Wednesday, February 27, 2008


Hi everyone,
First, let me thank you for visiting Jon Jon's website. I just want to update everybody as to Jon Jon's status as of today. He is doing very good so far. He has been done with his chemo and radiation since February 1st and seems to be back to himself as far as his stamina and energy. He is down to 1/4 mg of the Decadron in the a.m. and a 1/4 mg. in the p.m. so hopefully if he tolerates it as well as he has been he should be off of it within a couple of weeks. He will be put on a different type of steroid called Cortef. This is a much milder steroid and it is to assist with some of the physiologic changes that occured while on the Decadron. It should help to reduce his cheeks and abdominal swelling mainly.
He is scheduled for his first post-treatment MRI on March 7th. This is not a diagnostic one, it is just to take a look at everything so far after the tumor was radiated. They expect it to be swollen and nasty looking which is typical for the tumor at this point. His diagnostic MRI will be in mid-April and then we will know much more and be able to make more educated decisions about what we are going to do next.
The main thing is that he is feeling good right now and he has been feeling good for the past month or so. As a matter of fact, he has been in school everyday for the 3 weeks before the February vacation and and has been in this week as well. Like you've all heard me say a hundred times, as long as he feels good we feel good!
We recently took our trip to Florida and spent a couple days in Disney and a day at Universal Studios thanks to our family friend Don Shaver and his church down in Orlando. We had a blast and I'll be posting some pictures from that trip pretty soon. THANK YOU DON!!!
We then went up to St. Augustine and spent a few days with Anne's Aunt Claudia and enjoyed some of the "Old City". Jon Jon and I went to see The World Golf Hall of Fame and got some cool pics there too! We then took a quick 20 minute ride and went up to see the TPC at Sawgrass with it's "world famous" 17th hole with the island green. Jon was bored stiff, but he tolerated my enthusiasm and nerdiness and checked it all out with me. I unfortunately didn't have the 4 hours or the 400 dollars it costs to play the TPC course. I'll wait until Jon Jon gets a bit older and has a better golf game, then he and I can go play there. One day Jon Jon and the girls went to The Alligator Farm while I went golfing. They had a great time there. Anne and Claire got a nice picture with an Albino Alligator in their lap and a big snake around Anne's neck. Jon Jon and Aunt Claudia chickened out and wouldn't get near the snake or gator even though the gators mouth was taped closed. I will put those pics up soon as well. The trip was a much needed vacation after everything we have all been through the previous few months. Thank you Aunt Claudia for bringing us down and having us stay with you!!
Finally, Our entire family would like to thank everyone that arranged and attended and the players that played in the Hockey game against the Buffalo Sabres Alumni last Sunday. We had a total blast and we will never forget the memories that were created that day!! We saw so many people there, that it was very overwhelming for all of us, especially Jon Jon!! We would very much like to thank all of the volunteers that sold tickets, t-shirts, wrist bands and 50/50 tickets for the fundraising effort also!! And last, but not least, Thank you to the Town staff that worked at Lincoln Arena that night, you folks did a fantastic job keeping things organized with such a large crowd of people and the ice was in great shape for the skate!!
As for the game itself, The Sabres players were so kind to Jon Jon, especially Ric Seiling, Grant Ledyard and of all people Rob Ray, who was able to coax Jon Jon out on to the ice to do the ceremonial face off with an awesome original Sabres jersey!! It had "CINELLI" on the back and his favorite player Ryan Miller's "30" on it. I'm afraid to see what Rob would've done to him had the jersey not worked. Unfortunately the Sabres Alum weren't as kind to our hockey team. I'd call it a good old shellacking, but everyone had a blast out there.
Actually, once Jon Jon got out there and did the face off he relaxed and had a wonderful time on the bench with his cousin, Connor. The two of them had a great time harrassing our Police Team and reminding us how terrible we were. At one point our team had finally scored a goal and Jon Jon stated that the score board operator must've messed up because there is a "1" on the scoreboard for us. Oh Yeah, he was really funny...well, not really.
We just really appreciate everyone that came out to support us. It was also very nice to see 2 of our new friends we made at Roswell last month, Dr. Killian Salerno and one of our radiation therapists Patty and her son who I understand is a pretty good hockey player in his own right. He has offered to take Jon Jon out on the ice to teach him how to play hockey on a few occasions. Hopefully we'll get to take him up on it before golf season begins!
That's about all the update on Jon Jon's condition that I have! We will keep all of you informed on the results of his MRI's, as well as his progress. In the mean time keep your good thoughts and prayers coming for him!! Thank you!!!

Jon, Anne, Jon Jon, and Claire-bear