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" ( 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 ( 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