What has Ari Gone Through? (December to Present)

During the beginning of basketball season (Oct 2001), Ari felt that his shot was off and his strength had diminished.  His friends said that he must be having a mental block because they also felt that his shot was off, at least by his standards. (which was strange because Ari has never been known to have a mental block about anything except when it comes to cleaning his room or remembering what day is garbage day). 

Ari has always been known as a “pure shooter.”  The constant refrain heard from the opposing teams’ cheering sections was, “get the shooter”. He understands the game and has the talent to put that understanding into practice.

After some practices this pre-season, he would come home not feeling well. At school he would get headaches, but nothing terrible.  As the practices progressed, we could see he wasn’t feeling well. In early November, he developed a mild case of shingles (h. zoster – related to chicken pox).  We thought that was perhaps why he wasn’t feeling well.  We went to the doctor but nothing was overtly telling us what was going on.

The first scheduled game of the basketball season was on a Saturday night.  That day, we walked to a friend’s house for lunch.  It was extremely noticeable that Ari was having difficulty walking and maintaining his balance.  He also tried to shoot some hoops, but he kept missing them.

To make a long story short, he started the game, tried to play, but was unable to play more than two minutes.  It was very scary.  It was obvious that there was something very seriously wrong with Ari.  A good friend of ours, Susan, whose son was also on the team, and who happens to be a phenomenal doctor at Children’s Hospital, saw the distress Ari was in.  She was able to get us an appointment that Wednesday with a neurologist. 

We visited the neurologist.  He thought that most likely it was an inflammation of the cerebellum.  (The cerebellum is the part of the brain that controls your coordination - that is what makes you walk awkwardly when you are drunk.) An inflammation can occur after a virus—a virus you might not even realized you had. 

From his exam we could see that Ari’s right side was affected.  Just to be sure he recommended an MRI to rule out anything more serious.

The MRI was scheduled for the night of Monday, December 10, 2001. On Tuesday, there were messages to please call the neurologist’s office.  They asked us to come in the afternoon and that it was important to bring Ari.

We saw the MRI and the tumor was obvious.  The impression the doctor had was that it was most likely a benign cerebellar astrocytoma – a tumor usually cured with surgery alone.  He gave us the name of a surgeon at Children’s Hospital that he recommended. 

In somewhat of a daze we made it home.  Before we even got home we called Susan and told her what we had discovered and asked her to check the surgeon out.  She called her good friend, Dr. Russ Geyer, who reassured her that he was part of the same team and that he was as “good as it gets.”  He also told Susan to tell us that his office would call and give us an appointment with both Dr. Geyer and the surgeon, Dr. Ellenbogen for the next day.

Sure enough, Denise the scheduler called us the next morning and we saw both doctors that afternoon.  I remember telling her that I only needed to see the surgeon and that we didn’t need to see an oncologist—she just said they were part of a team and it’s a good idea to see them both.  (Evidently any tumor is considered a cancer—the only question being whether it is malignant or benign).  Ari pushed the doctors to allow him to attend an NCSY Regional in Los Angeles over the winter holiday and Dr. Ellenbogen, to his credit, almost allowed it.  However, Dr. Ellenbogen called shortly thereafter wanting to do the surgery as soon as possible and the only time he could do it in the next month was December 21, 2001. 

The day before the surgery we received a phone call from Starbuck’s headquarters telling us to expect Howard Schultz to come visit Ari at home.  What was that all about?  Ari’s friend, Abby-who has become a basketball enthusiast-had sent an email to Howard Schultz (of Starbucks fame and the owner of the Seattle Super Sonics) telling her of Ari’s situation and requesting that some Sonics visit him in the hospital as they are known to do (Abby had met Mr. Schultz, when he was the guest speaker at the Seattle Hebrew Academy’s graduation when she gave her valedictory address).  She was very persistent in making sure that Ari would get an opportunity to see the Sonics.  Howard Schultz said he wasn’t sure the schedules would coincide, but that maybe he could arrange for someone to visit Ari at home before his surgery.

Both Howard and Sonic Desmond Mason (2001 Slam Dunk contest winner) came and surprised Ari with a visit to our house.  They brought all kinds of Sonics paraphernalia.  Abby came by the house and told Ari she was taking a day off from school.  She was shaking when she asked Desmond to sign her basketball shoes!  Ari was way cool, (he even told Desmond that he needed to tell another player that he needed to work harder).  Howard asked Ari what he thought of the Sonics and Ari told him honestly what he thought.  It was so awesome.  They were both incredibly nice—Ari was grinning the entire day.  For a little while at least, he forgot about what he would be facing the next day.

Even more amazing to us was that Ari’s school, the Northwest Yeshiva High School, had declared a fast day for Ari’s merit.  Not only did students at the school fast, but their siblings around the world, their parents and others who were wanting to help Ari in their own way, did so as well.  People were davening (praying) and saying tehillim (psalms) with such kavanah (intention) that the day will always be memorable.  Our special thanks to Rabbi Fox (the dean) for making the arrangements and finding out how to arrange a fast and it’s tefillah (prayers) properly.

Friday the surgery went great.  We went very early in the morning. They took him into the OR right away.  A minyan had been arranged and the intensive care unit gave us a small conference room for the morning prayers to be recited.  Many friends and relatives waited with us for the duration of the surgery.  We had to move to a larger area as there were so many of us.

Unfortunately, when the surgery was over (after only 4 hours), the doctor called us (the parents) down to meet with him in the conference room.  We were told that the surgery was extremely successful and that the tumor was easily, and entirely, removed.  The problem was that the tumor appeared to be malignant (which the frozen section later confirmed)—a medulloblastoma.  He told us that it was 70-85% curable and that Ari should be able to do anything he would want to do with his life-maybe he would have to work a little harder but not to worry.

We decided to keep this information to ourselves for a few days.  We wanted Ari to recover from the surgery and felt he should be told before telling anybody else.  It was extremely difficult to go and then face a room full of caring people when our hearts were scared and breaking.  Thankfully, it was a December Friday.  Shabbat starts early in Seattle and people began leaving.  We didn’t even tell Ari’s grandparents and brothers because we wanted them to have a good Shabbat since they would all be together.  We were in agony, but felt we were doing the right thing.  One of our dearest friends, Rick, (who is mentioned everywhere on this website and whose idea this site was) who is a pediatric PA and who has cared for our children as a friend (he was involved totally with all of Ari’s symptoms from the beginning—he recognized the seriousness of this right away) stayed with us for Shabbat in the hospital.  We made kiddush and hamotzi and tried to eat dinner.  I tried to rest a little, but was completely drained from the whole ordeal.  I would also be spending the night in the ICU with Ari while David would sleep in the sleeping room provided for the second parent of an ICU patient. 

Shabbat passed, and Ari did amazingly well.  He was moved into a regular room Saturday morning.  He even ate lunch with us.  We had some visitors from the nearby community.  As the Shabbat ended, the phone began ringing, for so many people cared.  Ari wanted to watch the football game with a few friends but was pretty worn out and kind of moody; which the doctor explained was from the steroids he was on. 

On Sunday, the Sonics actually visited Children’s Hospital. (Ari left his room and went downstairs to find the Sonics—its amazing how fast one can recover from neurosurgery!) Desmond Mason came over to Ari and introduced him around.  Ari had his picture taken with Gary Payton which appeared in the Seattle Times on December 25.  Ari also was moved to another room.  It was a great time to be in the hospital.  The hospital was nearly empty and the staff was so great.  Ari nearly had the nurses all to himself.  We can’t thank them enough for the care they showed us. 

The doctor told us on Monday morning that we might as well go home!  Ari was recovering great.  His right side was still weak and he was wobbly, but we were very ready to come home to our own beds!  We arrived home in the afternoon and Ari was quickly surrounded by his caring friends. 

On Tuesday evening we told Ari that we needed to see Dr. Geyer the next day because the tumor was malignant.  Please G-d, none of you will ever have to tell your child such news.  He was pretty shocked and retreated to his room, but only for a short while.  We told him what we knew and that we would get more answers the next day.

The staff at Children’s is amazing.  Dr Geyer and his right hand person, Corrie, have never hurried us or acted like we were a bother.  They have spent countless dozens of hours discussing Ari and his treatment with us.  No detail is too trivial, nor question too infantile, for them. They say the medical world these days has made patients feel like numbers—not so at Children’s; their system and team approach is an ideal that should be followed everywhere.  We are incredibly thankful to be in such competent hands.

This story has gone on for so long with way too much detail.  It’s been cathartic just to write this all down, but now I see it must be too much.  I will summarize the rest of the story to bring you up to date:

  • An MRI of the spine and a spinal tap on Dec 31 showed no evidence of metastatic disease (i.e. cancer that had spread anywhere else)

  • Radiation therapy began January 16 at the University of Washington Medical Center under the direction of Dr. Jay Douglas and Dr. Audrey Tran-with Lenise and Tammy’s capable and comforting assistance

  • 13 treatments were give to the brain and spine

  • 18 treatments to the tumor bed
    (Ari felt pretty lousy during radiation but never complained. He dragged himself out of bed everyday no matter how difficult it was.  The treatment was exhausting.)

  • Ari began six weeks of vincristine (chemotherapy), along with the radiation therapy

  • Two weeks into radiation treatment, we hosted a “haircutting” party for Ari.  His classmates were invited; several of them cut their hair as closely as possible in solidarity with Ari.  A good friend and neighbor, who regularly cuts the Grashin boys’ hair, a darling 18-year-old young woman, shaved her head in solidarity as well (you should have seen the look on Ari’s face when he first saw her!

  • On February 2nd, Ari took a redeye flight from Seattle with his good buddy Steve to attend the Super Bowl in New Orleans.  A wonderful organization called Chai Lifeline gave Ari this trip of a lifetime.  The two left late Saturday night and came home late Monday night in order not to miss more than one day of radiation.  Some of the pictures from that trip are located in the Ari’s Pictures gallery.

  • March 4th  was the final radiation treatment—(Ari received a huge balloon and a certificate from the staff).

  • Purim was celebrated with Ari’s classmates with a private Megilla reading and dinner at Isaac's house.

  • On March 18th, Ari had a G-tube surgically implanted and we stayed overnight in the hospital again. Because Ari has always been thin, and the radiation was nauseating and he hadn’t been eating enough, we implanted the g-tube so Ari would receive proper nutrition without the pressure of having to eat.

  • On March 20th (two days after surgery), we went to California to attend Ari’s Uncle Jay’s wedding to Stacia.

  • Ari spent a few extra days in LA with Mayer—eating and visiting friends-he even went to San Diego for a day.  He also went to the LA Lakers – Cleveland game and sat courtside. 

  • The family gathered for Passover in Palm Springs.

  • Upon returning to Seattle, Ari had his first of what was supposed to be 8 – six week cycles of chemotherapy, involving staying overnight in the hospital to receive CCNU, Cisplatin and Vincristine. (the next two weeks he would receive Vincristine again, then have three weeks to recover before going back to the hospital again).

  • A routine MRI taken on April 19th showed a possible regrowth of tumor in the original site

  • A PET scan also suggested new tumor

  • An MRI on May 14th showed a new spot outside the tumor bed which indicated a recurrence of the medulloblastoma.

  • The prognosis originally was for a 70-80% cure. Unfortunately, when there is a recurrence, with conventional medicine, the doctors don’t talk in terms of cure (We still do).

  • Shavuot, the day most of Ari’s friends found out about the recurrence, we hosted a midnight learning shiur for them at our house.  Close to 50 students from the Northwest Yeshiva High School came to hear a class given by Rabbi Kay of the Seattle Hebrew Academy.

  • Over Memorial Day weekend, Ari attended an NCSY Regional in Los Angeles where he was given a special award for Torah growth.

  • We are currently evaluating the possible treatments our doctor has outlined for Ari.

  • We have searched out promising research. Ari began an artemesia/woodworm Chinese herb remedy May 18.  .

  • He took Pau-d’Arco tea (www.pau-d-arco.com) for a few weeks, and will probably be beginning its use again.

  • We have friends all over the world praying and helping us on Ari’s behalf. We plan on having a city (if not world)-wide learn-a-thon in the summer dedicated to Ari’s recovery.

This website began because the more people know of the situation, someone might know of something or someone we haven’t heard of yet.  Neither we nor the doctors are giving up.

Our goal is to find something, somewhere where treatment- resistant tumors can be destroyed.  If you have ideas, leads, information etc., please review the type of tumor and the history we just told you.  It is important to know the type of tumor and that the blood brain barrier must be breached in order for the treatment to be successful. See the Your Advice/Recommendations section.