Chase's First Day of School Went Well

Chase got to attend his kindergarten class for the first time today – just for an hour this morning to get acquainted with the class and the program. Everything went well, but he was ready to go at the end of the hour; hopefully, after a couple more days like this, he’ll want to stay longer and the transition will be easy for everyone to manage. He didn’t seem too bothered by wearing the backpack, although he certainly got a lot of puzzled faces from the other kindergartners. We’re not sure how he explained it, but they seem to be accepting (the teachers must’ve done a good job helping his classmates prepare). We were also requested to write a letter to the parents explaining the issue and conveying how we would like it to be referred to in discussions – most likely as a “condition” of his eye that is being treated through this medicine, just to keep it simple for the kids.

We received some terrible news last night about another patient of the Burzynski Clinic (a 6 yr old boy in the Chicago area) who was diagnosed in May and just passed away suddenly a couple of days ago. We were told by another parent whose been coordinating the Burzynski yahoo patient group and has been very helpful with ongoing insight and advice. Although it seems that his situation was most likely related to other complications (perhaps from the steroids that we’ve been aggressively managing), it was still very concerning and “nerve racking”, to say the least. It really hit home and “lit a fire” under my conviction – we’re so blessed compared to most parents in this situation that stories like this continually remind us of the desperate need out there for a foundation to make a real difference for these patients to navigate this traitorous field. The parent was recently told by our mutual contact about the “natural” methods of inflammation reduction that we’re using and was intending to start their son on them right away. The other unfortunate timely reminder was the critical role that nutrition plays in the overall treatment plan – since none of the doctors along the way stressed this to his parents, they didn’t take aggressive steps to help their son use his own system to fight the tumor off. Needless to say, stories like this lead to sleepless nights, although this doesn’t help us right now (we’ll have to loop back down the road to document and layout the roadmap of the playing field for others to learn from our research, perhaps through a condensed version of this blog).

Anyhow, we’re tying to use all of our energy to keep our chins up and focus on the “prize” – Chase’s clean MRI / PET scan. Speaking of which, we’ve decided not to do a PET scan until the very end (after the MRI’s show significant reduction of the tumor and ideally complete elimination). After talking more with the radiologist, we’ve concluded that the data from the scan won’t really change our strategy in the short term – we’re going full speed ahead to blast this thing from every angle knowing that something (or all of the above) is working anyhow, regardless of the level of activity in the tumor. The MRI clearly shows the lesion is there and is “on the run”. When we need a PET scan at the end of the treatments we’ll get one to demonstrate that there’s no “hypermetabolic” activity at all in the area. In the meantime, it’s like a hurricane (pardon the analogy) that circling around in the water and will eventually hit ground somewhere (i.e. “light up” with activity) unless it is diffused beforehand. Our goal is to attack it from all angles while it’s behaving as a low grade lesion and keep praying that it’s complete wiped out before it has a chance to light up… at this point, there’s no reason to change the strategy until Chase is safely evacuated…

Thanks again for all the prayers and support! We need all the uplifting we can get to stay above the fray – as they say, “there’s nothing to fear but fear itself” and at times that it’s easier said than done. In thee, O Lord, do I put my trust… Bow down thine ear to me; deliver me speedily…I will be glad and rejoice in thy mercy…Make thy face to shine upon thy servent: save me for thy mercies’ sake. Psalm 31


Love,

John & Carol Sammut
Chase & Barbara Ann