September- is Childhood Cancer Awareness Gold Ribbons People and Gray for Brain Tumors

First off I have to remind everyone although everyday should be childhood cancer awareness, September is our "designated month" here is a cut and paste of what will be on Friday evening, September 5, 2008.
The networks will donate one hour of primetime for a history-making interactive television special, uniting the nation as we Stand Up To Cancer, including:
Performances by legendary recording artists.
Over 50 of the biggest names in TV, film, sports and music will participate in the live phone bank, answering calls from viewers who want to donate.
Segments on cutting-edge research -- likely to be reported by network news anchors Katie Couric, Charles Gibson, and Brian Williams -- will include intimate dialogue with the renowned scientists who are making the big, potentially life-saving discoveries.
Celebrity performances and participation in special live and filmed pieces designed to educate, inspire and entertain.
http://www.standup2cancer.org

Okay now on the home front, I am afraid to say it, but Alec continues to do amazing!! I have mastered dropping an ng tube every night down pat. He gets his pm meds, sleeps with it, then gets his am meds and I pull it out for the day. Kevin doesn't like to watch, he said it really gross, ha ha.
Alec meds and holistic supplements are as follows:
Decadrone (evil steriod) .50 2x a day, slowly weaning
Acyclovir (antibiotic)
Bactrim (antibiotic)
Norvasc (for high blood pressure)
Celebrex (studies show effective on reducing radiation necrosis)
Robinul (helps his drooling)
Dandilion (natural diuretic, he retains alot of fluid, thanks decadrone)
Ginko, memory support
Whey Protein shake through his ng tube in the am
Calcium
Multivitamin
Selenium
Melatonin
Greens First
Metal Free (metal detox)
Thymus
MonaVie
Flavin7
Garlic
Acetyl l Carnetine
Ashwagandha
Boswellin
Zyflamend
Flaxseed Oil

I hope I'm not forgetting any, but I believe thats it. Most of his supplements I get at this amazing organic store in East Moriches, Wholly Natural. The people there are amazing, so helpful and caring. It's really nice.
Alec rides his bike everyday!! He is more excited that school is starting. Although we are trying to transition him slowly, with his enthusiasm maybe faster than we thought, we'll see though once he gets there and sees all new faces. I put a request in with his school for this starlight para, Tracy :-) Mark and I would like to see assigned with Alec. We'll see, just plead is all we can do.

Alec has his 3 month MRI scheduled for Oct 2 & 3. Please pray for excellent, clean results. That all those hours spent in the hyperbaric chamber has paid off for him. His swallows are very strong and he continues to drink from his sippy cup, with Thicken Up a honey consistency. We are still seeing his swallow therapist in Babylon, he is so excited with how well Alec is doing, he's not the only one of course.

He has a urology appt coming up, still has a hard time urinating, I don't know if it's physical or just a cognitive issue. We have our next clinic visit this Thursday, I can't wait to see his counts. I'll probably ask for a t-cell drawing being his Lymphocytes are up.

It's been pretty quite other than that. I miss talking to our friend Alyssa, :-) It's his PA from the hospital. He misses her too, it's so funny he asked at dinner time when are we going to see my hospital friends, I asked who he said Mr. Rob, Ms. Alyssa and Jan. I hope he doesn't spike a fever to see them sooner.

I can't believe his transplant birthday is coming up, Sept. 19th will be 1 yr to the date he received his harvested stem cells back. A friend of mine asked if I did a time line from the beginning until now, I think alot about the journey Alec has encountered and I am amazed on how this little boy, in this little body, just keeps going. He is such an inspiration I can't even tell you. I was talking to Mark the other night about it, like what does Alec think of all this, and Mark thinks he is just too young to really understand what has happened. It still difficult to watch him struggle to see, he rubs his eyes once in a while, I guess hoping it will clear things up for him. I wish so badly to give him his full-sight back.

Well as always keep the faith.

Love,
Amy