Whew, what a day! Everyday is like that though. Alec's MRI yesterday did not start off that good, Mark took the day off thank goodness. As it turns out Alec did not tolerate the anesthesia. His breathing decreased, his breaths per minute dropped when he got the first bolus of propofol. They had to wake him up and Mark left the room to come get me, I went in to see what was up. This never happened before with him, he was always fine. So I was told that he was going to have to be admitted, intebated and then sedated. This comes after I told Alec his throat won't hurt when he wakes up. Anyway I asked if we could try scanning him while he was awake, and of course the awesome team of anesthesiologist there agreed and would monitor him. I explained to Alec everything and how important it was for him to stay still for his pictures because we need to make sure there are no cancer buggies, as we call it.
HE DID IT!! 2 hr study. He was in and out alot to change the coils administer the contrast and such. I stayed in the room with him the entire time of course and was right there when he came out. I, of course remained nervous until the results were in because again we never had this issue before, so all kinds of things started running through my head.
End result:
IMPROVEMENT :-) The middle area of the necrosis that had significant uptake previously showed less uptake this time. The necrosis stopped forming. His spine remains noted as "stable disease"
I didn't see the report yet but Dr. Atlas' PA, Alyssa called me. Thank God for her because brain tumor board doesn't meet until Tues. I'll find out what the consensus is from the board then. But she was pleased with what the report had to say.
Some of Alec's supplements are suppose to repair damaged tissue to the brain and probably hyperbaric treatment still showing it's effectiveness.
Then of course leaving the hospital, our battery died, never a dull moment.
Well I gotta run.
xoxo
-Amy
Friday, January 30, 2009
Wednesday, January 28, 2009
Hello, we are one day away from our 3 month MRI scan. I know Alec is doing AMAZING but Mark and I are still nervous. I was scanning the caringbridge website which should be blocked to people like me and YES you too Kim =} and of course I come across this one boys site, well now a teenager. Once treated at St. Jude's for Medulloblastoma and went there for his yearly scan and after 6 years had a recurrence, it's inoperable. He was feeling fine no signs whatsoever and BOOM! That is when I turned off my computer.
But we remain strong and he does, I continue to treat him holistically. There is website link I added today to the left, click on it, you have to read it! Anyway I came across a product called "complete Immune" designed by this Dr. and Alec will be starting it with any hope this week.
Sean is completely off bottle's and is growing by leaps and bounds. I mean I don't even remember his infant years they just, whew flew by. Kevin also just shot up, he is so tall. Alec use to be just a head shorter than Kev but now Kevin really towers over him. Of course I know it because of radiation treatment he had to his spine, it will keep him tiny. I'm not sure when Alec will be evaluated for growth hormone injections, I think 10, I have to ask and do some research on it. I'm in no rush to have to give him injection after his GSF shots.
Well I gotta run.
xoxo
-Amy
But we remain strong and he does, I continue to treat him holistically. There is website link I added today to the left, click on it, you have to read it! Anyway I came across a product called "complete Immune" designed by this Dr. and Alec will be starting it with any hope this week.
Sean is completely off bottle's and is growing by leaps and bounds. I mean I don't even remember his infant years they just, whew flew by. Kevin also just shot up, he is so tall. Alec use to be just a head shorter than Kev but now Kevin really towers over him. Of course I know it because of radiation treatment he had to his spine, it will keep him tiny. I'm not sure when Alec will be evaluated for growth hormone injections, I think 10, I have to ask and do some research on it. I'm in no rush to have to give him injection after his GSF shots.
Well I gotta run.
xoxo
-Amy
Tuesday, January 20, 2009
Well what a day yesterday, Alec went up and down the stairs. He discovered when he puts his left foot up the step he goes faster. We laughed about it; and he looked at me and said this leg is stronger. What he doesn't seem to realize was there was a time when he couldn't even bear any weight on his right leg. Even though his left is clearing the stair alot faster, his right leg has to bear the weight while he is doing it. Mile stones just keep getting hit.
Ths morning while we were eating breakfast we were talking about how we are getting a new president today, and I was explaining to Alec the best I could or at least the best he could understand it. He had no care or interest in how we are making history with the first African American president; his only concern was: and I quote "Is he a nice man?" He looked at me with squinty confused eyes, and when I replied yes, he smiled.
Kevin was concerned on missing the inauguration, so he wants me to DVR the ceremony, he even said if there is no room left I can delete some poke'mon episodes :} Kevin was also concerned that now his president books are now out dated, ha ha. He is very much like his father in so many ways.
Well as my home remains quiet I am going to take this opportunity to yet again attempt to fold and put away laundry.
Some people ask about our good friend Hannah, her website is: http://hannahpro.blogspot.com/
or you can just click on Hannah's blog link above Alec's picture to the right.
Ths morning while we were eating breakfast we were talking about how we are getting a new president today, and I was explaining to Alec the best I could or at least the best he could understand it. He had no care or interest in how we are making history with the first African American president; his only concern was: and I quote "Is he a nice man?" He looked at me with squinty confused eyes, and when I replied yes, he smiled.
Kevin was concerned on missing the inauguration, so he wants me to DVR the ceremony, he even said if there is no room left I can delete some poke'mon episodes :} Kevin was also concerned that now his president books are now out dated, ha ha. He is very much like his father in so many ways.
Well as my home remains quiet I am going to take this opportunity to yet again attempt to fold and put away laundry.
Some people ask about our good friend Hannah, her website is: http://hannahpro.blogspot.com/
or you can just click on Hannah's blog link above Alec's picture to the right.
Monday, January 19, 2009
Jacob's service was beautiful. I can't imagine what Nancy and Mike are going through right now. When Alec was first diagnosed we had the emotional support of family and friends, although only 1 month in, after the first round of chemo- it was expressed how "stressed out" some people are. That is another subject entirely. How some people you thought would never be there for you suddenly were; and people you thought were your rock, suddenly fade away into the night.
Anyway, as much as the majority of people tried to console us, we didn't find, or atleaset I didn't find comfort from anyone but my husband and those I met at clinic.
It's really hard to express how you feel to someone that hasn't experienced what you have. The running to get the puke bucket at all hours of the night, because Alec was getting the "yuckies". Temperature taking and being ready to goto the ER at the drop of a coin. Having to hold your son down and count to 3 for his injections, medicine, chemo, and food intake, what his current anc, wbc, hemoglobin, and platelets counts were currently at.
When it was okay to give Alec fresh fruit and veggies and when they are off limits. So many things. Anyway my point is, this is a whole new chapter for Nancy and her family. As I stood there and she asked how Alec was doing, I felt guily. Here I am with my son getting stronger and she lost hers to the same cancer.
There were no right words I could say that would bring Jacob back or that would have really truly consoled her. She has entered another realm that I pray everyday I never have to face. What she doesn't know is how much inspiration she is to me, and how the strength and courage Jacob had is in my heart and I will carry it and convey it to all I meet.
They started an organization and if you have a moment please look at it:
http://www.kidsvcancer.org/
She is on a mission to find a cure, and she has the medical background and feelers out there to do the research.
Well keep those Gold flags flying high to continue to raise childhood cancer awareness and Gray for brain tumor awareness.
Bye for now,
Amy
Anyway, as much as the majority of people tried to console us, we didn't find, or atleaset I didn't find comfort from anyone but my husband and those I met at clinic.
It's really hard to express how you feel to someone that hasn't experienced what you have. The running to get the puke bucket at all hours of the night, because Alec was getting the "yuckies". Temperature taking and being ready to goto the ER at the drop of a coin. Having to hold your son down and count to 3 for his injections, medicine, chemo, and food intake, what his current anc, wbc, hemoglobin, and platelets counts were currently at.
When it was okay to give Alec fresh fruit and veggies and when they are off limits. So many things. Anyway my point is, this is a whole new chapter for Nancy and her family. As I stood there and she asked how Alec was doing, I felt guily. Here I am with my son getting stronger and she lost hers to the same cancer.
There were no right words I could say that would bring Jacob back or that would have really truly consoled her. She has entered another realm that I pray everyday I never have to face. What she doesn't know is how much inspiration she is to me, and how the strength and courage Jacob had is in my heart and I will carry it and convey it to all I meet.
They started an organization and if you have a moment please look at it:
http://www.kidsvcancer.org/
She is on a mission to find a cure, and she has the medical background and feelers out there to do the research.
Well keep those Gold flags flying high to continue to raise childhood cancer awareness and Gray for brain tumor awareness.
Bye for now,
Amy
Friday, January 16, 2009
God has chosen another Angel
http://www.caringbridge.org/visit/jacobfroman
(Cut and paste above into your browser)
The above-mentioned website is that of a couragous young man, Jacob, who lost his battle to brain cancer; same medulloblastoma as Alec. Words can't even describe the feeling Mark and I are feeling since we heard of his passing. We can't even imagine what there household must be like at this very moment.
It's not right that these children go through so much. They are robbed of there childhood and their education shifts from adding and subtraction to ml's and cc's the focus goes from twinkies to bactrim.
I am not feeling up to updating Alec's progress, although very significant in all area's yay :} We just ask to pray tonight that our friends, the Froman family that, I don't even know nor can I find the words, just please pray for them.
-Amy
(Cut and paste above into your browser)
The above-mentioned website is that of a couragous young man, Jacob, who lost his battle to brain cancer; same medulloblastoma as Alec. Words can't even describe the feeling Mark and I are feeling since we heard of his passing. We can't even imagine what there household must be like at this very moment.
It's not right that these children go through so much. They are robbed of there childhood and their education shifts from adding and subtraction to ml's and cc's the focus goes from twinkies to bactrim.
I am not feeling up to updating Alec's progress, although very significant in all area's yay :} We just ask to pray tonight that our friends, the Froman family that, I don't even know nor can I find the words, just please pray for them.
-Amy
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