LINK: http://www.coldstonecreamery.com/promotions.html
World's Largest Ice Cream Social
Celebrate the 7th Annual World's Largest Ice Cream Social and Support the Make-A-Wish Foundation® with Cold Stone Creamery
Throughout the month of September, Cold Stone Creamery will be selling Make-A-Wish wall stars to benefit the Make-A-Wish Foundation, an organization that grants wishes to children with life-threatening medical conditions. Be sure to visit your local Cold Stone Creamery to try two new flavors, Nutter Butter® and Marshmallow, and the very special “Make-A-Wish Creations” inspired by Jack and Emily, two Wish Children.
Jack's Creation - Marshmallow ice cream with OREO® Cookies, Chocolate Chips and Fudge
Emily's Creation - Nutter Butter® ice cream with White Chocolate Chips, Kit Kat® and Yellow Cake
To cap off this special month, don't miss the 7th Annual World’s Largest Ice Cream Social at participating Cold Stone Creamery locations nationwide, a special night to join together and share the simple pleasures of life with a FREE ice cream and family fun. On September 25th from 5:00 - 8:00PM, guests will be treated to a 3 oz. serving of Jack or Emily's Creation. All donations will benefit the Make-A-Wish Foundation.
Monday, September 22, 2008
Good evening after yet a very long and frustrating day in the medical field, urrgh!! Well today Kevin had an eye dr. appt. as I mentioned he had been getting frequent headaches which might be associated with his eyesight. Well being I was taking Kevin to Dr. Cossari figured I might as well have him look at Alec, now mind you I am changing opthamoligist, to Dr. Kodsi in Great Neck. Well anyway along with my story, Kevin is fine, no glasses needed. On the other hand Dr. Cossari examined Alec, and Alec couldn't answer as fast as he wanted and coupled with that he was falling asleep during the test, thats right very tired. Right away Dr. Cossari is like his vi son is decling, blah, blah, blah. He got Dr. Atlas's office on the phone and spoke with Alyssa, his PA and blah, blah , blah pressure to the optic nerve, ya, da, da, da. Mark stopped by at lunch time freaking out of course and as he waited in the exam room with Alec, in walks Dr. Cossari, didn't even acknowledge Mark or Alec picked up the phone and started talking to someone about writing a resume, what the heck is the matter with this guy.
Needless to say I left there once again disgusted, and now we have to go for a ct scan tomorrow that he probably doesn't even need because of this joker. Well done with him. And of course tonight while tucking Alec in he looked about 20 ft across the room and told Kevin he like his picture it was beautiful. This 8x11.5 felt board picture Kevin colored in? Well thats the story. Alec is suppose to get an MRI tomorrow, excuse me and MRI on Oct. 2 and 3, just his 3 month check up, and now a stupid ctscan tomorrow which he probably doesn't even need. I'll keep you posted.
Please say a special prayer tonight for our friend Jacob in NYC, he is having a really rough bout right now and is expected to go another round of chemo I believe next week.
Hang your gold ribbons high!
Love,
Amy
Needless to say I left there once again disgusted, and now we have to go for a ct scan tomorrow that he probably doesn't even need because of this joker. Well done with him. And of course tonight while tucking Alec in he looked about 20 ft across the room and told Kevin he like his picture it was beautiful. This 8x11.5 felt board picture Kevin colored in? Well thats the story. Alec is suppose to get an MRI tomorrow, excuse me and MRI on Oct. 2 and 3, just his 3 month check up, and now a stupid ctscan tomorrow which he probably doesn't even need. I'll keep you posted.
Please say a special prayer tonight for our friend Jacob in NYC, he is having a really rough bout right now and is expected to go another round of chemo I believe next week.
Hang your gold ribbons high!
Love,
Amy
Sunday, September 21, 2008
Updates :)
Well, Alec just celebrated his 1 yr. birthday on Sept. 19th. That is what they call transplant patients, another birthday. Mark is like well 1 yr under our belt, as we are told 5 yrs is the goal to make and chances of Alec's cancer returning will diminish. Only 4yrs left, thats a car payment, and we know how fast that goes.
It was of course bitter sweet. I get greedy, I question our decision to not get the shunt sooner, always what if's, what if. Mark and I had this conversation today. I sit there and somber when I see Alec's friends, it's hard, he should be running with them, going into second grade and dammit just being a six year old child he shouldn't have to worry about what if I miss a dose of medicine. Mark put Alec to bed the other night, I had stepped out for a bit and he told Mark NO, I need my medicine. Mark told me when I came back.
Decadron update, we tried to wean him down to .25 in the evening, well on day 4 his balance started to be off and he was having a hard time swallowing his food, it was coming out his nose, we had to stop his feeding therapy and just worked more on his oral exercises for his speech. I spoke to Alyssa, Dr. Atlas PA and of course she told us to bump him back up, which I knew, so that night I actually gave him a little stress dose and gave him 1mg instead of .50 and earlier than usual and the next morning back to .50 mg and that night back to .50. He is doing fine, well. His pulse ox keep dropping, he has been on oxygen here and there. I scheduled an appointment with pulmonary through Schneider's. He is also really bothered by his allergies right now and we started up zyrtec. In the past he has needed nebulizer treatments this time of year, so considering his history, time of year and symptoms I am not really to worried. I pop him on the pulse ox machine about 3x a day just to check his saturation and he is usually 95 or 96, which isn't to bad. I have been giving him nasal rinses and giving him saline nebulizer treatments and he appears mor comfortable after that.
As some of you are aware September is pediatric cancer awareness month, I was just on our friend Hannah's blog and ironically enough I was thinking the same thing. Pink, pink, pink, everywhere pink for breast cancer, which please do not misunderstand me I think it's great that so much awareness has been brought about this, as well as autism. But I am sad to not see one gold ribbon on the bumper of any car, supporting pediatric cancer research. I mean, none. I don't understand.
Oh, well back to the decardon saga, Alec does not produce his own steroids, his cortisol level is really low and he can't fight natural inflammation responses, another words he has become steroid dependent. My problem of course is the more I read into the decadron there is also eye damage possibilities, well Alec is legally blind now, how much more damage are we talking. I anxiously await my appointment with endocrinology to see what to do, and his immune function are still suppressed because of it.
I of course have started him on some more supplements to see if I can boost his cortisol and immune functions. Please pray it works without and more drugs.
He continues to work very hard during the day, between pt/ ot/ speech/ resource room, home school, he goes all day.
We received his new walker, thank you Mary from Guardian brain tumor foundation. I have to upload some pictures. It is really neat, he does well in it and it really works him. After 20 min. he gets really tired and wants to come out. His legs are stronger, its balance, balance, balance, that is a huge issue. I try to imagine what it's like to be in his shoes, and I just can't. Somehow this little bumpkin manages to smile and, just be Alec everyday. He has started to converse, I mean sparking little conversations. He basically asks questions, shows you something and says what it is, and that's about it. But he likes playing games, looking at cards, like trading cards, and of course eating.
Well on that note I must run.
Keep heavy prayers for all our friends, Hannah, Danny (spunky), Stanley, Joseph, Tia and all our HEMOC friends.
Love,
Amy
It was of course bitter sweet. I get greedy, I question our decision to not get the shunt sooner, always what if's, what if. Mark and I had this conversation today. I sit there and somber when I see Alec's friends, it's hard, he should be running with them, going into second grade and dammit just being a six year old child he shouldn't have to worry about what if I miss a dose of medicine. Mark put Alec to bed the other night, I had stepped out for a bit and he told Mark NO, I need my medicine. Mark told me when I came back.
Decadron update, we tried to wean him down to .25 in the evening, well on day 4 his balance started to be off and he was having a hard time swallowing his food, it was coming out his nose, we had to stop his feeding therapy and just worked more on his oral exercises for his speech. I spoke to Alyssa, Dr. Atlas PA and of course she told us to bump him back up, which I knew, so that night I actually gave him a little stress dose and gave him 1mg instead of .50 and earlier than usual and the next morning back to .50 mg and that night back to .50. He is doing fine, well. His pulse ox keep dropping, he has been on oxygen here and there. I scheduled an appointment with pulmonary through Schneider's. He is also really bothered by his allergies right now and we started up zyrtec. In the past he has needed nebulizer treatments this time of year, so considering his history, time of year and symptoms I am not really to worried. I pop him on the pulse ox machine about 3x a day just to check his saturation and he is usually 95 or 96, which isn't to bad. I have been giving him nasal rinses and giving him saline nebulizer treatments and he appears mor comfortable after that.
As some of you are aware September is pediatric cancer awareness month, I was just on our friend Hannah's blog and ironically enough I was thinking the same thing. Pink, pink, pink, everywhere pink for breast cancer, which please do not misunderstand me I think it's great that so much awareness has been brought about this, as well as autism. But I am sad to not see one gold ribbon on the bumper of any car, supporting pediatric cancer research. I mean, none. I don't understand.
Oh, well back to the decardon saga, Alec does not produce his own steroids, his cortisol level is really low and he can't fight natural inflammation responses, another words he has become steroid dependent. My problem of course is the more I read into the decadron there is also eye damage possibilities, well Alec is legally blind now, how much more damage are we talking. I anxiously await my appointment with endocrinology to see what to do, and his immune function are still suppressed because of it.
I of course have started him on some more supplements to see if I can boost his cortisol and immune functions. Please pray it works without and more drugs.
He continues to work very hard during the day, between pt/ ot/ speech/ resource room, home school, he goes all day.
We received his new walker, thank you Mary from Guardian brain tumor foundation. I have to upload some pictures. It is really neat, he does well in it and it really works him. After 20 min. he gets really tired and wants to come out. His legs are stronger, its balance, balance, balance, that is a huge issue. I try to imagine what it's like to be in his shoes, and I just can't. Somehow this little bumpkin manages to smile and, just be Alec everyday. He has started to converse, I mean sparking little conversations. He basically asks questions, shows you something and says what it is, and that's about it. But he likes playing games, looking at cards, like trading cards, and of course eating.
Well on that note I must run.
Keep heavy prayers for all our friends, Hannah, Danny (spunky), Stanley, Joseph, Tia and all our HEMOC friends.
Love,
Amy
Thursday, September 4, 2008
Hello Again
Hello all, yes I actually have a minute between baths to drop you a line of update :0) We went for another bike ride, about 40 min. On the back of Alec's bike there is this little trunk and a third strap which he doesn't use and I actually strapped Sean into it and he came for a ride also. It was so funny, I took a picture, I'll try to upload it later. Alec thought it was funny also he was grinning ear to ear.
We had our clinic visit today, all went well, counts continue to rise, although those stinky lymphocytes kind of dragged, I was actually a little disappointed. He was accessed today and did very well with it, they drew a complete immune function on him and crp and vitamin D level. I of course was told I have to get endocrin involved because of decreasing the decadrone, i've been good though, very slow. Anyway they truly are vampires, it was about 8 vials they had to fill. I am hoping his t-cells are up, it takes a few days to get the results back, I'll let you know.
On a depressing side while I was there I ran into a Mom, forgive me but her name escapes me. Her daughter was recently diagnosed with Wilms, I met her during one of Alec's stays in the hospital, Willms is a solid tumor that spread from the kidney to the lungs. Fortunately Wilms is a very curable childhood cancer. While I was there I saw she had 2 blue sheets in her hand, these sheets are given to us to schedule our next appointments, well let me correct myself we are given 1 not 2. I was puzzled and asked her how everything was and she told me her brother, the little girls brother was diagnosed with the same, a peach size tumor found on his kidney. This was only discovered because she questioned her pediatrician to have him checked out, no signs or anything mind you, nothing!! Of course I freaked out in the car, I mean it is bad enough that Kevin has been getting headaches lately, alot. I am waiting for his pediatrician to call me back. Mark told me to calm down he might just need glasses. I mean this is it, once cancer enters your life it's like you can't escape it. All we can do is research, research, research! Luckily I have been able to reach out to so many supporters and look into so many other possible cancer cures or immune boosters outside of prescriptions. The down fall is they are so expensive, it's a shame that insurance doesn't cover it, but there are just some things the gov't can't control and the supplements that Alec is on is one of them. Luckily we are truly blessed to have supporters such as Joey's friends to help us, thank you so much guys!!!
Well I have to run Alec's bath is ready. Keep the faith.
Love,
Amy
We had our clinic visit today, all went well, counts continue to rise, although those stinky lymphocytes kind of dragged, I was actually a little disappointed. He was accessed today and did very well with it, they drew a complete immune function on him and crp and vitamin D level. I of course was told I have to get endocrin involved because of decreasing the decadrone, i've been good though, very slow. Anyway they truly are vampires, it was about 8 vials they had to fill. I am hoping his t-cells are up, it takes a few days to get the results back, I'll let you know.
On a depressing side while I was there I ran into a Mom, forgive me but her name escapes me. Her daughter was recently diagnosed with Wilms, I met her during one of Alec's stays in the hospital, Willms is a solid tumor that spread from the kidney to the lungs. Fortunately Wilms is a very curable childhood cancer. While I was there I saw she had 2 blue sheets in her hand, these sheets are given to us to schedule our next appointments, well let me correct myself we are given 1 not 2. I was puzzled and asked her how everything was and she told me her brother, the little girls brother was diagnosed with the same, a peach size tumor found on his kidney. This was only discovered because she questioned her pediatrician to have him checked out, no signs or anything mind you, nothing!! Of course I freaked out in the car, I mean it is bad enough that Kevin has been getting headaches lately, alot. I am waiting for his pediatrician to call me back. Mark told me to calm down he might just need glasses. I mean this is it, once cancer enters your life it's like you can't escape it. All we can do is research, research, research! Luckily I have been able to reach out to so many supporters and look into so many other possible cancer cures or immune boosters outside of prescriptions. The down fall is they are so expensive, it's a shame that insurance doesn't cover it, but there are just some things the gov't can't control and the supplements that Alec is on is one of them. Luckily we are truly blessed to have supporters such as Joey's friends to help us, thank you so much guys!!!
Well I have to run Alec's bath is ready. Keep the faith.
Love,
Amy
Tuesday, September 2, 2008
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
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
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