariners magazines and a signed ball from
Gipson. The inscription to Ari reads, "To Ari- Stay Strong & Dream! Charles
Gipson". During the game, Ari was calling to Charles and waving the ball.
Charles responded "after the game" thinking Ari wanted him to sign the ball.
After the game Charles came over thinking he was going to sign the ball, but
then he recognized (without reading it) that he had signed it earlier and he
said, "You must be Ari". He gave him a big hug and told him to wait a second. He
disappeared into the dugout and brought out one of his bats and gave it to Ari.
Just how thrilled do you think Ari was? Mr. A was also tickled that he was able
to provide an event so special for Ari.
Updated June 26
Last Friday, Ari’s new friend, Steve Kelley, the Seattle Times sports
columnist, invited Ari and his two friends Isaac and Jason to sit it on a
session of the Sports Editors’ convention being held in downtown Seattle. The
boys were excited to meet some of their favorite sportscasters that Steve
assured them would be there. They had a great time.
We knew Ari’s blood counts would be down from the chemotherapy he had received
the week before. The docs agreed he could go to the convention, but that we
should come in to have his labs checked after the show. His g (feeding) tube
site was looking red and irritated and they would look at that as well to see if
it was infected.
Isaac and Jason came to the clinic with Ari. When we got his counts back and his
site was looked at, it was decided to admit him to the hospital in order to
receive IV antibiotics to clear up what obviously had become an infection. His g
tube looked worse and was painful. It was not an unexpected event, as any little
irritation can become a big one when the blood counts are so low.
While Ari was not too pleased to be told he had to be in the hospital over
Shabbat, Isaac and Jason declared they were coming too (which certainly lessened
the disappointment). They would stay at Jason’s sister apartment in the U
District and walk over on Saturday) to spend the day with us (after attending
the Chabad House minyan).
Debbie stayed with Ari in the hospital and David stayed nearby at a friend’s
house. At the last minute Rick (who is mentioned all over this site) said he was
coming too, just to make sure Ari was ok. (For those of you who don’t know -
Sabbath observing people do not drive or talk on the phone or use electricity on
the Sabbath unless it is a life- threatening emergency. In order to know how Ari
was doing, all his friends wanted to be at Children’s Hospital)
We actually received the first dose of antibiotics at the clinic and then we
came home for a few hours on Friday afternoon. The decision for Ari to be in the
hospital was to keep a close eye on the infection and make sure it didn’t get
out of control. Luckily, no fever developed and the infection was contained
enough that we were going to be sent home Saturday night. Also his counts had
dramatically improved.
Before we left for the hospital, Rebekah and her mom Carole came over to bring
Ari a special gift from his class. The gift was a handmade quilt-the squares
were made of sports-related themes with the center square being this year’s
class photo transferred onto quilt material. The edging was white and signed by
the students. (A very special thank you to Cheryl G. for her talents in putting
this together!) We brought it to the hospital and began using it immediately.
What a treasure. Also included was his yearbook which his friends had
signed—giving Ari some special reading material.
In order to be sent home, we had to learn how to administer the IV antibiotic
ourselves.
In the mid afternoon on Saturday, we finally got Ari up to take a stroll around
the hospital. The boys went upstairs to sit outside on the patio—it was a
gorgeous day.
Around 5:00 p.m., in walks Jack, Abby and Ben. After davening, they had walked
12 miles (in 3 hours) from our neighborhood to visit Ari! Ari about fell over
when he saw them (not ‘cuz of balance issues!)– they were all so excited and
they seemed to forget we were hanging out in a hospital. Steve Kelley (the
sports writer mentioned above) showed up to visit Ari at the same time. The kids
schmoozed with him for about 4 hours. They asked every sort of question you can
imagine.
Because we didn’t know how long we would be in the hospital, we had brought
plenty of food (most of which had been delivered while we were at the clinic).
The kids had Seudah Shelishit outside on the patio. Ari’s other buddy Zev came
by and hung out as well. All in all, Shabbat in the hospital turned out to be an
unexpected, but beautiful experience. As usual the staff was so very caring and
amazing and cooperative about our religious needs. When we arrived it must have
seemed to them that we were from outer space – not being able to turn lights on
and off, adjust the bed etc. They were respectful, kind and accommodating; it
couldn’t have turned out better. A big thank you to Megan and Diane, our nurses,
for their help.
On Sunday, Ari enjoyed going to the softball games to watch his friends play. He
went to Monday’s Mariners game and plans on going with Mr. A to Tuesday’s game
as well.
He is still receiving his nightly injections to stimulate his stem cell
production. Daily we will be getting blood counts to tell us when to harvest
them. The harvesting will be done at the Hutch, probably today. It is done by
aphoresis-take blood out of one arm running the blood through a machine and
putting the blood back into the body through the other arm. The process might
take one session or a few sessions depending on the number of stem cells
acquired.
One other major event of the past week was that family friends, Moshe and Paula
and Rick gave Ari an amazing gift. We have been very concerned that Ari hasn’t
been getting enough exercise and PT. He had been very tired and the difficulty
of getting around with his ataxia (balance problems) makes it difficult to move
around and get motivated. The path of least resistance is not to push him too
hard—especially after the gamma knife and two days of chemotherapy.
Back to the amazing gift. Ari had expressed an interest in getting training
wheels for his bike. He wanted to feel secure enough that he wouldn’t fall if he
tried to ride. These guys did one better. They found an adult recumbent
3-wheeler that is stunning. The seat is unbelievably padded and the back is
adjustable. It has 21 speeds and hand disc brakes and even a parking brake. It
is so cool. Ari wasn’t home when they brought it. The minute he walked in he
broke out in one of those famous Ari smiles that make it all worthwhile. He kept
riding it in the house. The ride is so smooth.
The next two days Ari rode around the loop at Seward Park with his friends. The
loop is 2 ¼ miles. His plans are to resume riding again after the infection
clears up. The idea of PT, for Ari, is to do something you enjoy that reaps the
same benefits and makes you feel like you have accomplished something “normal”.
We thank our friends for the wonderful gift, but even more importantly, their
love.
We haven’t said it for a while, but we would like to thank everybody who takes
the time to see how we are doing and to offer assistance. We appreciate your
concern, your prayers, your good thoughts. Some of you who are doing research on
our behalf…we can’t begin to thank you enough. The amount of caring that all of
you have shown simply overwhelms us – we can’t help but think that HaShem is
looking out for Ari and will hear our prayers. Thank you everybody for
everything. The battles have thus far been difficult at best, but we remain
confident that our prayers will allow us to win the war.
Updated June 13, 2002
Ari was admitted to Childrens today (Wednesday) for chemo treatments to
prepare him for stem cell harvesting in case he will need them in the future (if
we decide to do high dose chemotherapy, we would need to have healthy stem cells
available. Thus, we are harvesting them now). The plan is that he'll be released
right before Shabbat. So far, he's tolerating the treatment quite well. Since
things are moving rather quickly, we would like to be proactive and plan for
future treatment options at this time. G-d willing, we won't need them!
Updated June 11, 2002
Yesterday, Ari underwent Gamma Knife surgery at Harborview Medical Center.
This therapy is also called
stereotactic
surgery or radiosurgery. It is neuro-surgery without incisions and generally
not even a hospital stay. Three doctors are involved for this type of treatment:
a neural radiologist (our same doc we had for radiation therapy at the UW), a
neurosurgeon and a physicist. There were two nurses in addition who were
wonderful and attended to Ari with very special consideration. (Also there were
residents involved - attaching the frame and observing/assisting during the
whole procedure)
We arrived at Harborview slightly after 6:30 a.m.. First off, they screwed (with
four pins/screws) a $40,000.00 frame to his skull so a) he couldn't move and b)
it could be attached to the machine (luckily we only had to rent the frame, not
buy it!).
After the frame was in place, a special MRI with very thin cross section slices
was done so the doctors could plot the areas that needed to receive the 201
beams of radiation.
Then at approximately 3:00 p.m., they put in Ari's personal CD to listen to (the
theme from The Rock), and they began a 3 hour "surgery", whereby he was radiated
in the areas of the brain already plotted out by the surgeons with what looked
like Xbox game controllers. (They were no doubt video game experts when they
were younger-so parents, don't fret about your kids' hobbies. They may come in
handy!)
At about 6:00 p.m., they finished and his first words were, "Dad, could you get
me a pizza". In teenage parlance, I guess that means he tolerated the procedure
quite well. We received color computer printed MRI imaging sheets of where Ari
was treated. Dr. Jay Douglas (radiologist) told us they treated everything in
the range of the tumors and that everything went very well. Now, only time, and
the MRIs will tell.
When we arrived home he was pretty worn out (mostly from getting up so early).
He ate his pizza and then watched the Mariners game and checked his email with a
few friends. Other than being tired, he had a normal night.
Because the tumors were so fast growing, they want to keep a close eye on them.
We plan on doing an MRI in 2-3 weeks. We'll try to keep you posted.
Thanks for all your support. Thanks for making Sunday nights' Tehillim reading
and class a tremendous success (300+ people). Thanks to Nancy Swigard for
setting it all up. Thanks to Rabbi Kletenik and Shmulik for coordinating the
forum and the speakers. And a big thanks to Rabbi David and the Kollel for
arranging to have Rabbi Goldman speak on such short notice. His talk was most
inspiring about Jews not always having to be governed by the laws of statistics
(Rabbi G- I hope that was an accurate synopsis!).
Best of all, there were friends from all over the city. G-d willing, the entire
community will get together much more frequently and for simchas as well. Such
gatherings are what will do the most to help the Jewish people, and one very
important member of that community…. Mr. Aryeh Noam Chaim.
David & Debbie
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