We are finally home agin from yet another hospital stay. Dr.'s still anxious to put Alec through another surgety, a shunt. He had an MRI that still revealed some swelling to the brain and radiation effects to the brain tumor site. Another spinal tap still negative for disease, thank goodness and very little pressure.
Alec continues to have a really hard time walking, he can only walk with help. His speech is still slured pretty bad, we often have to have him repeat himself. He is still trembeling in his hands and his head. His memory is shaddy to, he was upset today becase he couldn't remember how to play his all time favorite game, Lego Star Wars. I wonder if this is why he doesn't ask to play x-box any more. Even in the hospital he never asked for a game system. His memory is really bad. That is actually what prompted our hospital stay. He was on the kichen chair asking for a tissue (he has a little runny nose) so I wiped his nose and he pushed my hand away. He said No, a tissue, so I tried to wipe his nose again. He was really upset and started to cry, he said No, I want a tissue, so I thought I was giving him the wrong tissue, so I took his hand and said show me which one you want. He walked over to the Christmas tree and pointed to a candy cane.
Then in the car on the way to his holistic Dr. he kept asking for chicken nuggets in the diaper bag, they were his veggie chips )like potato chips) So I called his Dr. and they admitted him right away. He is still having a hard time, but is clinically stable so we were allowed home.
We met with Dr. Atlas, and as of today, Alec is on more chemo. He started the Metronomic therapy today. I was so nervous this morning mixing his chemo together, but tonight I felt a little more comfortable. Alec has no signs of vommiting, yet.
His eating is still fairly poor, I have to cook soups and puree them, then he drinks them. He is on a solely organic diet. We had to cancel our appointment with his holistic Dr. and his ENT this week because of our hospital stay so I have to reschedule them this week.
Great News >>>>>>
Our friend Hannah finishes her last round of chemo this Monday!! Hannah you are so strong, keep up the good work beautiful! If you want to meet our friend, go to her website:
http://hannahpro.blogspot.com
Alec just called me down stairs to turn on his SpongeBob nightlight, he smiled ear to ear when it went on, uhh it was such a sight.
Well keep happy thoughts.
Amy
xoxo
Saturday, December 15, 2007
Saturday, December 8, 2007
NYU Response
Hi all, well...I spoke to NYU last night; Dr. Gardner concurs that there is tumor growth. It is not a blood vessel. Based on August scans and the most recent one, there is definite tumor growth occurring. She advises us not to wait on delaying any treatment based on the aggresionness of his type of cancer.
The fact that his spinal fluid still tests negative to disease is a good sign. She said that the tumor is still very small and if you didn't know where the previous spinal tumor was located you could actually miss it. We discussed a few options for Alec but we are going to go with the retnoiac acid and tomodar approach. I will have to give it Alec oral chemo from home for 6- 12 months and he will have to have more frequent scans.
She told us that LIJ could still treat him, it's not therapy that we would have to go into Manhattan for. My time is limited this evening, so I will update you all again soon.
Until then please pray for him!
-Amy
xoxo
There is music to the video slide below, make sure you click on the bottom left control once.
Enjoy!
The fact that his spinal fluid still tests negative to disease is a good sign. She said that the tumor is still very small and if you didn't know where the previous spinal tumor was located you could actually miss it. We discussed a few options for Alec but we are going to go with the retnoiac acid and tomodar approach. I will have to give it Alec oral chemo from home for 6- 12 months and he will have to have more frequent scans.
She told us that LIJ could still treat him, it's not therapy that we would have to go into Manhattan for. My time is limited this evening, so I will update you all again soon.
Until then please pray for him!
-Amy
xoxo
There is music to the video slide below, make sure you click on the bottom left control once.
Enjoy!
Thursday, December 6, 2007
A New Week, A New Tale
Alec has had a rough week. We met with the ENT again, hearing is as stable as can be. We were recommended speech therapy because he will have some difficulties hearing the t, f, sh, th sounds which will overall effect his reading.
I was gathering copies of records on Tuesday from LIJ and I stoped in to see his Dr. to just give him a heads up on his unstable walking and shaking of he hands while eating or drinking and shaking his head like a Parkinson's disease shake, not seizures or anything, and his speech seemed a little slurred almost like how he spoke after the tumor was originally removed. He was concerned and scheduled him an emergency MRI the next day, Wed. and immediately started him on decadrone for swelling. As it turns out Alec is having some radiation effects to his cerebellum area of the brain, the original tumor site. He has some swelling and fluid build up. I have to keep him on the decadrone for a couple of weeks. His Dr. tells me that it shouldn't be permanent. The lesion on his c-spine is still stable, no change. Now he tells me that it might even be a blood vessel, so he doesn't want to treat it. We will just keep watching it.
Meanwhile...................... we have the folks at NYU looking at the scans, they will be calling me tomorrow to let me know what they think, and we'll go from there.
Alec is officially off his magase, thank goodness. Mostly by my doing. He is eating, forcefully, but eating enough to maintain his weight. We meet with Dr. Stills in Plainview next week to work up a holistic plan for him, she came recommended by our friend Samantha, Josephs Mom, thanks :0)
In the interim I buy mostly organic foods now, milk, cheese, butter, cereal, meats etc. The fruits and vegetable go bad faster and taste a little different but we are minus antibiotics and growth hormones. It's a lifestyle change, but you do whatever it takes when it comes to your children. Well thats all for now.
I'll update you on NYU dx as soon as it comes in.
-Amy
P.S. Thank you Friends of the Center Moriches Library for our private sessions, Alec really enjoys it :0)
I was gathering copies of records on Tuesday from LIJ and I stoped in to see his Dr. to just give him a heads up on his unstable walking and shaking of he hands while eating or drinking and shaking his head like a Parkinson's disease shake, not seizures or anything, and his speech seemed a little slurred almost like how he spoke after the tumor was originally removed. He was concerned and scheduled him an emergency MRI the next day, Wed. and immediately started him on decadrone for swelling. As it turns out Alec is having some radiation effects to his cerebellum area of the brain, the original tumor site. He has some swelling and fluid build up. I have to keep him on the decadrone for a couple of weeks. His Dr. tells me that it shouldn't be permanent. The lesion on his c-spine is still stable, no change. Now he tells me that it might even be a blood vessel, so he doesn't want to treat it. We will just keep watching it.
Meanwhile...................... we have the folks at NYU looking at the scans, they will be calling me tomorrow to let me know what they think, and we'll go from there.
Alec is officially off his magase, thank goodness. Mostly by my doing. He is eating, forcefully, but eating enough to maintain his weight. We meet with Dr. Stills in Plainview next week to work up a holistic plan for him, she came recommended by our friend Samantha, Josephs Mom, thanks :0)
In the interim I buy mostly organic foods now, milk, cheese, butter, cereal, meats etc. The fruits and vegetable go bad faster and taste a little different but we are minus antibiotics and growth hormones. It's a lifestyle change, but you do whatever it takes when it comes to your children. Well thats all for now.
I'll update you on NYU dx as soon as it comes in.
-Amy
P.S. Thank you Friends of the Center Moriches Library for our private sessions, Alec really enjoys it :0)
Monday, November 26, 2007
I anticipated this next post to read nothing but good news. It is not so, Last week I had gotten a phone call from Alec's transplant Dr. at 9pm telling me that his cortisole level was .1 another words he is not producing his own adrenalin, hence the reason all he does is sleep and is always in a depressed state.
Not producing adrenalin in an immune suppressed state can be life threatening. I had to run up to CVS and give Alec a "stress dose" of hydrocortisole. I was told to watch for excessive vomiting, fever, and abnormal blood pressure.
We had to bring him in to the hospital the next day, Wednesday to meet with his endocrinologist. After my excessive research on the internet that night; as it turns out his "appetite stimulant" can cause adrenalin suppression. They had just recently increased his appetite stimulant, magase to 2- 40mg pills 2x a day without checking his cortisole level prior knowing. I have been saying for weeks that Alec seems to be depressed all the time and just lays there. In any case I told them I want him off the magase. We are working on weaning him off because you can't just stop it. Then in a couple of weeks we will be weaning him off the cortisole to see if his body stars producing it on it's own. I am told that these effects from radiation usually don't occur so quickly, yet here we are feeling the effects.
During this same visit we went to his oncologist office because we wanted to know the results from the MRI,we were taken into a private examining room. You could hear mine and my husbands heartbeat pounding down the road. We still remained optimistic. In comes walking Dr. Atlas, his PA Alyssa and our Social Worker. I knew it, I knew it, why is my social worker here. NO NO this can't be please tell me my baby is fine, Oh God please NO. Mark our baby is going to be fine please tell me our baby is going to be fine. We were told that the last remaining spinal tumor that had begun shrinking was still there. Not only is it still there but it has begun growing again. The stem cell treatment did not work. It would have done it's thing by now. We had to bring him in Friday, the day after Thanksgiving for a spinal tap because his Dr. thinks it might have also spread now into his spinal fluid, where it has been negative for disease since prior to chemo and radiation. Of course Mark and I were fighting the tears as hard as we could because the kids were with us. We meet with a team of Dr.'s tomorrow at Schnieder we will have the results from his spinal tap then and from there I am scheduling an appt. with NYU as referred to us by our friend Kim, then to Boston Children's hospital. We are also going to start wholisic treatments, in Nevada or Arizona.
We transferred his hearing care to our local ENT we brought our older son Kevin to for years. Alec's hearing continues to decline due to nerve damage, he does need hearing aids, it is not just his high frequency that has been effected it is also his overall hearing. We go this Friday for another hearing test and to be fitted for hearing aids. With any hope we should have them by Christmas.
His mind is processing things alot slower, his short term memory has been effected. He has asked me 3 times this morning why the Christmas tree is set up.
He is eating though, he has gained weight, he is up to 39.5 lbs, up from 37 and we actually made it through the entire day yesterday with no vomit.
Please understand for those whose calls I have not returned and e-mails that have gone unanswered; it is too hard for us to keep repeating the same thing over and over again. We need too keep strong, Alec needs us to stay strong. We can't be around solemn voices and faces. We have to keep going. I will try to update this blog more often.
Until then please keep Alec in your prayers and all our HEMOC friends, Hannah, Stanley, Danny, Joseph, Teeya and all those on Med 4 and in transplant.
Not producing adrenalin in an immune suppressed state can be life threatening. I had to run up to CVS and give Alec a "stress dose" of hydrocortisole. I was told to watch for excessive vomiting, fever, and abnormal blood pressure.
We had to bring him in to the hospital the next day, Wednesday to meet with his endocrinologist. After my excessive research on the internet that night; as it turns out his "appetite stimulant" can cause adrenalin suppression. They had just recently increased his appetite stimulant, magase to 2- 40mg pills 2x a day without checking his cortisole level prior knowing. I have been saying for weeks that Alec seems to be depressed all the time and just lays there. In any case I told them I want him off the magase. We are working on weaning him off because you can't just stop it. Then in a couple of weeks we will be weaning him off the cortisole to see if his body stars producing it on it's own. I am told that these effects from radiation usually don't occur so quickly, yet here we are feeling the effects.
During this same visit we went to his oncologist office because we wanted to know the results from the MRI,we were taken into a private examining room. You could hear mine and my husbands heartbeat pounding down the road. We still remained optimistic. In comes walking Dr. Atlas, his PA Alyssa and our Social Worker. I knew it, I knew it, why is my social worker here. NO NO this can't be please tell me my baby is fine, Oh God please NO. Mark our baby is going to be fine please tell me our baby is going to be fine. We were told that the last remaining spinal tumor that had begun shrinking was still there. Not only is it still there but it has begun growing again. The stem cell treatment did not work. It would have done it's thing by now. We had to bring him in Friday, the day after Thanksgiving for a spinal tap because his Dr. thinks it might have also spread now into his spinal fluid, where it has been negative for disease since prior to chemo and radiation. Of course Mark and I were fighting the tears as hard as we could because the kids were with us. We meet with a team of Dr.'s tomorrow at Schnieder we will have the results from his spinal tap then and from there I am scheduling an appt. with NYU as referred to us by our friend Kim, then to Boston Children's hospital. We are also going to start wholisic treatments, in Nevada or Arizona.
We transferred his hearing care to our local ENT we brought our older son Kevin to for years. Alec's hearing continues to decline due to nerve damage, he does need hearing aids, it is not just his high frequency that has been effected it is also his overall hearing. We go this Friday for another hearing test and to be fitted for hearing aids. With any hope we should have them by Christmas.
His mind is processing things alot slower, his short term memory has been effected. He has asked me 3 times this morning why the Christmas tree is set up.
He is eating though, he has gained weight, he is up to 39.5 lbs, up from 37 and we actually made it through the entire day yesterday with no vomit.
Please understand for those whose calls I have not returned and e-mails that have gone unanswered; it is too hard for us to keep repeating the same thing over and over again. We need too keep strong, Alec needs us to stay strong. We can't be around solemn voices and faces. We have to keep going. I will try to update this blog more often.
Until then please keep Alec in your prayers and all our HEMOC friends, Hannah, Stanley, Danny, Joseph, Teeya and all those on Med 4 and in transplant.
Sunday, November 4, 2007
Friday, October 26, 2007
Home, but struggling to eat
Although Alec appears to have an appetite, he claims to still not be able to taste anything. I continue to just puree his food with his shake. His weight is maintained, not losing not gaining. I am tempted to bump up his calories a little. He keeps asking for food but when we get if for him or make a meal he wants, nothing. He just spits it out and says he doesn't taste anything.
I ask him what he tastes when he drinks his shakes, I mean after all they are gross, he says nothing just the shake.
I spoke to Chrissy and she said Stanley is tasting food, I'm sorry for those who don't know Stanley, he is an awesome kid we met along the way, he also had a transplant because his cancer relapsed.
I spoke to Alec's Dr. again and they said as long as he is taking the shakes it's fine, as a mother it's not natural to see your grown son not chewing and swallow food. Sometimes I wonder if he is to tired for the effort it involves to chew and swallow food. Is it is easier just to have Mom feed me through the syringe. I am going to start having him drink the shake on his own, as oppose to me hand feeding him, maybe that might encourage him to eat.
Other than that he is just enjoying being home. His favorite teacher started tutoring him again, everyday he asks is Ms. Moran coming today? Academically he is doing well.
We don't have clinic next week, yay. His counts are really good. His platelets went from 93 to 275 on his own, yay!! Go Platelets, Go platelets!
I am sorry I havn't updated sooner but between feeding him, meds, cleaning, Sean and Kevs homework, time runs out. Thanks for all the e-mails though. It took me forever to go through all of them tonight.
Till next time
-Amy xoxox
Please keep our friends in your prayers, Hannah (8), Stanley (8), Teeya (7, I think), Danny (3), Denton (11), Joseph (3), and Gwyn (2) in your prayers as well. Some sweet friends we have met on the way.
I ask him what he tastes when he drinks his shakes, I mean after all they are gross, he says nothing just the shake.
I spoke to Chrissy and she said Stanley is tasting food, I'm sorry for those who don't know Stanley, he is an awesome kid we met along the way, he also had a transplant because his cancer relapsed.
I spoke to Alec's Dr. again and they said as long as he is taking the shakes it's fine, as a mother it's not natural to see your grown son not chewing and swallow food. Sometimes I wonder if he is to tired for the effort it involves to chew and swallow food. Is it is easier just to have Mom feed me through the syringe. I am going to start having him drink the shake on his own, as oppose to me hand feeding him, maybe that might encourage him to eat.
Other than that he is just enjoying being home. His favorite teacher started tutoring him again, everyday he asks is Ms. Moran coming today? Academically he is doing well.
We don't have clinic next week, yay. His counts are really good. His platelets went from 93 to 275 on his own, yay!! Go Platelets, Go platelets!
I am sorry I havn't updated sooner but between feeding him, meds, cleaning, Sean and Kevs homework, time runs out. Thanks for all the e-mails though. It took me forever to go through all of them tonight.
Till next time
-Amy xoxox
Please keep our friends in your prayers, Hannah (8), Stanley (8), Teeya (7, I think), Danny (3), Denton (11), Joseph (3), and Gwyn (2) in your prayers as well. Some sweet friends we have met on the way.
Wednesday, October 17, 2007
We Are Home!!
It has been a long time coming. Although Alec's fight is far from over 5 years and counting, the Dr.'s feel he is strong enough to come home. His meds are as follows:
Acyclovir
Fluconazole
Xopenex
Pulmicort
Previcid
Phenergen
Zofran
Tyonal
Magnesium
Megase
Bactrim
He is still not eating anything!!! I have to make him special shakes 3 times a day, he drinks them with no complaints. Although Alec has never complained about anything in his life. This morning he tried a scrambled egg and spit it out and then we tried Cocoa Puffs and spit it out. I have made his favorite foods and even foods he never really liked, and still nothing. The Dr. said just keep going with the shakes. I am now adding more ice cream to them and I even snuck in some peanut butter in this mornings batch. I know he didn't get his taste buds back yet because he didn't even notice the peanut butter flavoring.
He is sleeping alot. He has alot of leg pain, his Dr.'s want him to start in home physical therapy, so I am making arrangements for that.
His hearing continues to decline, it is inevitable he will need hearing aids. At the present time I have a baby monitor in the living room and keep the other half near me so I can speak to him through the monitor or else I am yelling. The T.V. is usually blasting when it's on. I can't take him to the Speech and Hearing center yet, his Dr.s are not comfortable with me taking him any where but to clinic.
His blood pressure has been beautiful lately, I just took it before I sat down to type this 99/65 :0) and of course no temperature. His numbers and ANC continue to climb. He is even producing his own platelets now, he went from 79 to 93 on his own, yay!! He is usually transfused at 30. I tried uploading some pictures before but it didn't work, I'll try again when I can. Well I have to run, baby needs a bottle and Alec is due for medication.
Love to all,
Amy
Acyclovir
Fluconazole
Xopenex
Pulmicort
Previcid
Phenergen
Zofran
Tyonal
Magnesium
Megase
Bactrim
He is still not eating anything!!! I have to make him special shakes 3 times a day, he drinks them with no complaints. Although Alec has never complained about anything in his life. This morning he tried a scrambled egg and spit it out and then we tried Cocoa Puffs and spit it out. I have made his favorite foods and even foods he never really liked, and still nothing. The Dr. said just keep going with the shakes. I am now adding more ice cream to them and I even snuck in some peanut butter in this mornings batch. I know he didn't get his taste buds back yet because he didn't even notice the peanut butter flavoring.
He is sleeping alot. He has alot of leg pain, his Dr.'s want him to start in home physical therapy, so I am making arrangements for that.
His hearing continues to decline, it is inevitable he will need hearing aids. At the present time I have a baby monitor in the living room and keep the other half near me so I can speak to him through the monitor or else I am yelling. The T.V. is usually blasting when it's on. I can't take him to the Speech and Hearing center yet, his Dr.s are not comfortable with me taking him any where but to clinic.
His blood pressure has been beautiful lately, I just took it before I sat down to type this 99/65 :0) and of course no temperature. His numbers and ANC continue to climb. He is even producing his own platelets now, he went from 79 to 93 on his own, yay!! He is usually transfused at 30. I tried uploading some pictures before but it didn't work, I'll try again when I can. Well I have to run, baby needs a bottle and Alec is due for medication.
Love to all,
Amy
Friday, October 12, 2007
Thursday, October 11, 2007
With good news there is always bad news
So close, Alec had a positive culture come back on his broviack. He is now back on vancomyicin. Another culture was done on his port, we have to wait 48 hrs to see if it grows anything. We were just about set to come home. His ANC has been holding steady and he is taking all his meds by mouth, still vomiting on occasion, but that is to be expected. He has been off of his IV nutrition and his weight is holding steady. He continues to just drink the shake from nutrition which the Dr.'s are satisfied with.
I met with nutrition today and they talked to me about the diet Alec needs to be on once released from the hospital, all of which I knew, no fresh fruits and veggies, no fast food, not even pizza. Everything has to be cooked at home and washed thoroughly. Alec has to have his own condiments in small portions.
Alec was looking forward to going home shortly, so I had to break the news to him that it looks like we might have to stay longer because one of his test from his tubies came back that there was a buggie in it. He was a little upset, but drawing pictures of lions on the window cheered him up a bit. (picture will be uploaded tomorrow)
I met with nutrition today and they talked to me about the diet Alec needs to be on once released from the hospital, all of which I knew, no fresh fruits and veggies, no fast food, not even pizza. Everything has to be cooked at home and washed thoroughly. Alec has to have his own condiments in small portions.
Alec was looking forward to going home shortly, so I had to break the news to him that it looks like we might have to stay longer because one of his test from his tubies came back that there was a buggie in it. He was a little upset, but drawing pictures of lions on the window cheered him up a bit. (picture will be uploaded tomorrow)
Tuesday, October 9, 2007
Antibiotic cutbacks
Alec is off of his vancomycin and cefipime. He is taking Acyclovir and his antifungal. He will be going home on those meds along with Bactrim to prevent pnemonia. His blood pressure meds have been discontinued as well. Blood pressure is holding steady :0) He continues to ask for food, steak and steak sauce, grilled cheese, bologna, but he just keeps spitting it out. He is though drinking the vanilla shakes that come up from the nutrition, that right there is 900 calories. His taste buds are still burnt, he tastes nothing. I spoke to his nurse last night about it, she is a breast cancer survivor and went through chemo, not high doses, but she said the chemo does knock out the taste buds for a while. To date Alec has had 3 nurses who are breast cancer survivors I pray for them also.
He wanted to get dressed today, he is wearing a pair of jeans, he is tired of pj's and who could blame him after a month. The air purifiers (IQ Air)have arrived from California and are up and running. Mark is home continuing to prep the house for Alec's homecomming which we hope is soon.
Alec's MRI's are scheduled for Nov 16th and 19th; 1st part is for the brain second part for the spine. This is going to be the most thankful thanksgiving ever, I just know it!
As always, thank you for all your prayers, calls and e-mails.
Love,
Amy
He wanted to get dressed today, he is wearing a pair of jeans, he is tired of pj's and who could blame him after a month. The air purifiers (IQ Air)have arrived from California and are up and running. Mark is home continuing to prep the house for Alec's homecomming which we hope is soon.
Alec's MRI's are scheduled for Nov 16th and 19th; 1st part is for the brain second part for the spine. This is going to be the most thankful thanksgiving ever, I just know it!
As always, thank you for all your prayers, calls and e-mails.
Love,
Amy
Friday, October 5, 2007
Creativity, A beautiful thing!
This Alec drew not to long ago. He is walking Jack, look at how happy they are.
Thursday, October 4, 2007
Need platelets
Today Alec will be getting platelets, his labs yesterday were inaccurate about his platelet counts because today he is at 35. He is getting another chest x-ray today and will be discontinuing his albuterol. He will be started on Megase to shake up his appetite a little. He still has not eaten anything yet and they had to adjust his TPN. He is up in spirits though.
My journey of sterilizing my home continues this weekend. The air purifiers should be arriving any day now so I can get those up and running.
Kevin visited Jack (the dog) yesterday and was so excited to see him. Thank you Erin for taking good care of our puppy for the next few months.
Love to all,
Amy
My journey of sterilizing my home continues this weekend. The air purifiers should be arriving any day now so I can get those up and running.
Kevin visited Jack (the dog) yesterday and was so excited to see him. Thank you Erin for taking good care of our puppy for the next few months.
Love to all,
Amy
Tuesday, October 2, 2007
ANC Spike :0) BUT.. Not eating :(
Alec's ANC is off the wall. His numbers are amazing, his mouth sores are clearing up and scabbing but he is a constant picker. I am getting anxious for his MRI. We keep trying to get him to eat but he just won't. He thinks he wants something and you get it, and then nothing. He just spits it out.
He had a little case of insomnia last night, he just couldn't sleep. He is on albuterol treatments which I think is keeping him up. I asked them to change the times and they are 7am and 7pm now instead of 10 and 10.
I still haven't seen a really good smile yet no matter how much I try, it's really hard. I have to hold off on Sean's immunizations because Alec can't be exposed to recently immunized people, especially live viruses, MMR, polio and varicella. Considering we are just confined to home in any case it should be fine. I will be heading home Thursday night and I will post some pictures of his transplant and my lame attempts at drawing Darth Vader on his windows :) Although he thought it was great.
He is actually asking for the cookies that Hannah dropped off, yay I'll let you know.
Thanks Hannah and Kim!
Well I have to run.
Love,
Amy
He had a little case of insomnia last night, he just couldn't sleep. He is on albuterol treatments which I think is keeping him up. I asked them to change the times and they are 7am and 7pm now instead of 10 and 10.
I still haven't seen a really good smile yet no matter how much I try, it's really hard. I have to hold off on Sean's immunizations because Alec can't be exposed to recently immunized people, especially live viruses, MMR, polio and varicella. Considering we are just confined to home in any case it should be fine. I will be heading home Thursday night and I will post some pictures of his transplant and my lame attempts at drawing Darth Vader on his windows :) Although he thought it was great.
He is actually asking for the cookies that Hannah dropped off, yay I'll let you know.
Thanks Hannah and Kim!
Well I have to run.
Love,
Amy
Wednesday, September 26, 2007
Mouth Sores
What a trooper Alec is, even with all his mouth sores he continued to try and drink. He still has not eaten anything but continues to try and drink. Several attempts have been made trying to insert the feeding tube and have been unsuccessful.
His plastic tent breathing treatments are still going on, 8 hours a day he spends in this plastic tent, and he is such a trooper he does it. His ANC is still 0 which is to be expected. His body is covered in rashy itchy skin. His skin is also peeling, like a sun tan peel. Our friend Hannah made Alec a beautiful card which I plan on scanning and posting by tomorrow night for all to see, what an artist! She drew a picture of Jack and it looks just like him :0)
Well I must run, keep the faith.
Love,
Amy
His plastic tent breathing treatments are still going on, 8 hours a day he spends in this plastic tent, and he is such a trooper he does it. His ANC is still 0 which is to be expected. His body is covered in rashy itchy skin. His skin is also peeling, like a sun tan peel. Our friend Hannah made Alec a beautiful card which I plan on scanning and posting by tomorrow night for all to see, what an artist! She drew a picture of Jack and it looks just like him :0)
Well I must run, keep the faith.
Love,
Amy
Ford Motors
As some of you are aware, my 2002 Ford Expedition was diagnosed of needing a new transmission. This comes from a finanical oil changer. In any case, I took my disappointment to Ford corporate headquarters asking for help, hoping they would reach out at our time of need and knowing that my truck is a necessity being we live so far from the hospital and Alec needs to make weekly trips here after his transplant.
They DENIED to help us. They claim there is nothing they can do. It's sad when you try to continue buying an American made product to support our economy and an American company denies helping a family when they truly need it. Honestly, what is a rebuilt transmission really worth to such a large company. Our family has lost faith in Ford and will never buy a Ford again.
*Stay tuned for a news report on it.
They DENIED to help us. They claim there is nothing they can do. It's sad when you try to continue buying an American made product to support our economy and an American company denies helping a family when they truly need it. Honestly, what is a rebuilt transmission really worth to such a large company. Our family has lost faith in Ford and will never buy a Ford again.
*Stay tuned for a news report on it.
Monday, September 24, 2007
Rough Patch
Alec has been having a difficult time lately. Mouth sores and throat sores are present. His skin is changing colors, very deep, deep tan. They attempted the feeding tube and he vomited it up accompanied with a nose bleed. He has been getting platelets pretty much every other day. His pressure is sky rocketing again 140/100 he is one pressure medicine to control it. Fevers have been in check knock on wood. To date though he has only needed 1 transfusion. He is weak and just wants to go to Disney to train to be a Jedi, soon enough my son, soon enough.
He has not eaten but continues to ask for different foods, like spinach ravioli's from the price club and carrots, which of course he can't have. No fresh fruits or veg tables for a while at least 6 months. He is cheered up by a new favorite movie Spirit, our friends who we met here at the hospital had given Alec a bag of goodies and when he found out it was from his friend Hannah he smiled from ear to ear and couldn't wait to watch his new movie.
I know I have not been keeping up to date as often as I would like to, but I have gotten all your phone calls and prayers thank you so much.
Till next time keep the faith.
Love,
Amy
He has not eaten but continues to ask for different foods, like spinach ravioli's from the price club and carrots, which of course he can't have. No fresh fruits or veg tables for a while at least 6 months. He is cheered up by a new favorite movie Spirit, our friends who we met here at the hospital had given Alec a bag of goodies and when he found out it was from his friend Hannah he smiled from ear to ear and couldn't wait to watch his new movie.
I know I have not been keeping up to date as often as I would like to, but I have gotten all your phone calls and prayers thank you so much.
Till next time keep the faith.
Love,
Amy
Sunday, September 16, 2007
Fever Has Shown It's Ugly Face Again
It was inevitable that Alec would develop a fever. His counts have bottomed out and he has not eaten in the past (2) days. They had to access his port last night to run blood cultures and make sure there is no infection in his port, it took (3) attempts to access him. He is feeling blue and takes alot of effort to put a smile on his face. They stopped his mouth care temporarily and switched his oral meds to IV. I was concerned with stopping the mouthcare because of thrush and mouth sores but they said he is going to get them no matter what, they want to stop the vomiting and the mouth care makes him get the yuckies, as we call it.
Today is the last day of his chemo, Thipene and VP-16 (etopiside). Then we have 2 days of rest and transplant on Wednesday :0) I am told he should recoup pretty fast after transplant. Alec continues to need 4 baths a day because of the high doses of chemo can leak out your pores and cause sores. Oh, we were also relocated to the transplant unit itself as opposed to the old transplant room. We had some major issues on the floor and the Dr. was not comfortable having us over there because of his age and the attention he requires. Mark and wanted him transferred to the transplant unit. It's technologically advanced for transplant and the air is filtered much better over there and not as much through traffic, as there are only 8 patients allowed in the unit at 1 time and only parent visitors.
Kevin seems to be holding up okay through all this. He is happy this is Alec's last time in the hospital, he said he wants him home. Well I will try to continue to update you.
xoxox
Love,
Amy
Today is the last day of his chemo, Thipene and VP-16 (etopiside). Then we have 2 days of rest and transplant on Wednesday :0) I am told he should recoup pretty fast after transplant. Alec continues to need 4 baths a day because of the high doses of chemo can leak out your pores and cause sores. Oh, we were also relocated to the transplant unit itself as opposed to the old transplant room. We had some major issues on the floor and the Dr. was not comfortable having us over there because of his age and the attention he requires. Mark and wanted him transferred to the transplant unit. It's technologically advanced for transplant and the air is filtered much better over there and not as much through traffic, as there are only 8 patients allowed in the unit at 1 time and only parent visitors.
Kevin seems to be holding up okay through all this. He is happy this is Alec's last time in the hospital, he said he wants him home. Well I will try to continue to update you.
xoxox
Love,
Amy
Wednesday, September 12, 2007
1st Day of Chemo Under Our Belt
We finished our first day of chemo, I made sure he started both of the Anti-nausea meds. He is doing great!! He ate just about an entire loaf of garlic bread and some of Mommy's famous spaghetti, Thank you Robusto Ragu :0) He doesn't like any hospital food so the Ronald McDonald house is wonderful, they have volunteers and various restaurants that cater for the residents staying there so I am able to bring Alec real food.
I have been driving the Dr.s a little crazy with what he can and can't eat. He is not aloud to have any fast food, peanuts, fresh fruits and vegtables for a while due to bacteria. He is although allowed to have anything processed. Just so you know Pizza is not considered fast food :0) Any kind of frozen entrees or canned goods he can have, which is good because he ate an entire can of spaghetti o's the other day when my husband was here.
*This eating is also without the aid of megase, his appetite stimulant, just with his good old appetite.
We got some exercises today, we did a few laps around his room. He is in isolation and can't leave his room. We played alot of games and started a daily journal, I just have him draw a picture of what comes to mind, describe it to me, and then I have him draw me a picture of how he is feeling. All smiley faces so far :0)
I was very nervous on how he was going to do with all of his oral medications, he is on 7. They consist of antibiotics, anti fungal, gallbladder protectant. He vomits usually from his meds but we told him about the angio tube and he cried so we are holding off because so far he is tolerating them; with many thanks to an M&M chasers. I am told he will definitely need one but we'll see.
There was a book sale down in the cafeteria I had a field day with. Alec was excited to see even more books. I got him some books he could read to Mommy, I told him it wasn't fair I had to read to him all the time, that I need story time too. He laughed.
Well that is all for now, thank you for all your prayers.
Love,
Amy
I have been driving the Dr.s a little crazy with what he can and can't eat. He is not aloud to have any fast food, peanuts, fresh fruits and vegtables for a while due to bacteria. He is although allowed to have anything processed. Just so you know Pizza is not considered fast food :0) Any kind of frozen entrees or canned goods he can have, which is good because he ate an entire can of spaghetti o's the other day when my husband was here.
*This eating is also without the aid of megase, his appetite stimulant, just with his good old appetite.
We got some exercises today, we did a few laps around his room. He is in isolation and can't leave his room. We played alot of games and started a daily journal, I just have him draw a picture of what comes to mind, describe it to me, and then I have him draw me a picture of how he is feeling. All smiley faces so far :0)
I was very nervous on how he was going to do with all of his oral medications, he is on 7. They consist of antibiotics, anti fungal, gallbladder protectant. He vomits usually from his meds but we told him about the angio tube and he cried so we are holding off because so far he is tolerating them; with many thanks to an M&M chasers. I am told he will definitely need one but we'll see.
There was a book sale down in the cafeteria I had a field day with. Alec was excited to see even more books. I got him some books he could read to Mommy, I told him it wasn't fair I had to read to him all the time, that I need story time too. He laughed.
Well that is all for now, thank you for all your prayers.
Love,
Amy
Tuesday, September 11, 2007
Great Start!!
We were admitted yesterday morning at 5:00 am. Alec was excited that he got to spend the night at the Ronald McDonald house with us. I think it was really good for him to know where Mommy and Daddy have to sleep; as we are not allowed to sleep in his room. It's for his own safety.
The broviack was put in with NO complications, yeah!! He was very uncomfortable so he was given some morphine for the pain and then he was fine. He is very excited this is our last stay at the hospital for treatments. He is also very excited that he will be given sleepy juice again to take the broviack out upon discharge.
He ate an awesome breakfast, 2 whole boiled eggs, bread and Gatorade which is really good for him. He is now asking for M&M's
Kevin spent the day with us yesterday, Alec was really excited. It will be hard on both of them to not be in contact with each other for 2 months. They are really close. Kevin can wave to him through the window but it's not the same. Well I have to go get those M&M's, bye for now.
-Amy
The broviack was put in with NO complications, yeah!! He was very uncomfortable so he was given some morphine for the pain and then he was fine. He is very excited this is our last stay at the hospital for treatments. He is also very excited that he will be given sleepy juice again to take the broviack out upon discharge.
He ate an awesome breakfast, 2 whole boiled eggs, bread and Gatorade which is really good for him. He is now asking for M&M's
Kevin spent the day with us yesterday, Alec was really excited. It will be hard on both of them to not be in contact with each other for 2 months. They are really close. Kevin can wave to him through the window but it's not the same. Well I have to go get those M&M's, bye for now.
-Amy
Thursday, September 6, 2007
The Backyard Theatre
Over the summer we were invited by the very talented Mrs. M, (sorry have to with hold name till I have permission to say so) to watch an amazing performance by a group of local talent that belongs on their own reality T.V. show
Mickey made a sup rise appearance and Alec and Kevin drew him pictures.
Alec was so excited.
Thank you for everything!!
Our Amazing Center Moriches Community
We arrived home after a long day at the hospital to this collection of donated books from the book fair this past April.
Alec is excited to take these books along for our long stay. Thank you Jeanette and Anna and the CMPTA for your prayers.
We will be admitted at 6am on Monday morning. Alec will have his broviack put in at 7:30am, and Tuesday will start heavy chemo. The following Wednesday will be "Transplant Day" I'll keep you update daily if I can. Love to you all.
-Amy
Tuesday, September 4, 2007
A Family Outing Before Transplant
We enjoyed a wonderful family outing yesterday, on Memorial Day with our very dear friends, and Alec's Godfather: Uncle Chris, Aunt Lori, Danny, Kassie, and Ryan.
Alec's favorite part was riding the bug carousel and riding a real camel :0)
Friday, August 31, 2007
Thank you Children's Brain Tumor Foundation for the cruise around Manhattan
Our family day out before the last round of chemo in July.
Yeah, We are home :-)
Hello to all of our friends and family who have continued to keep Alec in thier prayers. It has been an extremely rough round of chemo; our intended 5 day stay turned into 3 weeks :( luckily it was the last one. We are being admitted on September 10th for our stem cell transplant.
First Alec will have the broviack put in on the first day. Then starts the heavy, heavy chemo. 1 years worth of chemo in 6 days. We have to knock everything out, white blood cells, red blood cells, bone marrow, everything!!! Then he will receive his previously harvested stem cells that have been frozen. then we wait, wait, and wait some more. With lots of blood transfusions and platelets on the way. We are expected to be in the hospital for 2 months. He is excited that this is his last hospital stay hopefully for a long time. He is also anxious to get back to school. He really misses it.
Well that's all for now.
First Alec will have the broviack put in on the first day. Then starts the heavy, heavy chemo. 1 years worth of chemo in 6 days. We have to knock everything out, white blood cells, red blood cells, bone marrow, everything!!! Then he will receive his previously harvested stem cells that have been frozen. then we wait, wait, and wait some more. With lots of blood transfusions and platelets on the way. We are expected to be in the hospital for 2 months. He is excited that this is his last hospital stay hopefully for a long time. He is also anxious to get back to school. He really misses it.
Well that's all for now.
Wednesday, August 15, 2007
ICU
Alec has been spiking a fever, it has been 104+. This started Monday at 4:30 pm shortly after the completion of his receiving platelets. He was started on Tylenol immediately. It was given to him every 4-5 hours around the clock; the fever never broke. A blood culture was drawn from his port as normal protocol and he was placed on not 1 or 2 , but on 4 anti-biotics. So at this point he is on 2 blood pressure medicines, 4 antibiotics, an appetite stimulator (now going on 8 days of not eating), his mouth care, 2 anti nausea medicnes, white blood cell booster shot, an antacid by iv, a medicine to move the gut faster to see if this helps improve his eating.
Needless to say the fever never broke and he was shaking so bad from the chills he was unable to sleep.
Around 4:30 am an iv in his hand had to be started because they needed to give him more fluids and with him on so many antibiotics that run for an hour some 2 and his nutrition going through his line they couldn't get enough fluids through.
By 6:30 am fever 104.4 and no blood pressure reading. He was very lightheaded you could tell, he was trying to sit up and was losing his focus. Now throughout the night they did stop his blood pressure medicines because his blood pressure reading were low, well low for him anyway. Dr.s and nurses ran into his room and the P-ICU team called immediately. He was transferred to PICU immediately. He still kept fevering, chill in and moaning still 1am this morning. A cold bath, cooling blanket, ice packs, Tylenol, and nothing was breaking him. Finally the fellow on call recommended Motrin. It was debate able to give it to him because his platelets were so low and Motrin can block there actions and multiplying. But needless to say he got the one dose and fever came down and heart rate slowed. He will probably need platelets again tomorrow and the necessity of a blood transfusion yet again is borderline right now.
His blood culture came back positive of gram positive, an infection in his port. Hopefully being that this is his first port infection with antibiotics the infection should be cleared and the line not removed. In the event that the line needs to be removed another one will need to be put in as well as the broviack before transplant.
Speaking of transplant, we met with the Dr. who will be involved in the transplant, Alec needs a truck load of tests prior to admission His stay is expected to be 6-8 weeks. Then once released he needs to be at in home isolation for 3 more months 100 days to be exact. It will take a long time to work his immunity back up again, about 1 year.
After all this is in the past Alec wants togo to Disney and train to be a Jedi Knight :0) no surprise there, We read an article on it in a magazine and he keeps it by his bedside :0) my little Jedi.
Well thats all for now.
God Bless all of you for your concern for Alec.
Needless to say the fever never broke and he was shaking so bad from the chills he was unable to sleep.
Around 4:30 am an iv in his hand had to be started because they needed to give him more fluids and with him on so many antibiotics that run for an hour some 2 and his nutrition going through his line they couldn't get enough fluids through.
By 6:30 am fever 104.4 and no blood pressure reading. He was very lightheaded you could tell, he was trying to sit up and was losing his focus. Now throughout the night they did stop his blood pressure medicines because his blood pressure reading were low, well low for him anyway. Dr.s and nurses ran into his room and the P-ICU team called immediately. He was transferred to PICU immediately. He still kept fevering, chill in and moaning still 1am this morning. A cold bath, cooling blanket, ice packs, Tylenol, and nothing was breaking him. Finally the fellow on call recommended Motrin. It was debate able to give it to him because his platelets were so low and Motrin can block there actions and multiplying. But needless to say he got the one dose and fever came down and heart rate slowed. He will probably need platelets again tomorrow and the necessity of a blood transfusion yet again is borderline right now.
His blood culture came back positive of gram positive, an infection in his port. Hopefully being that this is his first port infection with antibiotics the infection should be cleared and the line not removed. In the event that the line needs to be removed another one will need to be put in as well as the broviack before transplant.
Speaking of transplant, we met with the Dr. who will be involved in the transplant, Alec needs a truck load of tests prior to admission His stay is expected to be 6-8 weeks. Then once released he needs to be at in home isolation for 3 more months 100 days to be exact. It will take a long time to work his immunity back up again, about 1 year.
After all this is in the past Alec wants togo to Disney and train to be a Jedi Knight :0) no surprise there, We read an article on it in a magazine and he keeps it by his bedside :0) my little Jedi.
Well thats all for now.
God Bless all of you for your concern for Alec.
Saturday, August 11, 2007
Developed Hypertention
With good news there comes bad news. Alec still is not tolerating food. He is being fed through IV, an angio tube (through the nose to stomach) would not work in his case because his stomach is not tolerating food. His blood pressure has been running very high, 150/101 range, he is currently on a blood pressure medicine (Nyphetapine) which appears to be working. He continues to need Bolus, potassium. His White blood count and total ANC is 0 t present time, which makes him vulnerable to illness.
He had a spinal tap on Thursday to check the fluid pressure and it was normal.
MRI NEWSFLASH
Brain and neck still remain clear and cancer free.
Spine- top tumor gone no evidence of metastasis, bot om tumor shrunken in size. Dr. reports at worst it looks very favorable :0)
I am confused as to why they want to do a shunt and why the Gastro Internist have not yet preformed an x-ray with contrast in Alec's stomach. He attempts to eat and 10 min. later he vommits it up. The Dr. wants to do a shunt in case he needs one in the future and he is in the transplant unit then they couldn't preform the surgery.
Well I don't want breast cancer, should I have both breasts removed just in case. To me if there is no sign of hydrocephalus why look for trouble. To me you are adding the possibility of the body rejecting the shunt and causing infection during the stem Ceil transplant. It's not definite about the shunt, but the OR is scheduled tentatively for Tues. morning, i'll keep you posted.
Spirits:
Alec is restless, not wanting to leave his bed. We'll have to do some exercises tomorrow. He just wants to go home and see his dog, Jack.
I bought some games Mouse in the House, I figured it would be good for working on hs fine motor skills. And we always play Blues Clues memory, he beats Mommy everytime, so it has become a favorite of his.
Speaking of Jack, our poor puppy has spent the past 8 days in the kennel, and when I picked his up he has a stomach bug and is currently on medication. He is home, and with the help of our very dear friends: Annie and John M., Laura and Paul R., Tracy and Scott S. Jack can stay home, in his own environment and recover. Thank you guys :0)
I was thinking, Alec has a computer in his room, we are going to have a contest to see who looks the silliest, Alec alone will be the judge: Please email me your name and picture to:
Mardjana@optonline.net
This is not just for kids, its for all our friends, to make Alec's stay a little fun and to know his friends are thinking of him.
He had a spinal tap on Thursday to check the fluid pressure and it was normal.
MRI NEWSFLASH
Brain and neck still remain clear and cancer free.
Spine- top tumor gone no evidence of metastasis, bot om tumor shrunken in size. Dr. reports at worst it looks very favorable :0)
I am confused as to why they want to do a shunt and why the Gastro Internist have not yet preformed an x-ray with contrast in Alec's stomach. He attempts to eat and 10 min. later he vommits it up. The Dr. wants to do a shunt in case he needs one in the future and he is in the transplant unit then they couldn't preform the surgery.
Well I don't want breast cancer, should I have both breasts removed just in case. To me if there is no sign of hydrocephalus why look for trouble. To me you are adding the possibility of the body rejecting the shunt and causing infection during the stem Ceil transplant. It's not definite about the shunt, but the OR is scheduled tentatively for Tues. morning, i'll keep you posted.
Spirits:
Alec is restless, not wanting to leave his bed. We'll have to do some exercises tomorrow. He just wants to go home and see his dog, Jack.
I bought some games Mouse in the House, I figured it would be good for working on hs fine motor skills. And we always play Blues Clues memory, he beats Mommy everytime, so it has become a favorite of his.
Speaking of Jack, our poor puppy has spent the past 8 days in the kennel, and when I picked his up he has a stomach bug and is currently on medication. He is home, and with the help of our very dear friends: Annie and John M., Laura and Paul R., Tracy and Scott S. Jack can stay home, in his own environment and recover. Thank you guys :0)
I was thinking, Alec has a computer in his room, we are going to have a contest to see who looks the silliest, Alec alone will be the judge: Please email me your name and picture to:
Mardjana@optonline.net
This is not just for kids, its for all our friends, to make Alec's stay a little fun and to know his friends are thinking of him.
Wednesday, August 8, 2007
Still Not Stomaching Food
We are still here in the hospital and Alec has the desire to eat, craving pizza and chocolate pudding, but is still unable to hold any food down. We are on our 5th day now of no food. The Dr.'s are making their way down the hall we'll see what they have to say. His MRI is scheduled for Thursday and Friday. It has to be done in a two part series. Alec is quite excited to get sleepy juice again. The six weeks of radiation required Alec to be sedated everyday, and he loved it. He was disappointed when we finished his radiation.
Alec continues to have no change cognitively thus far. As an example, we were watching Beethoven, a movie he has added to his Star Wars collection, and on the credits he saw Alex and my. He ad me rewind the movie and pointed it out to me. He said Alex like my friend Alex and my m-y, my. To spot those words out is just amazing. They say that his cognitive will be effected down the road, but keeping his brain going and doing something everyday he isn't going to wake up and forget about it. He seems to be retaining alot. Like I said he is my strong little booga.
Alec continues to have no change cognitively thus far. As an example, we were watching Beethoven, a movie he has added to his Star Wars collection, and on the credits he saw Alex and my. He ad me rewind the movie and pointed it out to me. He said Alex like my friend Alex and my m-y, my. To spot those words out is just amazing. They say that his cognitive will be effected down the road, but keeping his brain going and doing something everyday he isn't going to wake up and forget about it. He seems to be retaining alot. Like I said he is my strong little booga.
Sunday, August 5, 2007
Longer than expected hospital stay
Alec was suppose to be released tomorrow, Monday, but he is still running a fever and we are going on 3 days of not eating anything. He needed a transfusion yesterday, but he couldn't hold down his Tylenol to break the fever. We were also trying to time his transfusion before his chemo. His transfusion has to run 3 hours and he needed to be premnedicated and fever free before they could do so.
His fever came down a little bit and the Dr.'s decided to move forward with the transfusion. By the time we started everything his chemo was pushed 2 hours out. It was started around 3:00am. After the first chemo (etopiside) ran 2 hours the next one (cytoxin) was short by 50 ml, the wrong amount was sent up. His chemo is also mixed with saline, so was it just chemo or saline in the bag?? I'll never know. In any case a new batch was prepared immediately for him being that his chemo is time sensitive and must be administered one right after they other. Then bladder protectents and stimulator's after.
He broke out in a rash from the transfusion even after being premedicated. He just had Benedryl and Tylenol a short time ago. He is still laying on a cooling pad to keep the fever under control, but it's not working all that well. His cultures are coming back negative which is good, is port doesn't need to be removed. He is resting comfortably now. Please continue to pray for him.
His fever came down a little bit and the Dr.'s decided to move forward with the transfusion. By the time we started everything his chemo was pushed 2 hours out. It was started around 3:00am. After the first chemo (etopiside) ran 2 hours the next one (cytoxin) was short by 50 ml, the wrong amount was sent up. His chemo is also mixed with saline, so was it just chemo or saline in the bag?? I'll never know. In any case a new batch was prepared immediately for him being that his chemo is time sensitive and must be administered one right after they other. Then bladder protectents and stimulator's after.
He broke out in a rash from the transfusion even after being premedicated. He just had Benedryl and Tylenol a short time ago. He is still laying on a cooling pad to keep the fever under control, but it's not working all that well. His cultures are coming back negative which is good, is port doesn't need to be removed. He is resting comfortably now. Please continue to pray for him.
Saturday, August 4, 2007
Fevers, Fevers, Fevers
Alec has been spiking up a fever during this stay of chemo. He needs a blood transfusion today, this will mark the 5th transfusion to date. Chemo will continue as long as his counts stay where they are, but they continue to drop. He did not eat anything yesterday, nothing. I hope today will be a better day for him. There is still no vommiting or nauseau which we are happy about, but I would feel better if there wasn't a fever and he would eat.
We meet with the transplant team on Tuesday. Alec has to have alot of tests before the transplant takes place, such as, an echocardiagram, MRI of brain and spine, chest x-ray, of course blood work and urine cultures, and a broviack, the tubes I mentioned before.
We meet with the transplant team on Tuesday. Alec has to have alot of tests before the transplant takes place, such as, an echocardiagram, MRI of brain and spine, chest x-ray, of course blood work and urine cultures, and a broviack, the tubes I mentioned before.
Friday, August 3, 2007
In for more chemo
Here we are again, this is our last round of chemo before his stem cell transplant. Sadly enough he is use to the hospital stays, but continues to miss Jack, his dog. We drop him off at the kennel together and it is nice because other dogs are their and Alec is happy he gets to play with some friends instead of being home by himself.
My husband stayed with Alec last night, and this is the first time we started chemo with no vommiting, WOW :) They changed his anti nausea medicine as I mentioned before. And I added MonaVie to his diet, a nutriotional supplement. He is definately higher in spirits lately. Before his operation he made this really funny voice straining his vocal cords kind of thing, anyway it was really funny and recently while I was driving he was playing around with Kevin and he did it, he did the voice. It just made my day, I wanted to cry.
Alec continues to excel in his home schooling. His teacher Miss. Moran, a saint, has continued to work with him over the summer. He hasn't missed a beat as far as what he has aquired this past year in Kindergarten. Mark and I are holding him back this year though. He has been out of school since the end of Feb. and he has to have the stem cell transplant in a month. The hospital stay will be 2 months straight, which I am so nervous about. He will also require so much follow-up and clinic visits, that to move him on to the 1st grade will just add unnecesary stress on him.
I explained to him and his briother, Kevin that Alec didn't finish Kindergarten so when school starts again he has to go back and finish it before he can go onto 1st grade. Alec really doen'[s know the difference anyway.
I reistered him in religion for 1st grade because technically he is in 1st grade so he can goto religion with his dear friends Jacob and Nathan. I figured this way he doesn't feel so different.
I have been doing alot of wholistic research to help Alec fight this ugly disease, and you really can drive yourself crazy. I have read about your Ph level in your body being to acidic, yet lately Alec has been craving orange juice. Also prior to his diagnosis he lived on peanut butter and jelly sandwiches and the website I was on mentioned how bad peanut butter is for you, that cancer feeds on sugar. So of course I startthinking your body craves what it needs right, at least thats what I was told. So are Alec's cravings coming from his cancer to feed it so it lives, or is the orange juice the vitamin c he needs. This is why my husband tell me to stay off the Internet.
Well, the good this is Alec is doing great, he does however appear to have some swelling on his right eye, we'll be discussing this with the Dr. shortly.
We will be meeting with the transplant team by Monday to discus the game plan. It was briefly mentioned to us about Alec needing to have a broviack (not sure of spelling) put in, in addition to the Port. With the Port the needle has to be changed every 4 days and with the broviack, 2 tubes directly inserted into a major vein. It will avoid numerous sticks. To put this in he will be sedated and it takes about an hour.
Well thank you all for your continued prayers. I will continue to keep you updated.
My husband stayed with Alec last night, and this is the first time we started chemo with no vommiting, WOW :) They changed his anti nausea medicine as I mentioned before. And I added MonaVie to his diet, a nutriotional supplement. He is definately higher in spirits lately. Before his operation he made this really funny voice straining his vocal cords kind of thing, anyway it was really funny and recently while I was driving he was playing around with Kevin and he did it, he did the voice. It just made my day, I wanted to cry.
Alec continues to excel in his home schooling. His teacher Miss. Moran, a saint, has continued to work with him over the summer. He hasn't missed a beat as far as what he has aquired this past year in Kindergarten. Mark and I are holding him back this year though. He has been out of school since the end of Feb. and he has to have the stem cell transplant in a month. The hospital stay will be 2 months straight, which I am so nervous about. He will also require so much follow-up and clinic visits, that to move him on to the 1st grade will just add unnecesary stress on him.
I explained to him and his briother, Kevin that Alec didn't finish Kindergarten so when school starts again he has to go back and finish it before he can go onto 1st grade. Alec really doen'[s know the difference anyway.
I reistered him in religion for 1st grade because technically he is in 1st grade so he can goto religion with his dear friends Jacob and Nathan. I figured this way he doesn't feel so different.
I have been doing alot of wholistic research to help Alec fight this ugly disease, and you really can drive yourself crazy. I have read about your Ph level in your body being to acidic, yet lately Alec has been craving orange juice. Also prior to his diagnosis he lived on peanut butter and jelly sandwiches and the website I was on mentioned how bad peanut butter is for you, that cancer feeds on sugar. So of course I startthinking your body craves what it needs right, at least thats what I was told. So are Alec's cravings coming from his cancer to feed it so it lives, or is the orange juice the vitamin c he needs. This is why my husband tell me to stay off the Internet.
Well, the good this is Alec is doing great, he does however appear to have some swelling on his right eye, we'll be discussing this with the Dr. shortly.
We will be meeting with the transplant team by Monday to discus the game plan. It was briefly mentioned to us about Alec needing to have a broviack (not sure of spelling) put in, in addition to the Port. With the Port the needle has to be changed every 4 days and with the broviack, 2 tubes directly inserted into a major vein. It will avoid numerous sticks. To put this in he will be sedated and it takes about an hour.
Well thank you all for your continued prayers. I will continue to keep you updated.
Wednesday, July 25, 2007
Mets game
A day at the field, the Mets lost but it was a nice day out.
Thank you, Starlight Starbright
Worker man shirt
Losing alot of weight but still smiling in his worker man shirt donated to him by the facility staff at his elem. school.
Friday, March 2nd 2007
This date changed our lives forever. Here we are a month before our 3rd son was expected to make his appearance into this world, and Alec our 5 year old son began vomiting on and off for about 2 weeks. This came right after a month of strep throat. Our older son had come home from school with a stomach bug, accompanied with a letter from the nurse distributed school wide about this stomach bug making it's way around the school and to please not send your child into school if he/she is symptomatic.
So of course the following week Alec started vomiting and our PA said it's viral. Well the next week came and Alec was still vomiting, mostly in the morning and it was never accompanied by a fever. So I brought him back to the Dr.'s office and is PA grew concerned, conceding that it is not viral and she began a full physical. Although she found nothing unusual she advised me to take him for a ct scan. I phoned my husband and we both reacted the same way, that she is crazy.
We were thinking some sort of stomach reflux as a result from the antibiotics he was on for so long from the strep throat. My husband even thought maybe he was swallowing to much toothpaste or something. I went ahead and scheduled his appointment for the ct scan any how. I expressed my concern with his PA about the radiation exposure and she seemed to be a little upset that my husband and I didn't want to take him for the test. So we said if he vomits again we'll take him. The next morning came and he did vomit so we kept our appointment and took him.
Needless to say we have been in and out of hospitals since. They did find something, a tumor on the lower cerebellum of his brain. While we were waiting in the waiting room for a copy of the scan I had asked for prior to knowing they found something, arrangements with the radiologist, my pediatrician and a pediatric sergeant were being made.
A woman opened the door to the waiting room and invited us in, telling us because it's a Friday and his age the Dr. was reviewing his scan. My husband and I both looked at each other and in hearts we knew something was wrong.
We walked into this room only to be described as a walk in closet with a shelf and a phone. I was walking in front of my husband but they pulled a chair out for me and handed the phone around me and to my husband. He began to shake and his eyes filled up with tears and he began writing down names, as I sat there saying what, what over and over again until the tears wouldn't stop rolling down my face.
We left the radiologist office and headed straight for the hospital, where the sergeant and oncologist was waiting for us. We were immediately admitted into PICU. An MRI of his brain and spine with contrast was preformed.
The MRI revealed the spine also has 2 drop mets on it indicating the cancer has already spread. Dr. Egnor, wasn't sure what type of brain tumor it was, he gave us a couple of possibilities.
Sunday, March 4th
Alec went in into surgery to have the brain tumor removed, the spine is in operable because of their placements in front of the spine. The surgery was a success it was a little longer than expected but a complete resection was done. Of course this was just the beginning of his fight. 2 days later he had to go in again for another surgery because he was draining to much. The removal of the tumor caused the brain ventricles to shrink and spinal fluid kept building up. He had a 3rd ventrciosomy done, the made a gully in the 3rd brain ventricle for excess fluid to drain to, and a mediport put into his chest for chemo treatments.
Luckily the ventricosmy worked and a shunt was not needed.
The pathologist report came in and he was diagnosed with: ANAPLASTIC LARGE CELL MEDULLOBLASTOMA.
Having been unimpressed with the level of care received in the hospital as far as the oncology ward in concerned we started looking else where for his after care treatment. We were told by his sergeant,Dr. Egnor, the aggressiveness and seriousness of follow up treatment Alec needed to fight this disease, yet my phone calls and visits from Dr. Parker, the oncologist went unanswered. I was given a consult appointment 2 months away and he never called me back on the several occasions I left him messages. They drop this bomb on us and reiterated how aggressive this tumor is, that it's not a standard medulloblastoma because of it's cell make up and really just left us out to dry. Not to mention that they never treated his type of cancer before.
My husband, Mark and I began searching for other hospitals who have treated and cured his type of medullo before. Considering we were expecting our 3rd son in a month in a half and our older son Kevin needed to keep going to school we had to stay in the NY area. With much advise from our family, Mark's cousins are in the medical field and my uncle so we valued their opinions. My Uncle Nick made some phone calls and gave us a few suggestions but once I explored them we ran into health insurance matters. Mark's cousin Patti consulted with some Dr.s at her hospital and they recommended Schneider Children's Hospital in New Hyde Park, specifically Dr. Atlas. We got an appointment with him and felt very comfortable and trusted his medical advise.
Alec had a spinal tap 2 days later. Dr. Atlas didn't want to waste anytime. The spinal tap came back negative for disease which I would think is good considering the other 2 drop mets on his spine but Dr. Atlas still didn't trust the disease. Being that there are the spinal spots it indicated that the disease did spread and needs to be attached aggressively.
The following week we met with Dr. Atlas again, he had met with the tumor board and had a game plan for Alec's treatment. They want to do the sandwich approach, 2 rounds of chemo, 6 weeks of radiation with oral chemo at home, 2 more rounds of chemo and then an autologue stemcell transplant, in which his own stem cells were harvested, frozen and then given back to him. The name of his treatment is: Head Start II
The first 2 rounds of chemo were really rough on him, extensive vomiting, weight loss and just not himself. He was admitted twice in between treatments for a fever, both times the fever broke on it's own with negative blood cultures. The radiation wasn't that bad, the did a boost to where the tumor was and the drop mets. We havn't had an MRI done recently, but the last brain MRI of the brain was clear.
We just finished our 3rd round of inpatient chemo and it went well this time, not too much vomiting, they tweaked his anti nausea meds and it works, yeah!! He is presently on his mouth care (Nystatin, Biotene), Megase (appetite stimulant), Zofran, Phenergan, Bactrim, Neupogen shot, MonaVie. We just were released yesterday, July 24th from the hospital, he was admitted this past Friday with a fever. He is doing well now though, very up in spirits.
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