On an extremely sad note; last night my Grandmother passed away. Those who knew her, knew my Grandmother as the feistiest woman around. She was stubborn, proud and would never ask for help. She always had to do things herself and her way, hmm sound familiar.
I am still in disbelief that my Grandmother is no longer with us. My family was in no way shape or form the "Clevers." We were more like the "Adam's Family." But fights and all we were still our own kind of family; to us it was the norm.
I don't know what the arrangements are yet, I will post them as they come in. For now I am planning a trip down to North Carolina.
I actually bought my plane ticket for a surprise visit on her 85th birthday in January, she never knew I was coming to see her. Needless to say I am no longer a fan of surprises.
Sorry to bring such sad news this time of year.
On the upside the boys are getting psyched for Santa. Alec continues to get so strong. We visited his classmates today. Mrs. "B" had a pancake breakfast for them, and she makes one mean pancake :) Alec had a great time and even joined his friends for some quiet reading time on the carpet. He is loving his new friends and they are so kind and sweet to him. He is expected to rejoin his classmate in January.
Bye for now,
xoxo
-Amy
Tuesday, December 23, 2008
Monday, December 8, 2008
Ports Out, YAY!!
Well today went off without a hitch. This is a picture of Alec leaving the recovery room with Daddy port free :}
Dr. Glick successfully removed Alec's entire port. He asked me if I wanted to keep it; and of course I said yes. This little thing was his life line for a long time. It's pretty interesting looking and you can see the impressions from all the times he was accessed.
After surgery he was uncomfortable they gave him some phentonal, sorry not sure of spelling, and he is doing much better now.
Alec said to Mark when they were leaving, now we don't have to come back here anymore, Marks eyes filled up with the tears because he or I can't even say never, but we are in a good place right now with him. Alec is in a good place now. Everyday some more imporvements. He is eating peanut butter and jelly sandwiches, just regular sandwiches nothing mushed or watered down. And his favorite is fried eggs with ketchup he eats eggs praticlly everyday.
He continues to build strength, balance of course is a big issue but Dr. Atlas said if he has the stregnth it will help him with his balance.
On an educational note, a new nurse was hired and she is only available 3 days a weeks. Thats okay because as it turns out she is one of the awesome nurses from PICU at Stony Brook. We had 2 favorite nurses while we were there, Jason and Pat. So of course when she called I was jumping for joy. I feel soooo comfortable having him in her hands, I know he will get exacly what he needs, she is such an amazing person.
Well I hate to just throw this all at you but I am trying to fit as much in as I can in the short amount of time I have available.
Thanks for your continued prayers. And please pray for all those still fighting.
-Amy
Friday, November 28, 2008
Whew, Thanksgiving is over and way too many calorie's were consumed =} It was so nice though. No hussle bussle, dressing the kids in there Sunday best, just us, Football and yummy food.
We have made some wonderful strides these past few days, well since our last hospital stay, yes we were in the hospital last week for a few says. Alec spiked a fever and was going through steroid withdrawls so Dr. Atlas felt it was best to put him back on Decadrone for the time being. The radiation necrosis concern is still on the table so for now, we have to keep the steroids on board.
The really good news is Alec's counts really went up, not talking about just the white blood count which will go up with the steroids alone but his lymphocytes is at 1.01 the highest its been EVER!! The steroids wouldn't effect that well it would but heading in the opposite direction. Thank you holistic medicine!!
Other than that we are doing ALOT more walking. He walked all the way into clinic today with his walker, and with help. But we did it, he did it! And today he ate lunch unpureed. straight turkey and cheese rolls, chewed and swallowed, YAY!!! He is amazing and getting better and better everyday, it's like he's coming back. It's really hard to put into words; but it's truly breath taking.
The count down is on, he is schedule for the port to come out Dec. 8th, yay!!!! which means what you ask, when Alec spikes a fever no more running into New Hyde Park, not that I mind, I would rather; but he can just be a kid sick.
Well as always things to do. Keep praying, your prayers and mine are being answered.
xoxox Amy
We have made some wonderful strides these past few days, well since our last hospital stay, yes we were in the hospital last week for a few says. Alec spiked a fever and was going through steroid withdrawls so Dr. Atlas felt it was best to put him back on Decadrone for the time being. The radiation necrosis concern is still on the table so for now, we have to keep the steroids on board.
The really good news is Alec's counts really went up, not talking about just the white blood count which will go up with the steroids alone but his lymphocytes is at 1.01 the highest its been EVER!! The steroids wouldn't effect that well it would but heading in the opposite direction. Thank you holistic medicine!!
Other than that we are doing ALOT more walking. He walked all the way into clinic today with his walker, and with help. But we did it, he did it! And today he ate lunch unpureed. straight turkey and cheese rolls, chewed and swallowed, YAY!!! He is amazing and getting better and better everyday, it's like he's coming back. It's really hard to put into words; but it's truly breath taking.
The count down is on, he is schedule for the port to come out Dec. 8th, yay!!!! which means what you ask, when Alec spikes a fever no more running into New Hyde Park, not that I mind, I would rather; but he can just be a kid sick.
Well as always things to do. Keep praying, your prayers and mine are being answered.
xoxox Amy
Wednesday, November 12, 2008
TV Debut
Just got word Alec will be making his TV debut on NewYork TV55 at 11am this Saturday. Other than that we are doing well, school is setting in. Well mornings are crazy trying to get the boys already and of course I am driving him. He gets tired easily but today he really perked up =) Well hope all is well.
xoxox
Amy
xoxox
Amy
Tuesday, November 4, 2008
Some recent pictures
Of course we have Halloween in there, can you guess who Alec was, LOL A picture of Dr. Hynes and Ms. Moran making a visit to our house to say hi to Alec. This was Dr.Hynes day as our school principal and he wanted to say goodbye to Alec. Our school, Clayton Huey is amazing and we have been so lucky to live in a district with caring and loving teachers and school personnel. Alec's teacher this year is Ms. Buccos, aka Ms. B Alec has a hard time pronouncing her name. She is warm and gentle and caters to Alec. She understands him pretty well even considering his speech impairment.
I am working closely with Ms. Henninger to get Alec a communications device for school. So far it's down to the Tango, I think it is the best for him. He actually was talking about in all night. It will take time for him to learn how to use it, but I feel it's the best choice.
Other pictures of course is Kevin making pumpkin pie with his classmates. And then you see our hospital friends from a couple of weeks ago, Ms. Alyssa, Jan and Ms. Meg talking to Alec's classmates about Alec returning to school and how he is just like them.
Alec has a modified day, he is only in school a short time and gets all his pt/pt/speech at home still. His immune system is still low and he is fatigued alot so this is best for him right now.
He is doing well on his bipap machine. That took alot of tweking fitting that in his day. His pulmonary Dr. recommended it over night, well he hydrates overnight so no good, so when he naps during the day and at night for a couple of hours before I drop the ng tube he is on it. His diaphramn is pushing up into his lungs so the bipap machine pushes pressure in while he is breathing to exercise the diaphram so to speak. He still needs hydration over night his recent MBS showed he does aspirate thin liquids still but his swallowing is improving everyday. I even stopped his robinal, drooling medicine and he is doing well. Occasional drool drips but so much better.
Well I gotta run ENT and then off to swallow therapy.
Keep the faith,
Love,
Amy
I am working closely with Ms. Henninger to get Alec a communications device for school. So far it's down to the Tango, I think it is the best for him. He actually was talking about in all night. It will take time for him to learn how to use it, but I feel it's the best choice.
Other pictures of course is Kevin making pumpkin pie with his classmates. And then you see our hospital friends from a couple of weeks ago, Ms. Alyssa, Jan and Ms. Meg talking to Alec's classmates about Alec returning to school and how he is just like them.
Alec has a modified day, he is only in school a short time and gets all his pt/pt/speech at home still. His immune system is still low and he is fatigued alot so this is best for him right now.
He is doing well on his bipap machine. That took alot of tweking fitting that in his day. His pulmonary Dr. recommended it over night, well he hydrates overnight so no good, so when he naps during the day and at night for a couple of hours before I drop the ng tube he is on it. His diaphramn is pushing up into his lungs so the bipap machine pushes pressure in while he is breathing to exercise the diaphram so to speak. He still needs hydration over night his recent MBS showed he does aspirate thin liquids still but his swallowing is improving everyday. I even stopped his robinal, drooling medicine and he is doing well. Occasional drool drips but so much better.
Well I gotta run ENT and then off to swallow therapy.
Keep the faith,
Love,
Amy
Wednesday, October 29, 2008
WOW, so much time has passed~As Always Keeping busy
Huh, where to begin. Well a couple of weeks ago while Mark was away Alec spiked a fever, low grade 100.4 but right on the cut that I had to take him in for his antibiotic drip =( All went well though. It's that stinky port that gets us every time, but..... It's coming out, YAY!! He is scheduled for Dec. 8th at Schneiders to have the port out. Thank you Dr. Atlas. When he spiked a fever and I brought him in Dr. Atlas felt there is no need to keep the port in at this point but I had to check with Alec's pulmonary Dr. because of course the fear of not being able to extabated him came up. He will be getting an LMA, he won't be completely intubated just a little breathing tube stopping before his vocal cords.
I can't wait, it's one of those bitter sweet things though, it's a comfortable access sight for him, now he will need an iV if hospitalized.
Oh, while scanning the internet I found the following article:
Posted on: 10/18/2005
Autumn Birth Linked to Childhood Brain Cancer Possibly, report Duke University researchers, who studied four different groups of medical records from various regions of the country and found that children born in late summer and fall were more likely to develop an aggressively malignant brain tumor called medulloblastoma.
"Medulloblastoma is more common in kids with autumn birthdates, even after correcting for the higher frequency of fall birthdays," said the study's lead author, Dr. Edward C. Halperin, vice dean of the school of medicine at Duke University Medical Center, in Durham, N.C.
Halperin and his colleagues suspect that something these children were exposed to in the womb during a period of crucial brain development may have contributed to their cancer. Pesticides are a prime suspect, he said, since they are commonly sprayed during the springtime.
Not everyone agrees, however. Dr. Mark Souweidane, vice chairman and director for pediatric neurological surgery at Weill Cornell Medical Center/New York-Presbyterian Hospital in New York City, said that while there "seems to be a marginally higher rate of children born with medulloblastoma in the fall, there's no good basis for saying that it's from pesticide exposure."
According to Halperin, other studies done in Norway and Japan have found an association between fall births and medulloblastoma. And, he added, other research has also shown a link between pesticide exposure and childhood brain cancers.
Medulloblastoma is the most common type of pediatric brain cancer tumor, according to the National Library of Medicine. Symptoms include headache, vomiting, uncoordinated movements and extreme fatigue.
For the current analysis, Halperin and his colleagues examined the medical records of nearly 1,200 children diagnosed with medulloblastoma between 1974 and 1999.
Ninety children were registered with the Central Cancer Registry, and information on 122 children came from a Duke University database. Information on 922 children came from the national Surveillance, Epidemiology and End Results (SEER) database, and details on another 75 Los Angeles-area children came from California SEER data.
The researchers compared birth data for the children with medulloblastoma to seasonal birth data from either North Carolina or from the National Center for Health Statistics.
They found that children with medullablastoma included in the Duke University database had significantly more autumn birth dates. Thirty-six percent were born in the fall, vs. 27 percent in the summer, 19 percent in the winter and 18 percent in the spring.
The statistics for the North Carolina group were similar, with 38 percent of children with medulloblastoma born in the fall, compared to 28 percent in the summer, 18 percent in the spring and 17 percent in the winter. The data from Los Angeles was also similar: 35 percent were born in the fall, 19 percent in the summer, 19 percent in the spring and 28 percent in the winter.
Only the national data didn't show an association between medulloblastoma diagnosis and autumn births. Halperin said he suspects that is because if you look at the nation as a whole, you are lumping together different geographic regions with different agricultural seasons.
Results of the study appear in the current issue of the Archives of Environmental Health.
Halperin stressed the results of this study don't mean "that people should stop spraying their crops or only drink bottled water," but the association between birth dates and cancer development is one worthy of further investigation.
Interesting right considering Alec's birthday is Nov. 29th. He is doing amazing though these days, laughing, playing. He continues to work hard during all his therapies. His teacher asked him what he promises to do if he was president...he put his hand over his heart and recited the pledge of allegiance, how adorable is that.
Well I really want to type more but I am so tired and Alec will be up in a bit, he usually needs a bathroom run at 1Am.
I'll try to update more tomorrow.
Keep the faith!
Love,
Amy
I can't wait, it's one of those bitter sweet things though, it's a comfortable access sight for him, now he will need an iV if hospitalized.
Oh, while scanning the internet I found the following article:
Posted on: 10/18/2005
Autumn Birth Linked to Childhood Brain Cancer Possibly, report Duke University researchers, who studied four different groups of medical records from various regions of the country and found that children born in late summer and fall were more likely to develop an aggressively malignant brain tumor called medulloblastoma.
"Medulloblastoma is more common in kids with autumn birthdates, even after correcting for the higher frequency of fall birthdays," said the study's lead author, Dr. Edward C. Halperin, vice dean of the school of medicine at Duke University Medical Center, in Durham, N.C.
Halperin and his colleagues suspect that something these children were exposed to in the womb during a period of crucial brain development may have contributed to their cancer. Pesticides are a prime suspect, he said, since they are commonly sprayed during the springtime.
Not everyone agrees, however. Dr. Mark Souweidane, vice chairman and director for pediatric neurological surgery at Weill Cornell Medical Center/New York-Presbyterian Hospital in New York City, said that while there "seems to be a marginally higher rate of children born with medulloblastoma in the fall, there's no good basis for saying that it's from pesticide exposure."
According to Halperin, other studies done in Norway and Japan have found an association between fall births and medulloblastoma. And, he added, other research has also shown a link between pesticide exposure and childhood brain cancers.
Medulloblastoma is the most common type of pediatric brain cancer tumor, according to the National Library of Medicine. Symptoms include headache, vomiting, uncoordinated movements and extreme fatigue.
For the current analysis, Halperin and his colleagues examined the medical records of nearly 1,200 children diagnosed with medulloblastoma between 1974 and 1999.
Ninety children were registered with the Central Cancer Registry, and information on 122 children came from a Duke University database. Information on 922 children came from the national Surveillance, Epidemiology and End Results (SEER) database, and details on another 75 Los Angeles-area children came from California SEER data.
The researchers compared birth data for the children with medulloblastoma to seasonal birth data from either North Carolina or from the National Center for Health Statistics.
They found that children with medullablastoma included in the Duke University database had significantly more autumn birth dates. Thirty-six percent were born in the fall, vs. 27 percent in the summer, 19 percent in the winter and 18 percent in the spring.
The statistics for the North Carolina group were similar, with 38 percent of children with medulloblastoma born in the fall, compared to 28 percent in the summer, 18 percent in the spring and 17 percent in the winter. The data from Los Angeles was also similar: 35 percent were born in the fall, 19 percent in the summer, 19 percent in the spring and 28 percent in the winter.
Only the national data didn't show an association between medulloblastoma diagnosis and autumn births. Halperin said he suspects that is because if you look at the nation as a whole, you are lumping together different geographic regions with different agricultural seasons.
Results of the study appear in the current issue of the Archives of Environmental Health.
Halperin stressed the results of this study don't mean "that people should stop spraying their crops or only drink bottled water," but the association between birth dates and cancer development is one worthy of further investigation.
Interesting right considering Alec's birthday is Nov. 29th. He is doing amazing though these days, laughing, playing. He continues to work hard during all his therapies. His teacher asked him what he promises to do if he was president...he put his hand over his heart and recited the pledge of allegiance, how adorable is that.
Well I really want to type more but I am so tired and Alec will be up in a bit, he usually needs a bathroom run at 1Am.
I'll try to update more tomorrow.
Keep the faith!
Love,
Amy
Monday, September 22, 2008
Yummy Fund Raiser Info, hope to see you there!
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.
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.
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
Friday, August 22, 2008
No New Is Good News, Right?
Well I am happy to report, although that hasn't always been the case with us, it is right now. Alec is doing really well and speech is improving very slowly, but a definite improvement. His swallows have become so powerful that his swallow therapist advises to put the g-tube placement on the back burner. He is making really good progress and alot quicker than he anticipated. He is on an all puree diet and needs no tube feeds right now. We were advised to just drop an ng tube when Alec needs his meds, he's on some really important ones for blood pressure and stinky steriod, but he needs it and for some hydration. Anyhow, after he gets his meds pull it out for the day. He was very excited to hear this, Alec that is. I am just waiting on the supplies to do so I might need another script from his Dr. for daily NG tubes.
He is so anxious to get back to school, he packs a lunch box everyday, he is so funny. Oh and some other good news, his numbers are coming up, yay!! His LYM read 1.06 and normal range is 2.5- 3.5 we are almost there. We will probably run a t-cell check on our next clinic visit in 3 weeks, yup 3 weeks, can you believe it. It's exciting and sad at the same time, Alec likes to see his clinic friends, Alyssa, she always gets the, "Can I have____________ questions from Alec, it's so funny. Then there is Mr. Rob- who makes a fingerstick not so bad, and Jan, Faye and the HEMOC nurses, and all of our HEMOC friends.
Alec continues to get his herbal supplements as well. I really feel it's helping his whole demeanor pick up. He plays so nicely now, and enjoys it.
There is always some depressing days, like when we were on our way home and having this wacky weather there were double rainbows in the sky and Alec couldn't see them. I snapped some pictures with my phone, but he still has a hard time narrowing in on it. He has been complaining about his vision more these days, he gets frustrated with it. This morning Sesame Street was on as always, our 7-8am ritual and we paused the TV, ya paused that alone is weird, but just to see if he could see the number on the TV and it was 4 and he got it. So it's so hard to understand what he is seeing.
Well enjoy some pictures, till next time keep the faith.
Love,
Amy
He is so anxious to get back to school, he packs a lunch box everyday, he is so funny. Oh and some other good news, his numbers are coming up, yay!! His LYM read 1.06 and normal range is 2.5- 3.5 we are almost there. We will probably run a t-cell check on our next clinic visit in 3 weeks, yup 3 weeks, can you believe it. It's exciting and sad at the same time, Alec likes to see his clinic friends, Alyssa, she always gets the, "Can I have____________ questions from Alec, it's so funny. Then there is Mr. Rob- who makes a fingerstick not so bad, and Jan, Faye and the HEMOC nurses, and all of our HEMOC friends.
Alec continues to get his herbal supplements as well. I really feel it's helping his whole demeanor pick up. He plays so nicely now, and enjoys it.
There is always some depressing days, like when we were on our way home and having this wacky weather there were double rainbows in the sky and Alec couldn't see them. I snapped some pictures with my phone, but he still has a hard time narrowing in on it. He has been complaining about his vision more these days, he gets frustrated with it. This morning Sesame Street was on as always, our 7-8am ritual and we paused the TV, ya paused that alone is weird, but just to see if he could see the number on the TV and it was 4 and he got it. So it's so hard to understand what he is seeing.
Well enjoy some pictures, till next time keep the faith.
Love,
Amy
Thursday, July 24, 2008
Greeting From Home, Yay!!
Let's see to give all of our family and friends a quick recap. Hyperbaric is almost done, a very bitter sweet thing, we have made some wonderful friends that I hope will remain in our lives forever. They are amazing there. His swallow therapy is going really well, slow moving but we are making progress. The vital stim I think is really helping him. I am told it will be a long tme coming before he will be able to eat and swallow enough to meet his nutritional needs, so Mark and I are looking into the g-tube. His swallow therapist, Steve Astrofsky, said he didn't think he would need to be intabated as previously mentioned, something we are going to look into.
Alec got his braces for his legs and right hand. His braces are sooo cool they have spiderman all over them, and they were really helping him. I say was because his PT, Ms. Eileen said to have them tweeked a little bit so now we are waiting to get them back, she knows best on how they would benefit Alec, she is wonderful, we are really luck to have such amazing and caring people in our lives.
His speech I think has improved, seems a bit clearer.
Well he is calling me, I'll try to update later!
Bye for now.
Alec got his braces for his legs and right hand. His braces are sooo cool they have spiderman all over them, and they were really helping him. I say was because his PT, Ms. Eileen said to have them tweeked a little bit so now we are waiting to get them back, she knows best on how they would benefit Alec, she is wonderful, we are really luck to have such amazing and caring people in our lives.
His speech I think has improved, seems a bit clearer.
Well he is calling me, I'll try to update later!
Bye for now.
Monday, July 14, 2008
Almost Home
Well we are still in ICU at the momment. We were going to be released today but then there was some blood pressure issues, and the equipment couldn't be delivered to my house today; I want a pulse ox and oxygen on hand "just in case".
A couple of things to vent about, there is this really stupid rule that from 8-9 pm you have to leave the ICU. I mean how do you tell a parent who has a child in the ICU that you have to leave while we change shifts, I mean how rediculous. I brought Alec's wheelchair to his room today and took him for a stroll around the floor to get him out of his jail cell of a room. He was happy to be out for a little bit but very upset when I told him that we weren't going home today. As I strolled through the floor I passed other patients on vents and my heart crumbled. Why, why would God let this happen to these innocent little babies and let criminals roam the streets, I don't understand this.
In any case not to jump around from one thing to another but we did manage to avoid a tracheotomy, I don't remember if I mentioned this before but the PICU Dr. wanted Alec to get one and his HEMOC Dr, Dr. Atlas said he wants to avoid it for now but he will most likely need one in the future. Sorry but I'm not a beliver of that, don't get me wrong I fully agree with Dr. Atlas in this instance except for the future thing. I feel therapy will help him, there is something that will help him I know it. If he was to get the trach he wouldn't be able to talk.
He is so happy these days playing with his cards Pokemon and Star Wars, in the box out of the box, he is so funny and Connect 4. His fine motor skills in his left hand are really good, I'm impressed. We have to work on the right hand though, all in time, we have plenty of it.
He wants to get home and see his friends, I asked him who he wants to play with first and he said all of them, with a smile :0)
He is still tube feeding through the ng, we are avoinding the g-tube for now (surgically placing a feeding tube directly into his stomach) it requires intubation and the last time he was extabated all the drooling started, urrrgh!
Okay lets see what else oh, they started him on robotal, sorry not sure of spelling to help dry up his secreations but I am a little nervous about this drug, it doesn't just dry him up it can thicken up the saliva making it difficult for him to cough up, hmm not too samrt so we'll see I might have to do some mommy tweaking medicines when we get home. We are going to start up his blood pressure med again, its a low dose and it's better to be safe than sorry hence the stupid steriod. Well thats where we are now. Say your prayers and kiss your kids, remember the power of positive thinking is the only way to see the light, tears are okay to shed as long as they are tears of happiness, he is still with us, he can't walk without assitance but someday he WILL, he can't chew and swallow food but someday he WILL, and his speech is slured but someday he'll be writing speeches, his right hand is week but someday he will throwing 90 mph fast ball with it.
Goodnight to all!
A couple of things to vent about, there is this really stupid rule that from 8-9 pm you have to leave the ICU. I mean how do you tell a parent who has a child in the ICU that you have to leave while we change shifts, I mean how rediculous. I brought Alec's wheelchair to his room today and took him for a stroll around the floor to get him out of his jail cell of a room. He was happy to be out for a little bit but very upset when I told him that we weren't going home today. As I strolled through the floor I passed other patients on vents and my heart crumbled. Why, why would God let this happen to these innocent little babies and let criminals roam the streets, I don't understand this.
In any case not to jump around from one thing to another but we did manage to avoid a tracheotomy, I don't remember if I mentioned this before but the PICU Dr. wanted Alec to get one and his HEMOC Dr, Dr. Atlas said he wants to avoid it for now but he will most likely need one in the future. Sorry but I'm not a beliver of that, don't get me wrong I fully agree with Dr. Atlas in this instance except for the future thing. I feel therapy will help him, there is something that will help him I know it. If he was to get the trach he wouldn't be able to talk.
He is so happy these days playing with his cards Pokemon and Star Wars, in the box out of the box, he is so funny and Connect 4. His fine motor skills in his left hand are really good, I'm impressed. We have to work on the right hand though, all in time, we have plenty of it.
He wants to get home and see his friends, I asked him who he wants to play with first and he said all of them, with a smile :0)
He is still tube feeding through the ng, we are avoinding the g-tube for now (surgically placing a feeding tube directly into his stomach) it requires intubation and the last time he was extabated all the drooling started, urrrgh!
Okay lets see what else oh, they started him on robotal, sorry not sure of spelling to help dry up his secreations but I am a little nervous about this drug, it doesn't just dry him up it can thicken up the saliva making it difficult for him to cough up, hmm not too samrt so we'll see I might have to do some mommy tweaking medicines when we get home. We are going to start up his blood pressure med again, its a low dose and it's better to be safe than sorry hence the stupid steriod. Well thats where we are now. Say your prayers and kiss your kids, remember the power of positive thinking is the only way to see the light, tears are okay to shed as long as they are tears of happiness, he is still with us, he can't walk without assitance but someday he WILL, he can't chew and swallow food but someday he WILL, and his speech is slured but someday he'll be writing speeches, his right hand is week but someday he will throwing 90 mph fast ball with it.
Goodnight to all!
Tuesday, July 8, 2008
ICU
Well I felt like a ping pong ball yesterday, we were moved from Med 3 to our HEMOC floor on med 4, only to be moved 3 hours later to Med 2, ICU. Alec had some awake periods but not speaking, he is also unresponsive to neuro checks, he doesn't squeeze your hands, I mean he knows these tests and would do the in his sleep.
He needs an MRI but there is major concern about sedation with his breathng and lethargy.
He was given a small dose of decadrone the "evil" drug, last night, urrgh! But if he needs it, he needs it. I am not sure what the plan is for today, ICU Dr.'s want an MRI which I think is really necessary, something is going on. He had an chest x-ray, there was fear of a lung collapse but all looked okay but concern he is not taking in enough oxygen. I really didn't want the chest x-ray, As a parent to keep subjecting him to radiation with all he has gone through, I can't even tell you how much I cringe and my heart crumbles and aches and stomach twist during every ctscan and xray, I mean this is my baby, my perfect little angel I carried for 9 months, my little boy who has done nothing wrong except be a child, an amazing one at that! He takes on everything thrown at him and doesn't resist one bit. It's not fair, it's just not fair!!
His HEMOC team thinks he just needs the steroids, but why?? How long can he go on with the steroids for. Endocin checked his cortisol, I was so hoping it was that and it was fine. Neuro tapped his shunt, but feel its not related, so what is it, whats going on?
He was also scoped by ENT and they saw some inflamation in the back of the throat, but the decadrone would help that. Also he is still on ng tube feeds, but there is some g- tube talk now, it would help his passage way and think that is smart to consider. Even though he is still seeing a swallow thereapist who knows how long it will take.
I'll update later, hopefully with some answers.
Pray hard,
Amy
He needs an MRI but there is major concern about sedation with his breathng and lethargy.
He was given a small dose of decadrone the "evil" drug, last night, urrgh! But if he needs it, he needs it. I am not sure what the plan is for today, ICU Dr.'s want an MRI which I think is really necessary, something is going on. He had an chest x-ray, there was fear of a lung collapse but all looked okay but concern he is not taking in enough oxygen. I really didn't want the chest x-ray, As a parent to keep subjecting him to radiation with all he has gone through, I can't even tell you how much I cringe and my heart crumbles and aches and stomach twist during every ctscan and xray, I mean this is my baby, my perfect little angel I carried for 9 months, my little boy who has done nothing wrong except be a child, an amazing one at that! He takes on everything thrown at him and doesn't resist one bit. It's not fair, it's just not fair!!
His HEMOC team thinks he just needs the steroids, but why?? How long can he go on with the steroids for. Endocin checked his cortisol, I was so hoping it was that and it was fine. Neuro tapped his shunt, but feel its not related, so what is it, whats going on?
He was also scoped by ENT and they saw some inflamation in the back of the throat, but the decadrone would help that. Also he is still on ng tube feeds, but there is some g- tube talk now, it would help his passage way and think that is smart to consider. Even though he is still seeing a swallow thereapist who knows how long it will take.
I'll update later, hopefully with some answers.
Pray hard,
Amy
Sunday, July 6, 2008
Possibly Home Bound
Well after a rough night, concerns with Alec retaining alot of fluid I contacted the fellow on call and asked for some tests to be run to look at his kidney functions and he was going to order a lasik, it will make him get rid of the excess fluid and to heplock him, take him off iv fluids for a bit see if that helps with the swelling, retaining fluid.
ENT was in this morning to see him, good news all looks okay from their point of view, s02 is good in the 90's.
Oh, and he did get sick last night so they stopped his feeds, strange. Only happened once, but it happened and Mark said quite alot.
He will be start zantac today for his belly. Mark just phoned me about his creatnine and it is low, .29 and thats down from .32 on June 22nd. We have tyo wait and see what the HEMOC team says about it.
I meet with a urologist this week which is good so we can see whats going on.
Well gotta run, heading up to the hospital.
ENT was in this morning to see him, good news all looks okay from their point of view, s02 is good in the 90's.
Oh, and he did get sick last night so they stopped his feeds, strange. Only happened once, but it happened and Mark said quite alot.
He will be start zantac today for his belly. Mark just phoned me about his creatnine and it is low, .29 and thats down from .32 on June 22nd. We have tyo wait and see what the HEMOC team says about it.
I meet with a urologist this week which is good so we can see whats going on.
Well gotta run, heading up to the hospital.
Saturday, July 5, 2008
Another Holiday Spent at LIJ
Well Alec is doing better, well with the fevers anyway. His blood pressure has been great lately, and I stopped his blood pressure meds when I got word that the MRI showed nothing touch the brain stem.
Also, we are off of the "evil" decadrone.
His breathing has improved, he is not making that sighing noise anymore, he is still sleeping alot though. I think it is coupled with a few factors, first- he is off of the decadrone so he is out of that insomnia state of mind, plus- he is a six year old boy presented with a fever, so something viral going on. And also, he's on vanco and needs to be premedicated wih benedryl and tylonol. So this is the issue, no fevers, but is it because he's getting tylonol every 8 hours, hmm. And bennedryl knocks him out to begin with and now through tylonol and sickness in the game, well there ya go.
ENT was in to see him, Mark was there and I guess there was some mention of apnea?? He was scoped but the ng tube prevented a complete diagnosis. Then some mention of puting him back on decadrone- NOOOOOOOO!
Urghhh, it's not gonna happen. A sleep study needs to be done to rule out some of these findings. I also want to meet with his ENT in Pt Jefferson also to get his input.
Alec had a ct scan of the brain and abdomen done yesterday as well. The ct of the brain looked great, even better than the previous one, they keep getting better and better, thank you HBOT :) And the abdominal scan looked fine.
I met with another opthomologist this past week also and she concurs that Alec is legally blind. He has optic atrophy, he only see's light after about 15 feet. I wish I could see what he see's because sometimes I am surprised at what he see's after his dx.
He still puts his head down alot, I wish he would lift it more, all in time. He started swallow therapy, and the vitastim to help him with sensation. I really hope this helps him.
Not this coming week but the following he will start to get the vitastim therapy on his lips to help with his drooling, it will teach him to keep his mouth closed more.
Well I must leave you now, Mark just called and has me very concerned, I have to call Med 4. Be in touch later.
Amy
Also, we are off of the "evil" decadrone.
His breathing has improved, he is not making that sighing noise anymore, he is still sleeping alot though. I think it is coupled with a few factors, first- he is off of the decadrone so he is out of that insomnia state of mind, plus- he is a six year old boy presented with a fever, so something viral going on. And also, he's on vanco and needs to be premedicated wih benedryl and tylonol. So this is the issue, no fevers, but is it because he's getting tylonol every 8 hours, hmm. And bennedryl knocks him out to begin with and now through tylonol and sickness in the game, well there ya go.
ENT was in to see him, Mark was there and I guess there was some mention of apnea?? He was scoped but the ng tube prevented a complete diagnosis. Then some mention of puting him back on decadrone- NOOOOOOOO!
Urghhh, it's not gonna happen. A sleep study needs to be done to rule out some of these findings. I also want to meet with his ENT in Pt Jefferson also to get his input.
Alec had a ct scan of the brain and abdomen done yesterday as well. The ct of the brain looked great, even better than the previous one, they keep getting better and better, thank you HBOT :) And the abdominal scan looked fine.
I met with another opthomologist this past week also and she concurs that Alec is legally blind. He has optic atrophy, he only see's light after about 15 feet. I wish I could see what he see's because sometimes I am surprised at what he see's after his dx.
He still puts his head down alot, I wish he would lift it more, all in time. He started swallow therapy, and the vitastim to help him with sensation. I really hope this helps him.
Not this coming week but the following he will start to get the vitastim therapy on his lips to help with his drooling, it will teach him to keep his mouth closed more.
Well I must leave you now, Mark just called and has me very concerned, I have to call Med 4. Be in touch later.
Amy
Tuesday, July 1, 2008
WOW!! Time flies, huh. I have been wanting to update this blog for weeks now. Great news, the brain swelling has decreased and there is nothing touching the brainsetem. The scare tissue from radiation has decreased in size and pulled away from the brain stem. What does this mean you ask, it's working whoo, hoo!!!
Eating is still another story we are seeing a swallow therapist to reteach Alec how to chew and swallow so he continues to get fed though his ng tube and helps me puree his foods.
Ughh, another story though, it likes to clog :( but the nurses gave me a little secret, gingerale, and guess what it works!! Thanks girls. Those HEMOC girls, so smart.
I know this is short and sweet but I have to run out, what else is new though. I have uploaded some new photos though.
Eating is still another story we are seeing a swallow therapist to reteach Alec how to chew and swallow so he continues to get fed though his ng tube and helps me puree his foods.
Ughh, another story though, it likes to clog :( but the nurses gave me a little secret, gingerale, and guess what it works!! Thanks girls. Those HEMOC girls, so smart.
I know this is short and sweet but I have to run out, what else is new though. I have uploaded some new photos though.
Sunday, May 25, 2008
So Much To Report
Alec has really been through so much this past month. Well we started hyperbaric treatments and after 4 treatments on Mother's Day, May 11th as we were wondering through the mall in Smithtown picking out some baseball gear from Kevin Alec just happened to have taken his hat off to adjust it. Weird I thought so I peeked around at the back of his head and he had a huge hematoma protruding right along his center incision from his resection and decompression.
We dropped everything and rushed him to Stony Brook, it was the closest hospital. I ran into the ER with him and we were in a private room in minutes and a ct scan was being ordered. He wasn't in any immediate pain then but did start to complain about a headache. We got into the ct room where I met my friends brother Chris for the first time who was our tech. In any case, we got Alec on the table and was trying to position him and he screamed like no tomorrow.
We were taken back to the er waiting room and neruo surgery was contacted. I was holding him in my arms and the were connecting all his leads and he just passed out. He went from screaming to sleeping and lead weight in minutes. Mark and I were trying to wake him up and he wouldn't wake up. His respiratory rate dropped and they have to intabate him right then. He had stopped breathing and was solely on a respirator.
He was in the OR in about an hour. This one idiot tried telling us it was tumor. Dr. Gutman came in and said it was a hemorrhage.
Alec was taken into the or stat and the blood clots were removed and blood vessels tied up. He came out of the o.r. breathing on his own, which was the biggest concern.
The next day we were told that the shunt has turned against him and was draining to much and was causing the dura to separate from the brain/ skull region and was pressing into the brainstem as he was bleeding on the outside.
We headed back to the o.r. again because the ct scan revealed he was still bleeding. More clots removed, shunt revised with a programmable one and burr holes drilled in his skull to sew up the dura.
Alec's right side had been completely effected. He had strength but a hard time making the brain and movement connection. He is unable to stand on his feet flat, he pigeon toes his right leg, of course minimal pressure is put on his legs because he is still unable to walk.
Released from the hospital and a couple of days later fever, vomit and headache complaints. Back to ER, now meanwhile he finally was weaned off the decadrone, so of course he was given a stress dose of it. Chest x-ray showed something but nobody seemed able to give us a straight yes or no pneumonia. I noticed that his eating habits had changed everytime he was eating he would cough. He couldn't so much as take his medicine through a syringe without me physically coaching his lips through.
Speech came up and took him down for a barren and swallow test. As it turns out he is aspirating. Meaning food and drinks are going into his lungs instead of his esophagus and also up his nose cavity. They stopped the test immediately and put him on NPO and tube feeds only. He is drooling profusely and aspirating what saliva does go down.
Friday morning more changes occurred with is eyes, they started moving back and forth very quickly in sink like windsheild wipers and his speech declined even more. Now at this point I am having a hard time understanding him. A ctscan was ordered and there is fluid in the right hemisphere of the cerebellum. There was some concern of a stroke considering the new symptoms. We were moved from the general hospital floor to PICU and an MRI and MRA was ordered.
Good News, stroke ruled out, radiation necrosis is once again causing him problems, it's pushing on to the brain stem. We were told that there is nothing that can be done about it and as of yesterday neurosurgery at Stony Brook cleared us to leave, now I wasn't up there that morning Mark stayed the night and spoke to the Dr. when I got up there and saw what condition he was in, I was very uneasy about taking him home.
We had him transferred to Schneider because we felt like Stony Brok was like well thats it, it is what it is. So upon arriving at Schneider we were set up in Med 4 and quickly moved down to PICU because he was sleeping so much and his neurological state had changed and declined so much in the past 24 hours.
A ct scan was done and showed some swelling but nothing alarming, that alarming part was when they did the x-ray to lower his shunt we found that his shunt is set at 30 instead of 180. Besides this shunt being a royal pain in the a_ _ because we constantly have to take x-rays to see if it's in position, now it might even be malfunctioning. They tapped his shunt and drew out csf fluid to check for white blood cells and protein to check for infection. But after they took 6cc he seemed to have woken up a bit.
I don't know we are at a stand still right now and again with no answers.
We were also told that there is some concern that there might be tumor within the necrosis considering how bad he has it. I was also told that to remove the necrosis was not really an option.
Well this is where I must leave you, I am exhausted and need to get some shut eye for tomorrow.
Thank you Margie at Center Moriches Library for the books, I am still reading them, I had a 911 call to the library to self educate myself on what the heck is going on. And thank you to our friends and family for being there when we really did and do need you.
xoxox
Amy
We dropped everything and rushed him to Stony Brook, it was the closest hospital. I ran into the ER with him and we were in a private room in minutes and a ct scan was being ordered. He wasn't in any immediate pain then but did start to complain about a headache. We got into the ct room where I met my friends brother Chris for the first time who was our tech. In any case, we got Alec on the table and was trying to position him and he screamed like no tomorrow.
We were taken back to the er waiting room and neruo surgery was contacted. I was holding him in my arms and the were connecting all his leads and he just passed out. He went from screaming to sleeping and lead weight in minutes. Mark and I were trying to wake him up and he wouldn't wake up. His respiratory rate dropped and they have to intabate him right then. He had stopped breathing and was solely on a respirator.
He was in the OR in about an hour. This one idiot tried telling us it was tumor. Dr. Gutman came in and said it was a hemorrhage.
Alec was taken into the or stat and the blood clots were removed and blood vessels tied up. He came out of the o.r. breathing on his own, which was the biggest concern.
The next day we were told that the shunt has turned against him and was draining to much and was causing the dura to separate from the brain/ skull region and was pressing into the brainstem as he was bleeding on the outside.
We headed back to the o.r. again because the ct scan revealed he was still bleeding. More clots removed, shunt revised with a programmable one and burr holes drilled in his skull to sew up the dura.
Alec's right side had been completely effected. He had strength but a hard time making the brain and movement connection. He is unable to stand on his feet flat, he pigeon toes his right leg, of course minimal pressure is put on his legs because he is still unable to walk.
Released from the hospital and a couple of days later fever, vomit and headache complaints. Back to ER, now meanwhile he finally was weaned off the decadrone, so of course he was given a stress dose of it. Chest x-ray showed something but nobody seemed able to give us a straight yes or no pneumonia. I noticed that his eating habits had changed everytime he was eating he would cough. He couldn't so much as take his medicine through a syringe without me physically coaching his lips through.
Speech came up and took him down for a barren and swallow test. As it turns out he is aspirating. Meaning food and drinks are going into his lungs instead of his esophagus and also up his nose cavity. They stopped the test immediately and put him on NPO and tube feeds only. He is drooling profusely and aspirating what saliva does go down.
Friday morning more changes occurred with is eyes, they started moving back and forth very quickly in sink like windsheild wipers and his speech declined even more. Now at this point I am having a hard time understanding him. A ctscan was ordered and there is fluid in the right hemisphere of the cerebellum. There was some concern of a stroke considering the new symptoms. We were moved from the general hospital floor to PICU and an MRI and MRA was ordered.
Good News, stroke ruled out, radiation necrosis is once again causing him problems, it's pushing on to the brain stem. We were told that there is nothing that can be done about it and as of yesterday neurosurgery at Stony Brook cleared us to leave, now I wasn't up there that morning Mark stayed the night and spoke to the Dr. when I got up there and saw what condition he was in, I was very uneasy about taking him home.
We had him transferred to Schneider because we felt like Stony Brok was like well thats it, it is what it is. So upon arriving at Schneider we were set up in Med 4 and quickly moved down to PICU because he was sleeping so much and his neurological state had changed and declined so much in the past 24 hours.
A ct scan was done and showed some swelling but nothing alarming, that alarming part was when they did the x-ray to lower his shunt we found that his shunt is set at 30 instead of 180. Besides this shunt being a royal pain in the a_ _ because we constantly have to take x-rays to see if it's in position, now it might even be malfunctioning. They tapped his shunt and drew out csf fluid to check for white blood cells and protein to check for infection. But after they took 6cc he seemed to have woken up a bit.
I don't know we are at a stand still right now and again with no answers.
We were also told that there is some concern that there might be tumor within the necrosis considering how bad he has it. I was also told that to remove the necrosis was not really an option.
Well this is where I must leave you, I am exhausted and need to get some shut eye for tomorrow.
Thank you Margie at Center Moriches Library for the books, I am still reading them, I had a 911 call to the library to self educate myself on what the heck is going on. And thank you to our friends and family for being there when we really did and do need you.
xoxox
Amy
Saturday, April 19, 2008
Quick Update
Okay good news, NO seizures. An eeg was done and Alec's brain waves are a little abnormal but nothing more than you would see in someone who is experincing migraines. He was put back on the "evil" drug decadrone and is doing so much better. The shunt is fine no malfunction or infection, thank God!
An MRI was done and there is more necrosis from radiation still forming. The radiologist said he has never seen so much necrosis develop in a child before, the hyperbaric oxygen tank is a definite option for Alec to help repair some of the radiation damage. I meet with the Dr. at North Shore Plainview in a week. I was already informed that there is a good chance insurance won't cover it but we'll find away to get him what he needs.
During his stay at St. Charles they had this tricycle with a high back belts and velcro on the pedals and he loved to ride it, we are looking into getting his one for home, I will post a picture of it when I down load it from my phone.
He is coming home today :) We have the option to transfer him back to St. Charles but he needs to be home for a little bit, he needs to see and apend time with Kevin, they miss each other so much.
Kevin is doing awesome at baseball, he had the best hit the other day. He just finished a report on Scotland, his favorite part of course was the Loch Ness monster. He typed everything himself, I helped him make photo copies but he did it all himself, I am so proud of him!
Well till next time.
Special prayer request to some friends we met along the way:
Katie, who just passed away Tues. from a prot infection while battleing Leukemia
Delton, Who is on a resporator in PICU, his lungs have failed on him during transplant he was our neighbor in transplant
Jacob, A special little boy battling medulloblastoma
Danny, Our spunky little friend who just keeps on going!
Hannah, our special little fighter, who just got her port out and wating for the Dr.'s to send it to her, I think she is going to ride her horse over it :)
Stanley, A trooper
Tia, who finished her chemo, you go girl!!
And all our HEMOC friends, there are alot of newly diagnosed cancers up on Med 4 during our stay, it's not fair.
Chin up keep the faith!
An MRI was done and there is more necrosis from radiation still forming. The radiologist said he has never seen so much necrosis develop in a child before, the hyperbaric oxygen tank is a definite option for Alec to help repair some of the radiation damage. I meet with the Dr. at North Shore Plainview in a week. I was already informed that there is a good chance insurance won't cover it but we'll find away to get him what he needs.
During his stay at St. Charles they had this tricycle with a high back belts and velcro on the pedals and he loved to ride it, we are looking into getting his one for home, I will post a picture of it when I down load it from my phone.
He is coming home today :) We have the option to transfer him back to St. Charles but he needs to be home for a little bit, he needs to see and apend time with Kevin, they miss each other so much.
Kevin is doing awesome at baseball, he had the best hit the other day. He just finished a report on Scotland, his favorite part of course was the Loch Ness monster. He typed everything himself, I helped him make photo copies but he did it all himself, I am so proud of him!
Well till next time.
Special prayer request to some friends we met along the way:
Katie, who just passed away Tues. from a prot infection while battleing Leukemia
Delton, Who is on a resporator in PICU, his lungs have failed on him during transplant he was our neighbor in transplant
Jacob, A special little boy battling medulloblastoma
Danny, Our spunky little friend who just keeps on going!
Hannah, our special little fighter, who just got her port out and wating for the Dr.'s to send it to her, I think she is going to ride her horse over it :)
Stanley, A trooper
Tia, who finished her chemo, you go girl!!
And all our HEMOC friends, there are alot of newly diagnosed cancers up on Med 4 during our stay, it's not fair.
Chin up keep the faith!
Monday, April 14, 2008
Seizures??
Well we are settled in here after our transfer from St, Charles to Schneider's. Alec spiked a fever yesterday and is having alot of head pain. St. Charles, a wonderful hospital for his rehabilitation is not equipped to handle his required medical necessities. They tried to access his port and was unsuccessful after many attempts. They did however send him down for a CtScan which revealed the usual large ventricles.
Alec followed the pattern he did last month with the not wanting to sit up, sleeping all day, and crying. Only this time he is also experiencing quick tremors and then cries.
Neauro
surgery was just up here and said they don't think it's a shunt
malfunction because his scans are the same as they were last month
after the shunt placement. They are going to do a series of x-rays
tomorrow to determine if there is any breaks in the shunt down the
path, not happy about the continued exposure to radiation! She also
mentioned after observing his tremors that he might be having mild
seizures; she is going to set up an eeg to be done.
Alec asked me a
very disturbing question tonight, he asked me how to sleep? What does
he mean, he told me he was tired so I told him to go to sleep, and he
said how?? I am not sure what he was referring to, was it because the tremors keep waking him up or is it something more?
Well am looking at my baby resting so comfortable right now and feel as always content and worried all in one.
I'll post more as I find it out.
Alec followed the pattern he did last month with the not wanting to sit up, sleeping all day, and crying. Only this time he is also experiencing quick tremors and then cries.
Neauro
surgery was just up here and said they don't think it's a shunt
malfunction because his scans are the same as they were last month
after the shunt placement. They are going to do a series of x-rays
tomorrow to determine if there is any breaks in the shunt down the
path, not happy about the continued exposure to radiation! She also
mentioned after observing his tremors that he might be having mild
seizures; she is going to set up an eeg to be done.
Alec asked me a
very disturbing question tonight, he asked me how to sleep? What does
he mean, he told me he was tired so I told him to go to sleep, and he
said how?? I am not sure what he was referring to, was it because the tremors keep waking him up or is it something more?
Well am looking at my baby resting so comfortable right now and feel as always content and worried all in one.
I'll post more as I find it out.
Tuesday, April 8, 2008
St. Charles Rehab Update
Well Alec has gained a whopping 12 pounds, he is weighing in at 48 pounds :0) His appetite won't quit, eating and swallowing is no longer an issue. He wants to go back to school in the worst way. Soon my baby, I am hoping by the end of the year to have Alec in a "classroom setting" if only for an hour a day. He really needs the interaction.
We had a beautiful visitor, our friends Hannah and Kim. Hannah and Alec met up at Schnieder and had the same surgeon and Oncologist strange enough :) You see her here at this posting. She had her port taken out today and was so brave, we are so proud of you Hannah!
Alec has a little crush I think, it's really cute, he picked out this heart bag and filled it with some of his favorite things, he told me he wants to give Hannah a kiss on her cheek, LOL He even specified her cheek, I can't even tell you how cute it sounded.
He is working hard at rehab, it's hard on him though, he gets tired so easily. He is getting into a routine now though. We told him to be like Rocky and he makes this rrrr face it's so cute.
You will see him here with a smile on his face with his PT, Bill; but trust me he is not always smiling, although today was a good day for him! He is not even close to walking on his own yet or even with a walker, he has alot of trunk weakness.
Speech is going well, we are working on having him speak louder; he yells into his American Idol microphone we call it. OT is hard because he has the shakes still really bad in both his hands, arms and head.
He has been enjoying the wii lately though, the use it as therapy, amazing therapy at that, WOW! We might get him one for home, I heard they were sold out for a while but my friend Kim mentioned Walmart. We have time yet though before he comes home; he stopped playing x-box a while ago and won't play with Kevin, but with the wii he just moves his hand and the character does the move it's alot easier for him and work his fine and gross motor skills. His favorite games so far are Spongebob (of course) Atlantis, and Shrek.
We will be in the hospital I think for a few more weeks. He is just starting to get the schedule down and be cooperative, they don't want to rush us out too soon when a longer stay he will benefit from.
Well enjoy the pictures!
Butterflies Are In
Alec was over whelmed by all the butterflies, he of course had some favorites, an E.T. butterfly, a mobile of butterflies and of course their were some amazing Star Wars butterflies. There are just too many to count to give you a grand total, but thank you ALL for your support!
Thursday, March 27, 2008
Getting Ready For Another Hospital Stay
First I want to apologize to all my family and friends for not updating sooner. My days are filled with getting Alec up on his feet and caring for Sean who is peaking a year old already, YIKES! In any case all good news, Alec's feeding tube was pulled last week. He is eating really well, although it could still be a decadrone effect, but we'll take it. We are off chemo for now. Biopsy on the brain is a definite negative for metastases. We are not sure about the c-spine though because once again we can't biopsy it. He will have a Ctscan in about 2 weeks and an MRI in about 2 months, we will be watching very closely.
He was put back on decadrone; a steroid not, not the kind you are thinking of that athletes abuse this type has the opposite effect and tears down the muscle walls and depletes vitamins and minerals. Sounds really bad I know but when we were weaning him off this he experienced really bad headaches and was crying. The wean was to fast and he still had meningitis, not bacterial so please don't get nervous. He still has some inflammation and water in the brain and just needs a little more time. In another week we are going to start to wean him again but at a much slower rate. He complained of a headache today on and off, but hey we all get headaches right. He appeared comfortable though.
His current meds are as follows:
Acyclovir 3x a day (prophylactic from transplant)
Bactrim Mon-Wed-Fri 2x a day (prophylactic for pneumonia)
Reglan 2x a day (helps move his digestion faster and helps with his vomiting)
Deacadron 2x a day (the evil steroid)
Holistic meds
Thymus spray 2x a day supports thymus gland which might have been damaged from radiation.
Selenium 1x day, helps inflammation
Ashwaganda 1x a day promotes stem cell production and brain repair, neurologically
Bosweilien 1x a day, for inflammation
NOW multivitamin 2x a day this is given 2 times a day because of his decadrone, sometimes altered though is he has a can of Nutren Jr.
Monavie (acaiberry)antioxident, immune support
Goji, immune support and known for it's happy berry effect
CodLiver Oil, in a yummy berry flavor he really likes this one
Mushroom extracts from 18 different types, ya 18 who knew there has been studies in which tumors have shrunk from using this method alone!
PaleoMeal, extra protein to replace what the decadrone is doing
GreensFirst, has grass, dandelion, anything you find growing out of the ground is in it.
Flavin7, berry extracts from Hungary
Flaxseed Oil
We are being admitted into St. Charles on Monday at there rehabilitation center. Alec can't walk at all, or even balance as he was able to do before. His neck muscles are still really weak from his craniotomy. He has a hard time reaching for things or even holding onto things he shakes a jerks his hands alot. He still wants to do everything himeself though, go him. He knows he needs help and he is fine with it, but wants that feeling of accomplishment. We will be at St. Charles for about 2 weeks. He will be getting intense physical therapy as well as occupational and speech.
He seems to be okay with going into the hospital, just concerned about getting his bologna we get at Wholly Natural, the local holistic store in East Moriches I shop at for him. I do get to Trader Joe's also, but for a quick pick up it's nice and close. Tonight when I was tucking him in he said, "make sure you bring enough food for the hospital". He has accepted his diet and doesn't mind it.
As for the butterflies, OH MY GOSH, I still don't have a total but tomorrow I will post a picture of Alec with all his butterflies. There has to be close to 2,000 of them though. Aquebogue Elem, our cousins friends and family. North Fork Bank, well Capital One now :0) it is amazing how many people showed there support. Thank you.
Well I need to go fold some laundry, what else is new.
Bye for now,
Amy
He was put back on decadrone; a steroid not, not the kind you are thinking of that athletes abuse this type has the opposite effect and tears down the muscle walls and depletes vitamins and minerals. Sounds really bad I know but when we were weaning him off this he experienced really bad headaches and was crying. The wean was to fast and he still had meningitis, not bacterial so please don't get nervous. He still has some inflammation and water in the brain and just needs a little more time. In another week we are going to start to wean him again but at a much slower rate. He complained of a headache today on and off, but hey we all get headaches right. He appeared comfortable though.
His current meds are as follows:
Acyclovir 3x a day (prophylactic from transplant)
Bactrim Mon-Wed-Fri 2x a day (prophylactic for pneumonia)
Reglan 2x a day (helps move his digestion faster and helps with his vomiting)
Deacadron 2x a day (the evil steroid)
Holistic meds
Thymus spray 2x a day supports thymus gland which might have been damaged from radiation.
Selenium 1x day, helps inflammation
Ashwaganda 1x a day promotes stem cell production and brain repair, neurologically
Bosweilien 1x a day, for inflammation
NOW multivitamin 2x a day this is given 2 times a day because of his decadrone, sometimes altered though is he has a can of Nutren Jr.
Monavie (acaiberry)antioxident, immune support
Goji, immune support and known for it's happy berry effect
CodLiver Oil, in a yummy berry flavor he really likes this one
Mushroom extracts from 18 different types, ya 18 who knew there has been studies in which tumors have shrunk from using this method alone!
PaleoMeal, extra protein to replace what the decadrone is doing
GreensFirst, has grass, dandelion, anything you find growing out of the ground is in it.
Flavin7, berry extracts from Hungary
Flaxseed Oil
We are being admitted into St. Charles on Monday at there rehabilitation center. Alec can't walk at all, or even balance as he was able to do before. His neck muscles are still really weak from his craniotomy. He has a hard time reaching for things or even holding onto things he shakes a jerks his hands alot. He still wants to do everything himeself though, go him. He knows he needs help and he is fine with it, but wants that feeling of accomplishment. We will be at St. Charles for about 2 weeks. He will be getting intense physical therapy as well as occupational and speech.
He seems to be okay with going into the hospital, just concerned about getting his bologna we get at Wholly Natural, the local holistic store in East Moriches I shop at for him. I do get to Trader Joe's also, but for a quick pick up it's nice and close. Tonight when I was tucking him in he said, "make sure you bring enough food for the hospital". He has accepted his diet and doesn't mind it.
As for the butterflies, OH MY GOSH, I still don't have a total but tomorrow I will post a picture of Alec with all his butterflies. There has to be close to 2,000 of them though. Aquebogue Elem, our cousins friends and family. North Fork Bank, well Capital One now :0) it is amazing how many people showed there support. Thank you.
Well I need to go fold some laundry, what else is new.
Bye for now,
Amy
Tuesday, March 11, 2008
Home Sweet Home
We are home which is wonderful. Alec is doing well with his feeding tube. I have to hook him up at night and then 3 boluses during the day. He is eating, but very little. Today he slept alot, so much so that I phoned his neurologist. He isn't complaining of any headaches, but he is dizzy. He had an episode earlier where he kind of gazed out the window and I asked him if he was okay and he wasn't there with me, weird. And then he looked at me and didn't make eye contact, you could tell he was not feeling right. At that point he said he was dizzy. I took his temperature and it was normal. He can't sit without support, so I put his walker in front of him at the kitchen table to act as a barrier and a pillow behind him and a no slip pad on the chair (we have wooden chairs, very slippery). It is working out very well, he was drawing Darth Vader yesterday and Luke Skywalker, what else is new, my little Jedi.
Okay while I was typing this his neurologist phoned me back, she said he is probably still adjusting to the shunt and the pressure. When he gets up gravity takes over for the shunt.
Well my little man is calling me and Sean just woke up also, off I go. By the way I can't believe how many butterflies we have gotten. I havn't actually counted all of them yet but it's definitely in the neighborhood of 1,000+. Thank you so much! I don't think he has enough ceiling or wall space for them :0)
Okay while I was typing this his neurologist phoned me back, she said he is probably still adjusting to the shunt and the pressure. When he gets up gravity takes over for the shunt.
Well my little man is calling me and Sean just woke up also, off I go. By the way I can't believe how many butterflies we have gotten. I havn't actually counted all of them yet but it's definitely in the neighborhood of 1,000+. Thank you so much! I don't think he has enough ceiling or wall space for them :0)
Tuesday, March 4, 2008
GREAT NEWS!!!
My prince has been getting comfort from Fentinol, not sure if my spelling is correct. We have gotten some really great news. Dr. Egnor came out of surgery very pleased, as it turns out they had to reopen his original incision sight, cut away bone from his skull in the cerebellum region to allow room for his brain to breathe so to speak because he was severely inflamed. Dr. Egnor feared that the swelling was pushing on his brain stem which could have resulted in death.
Of course these findings only came after Mark and I demanded an MRI because he was in pain. Then the surgical procedure changed from 3rd ventric with possibility of a shunt to a needed craniotomy decompression. We were hoping that this would solve the hydrocephalus but it doesn't look promising. We have O.R. time scheduled for Thurs. for the possible shunt.
In any case the most awesome news is Dr. Egnor reported to us immediately after surgery that he feels strongly it is NOT recurring tumor in the brain. That it is as Dr. Atlas and Dr. Gardner from NYU concurred, it is radiation scar tissue.
That's right you read correctly NOT :0)
We are still waiting for the official pathology report to come back but Dr. Egnor said there was very little blood, and recurring tumor would have bled. For those of us who are unfamiliar with solid tumors, they have blood vessels that feed off of mostly sugar and foreign chemical hence the reason for low sugar, low carb and organic koscher diet.
Also, report is in on spinal fluid:
NEGATIVE for disease, :0)
We are heading in a really good direction. His wholistic medicine will continue. We still don't know what the spinal lesion is. It can't be biopsied, but it has been stable.
Alec had an ingie tube dropped today (feeding tube) he tolerated pretty well. This was a long time decision coming. Since he always seems to be NPO he hasn't eaten in 4 days. This is a really good thing though. He will be getting his nutrition while he sleeps, and we will encourage his eating when he is awake. I want him released from the hospital with the tube for a little while; so I can do tube feedings at home with him as well for a little bit til his weight comes up.
Thank you for all the prayers that have been said and candles that have been lit. I know God can't ignore us our prayers stretch from Long Island to Connecticut to North Carolina to Vegas to California even as far as Ireland.
Saturday, March 1, 2008
1 year later and here we are again
Here we are exactly one year later to the date, had this not been a leap year. Alec was rushed to the hospital after waking up with an excruciating headache. Alec never complains about pain, EVER! He is so amazingly strong, so when he said his head was hurting while in tears and holding his head we knew something was wrong.He was admitted immediately and taken for a CTScan, he has Hydrocephalus aka, water on the brain.
He was given Morphine for the pain and brought into the operating room within 2 hours. The Dr. put an external cathader from his brain to a drainage to releave the pressure as a temporary fix. He was scheduled for an exploration of another 3rd Ventriculostmy with the possibility of needing a shunt.
We were taken down to the OR and Alec decided he didn't want the procedure today and spiked a 103 fever from being normal the whole time, even from the ride from PICU to the OR normal. Of course the operation was postponed and here we sit in ICU until Monday, where he is scheduled once again to go into surgery.
He is not eating and had an awful reaction to the morphine. I demanded that it be stoped and him given Tylonol. He was irritable, whining, restless, his face broke out into a terrible itchy rash. After giving bennedryl and stopping the morphine he looked and felt alot better.
He is not eating that much, well really not at all. He was NPO yesterday because of the operation and by the time we got back to the room it was 4:00 pm and getting late, he had some Pediasure but vomited it up a short while later and of course the force from vommiting caused him some more head pain. I am going to start him back on the Reglan, it was working really well for him at home. It helps his gut move faster. Well I will try to update again later.
I got some beautiful butterflies from Florida, thank you Jake and Luke. Also from Cody, Marc, Greg, Aunt Irma, and Raol :0) must be a new family member.
They are hanging in his room already.
Take care.
Amy
PetScan Results
I know it's been a while since I updated, as usual there are not enough hours in the day. In any case the consensus is that the "uptake" that was noted from Alec's PetScan can still be scar tissue from radiation. The only was to know for sure is to continue to be scanned and monitored. Seeing how we have no previous PetScan to compare to, he could have had uptake the whole time. He will have another PetScan in about 6 weeks. I am not a big fan of this test as it produces radiation. Alec's Dr. feels and I quote with his heart to hearts that this is not a sign of recurring tumor. Alec, at the time was improving, walking better, balancing better, speaking better, all around improving.
Monday, February 18, 2008
Well we had a brief stay in the hospital last week. Alec ended up spiking a fever and with a mediport we can never chance it because we don't know if it is a line infection or not. Of course as usual though after spiking a 102+ fever Mark trecks out in the snow and sleet to Schnieder and upon arrival no fever. But his anc dropped to 575 from 1,400 earlier that day. He needed platelets and a blood transfusion during our stay though.
We were released on Friday and Alec had his PETscan. That was also a scary time. Not the scan itself, but what I encountered. For those who are unfamiliar with mediports, when not accessed heparin need to be put in the line to prevent clotting in the mediport or there would be big trouble and the line would be useless and have to be pulled.
In any case, I left him accessed when we were released from the hospital because we were going to get sleepy juice, aka sedation for the scan. I told the anesthesiologist while he was still sleeping he can deaccess him to avoid yet another painful ordeal. He agreed.
I was sitting in the waiting room and this feeling came over me, I can't describe this feeling, it was so intense, like someone was telling me not to have this man do that. So I interrupted the technician who was doing the scan because I wanted to stop the anesthesiologist from de accessing him. He opened the door and I told him nonchalantly to leave him accessed, just heplock him because we have some blood work to do over at Schneider’s, he said oh I was just going to flush him with saline and take the needle out I have no heparin. WHAT!!!!!!!!
I tried not to freak out but was ready to ring this guys neck, no heparin how he can not have any heparin on his little wheely cart. All that kept me positive was his platelet count was low. Then they had to transport us by ambulance over to Northshore hospital, the main entrance because we were over in the Feinstein bldg; and when we got there I told them I needed 5ml of heparin put in his mediport ASAP. Then a short time later we were released I drove like a maniac to clinic and had them pull out what they out in to make sure there was no clot in his line, then reflushed and heplocked.
Any how we are home safe and sound now, Kevin is sick though :0(
Alec is back on his GSF shots daily and his chemo is on hold until his counts rebound a bit. He is still on Bactrim, Acyclovir, Clyndomiacin, and all his wholistice drugs.
Well Sean is crying and Kevin needs a temp checked. Bye for now,
Amy
We were released on Friday and Alec had his PETscan. That was also a scary time. Not the scan itself, but what I encountered. For those who are unfamiliar with mediports, when not accessed heparin need to be put in the line to prevent clotting in the mediport or there would be big trouble and the line would be useless and have to be pulled.
In any case, I left him accessed when we were released from the hospital because we were going to get sleepy juice, aka sedation for the scan. I told the anesthesiologist while he was still sleeping he can deaccess him to avoid yet another painful ordeal. He agreed.
I was sitting in the waiting room and this feeling came over me, I can't describe this feeling, it was so intense, like someone was telling me not to have this man do that. So I interrupted the technician who was doing the scan because I wanted to stop the anesthesiologist from de accessing him. He opened the door and I told him nonchalantly to leave him accessed, just heplock him because we have some blood work to do over at Schneider’s, he said oh I was just going to flush him with saline and take the needle out I have no heparin. WHAT!!!!!!!!
I tried not to freak out but was ready to ring this guys neck, no heparin how he can not have any heparin on his little wheely cart. All that kept me positive was his platelet count was low. Then they had to transport us by ambulance over to Northshore hospital, the main entrance because we were over in the Feinstein bldg; and when we got there I told them I needed 5ml of heparin put in his mediport ASAP. Then a short time later we were released I drove like a maniac to clinic and had them pull out what they out in to make sure there was no clot in his line, then reflushed and heplocked.
Any how we are home safe and sound now, Kevin is sick though :0(
Alec is back on his GSF shots daily and his chemo is on hold until his counts rebound a bit. He is still on Bactrim, Acyclovir, Clyndomiacin, and all his wholistice drugs.
Well Sean is crying and Kevin needs a temp checked. Bye for now,
Amy
Please take a moment to print out, color, mail or drop off to me the butterfly. This is not just any butterfly, it represents brain tumor week in March. Please color not only for Alec, but for all those who have been effected by brain tumors. In memory for those loved ones we have lost and in honor of those ones who are still fighting and all those who are in remission but will spend the rest of their lives with uncertainty.
To dedicate your butterfly to a loved one please write their name on it. All the butterflies will be hung from the ceiling in Alec's room.
Lets get everyone involved schools, libraries, churches. At the end of the month I will post a picture of Alecs room along with the total number of butterflies.
Wednesday, February 6, 2008
Some Very Special Friends
I wanted to share with you just some of our very special friends we have met along the way. You hear me speak of them often. Hannah and Alec in the play room with Kim (Hannah's mom). Also our friend Stanley, Alec and Stanley enjoying a game of memory.
We had a lonnnnng day at clinic yesterday. Alec ended up needing a blood transfusion becuase his hemoglobin was low. He is transfused at 80 and below; below 20 for platelets.
He seems very tired today, he consumed about 800 calories, not nearly enough to make me happy. He didn't vommit as much today, I am trying to give him the phenergen every 6-8 hours.
While at clinic they drew his immune functions, again. No wonder he needed a blood transfusion, 8 vials whenever we walk in he door.
Being that he is not eating all that well, I wanted other tests run as well. A recheck on his cortisol which was 14.4, yeah!! And his albumin, copper, magnesium, calcium, and thyroid.
All came back fine, well no word on he copper or t-cells yet.
Well gotta run, chemo calling.
xoxo
We had a lonnnnng day at clinic yesterday. Alec ended up needing a blood transfusion becuase his hemoglobin was low. He is transfused at 80 and below; below 20 for platelets.
He seems very tired today, he consumed about 800 calories, not nearly enough to make me happy. He didn't vommit as much today, I am trying to give him the phenergen every 6-8 hours.
While at clinic they drew his immune functions, again. No wonder he needed a blood transfusion, 8 vials whenever we walk in he door.
Being that he is not eating all that well, I wanted other tests run as well. A recheck on his cortisol which was 14.4, yeah!! And his albumin, copper, magnesium, calcium, and thyroid.
All came back fine, well no word on he copper or t-cells yet.
Well gotta run, chemo calling.
xoxo
Saturday, February 2, 2008
MRI Results
I wish this posting contained better news. To date Alec's brain MRI's have been clear, that has changed. There is some patchiness in the cerebellar region which may represent radiation necrosis. Then slightly to the left of the medulla there is an abnormal supratentorial enhancement. It's noted as recurrent disease. The spinal lesion has not changed, it remains the same size.
His Dr. is calling these findings possibly radiation necrosis, or new tumor growth. The brain tumor board is meeting on Tues. to discus it further and to get other opinions on it. Meanwhile we are being told that he will be rescanned in another 6 weeks instead of 3 months. Then I was given some lame excuse that being he was scanned in another facility it makes it hard to compare.
Bull, pardon my hostility, but I hand delivered the scans. They have them how hard is it!!
In the interim I have been in touch with NYU again, and I am sending a copy of his scans to the Dr. we have been seeing there. She mentioned doing a PET scan to see if these new findings are in fact tumor regrowth or if it is in fact just radiation necrosis. Alec will be injected with a sugary substance, being that tumors feed off sugar the tumor would gobble up the sugar and highlight. Confirming or denying findings. This test was never discussed with us by his Dr. at Schneider.
I just feel they are giving up. The protocol he is on was because it was something discussed with NYU. I have lost all faith in Schneider Children's Hospital.
Meanwhile his spirits are great, his walking is great with help. His tick seems to be a bit more pronounced again. His hearing aids were readjusted agiain, Ihave to give them about a week, it has to do with compression his Dr. was telling me. He may need aids that don't compress as much. We will see how he does though.
I am going have his t-cells drawn in a couple of days, hopefully we will know by Friday how they are recouping.
His Dr. is calling these findings possibly radiation necrosis, or new tumor growth. The brain tumor board is meeting on Tues. to discus it further and to get other opinions on it. Meanwhile we are being told that he will be rescanned in another 6 weeks instead of 3 months. Then I was given some lame excuse that being he was scanned in another facility it makes it hard to compare.
Bull, pardon my hostility, but I hand delivered the scans. They have them how hard is it!!
In the interim I have been in touch with NYU again, and I am sending a copy of his scans to the Dr. we have been seeing there. She mentioned doing a PET scan to see if these new findings are in fact tumor regrowth or if it is in fact just radiation necrosis. Alec will be injected with a sugary substance, being that tumors feed off sugar the tumor would gobble up the sugar and highlight. Confirming or denying findings. This test was never discussed with us by his Dr. at Schneider.
I just feel they are giving up. The protocol he is on was because it was something discussed with NYU. I have lost all faith in Schneider Children's Hospital.
Meanwhile his spirits are great, his walking is great with help. His tick seems to be a bit more pronounced again. His hearing aids were readjusted agiain, Ihave to give them about a week, it has to do with compression his Dr. was telling me. He may need aids that don't compress as much. We will see how he does though.
I am going have his t-cells drawn in a couple of days, hopefully we will know by Friday how they are recouping.
Wednesday, January 30, 2008
Genetic Testing
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!
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!
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.
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