Click one at a time over to the left; make sure your volume is turned up. This is one of the supplements I give Alec as I mentioned before, check out this broadcast. I signed up with this company so I can get it for distributor pricing. If anyone is interested let me know and I can do the same for you. I give Alec the Original but I'm going to start giving him the Active, it has the Glucosamine in it, it helps with joint mobility and contrtols inflamation. The Pulse is heart healthy, I'm gonna start taking that one because of my issues.
Other than that everyone is doing well, anxiously getting ready for our road trip. I have an appt. with Alec on June 2nd to check his counts and meet with everyony in brain tumor clinic from oncology to endocrinology and every ology in between :0) We are going on a field trip tomorrow with his school. He is pretty excited to be riding on a bus with his friends. I don't know if I mentioned it before but Alec will be attending East Moriches Elemenatry this summer for a few hours. There will be 4 other kids in his class and his nurse will be with him. It's nice he'll be able to make some new friends.
He has become really friendly with this little boy name CJ in his class. He has had a few playdates with him. CJ kept saying Alec is my best friend, it so cute. Playdayes are really good for him, but really hard. Mostly emotionally for me that is, he can't run or even stand for that matter. But Alec still finds away to have a lightsaber fight sitting down :p
Well I hope this finds you all well.
-Amy
Monday, May 25, 2009
Friday, May 22, 2009
Well another day down. Alec is doing very well off decadrone, YAY! Although I am afraid to say that too much. By now I am sure you all of heard of the Mom who ran off with her son to avoid a court ordered chemotherapy treatment. Tough call on this one. Mark and I were talking; and I for one feel who the heck are the courts or a judge to decide what means a family has to take to treat their child. I mean, it's really a fine line. Obviously if nothing is being done and a child is suffering, well then something or someone needs to intervene.
I came across a few cases online with similar diagnoses of the missing boy. A specific case in Virginia, similar case of a 17 year old. he wanted to treat his disease wholistically. Wouldn't you know it a year later, not one cancer cell in his blood. No chemo, no radiatio, no joke and now no cancer!
Mark and I do believe there is a cure for cancer, Mark feels that it could be as simple as the bark on a tree, but it hasn't been tested. And I for one do to. As for denying Alec the chemo and radiation; I don't think I would have done that. To continue to treat him wholistically like we are doing now, hands down we will be doing this for the rest of our lives. I see a difference, the scans are proof and his blood work is proof.
I actually have to place another order for his MonaVie, it's the acai berry drink he gets. This little berry is stronger than the blueberry! it's AMAZING!! If you want more information on it, just e-mail me. The people of the Amazon are virtually disease free. I mean it's amazing, and packed with so many benefits.
He's still on the Ashwaghanda, Boswellin, Selenium, Mushrooms, Flaxseed oil as well as Codliver oil. Calcium with Magnesiem, his Greens First shake, and the Immune shake by the German Dr., Acytyl- Carnitine, just too name a few. Our meats and dairy continue to be organic and we are a green home. Just a little FYI the Green Works products, not so green.
Labels, Labels, Labels, you have to read them. We use Next Generation for all our soap needs dishwasher, detergent, fabric sheets. It's a little on the pricey side, but you can't put a price tag on your children's health.
We use Method as our hand washing soap. I mean think about the increase in breast cancer and autism, there has to be a connection. A friend of mine just told me a name of a website for cleaning products, I am going to check it out and I'll let you know.
Well I'm pretty tired and everyone is sleeping, I am heading to bed myself.
-Amy
I came across a few cases online with similar diagnoses of the missing boy. A specific case in Virginia, similar case of a 17 year old. he wanted to treat his disease wholistically. Wouldn't you know it a year later, not one cancer cell in his blood. No chemo, no radiatio, no joke and now no cancer!
Mark and I do believe there is a cure for cancer, Mark feels that it could be as simple as the bark on a tree, but it hasn't been tested. And I for one do to. As for denying Alec the chemo and radiation; I don't think I would have done that. To continue to treat him wholistically like we are doing now, hands down we will be doing this for the rest of our lives. I see a difference, the scans are proof and his blood work is proof.
I actually have to place another order for his MonaVie, it's the acai berry drink he gets. This little berry is stronger than the blueberry! it's AMAZING!! If you want more information on it, just e-mail me. The people of the Amazon are virtually disease free. I mean it's amazing, and packed with so many benefits.
He's still on the Ashwaghanda, Boswellin, Selenium, Mushrooms, Flaxseed oil as well as Codliver oil. Calcium with Magnesiem, his Greens First shake, and the Immune shake by the German Dr., Acytyl- Carnitine, just too name a few. Our meats and dairy continue to be organic and we are a green home. Just a little FYI the Green Works products, not so green.
Labels, Labels, Labels, you have to read them. We use Next Generation for all our soap needs dishwasher, detergent, fabric sheets. It's a little on the pricey side, but you can't put a price tag on your children's health.
We use Method as our hand washing soap. I mean think about the increase in breast cancer and autism, there has to be a connection. A friend of mine just told me a name of a website for cleaning products, I am going to check it out and I'll let you know.
Well I'm pretty tired and everyone is sleeping, I am heading to bed myself.
-Amy
Friday, May 15, 2009
Well we got a stroke of good news recently, it appears that after brain tumor board met, it was agreed by his usual radiologist who reads Alec's scans; that there is a slight improvement since last time. Hey, any bit of good news we'll take.
Alec will also be attending a summer program at East Moriches Elementary for 6 weeks, he's pretty excited to be going to the same school his cousin Justin once attended.
Our schedule continues to be packed with therapies, therapies, and more therapies; but they keep him and us going right. Kevin has been playing double headers lately on Sat.; he really has a passion for the game. He also wanted to sign up for track so he'll be doing that in June.
He also wants to play football, YIKES!! We didn't let him last year but we are going to give in this year. He's never played before but has a strong interest in the game.
Sean will be starting speech services within the next few weeks, and we continue to attend our local library programs for socialization and the Leeway school. He is really shy, I mean really shy. The library looks so beautiful since they expanded the children's dept.; it's definitely one of my favorite places to take the kids.
Well gotta run, heading to Alec's personal trainer, Thank you Lance Armstrong! Oh and they are working on getting a harness for him to utilize a treadmill. We go next week to Stony Brook for a two part evaluation to see if he can tolerate it. They are really emphasising on moving all his extremities and incorporating weights. Weights are so important.
Okay well bye for now,
Amy
Alec will also be attending a summer program at East Moriches Elementary for 6 weeks, he's pretty excited to be going to the same school his cousin Justin once attended.
Our schedule continues to be packed with therapies, therapies, and more therapies; but they keep him and us going right. Kevin has been playing double headers lately on Sat.; he really has a passion for the game. He also wanted to sign up for track so he'll be doing that in June.
He also wants to play football, YIKES!! We didn't let him last year but we are going to give in this year. He's never played before but has a strong interest in the game.
Sean will be starting speech services within the next few weeks, and we continue to attend our local library programs for socialization and the Leeway school. He is really shy, I mean really shy. The library looks so beautiful since they expanded the children's dept.; it's definitely one of my favorite places to take the kids.
Well gotta run, heading to Alec's personal trainer, Thank you Lance Armstrong! Oh and they are working on getting a harness for him to utilize a treadmill. We go next week to Stony Brook for a two part evaluation to see if he can tolerate it. They are really emphasising on moving all his extremities and incorporating weights. Weights are so important.
Okay well bye for now,
Amy
Monday, May 4, 2009
MRI Results are in
Stable, All is stable in the brain meaning the necrosis has stopped forming and there has been no further improvement since the last scan. As for the lesion in the spine, that too is seen as stable.
I must apologize for not updating sooner but March has always been a month from hell for us. We tried to stay low key and get through it. March marked the anniversary of his diagnosis, 2 years now and the to the date the necrosis caused hydrocephalus. We proceeded into April cautiously, Alec spiked a fever here and there as the end of the season illness made it through our home. Alec escaped it for a short time though, surprisingly considering his immune system. We celebrated Sean's 2nd birthday in the hospital; Alec was still experiencing some steroid crashing and sleeping a good 18 hrs a day. We took him in for a quick scan because sleepiness is a sign of hydrocephalus and he had one complaint of a headache but with our experience one is all we need. Scan came back fine as his Oncologist PA, Ms. Alyssa and Dr. cited it would but as always, completely understands our concern. His steroid was bumped up, decadrone, uurghh! But with a semi quick taper. He's back down to his usual extremely low dose with hydrocortisole and doing well. As we now apporach mother's day; it's another mark for us. As you remember, we lost him last year, in my arms sitting in the hospital as Mark screamed for the emergency staff to do something! While Sean and Kevin sat in the room next to us with a nurse, So May not another good month for us.
Kevin started baseball, and what an amazing player he is. His game has really improved since last year, he wants to join track this year because and I quote "It will teach me to run faster so I can do better at baseball". How could you say no to that.
Sean will be getting speech services soon, we had him evaluated through Early Intervention and he qualified. They are also recommending a Mommy and Me program for him because he is lacking some socialization skills with other children, and considering he is always around them caused some concern. The meeting to draw up his IEP is in 2 weeks.
Other than that all is the same here, with the exception of me :( I've been battling flu like symptoms for 3 days now. Of course there is some concern being that my niece goes to the school where the 3 cases of swine broke out in Deer Park. But chin up, air purifiers on full blast, and I am quarantined in our upstairs bedroom and husband is in full control.
May is also brain tumor awareness month so wear your gray to show support.
Gotta run hope this finds you all well.
The Mardjani Family
I must apologize for not updating sooner but March has always been a month from hell for us. We tried to stay low key and get through it. March marked the anniversary of his diagnosis, 2 years now and the to the date the necrosis caused hydrocephalus. We proceeded into April cautiously, Alec spiked a fever here and there as the end of the season illness made it through our home. Alec escaped it for a short time though, surprisingly considering his immune system. We celebrated Sean's 2nd birthday in the hospital; Alec was still experiencing some steroid crashing and sleeping a good 18 hrs a day. We took him in for a quick scan because sleepiness is a sign of hydrocephalus and he had one complaint of a headache but with our experience one is all we need. Scan came back fine as his Oncologist PA, Ms. Alyssa and Dr. cited it would but as always, completely understands our concern. His steroid was bumped up, decadrone, uurghh! But with a semi quick taper. He's back down to his usual extremely low dose with hydrocortisole and doing well. As we now apporach mother's day; it's another mark for us. As you remember, we lost him last year, in my arms sitting in the hospital as Mark screamed for the emergency staff to do something! While Sean and Kevin sat in the room next to us with a nurse, So May not another good month for us.
Kevin started baseball, and what an amazing player he is. His game has really improved since last year, he wants to join track this year because and I quote "It will teach me to run faster so I can do better at baseball". How could you say no to that.
Sean will be getting speech services soon, we had him evaluated through Early Intervention and he qualified. They are also recommending a Mommy and Me program for him because he is lacking some socialization skills with other children, and considering he is always around them caused some concern. The meeting to draw up his IEP is in 2 weeks.
Other than that all is the same here, with the exception of me :( I've been battling flu like symptoms for 3 days now. Of course there is some concern being that my niece goes to the school where the 3 cases of swine broke out in Deer Park. But chin up, air purifiers on full blast, and I am quarantined in our upstairs bedroom and husband is in full control.
May is also brain tumor awareness month so wear your gray to show support.
Gotta run hope this finds you all well.
The Mardjani Family
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