Saturday, May 17, 2008

May Update, Things are still good!


Happy Spring to Everyone!

First let me apologize for the long lapse between posts, spring is here and we have been taking advantage of the wonderful weather. Last month we took a 3 day trip up to Toronto to take Jon Jon and Claire to the Zoo and The Ontario Science Center(or I should say Centre). The weather was fantastic and we had a great time. The first day we arrived Jon Jon and I took a ride to The Hockey Hall of Fame and got some cool pics with the actual Stanley Cup and took some pics of our Sabres that are inducted there! If you are even the slightest of a hockey fan I encourage you to take a ride and check it out.
Also, when Jon Jon and I got there we saw a camera crew filming some of the interactive things and people in there. As we were looking at the Wayne Gretzky display an older woman came up to us and asked where we were from. We told her and she asked if we would like to answer some questions on camera she loved the fact we were a father and son enjoying a day at the HHOF together and we were not local tourists. Jon Jon and I agreed not really knowing who she was or where she was from. As it turns out they were from the Ontario Tourism Commision and they were filming a commercial to promote tourism in the city and province, so Jon Jon and I are going to be in a commercial when it gets finished. I'll attach the link to it when they send us the finished product.

Anyway, Jon Jon continues to do well and be a normal happy 6 year old boy. He has been on a 21-day regime of some different oral chemotherapy and he has tolerated them well with almost no side effects other than a little fatigue. He started taking the bus home from school last week and that is another step toward getting back to a normal existence for him.

We go back for the next MRI on June 6th and we are praying that it will be as good or better than the previous one in March. We have been seeing a new eye specialist at Children's by the name of Dr. Awner. He is a very nice gentleman and very good with Jon Jon. It seems that his eye improved slightly so the Dr. is just going to monitor it and schedule the surgery in November. He wants to give it a chance to see how much it will improve on it's own plus he doesn' want to do surgery while Jon Jon is still on chemotherapy. If the vision in his eye starts to deteriorate(it's still 20/25) then they'll schedule the surgery immediately.

Many people have been asking about the status of the trip to the clinic Texas. As of this point we are not planning on making the trip because the tumor has shrunk with the conventional and alternative therapies he has been receiving. As long as the tumor remains small or shrinks we will not make the trip. Also, with the FDA monitoring the clinic so closely, the tumor has to be progressing and his condition has to be worsening before he is eligible for treatment there. There is a local girl we know that also has a type of brain tumor. Her family wanted to take her to the Texas clinic, but she was not accepted because she wasn't considered to be "sick enough" for admission into the treatment. So anyway, Here's to never having to go there!! However, we continue to research for other successful treatments anywhere in the world. Thanks to everyone for their generous gifts to Jon Jon's Journey Trust, we will be able to travel just about anywhere on this planet at a moments notice to get treatment for Jon Jon.

If you haven't seen Jon Jon recently you'd be surprised at how ell he looks. He was taken off of the Decadron and put on a different more mild steroid. His "moon face" swelling dropped considerably as did the swelling on the nape of his neck and his belly shrunk some too. More importantly, he didn't have a return of any headaches like he was suffering just before his diagnosis. This is obviously due to the shrinkage of the tumor.

Oh and on a little side note, he had his very first visit from the Tooth Fairy on Thursday night! He lost his first baby tooth from the lower rack! It happened while he was in lunch and ha came home with it in a cute little blue box that the school nurse, Mrs. Bostaph, gave him. He put it under his pillow that night and the Tooth Fairy took the tooth and folded a 5 dollar bill and stuffed it into his little box. As all of you know, The Tooth Fairy would normally take the little box and the tooth, but Anne helped Jon Jon write a note to the Tooth Fairy asking him to take only the tooth and leave the little box, so the fairy did.

That's about all there is to report at this point. Please keep all of us in your thoughts and prayers, especially Jon Jon. As I've stated many times before, we believe they are working and will continue to. And I promise to be a bit more diligent in posting updates, even if there really isn't anything different to tell. Just to let everyone know he continues to do well. At the very latest, my next post will be shortly after June 6th once we get the results of his MRI. Keep your fingers crossed that it is better than his previous one!!


Thank you for checking in to catch up on Jon Jon's condition! We are forever grateful for your interest and support for Jon Jon during his long journey!


God Bless,

Anne, Jon, Jon Jon, and Claire