Dear Friends and Family-
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.
As always, I so want to start off these letters with "thank G-d, he seems to have turned the corner..." Unfortunately, not yet.
His trip to San Diego was great thanks to his his chaperones/close friends (Isaac, Jason & brother Mayer) and his hosts (Hila, the Silvermans et al.) They went to SeaWorld, the beach, a kosher restaurant, and hung out in great warm weather.
Unfortunately, when he returned, we saw a real downturn in his physical condition. He can barely walk and has difficulty swallowing, his vision declined and he has trouble reading (but loves having the sports section and "Small Miracles" read to him). We had tried to get him into a clinical study in Bethesda at the National Cancer Institute, but because of his deteriorating condition, we couldn't wait the 3 weeks it would take to get him accepted (because he had to be "chemo-free" for 4 weeks before he could start treatments in Bethesda), and instead the doctors here have started him on the main chemotherapy agent involved in the study (Temodar) along with Thalidomide (a drug to help the efficacy of Temodar). He has taken his first round of the chemo, and will continue to take it for 5 days out of the month so long as the tumor growth is abated. The drugs, and the location of the tumor, work in tandem to make Ari a very tired boy. Thus, we have curtailed somewhat the amount of activity around the house. Many of you have called to talk to him. He has great difficulty conversing, so please don't call to speak to himas you probably won't be successful and we don't want you to be disappointed. (was that assertive enough?)
Enough of the negative. A lot of great things happened as well.
We continue to learn how truly special our other children are in dealing with all this. Besides physically being tremendous helps to us, they continue to give us spiritual strength as well. As you can imagine, no decision in the Grashin family gets made anymore without "Ari" considerations playing a role. This could cause some amount of resentment in children of lesser character. As parents, we try our best to normalize their lives. We probably fail miserably, and yet there have been no complaints. (I'm sure we'll get sued in years to come for all their therapists' bills, but what the heck!) Thanks boys!
Mayer and Josh after much soul-searching, have relunctanly decided to at least start college next week at McGill (Montreal) and Brandeis (Boston) respectively. Since you are all family now, you would have been proud of the decision making process they went through in deciding to go. They were so conflicted (and still are). They were, and still are, ready and willing to completely put their lives on hold to help out with Ari. We (mostly their father) told them to go. As our dear friends the Butlers say, "one day at a time". We'll see how it goes. If they need to come back, of course they will (we'll just have to kick out the new tenants...just a joke!). The silver lining to all that has happened lately is the opportunity to watch your kids grow and make the right life decisions. When they are willing to put their brothers well being before their personal happiness, that is a blessing! Let's wish Mayer and Josh well in their new college lives. :)
Ari's grandparents, aunt (and her baby, the famous Noah) came to town and will stay for a few weeks. That put a big smile on all our faces.
Debbie, Beth, Rick and Vivianne continue to tirelessly search out research for any little item that could possibly help Ari. Their love and efforts have to end with a good result.
Finally, Coach Steve surprised Ari with a quick get away from his job in Battle Creek, MI. It couldn't have been easy coming. It was almost impossible leaving. We got more smiles out of him, though, than we've gotten in a while. Thanks Steve!
Finally, Ari was on the front page of the JewishTranscipt today. I enclose the link. Now even more people are going to know how wonderful and special he is. Thats OK, we'll just have to share him with a few more people. The link is: http://www.jewishtranscript.com/news/Community.html
Personally, I'm tired of these depressing eMails from the Grashins. So lets put our collective prayers together and think positive that this New Year should be a new year with a good decree for Aryeh Noam Chaim ben Devorah Chana. A year filled with blessing, both spiritual and material. A Happy and Healthy Year to each and every one of you. Your love is keeping us going!