Well thanks to my new electronic friend Nancy, I started to explore genetic testing on Alec's initial brain tumor. As it turns out there is a gene linked to breast cysts/tumors and brain tumors; both cancerous and not. I was reading about this one family, I can't even go into detail it just brings tears to my eyes, and I have to stay positive. But it without a doubt needs to be tested.
These genetic finds are being targeted as a way of treatment. Research is always an on going battle, I am just so afraid to miss something. It's amazing how fast 2 a.m really rolls around.
In any case this is the eve of Alec's MRI. I remain confident and of course nervous. Alec of course is just psyched to have sleepy juice tomorrow, hmm should I worry now :0)
He is having a good day, eating here and there. He had fun today playing ball with Jack. He is so good with him, he knows to be gentle with him, it's so cute to watch them together and the smile he brings to his face I can't even tell you.
I set up an exercise bike for him which he really enjoys, I brought his bike in the kitchen op[ened the blinds to the sliding glass doors and propped his training wheel up on an encyclopedia so now when he peddles, the back wheel just turns and he gets some sun light at the same time. He has the coolest exercise bike around, he puts on his sun glasses, it's so cute.
Well thats it for now.
Below is a poem from one of our friends blogs, it keeps me strong so I wanted to share it with you:
Cancer you monster
let go of my son,
We won't let you take him,
don't think you have won.
Thought you could sneak in
like a thief in the night,
Trample our spirit,
then take my child's life.
You started this battle
but we'll win this war,
We caught you red handed,
you'll live no more.
We fight you with chemo
it's making him ill,
Your time here is short,
its you this will kill.
With courage and faith
his fear he'll walk through,
There is no surrender,
just the death of you!
Wednesday, January 30, 2008
Monday, January 28, 2008
Back from Florida
Hi all,
I know it has been a while since my last post, time and my days go by so fast. Alec has just started round 3 of his new chemo protocol. He is fairing it okay, we had some bouts of vomiting which comes with the chemo territory. He is back on phenergen and doing pretty well with it. He is still on Acyclovir and Bactrim. We go on Friday for his MRI, I am so nervous. I found out the imaging center down the road from his hospital can scan the brain and complete spine in one day and in just over an hour. It is a newer machine and they don't have to switch out and coils and move him. It's amazing what you are not told unless you complain and talk to hospital administration.
In any case, I am still waiting for his latest t-cell counts from his transplant to see how his immune functions are recouping, but....
They lost his blood AGAIN!!!!!
7 vials need to be drawn from him a 3rd time!!!
His wholistic Dr. is great, he continues to follow his organic diet, although from the vomiting bouts he has lost some weight. He is doing well with his walker, and he looks so handsome in his hearing aids.
Disney was amazing, very hard but amazing. We made one trip to the childrens hospital for his weekly counts which were really good, his anc is 2,900. His platelets and red blood cells keep regenerating and no transfusions have been needed lately.
Well my time is up I must start cooking dinner. I will try to write more tomorrow.
Enjoy some Disney photos until then.
I know it has been a while since my last post, time and my days go by so fast. Alec has just started round 3 of his new chemo protocol. He is fairing it okay, we had some bouts of vomiting which comes with the chemo territory. He is back on phenergen and doing pretty well with it. He is still on Acyclovir and Bactrim. We go on Friday for his MRI, I am so nervous. I found out the imaging center down the road from his hospital can scan the brain and complete spine in one day and in just over an hour. It is a newer machine and they don't have to switch out and coils and move him. It's amazing what you are not told unless you complain and talk to hospital administration.
In any case, I am still waiting for his latest t-cell counts from his transplant to see how his immune functions are recouping, but....
They lost his blood AGAIN!!!!!
7 vials need to be drawn from him a 3rd time!!!
His wholistic Dr. is great, he continues to follow his organic diet, although from the vomiting bouts he has lost some weight. He is doing well with his walker, and he looks so handsome in his hearing aids.
Disney was amazing, very hard but amazing. We made one trip to the childrens hospital for his weekly counts which were really good, his anc is 2,900. His platelets and red blood cells keep regenerating and no transfusions have been needed lately.
Well my time is up I must start cooking dinner. I will try to write more tomorrow.
Enjoy some Disney photos until then.
Saturday, January 5, 2008
Started New Chemo
It was a rough start this morning. Alec's retnoic acid comes in the form of a pill with liquid in side. Usually they are capsules and I pop them open or pills I melt in water, but no... the pill is the size and shape of a jelly bean to give you an idea. I tried popping a hole in it and squeezing out the liquid but it's a thick liquid and alot was left over in side that I could not get to. So we dreaded it but we had to get Alec to swallow this pill. A huge chore, he kept swallowing the water but not the pill. After about 30 min. and 3 pills later. I kept taking them out after a few tries because he would attempt to chew it and I didn't want it to burst then we are stuck with how much did he get and should we give him another pill. Finally he did it, in tears, but did it. The chemo was easy enough I just dissolved it in water and gave it to him.
He is doused in Aquphor right now and chap stick, I have been reading how much the retnoic acid dries out your skin. He had his zofran and is doing well. Actually playing x-box lego star wars with Kevin right now.
Well I'll keep you posted.
Keep the faith.
xoxo
-Amy
He is doused in Aquphor right now and chap stick, I have been reading how much the retnoic acid dries out your skin. He had his zofran and is doing well. Actually playing x-box lego star wars with Kevin right now.
Well I'll keep you posted.
Keep the faith.
xoxo
-Amy
Friday, January 4, 2008
Hello My Friends
Hello, I know it's been a while since my last post, and for that I apologize. But I wanted to wait until I had some really good news to share with you. Our holidays were great! Santa was good to the boys and why not they have been so good.
As some of you know Alec had some adrenalin issues and his endocrinologist wanted to keep him on cortisol for a couple of months, and he was also placed on the hydrocortisole for swelling in the brain and some "radiation effects" well; I took him off it ALL! It was not helping him, so ultimately it must be hurting him.
He has been on his organic diet, gluten, wheat, dairy,and sugar free with wholistic supplements prescribed to him from his wholistic Dr. we started seeing in Plainview. And what a difference! His adrenalin gland is now producing cortisol all on it's own, thats right, no drugs! Imagine all those unnecessary steroids he was on that was just tearing him apart, ripping down muscle walls, it's disgusting. I just kept researching and researching and today he is upbeat, smiling again, laughing, real belly laughs. All this with just a 1000 anc, which is really low, and 40 on platelets, we get transfused at 20, most likely next week at clinic we'll need platelets.
He has finished his 1st round of chemo, Tomador and celebrex, which went extremely well! No vomiting :0) We start retnoiac acid and cyclophosimide tomorrow, he takes it 2x a day for 21 days and then starts a new cycle.
Alec is still unable to walk by himself, his balance is a big issue. It's hard because he wants to go and can't. He is so strong willed it isn't even funny, I am always finding him scooting across the kitchen on his rear end or off the couch getting something form the coffee table or crawling toward something, which is a big deal that he wants too. It took a long time to get here. His memory appears to be back, he doesn't seem to be so confused. His speech is still slow and it does take him longer to process things, but so much better.
Alec's walker has arrived, they are coming to the house actually tomorrow to exchange it for one that rolls, it's to heavy for him to pick it up and walk with it, he tried. He is very excited about it, it will be a hand toward his independence.
His hearing aids are ordered, A BIG THANK YOU JOEY'S FRIENDS, he was excited he got to pick out any color he wanted, he chose red of course, Darth Vader's lightsaber :0) He has to have special hearing aids to attach the fm system to it for school. The teacher will be wearing a small microphone that will be connected to his hearing aids so when the class is noisy he can still understand instruction clearly.
He still cannot goto school of course, possibly spring, he gets his home tutoring 5 days a week for an hr. He gets occupational therapy 2x a week, physical therapy 3x a week and will be starting speech 2-3x a week. Then to squeeze in Dr's in all those, whew!!
Regarding his eating, Alec is still a very slow chewer. He is weighing in at 37 lbs, down from 39. But I know he is getting everything he needs. He is on a special protein shake 2x a day and green supplements and berry supplements. Dr. Stills, his wholistic Dr., is monitoring him very closely and working with his chemo protocol. His next MRI is scheduled for Feb. 28 and 29th.
Alec is getting excited for his Make a Wish Disney trip in a couple of weeks, he is going to train to be a Jedi, what a surprise and he wants to shoot Zurg. Kevin is really excited too, maybe more that he will be missing school. I got information already for the children's hospital in Orlando, "just in case" and it's great because where we will be staying there is a medical staff on hand 24/7.
Well I think I have it all covered for now. I'll let you know how his next round of chemo goes. I'm a little nervous we got really spoiled this round.
xoxo
-Amy
As some of you know Alec had some adrenalin issues and his endocrinologist wanted to keep him on cortisol for a couple of months, and he was also placed on the hydrocortisole for swelling in the brain and some "radiation effects" well; I took him off it ALL! It was not helping him, so ultimately it must be hurting him.
He has been on his organic diet, gluten, wheat, dairy,and sugar free with wholistic supplements prescribed to him from his wholistic Dr. we started seeing in Plainview. And what a difference! His adrenalin gland is now producing cortisol all on it's own, thats right, no drugs! Imagine all those unnecessary steroids he was on that was just tearing him apart, ripping down muscle walls, it's disgusting. I just kept researching and researching and today he is upbeat, smiling again, laughing, real belly laughs. All this with just a 1000 anc, which is really low, and 40 on platelets, we get transfused at 20, most likely next week at clinic we'll need platelets.
He has finished his 1st round of chemo, Tomador and celebrex, which went extremely well! No vomiting :0) We start retnoiac acid and cyclophosimide tomorrow, he takes it 2x a day for 21 days and then starts a new cycle.
Alec is still unable to walk by himself, his balance is a big issue. It's hard because he wants to go and can't. He is so strong willed it isn't even funny, I am always finding him scooting across the kitchen on his rear end or off the couch getting something form the coffee table or crawling toward something, which is a big deal that he wants too. It took a long time to get here. His memory appears to be back, he doesn't seem to be so confused. His speech is still slow and it does take him longer to process things, but so much better.
Alec's walker has arrived, they are coming to the house actually tomorrow to exchange it for one that rolls, it's to heavy for him to pick it up and walk with it, he tried. He is very excited about it, it will be a hand toward his independence.
His hearing aids are ordered, A BIG THANK YOU JOEY'S FRIENDS, he was excited he got to pick out any color he wanted, he chose red of course, Darth Vader's lightsaber :0) He has to have special hearing aids to attach the fm system to it for school. The teacher will be wearing a small microphone that will be connected to his hearing aids so when the class is noisy he can still understand instruction clearly.
He still cannot goto school of course, possibly spring, he gets his home tutoring 5 days a week for an hr. He gets occupational therapy 2x a week, physical therapy 3x a week and will be starting speech 2-3x a week. Then to squeeze in Dr's in all those, whew!!
Regarding his eating, Alec is still a very slow chewer. He is weighing in at 37 lbs, down from 39. But I know he is getting everything he needs. He is on a special protein shake 2x a day and green supplements and berry supplements. Dr. Stills, his wholistic Dr., is monitoring him very closely and working with his chemo protocol. His next MRI is scheduled for Feb. 28 and 29th.
Alec is getting excited for his Make a Wish Disney trip in a couple of weeks, he is going to train to be a Jedi, what a surprise and he wants to shoot Zurg. Kevin is really excited too, maybe more that he will be missing school. I got information already for the children's hospital in Orlando, "just in case" and it's great because where we will be staying there is a medical staff on hand 24/7.
Well I think I have it all covered for now. I'll let you know how his next round of chemo goes. I'm a little nervous we got really spoiled this round.
xoxo
-Amy
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