Dear friends and Ari fans-
I do believe that one of the motivating factors in writing the Ari updates is the enjoyment and warmth we experience in reading your responses. It makes us fell that each and every one of you have "moved in with the Grashins". That's a comfortable feeling, because when we see you, its like seeing family. Thus when you see us smile or you see us cry, we feel much less self-conscious, because you are family and you are feeling and or sharing those very same emotions.
Of course, that exacts a price on you, the reader, as well. We see very clearly that the news effects all of you, because Ari has become your son, your brother, your friend, and its not easy having a "family member" experience so many trials and pains.
But there are a few lessons we have learned from these experiences, and these lessons become clearer and clearer as time passes:
1) Prayers help: But, you ask, Ari doesn't seem any better?! He has additional weakness, double vision, he's tired etc. So how does prayer help? I'll tell you how we think it helps.
We are different people than we were last December when Ari was first diagnosed. We believe this community is a different community. It goes without saying that no one wants their child to be the catalyst for such change (i.e. We would have, and still would, sacrifice ANYTHING in the world-our health, our wealth…anything, for this not to have happened). But now that G-d has seen it fit to happen to Ari, we are proud that Ari has had such an effect on so many THOUSANDS of people throughout the community, the city and quite literally, the world. So prayer has MINIMALLY helped (and it's not so minimal!), in that your prayers have elevated you to a previously unattainable level (not to mention how it has directly helped Ari).
2) Empathy helps: We literally feel YOUR pain and YOUR empathy and it means a lot to us. NOBODY wants to be alone. Not physically, not spiritually. Yes, there are many days when we want to crawl up into a ball and stay in bed all day and not see anybody. But you don't let us and we thank you for that (even when we growl and tell you to go away!). When we are not at minion, you call. When we leave early or skip a social event, you call. When we look down in the dumps, you call. We do not always voice our appreciation for your concern, but we always appreciate it. We may (probably will) slow down on our social commitments because it becomes so incredibly difficult to put on a smile and "shmooze", but we hope you will a) understand and b) check up on us how we are doing (with the understanding that we may occasionally leave the phone off the hook and/or not answer the door.
3) Kindness helps: We find society as a whole and even our community to a lesser extent sometimes veers away from Hillel's teaching: "do unto others what you would want done to you". We have a lot of community members who are hurting right now. Perhaps they have a sick loved one, or they are unemployed, or they just are depressed over life's difficult trials (and we are not talking about the Grashins). We need to reach out to these people. It is easy to talk and help out those on top of the world. But we need to try to reach out to those less fortunate. We must watch what we say to our friends and how we talk about them. Lets try to remove sarcasm and nastiness from our speech and thoughts, and I think we will be surprised how contagious it becomes. There must be merit to Hillel's suggestion. He did, after all, say that it this maxim encompasses the ENTIRE Torah. Let's try it. And let's try it in Ari's merit!
4) Apologies help: We began the month of Elul this week. We blow the shofar each morning to try to bring us to do tshuva (repentance). The Rabbis tell us that one reason repentance works is that the person that repents is not the same person that sinned. Its not so much that the sinner is forgiven, it is that the sinner no longer exists…he is a new person. One important component of tshuva is asking forgiveness from the friends we have wronged.
Hopefully, you are starting to see a theme emerging.
As we started out saying, our little 16 year old son, brother, friend has had a profound effect on all of us. He has quite literally changed us. When we go into Rosh HaShana and Yom Kippur this year, we can say, without reservation, we are not the same people we were last year. We have prayed with all our hearts. We have become more empathetic to those that need us. We have shown more kindness to our friends. We have apologized to those we have wronged. We are not the people we were that sinned during the past year. In summary, we have done tshuva.
Well, true to form, its never easy with the Grashins. You want a paragraph update and they give us a 10 page memo! Sorry, but sometimes the words start flowing. And as we said above, WE ARE FAMILY!
Which brings us to the update itself:
On the last update we didn't tell you that his MRI was scheduled for August 7th (Wednesday). We had enough anxiety for everyone. Today is August 9th and we need to update everyone. Unfortunately, the MRIs were not good and Ari will be facing an uphill battle. The MRI showed progressive disease. There is a new small lesion mid-brain. Because of it's distance from the original tumor, it is not possible to hope that it is an effect of the gamma knife. This is probably the beginnings of another tumor; at the visit we didn't have the radiology report yet.
Our options at this time, according to Dr. Geyer, is to try some other chemotherapy drugs or become involved with some investigational trials/drugs. The investigational trials he offers are not chemo drugs so the side effects aren't as rough (or shouldn't be) as chemo. Dr Geyer always stresses quality of life is the key-and to do chemos that can keep you hospitalized etc is a decision he left to us. The problem with these trials is that there is no proof that they might work on Ari's tumor but then again there is no proof that they won't work. This is what trials are all about. Basically when you become involved in an investigational trial you do it with the altruistic feeling that you are benefiting science and future patients firstly, but, please G-d, Ari as well.
There is not much more to say-other than we are not giving up. We still need your prayers on Ari's behalf. We know that it is all up to G-d in everything that transpires. Your prayers are heard, they just need to be persistent. We believe they help more than anything. I am including an email we received last night. Our last update was dedicated to Mikey Butler in Pittsburgh who has battled cystic fibrosis ferociously his whole life. He recently underwent a lung transplant and hangs onto life with his sheer determination and with the help of lots of prayers in his honor. The last several days, his organs seem to be shutting down and things looked grim. Many of you responded that you added Mikey's name to your tefilla lists. We share this with you, because reading about amazing people in the world gives one hope and they are, as you will see, simply amazing.
MIKEY UPDATE August 7, 2002
It's not supposed to work this way.
Ya want a pound of corned beef - you go to the deli counter and ask for it, and they hand it to you. Ya want change for a dollar - ya ask a few people, and somebody gives it to you. Ya want directions to the library? Easy - just ask.
But, it's not supposed to work that way with G-d.
A bunch of people made a lot of racket up in His office with a simple request, and apparently
G-d said, "Okay- thanks for asking!" (that might be paraphrased a bit)
MIKEY IS BETTER. MIKEY IS REMARKABLY BETTER. Medical people are using words like "miraculous" and "unbelievable" when passing his bed in the ICU!
Mikey woke up yesterday. He was extremely weak, still intibated (on a ventilator) but desperate to communicate, so I brought him his laptop. He wanted to know what had happened, so I wrote him a little "Mikey Update" for MIKEY! It was like, "TUES- NCSY BBQ; WED - ICU; THURS - BP stuck at 50; FRI - heart arrested" , you know- a basic summary. He couldn't believe it! (Unfortunately, he was fascinated by the fact that he 'flat-lined'! Just like Mikey to be disappointed that he can't remember who he might have chatted with 'on the other side'!) Later last night, he typed, "Are there any leftovers from the BBQ - oh wait! I have a tube down my throat!"
Mikey's back. They extibated him today (pulled that tube from his throat). They tried last night, but his heart dropped again and he oxygen level dropped very quickly, so they waited awhile - and it worked!. Mikey's eating - talking - carrying on. Smiling. He's smiling a whole lot.
So, YOU DID IT! Your thoughts and prayers on Mikey's behalf WORKED… because G-d knows the doctors don't have any explanation for this quick turn-around!!!
We're not exactly out of the woods yet: He's still in the ICU. Mikey may have to be re-intibated if he doesn't muster up the strength to cough out the gunk in his lungs from double pnemonia. He's very very weak still. And, his kidneys are pumping out HUGE quantities. Apparently, after almost shutting down, the body hits a re-set switch and the kidneys over-produce. The only problem is that they will either decide to equalize to normal or shut down again. We'll see… And, his infection is still there, but slowly getting better. His pace-maker is still there, but WHO CARES!
He's smiling! He's cracking jokes again! He's ticked off that he can't get on-line in the ICU! HE'S BACK!
Thanks to each and every one of you. As you spend hours and hours and hours in shul this Fall, remember that it was YOUR prayers that had the power to make a difference! Thanks from Mikey and our entire family. And, of course, Thank G-d.
Baruch Hashem Yom Yom,
As you might imagine, it was very inspiring to receive this message last night while we were still reeling from the MRI results. G-d is the miracle worker, please keep beseeching him on Aryeh Noam Chayim ben Devorah Chana and Refael Michael Yitzchak ben Nechama Sara's behalf.
Last night we had a pow-wow to review all our research and present it to Dr. Geyer very soon. We have some studies that show some options we haven't discussed with the doctor. If necessary, we will go to other doctors if necessary. Meanwhile Ari is off the etopocide, which is great, but only because he felt crummy on it. He will continue with the Artemesia and all the supplements. He is planning to go to San Diego to visit friends for a few days next week. His friends have promised to help take care of him. His balance and vision have deteriorated noticeably but that isn't going to stop him. Ya gotta do what ya gotta do!
Enough already. Thank you for all your continued help and prayers. Keep it up because it makes a difference. Shabbat Shalom-