Our family day out before the last round of chemo in July.
Friday, August 31, 2007
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.
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