February 26th 2009
Hello Everyone
Here we are still at the Baptist Hospital. It’s been almost 4 weeks since we came back to the hospital thinking we’d be home in 2 or 3 days. Regretfully all sorts of complications appeared and things just snowballed. These last weeks have been very stressful for everyone. We’ve had a lot of new challenges and had too many emotional ups and downs.
I’ll give you a rundown of the events.
As you remember we resolved the initial leakage from the Ommaya port. Then we detected the pneumonia right at the beginning. This turned out to be a blessing in disguise since we were able to fight it and stop it in its tracks before it developed into a more serious case.
When that was clearing up we had new problems with the Ommaya port so Ana had to get surgery to take it out and replace it with a new one.
We had the fistula and perforated intestine false alarm that had us all stressed out for about 72 hours.
Last Tuesday (Feb 17th) it looked like we would be home by the weekend and we got hit with another bucket of cold water. A bacterial infection was detected in Ana’s spinal fluid, in other words she was diagnosed with a form of meningitis. We had to wait until Thursday to know exactly what bacteria it was. On Thursday they said it looked like lab contamination because it was a type of bacteria that normally shows up in the intestine. So another sample of spinal fluid was extracted to verify. Saturday afternoon I was informed that the same bacteria appeared again in the cerebral fluid and the doctors determined that the Ommaya connection had been contaminated. So it was necessary to remove the Ommaya port completely. The procedure is very quick but it needs to be done by a neurosurgeon under anesthesia.
So once again on Sunday Ana went to the operating room and had the Ommaya port removed.
As if all this wasn’t enough, Ana has been receiving her three types of chemotherapy on a regular basis. As everyone knows the chemo in itself shakes up anyone. Ana is getting 3 kinds at the same time. Imagine what that does to her, plus the surgeries and the anguish of being at the hospital for almost 4 weeks this time. None of us are in the best of shape.
She’s currently receiving antibiotics to make sure the infection disappears. The test that was done on Tuesday was ok and will be tested again in the morning.
In spite of all this Ana is doing better than could be expected and it looks like tomorrow we’ll finally be going home. We depend on final clearance from the infectious disease doctor and that will be determined by some new test in the morning.
Like I said all these ups and downs have been very difficult on Ana and her emotional fortitude has really been tested. Her will to live is amazing and in the last few days she’s bounced back a bit, she has become a lot more communicative again and is in a pretty good mood.
My mom arrived from Argentina a few days ago. Her presence has been a much needed breath of fresh air. She takes care of the kids and allows me to spend more time with Ana. The nights at the hospital a very long and I’m eating a lot of ice cream and other sweets that I normally don’t touch. So I can imagine I’m putting on weight.
Ana really needs to feel love, human warmth and support from everyone so don’t hesitate to visit her or send her cards and letters.
Hopefully this weekend Ana, the children and I will all sleep under the same roof again.
I pray and hope that she remains well and we can celebrate our wedding anniversary on March 11th at home.
I will let you know as soon as we get home.
Best regards
Victor
Thursday, February 26, 2009
Sunday, February 15, 2009
Ana Updates 023 February 15th 2009 (English)
February 15th 2009
Hello Everyone
I have some great news!!!!!!
The sonogram, the MRI and the other tests that were performed in Ana’s pelvic region we’re just fine! They show no signs of a fistula or any kind of intestinal perforation. It was just a bad scare product of a bit of over diagnosing. I’m sorry if I blurted out bad news before we had the actual facts and got you all very worried but I must admit that I’m very worn out with all this and it’s hard to keep my mind totally centered. It’s been 11 long weeks of non-stop battling everyday. The barrage of messages we got over the two or three from so many of you sending your prayers was amazing.
Ana is doing actually doing very well clinically and we should be able to bring her home in the next few days. However in the last few days she’s been very depressed emotionally. Her emotional setback really started the other day when we told her that she would have to stay a few more days at the hospital. Hopefully bringing her home will revert the current mental state she’s in. She is not alert mentally. Most of the time she’s is gone, almost like an Alzheimer patient, she does have a few hours a day around noon that she’s usually more alert.
So please, if you can drop by and see her at the hospital it does help her very much. Her room number is 5244.
Yesterday was Valentine’s Day. It was the first time since we married almost 14 years ago that Ana and I slept in separate beds on this date. It’s so painful and I miss her physical presence so much. I’m hoping that with motivation, persistence and fighting we will have our time together in the future.
I wanted to share a beautiful song that sums up what Valentine’s Day means to Ana and me. Every since Chiara was born she’s always spoken and dreamt about what it would be like to have grandchildren. In spite of all the difficulties we are currently undergoing the real goal is to meet our grandchildren together and on this Earth.
The song is a John Lennon tune that was never released in a finished version. He was shot and killed while he was preparing the album. The song was released post-mortem on his Milk and Honey album. It’s called “Grow Old With Me”.
I have posted the home demo version by John Lennon and another one by a friend of mine named Damian Wilson. The John Lennon version sounds a bit poor since it was simply done on a home tape recorder back in 1980. It was a work in progress at the time of his killing.
Damian’s version is absolutely incredible duet with Alex Sharpe. Damian is a magnificent vocalist. I met him a few years ago when we worked together on a South American Rick Wakeman tour that I promoted. Damian among other accomplishments sung the part of Jean Valjean in Les Miserables for 3 years. When Damian sent me a copy of this CD back in 2001 it became an instant favorite for Ana and me I hope you enjoy it.
If you like Damian’s version check out the rest of his music at www.damianwilsonmusic.com I think he’s really good.
Best regards and Happy Valentine’s Day to all
Victor
--------------------------------
Grow Old With Me
Damian Wilson version
http://rapidshare.com/files/358142310/01_Grow_Old_With_Me.mp3
John Lennon version
http://rapidshare.com/files/358143832/11_Grow_Old_With_Me.mp3
Grow old along with me
The best is yet to be
When our time has come
We will be as one
God bless our love
God bless our love
Grow old along with me
Two branches of one tree
Face the setting sun
When the day is done
God bless our love
God bless our love
Spending our lives together
Man and wife together
World without end
World without end
Grow old along with me
Whatever fate decrees
We will see it through
For our love is true
God bless our love
God bless our love
Hello Everyone
I have some great news!!!!!!
The sonogram, the MRI and the other tests that were performed in Ana’s pelvic region we’re just fine! They show no signs of a fistula or any kind of intestinal perforation. It was just a bad scare product of a bit of over diagnosing. I’m sorry if I blurted out bad news before we had the actual facts and got you all very worried but I must admit that I’m very worn out with all this and it’s hard to keep my mind totally centered. It’s been 11 long weeks of non-stop battling everyday. The barrage of messages we got over the two or three from so many of you sending your prayers was amazing.
Ana is doing actually doing very well clinically and we should be able to bring her home in the next few days. However in the last few days she’s been very depressed emotionally. Her emotional setback really started the other day when we told her that she would have to stay a few more days at the hospital. Hopefully bringing her home will revert the current mental state she’s in. She is not alert mentally. Most of the time she’s is gone, almost like an Alzheimer patient, she does have a few hours a day around noon that she’s usually more alert.
So please, if you can drop by and see her at the hospital it does help her very much. Her room number is 5244.
Yesterday was Valentine’s Day. It was the first time since we married almost 14 years ago that Ana and I slept in separate beds on this date. It’s so painful and I miss her physical presence so much. I’m hoping that with motivation, persistence and fighting we will have our time together in the future.
I wanted to share a beautiful song that sums up what Valentine’s Day means to Ana and me. Every since Chiara was born she’s always spoken and dreamt about what it would be like to have grandchildren. In spite of all the difficulties we are currently undergoing the real goal is to meet our grandchildren together and on this Earth.
The song is a John Lennon tune that was never released in a finished version. He was shot and killed while he was preparing the album. The song was released post-mortem on his Milk and Honey album. It’s called “Grow Old With Me”.
I have posted the home demo version by John Lennon and another one by a friend of mine named Damian Wilson. The John Lennon version sounds a bit poor since it was simply done on a home tape recorder back in 1980. It was a work in progress at the time of his killing.
Damian’s version is absolutely incredible duet with Alex Sharpe. Damian is a magnificent vocalist. I met him a few years ago when we worked together on a South American Rick Wakeman tour that I promoted. Damian among other accomplishments sung the part of Jean Valjean in Les Miserables for 3 years. When Damian sent me a copy of this CD back in 2001 it became an instant favorite for Ana and me I hope you enjoy it.
If you like Damian’s version check out the rest of his music at www.damianwilsonmusic.com I think he’s really good.
Best regards and Happy Valentine’s Day to all
Victor
--------------------------------
Grow Old With Me
Damian Wilson version
http://rapidshare.com/files/358142310/01_Grow_Old_With_Me.mp3
John Lennon version
http://rapidshare.com/files/358143832/11_Grow_Old_With_Me.mp3
Grow old along with me
The best is yet to be
When our time has come
We will be as one
God bless our love
God bless our love
Grow old along with me
Two branches of one tree
Face the setting sun
When the day is done
God bless our love
God bless our love
Spending our lives together
Man and wife together
World without end
World without end
Grow old along with me
Whatever fate decrees
We will see it through
For our love is true
God bless our love
God bless our love
Thursday, February 12, 2009
Ana Updates 022 February 12th 2009 (English)
February 12, 2009
Hello Everybody
As you all know Ana returned to the Baptist Hospital the previous Sunday (February 1st). We thought she would be there for a couple of days at the most. We’d resolve the leakage from the Ommaya port in her head and then she’d go home.
The leakage of spinal fluid was stopped. She ended up getting surgery to replace the port. Due to the radiation she received the skin on her head is very weak so there are some healing issues. Hopefully they won’t give us too much trouble.
Ana has developed a case of pneumonia. So even though the problems with the Ommaya port have been resolved; the doctors decided to keep her hospitalized for more time until the pneumonia has totally cleared and she finishes the cycle of intravenous antibiotics.
The bottom line is that once again Ana has responded very well to her treatments and the pneumonia has been cleared. The leakage from her Ommaya port turned out to be a blessing in disguise. Since she was in the hospital when the pneumonia developed we were able to really attack it at the very beginning and stop it in its tracks before it got out of hand.
Until yesterday afternoon it looked like she would be going home tomorrow morning, but we never have a dull moment.
Regretfully it looks like Ana now has a fistula in her vaginal region with an apparent perforation of her large intestine. It’s too early to know exactly why this has happened or the exact origin. We are getting studies done between today and tomorrow which will determine the exact cause and treatment. This can be a serious problem since she’s way too weak to get surgery in her abdominal region.
Let’s hope and pray that this is just another setback that will also be surpassed. The last thing we need are additional complications to snowball into something serious.
Regretfully Ana won’t be home for Valentine’s Day.
I know it’s a last minute request but I would really appreciate if you can send Ana and the children a few Valentine cards.
Once again our address is
5350 SW 154th Court
Miami FL 33185
Please drop by to visit her at the hospital she really needs the cheering up. So do I actually.
Sincerely
Victor
Hello Everybody
As you all know Ana returned to the Baptist Hospital the previous Sunday (February 1st). We thought she would be there for a couple of days at the most. We’d resolve the leakage from the Ommaya port in her head and then she’d go home.
The leakage of spinal fluid was stopped. She ended up getting surgery to replace the port. Due to the radiation she received the skin on her head is very weak so there are some healing issues. Hopefully they won’t give us too much trouble.
Ana has developed a case of pneumonia. So even though the problems with the Ommaya port have been resolved; the doctors decided to keep her hospitalized for more time until the pneumonia has totally cleared and she finishes the cycle of intravenous antibiotics.
The bottom line is that once again Ana has responded very well to her treatments and the pneumonia has been cleared. The leakage from her Ommaya port turned out to be a blessing in disguise. Since she was in the hospital when the pneumonia developed we were able to really attack it at the very beginning and stop it in its tracks before it got out of hand.
Until yesterday afternoon it looked like she would be going home tomorrow morning, but we never have a dull moment.
Regretfully it looks like Ana now has a fistula in her vaginal region with an apparent perforation of her large intestine. It’s too early to know exactly why this has happened or the exact origin. We are getting studies done between today and tomorrow which will determine the exact cause and treatment. This can be a serious problem since she’s way too weak to get surgery in her abdominal region.
Let’s hope and pray that this is just another setback that will also be surpassed. The last thing we need are additional complications to snowball into something serious.
Regretfully Ana won’t be home for Valentine’s Day.
I know it’s a last minute request but I would really appreciate if you can send Ana and the children a few Valentine cards.
Once again our address is
5350 SW 154th Court
Miami FL 33185
Please drop by to visit her at the hospital she really needs the cheering up. So do I actually.
Sincerely
Victor
Tuesday, February 3, 2009
Ana Updates 021 February 03rd 2009 (English)
February 3, 2009
Hello Everybody
After having Ana at home for almost 10 days on Sunday evening we took had to take her back to the Baptist Hospital. The port she has in her skull for the chemotherapy was leaking and it was recommended that we admit her to the hospital ASAP.
This is just a precaution and is not a worsening of her general condition or anything similar.
The scanning has revealed that the port is ok and no surgical intervention to repair or replace it seems to be necessary.
We will probably be at the hospital for a day or two. I’ll let you know when we go home again. She won’t be released until the leaking has been resolved. So while she’s there some additional testing will be done.
Due to the chemotherapy she’s a bit anemic so she’s received a unit of blood to help keep her strong.
She was in a very bad mood on Sunday and yesterday since she didn’t like going back to the hospital and the kids got worried that she might be away for many weeks again. Everyone seems to be calming down and we’re looking forward to having her back home before the weekend.
I’ll let you al know when she’s home again. In the meantime please keep sending those welcome home and get well cards. She loves receiving the cards and your personal visits. It really helps lift her spirits.
To visit her personally she’s at the Baptist Hospital room 5244
I haven’t sent any messages since Ana was released from the hospital 11 days ago. I’m sorry, but adjusting to all the home nursing hasn’t been easy. It’s a new and difficult challenge.
So in spite her being back at the Baptist for a few days let me go back and tell you a bit of what happened during the first 10 days at home.
We had to set up a hospital bed for Ana at home. I decided to place it in the living room so she’s in the middle of the house and can be part of the home activities.
All the care giving at home is so exhausting it really gives the words “in health and in sickness” a whole new and deeper meaning than when we pronounce and promise them at time of marriage.
I’ve had to learn to give her shots, control her blood sugar, take her blood pressure, change her diapers, and a lot of other things that I would prefer to keep private. Just keeping track of all the medications and their correct dosage is a mind boggling task.
I’m exhausted but I don’t sleep well at all. I’m jumpy all the time and constantly worried that something might be wrong. All the effort is worth it because Ana is able to see the children every morning as soon as they crawl out of bed and have them give her a good morning kiss and hug is literally priceless. The same happens when they get home from school or they give her a goodnight kiss before bed.
The kids have gotten so used to having her home that the other day they just walked in from school and didn’t even say hello to her. I couldn’t believe it. For weeks and weeks they were asking and begging for her for Ana to come home, and now that she’s home they very non-chalantly say “Oh, hi mom”.
The biggest change has been Sophia. At the age of 3 it’s very difficult for her to understand that the person she sees with no hair is mommy. So while Ana was at the hospital Sophia would hardly interact with her. All of a sudden at home we have to restrain Sophia from jumping on Ana’s bed and accidentally hurting her.
Chiara will sit down and read stories and/or her school essays to Ana. Eric will show her different toys or his new score on his Nintendo DS game. There’s a long list of everyday things.
Ana just glows with all the positive energy and love she gets from the children.
So do the children.
Another favorite activity is cuddling up with Ana. One of the kids or me will squeeze into the space between Ana and the bed safety rail and snuggle up or even sleep with her for a while. It can be a bit uncomfortable but it’s well worth it.
Hopefully in the near future we can get Ana to go upstairs and we can share our normal bed again. I miss her physical presence while I sleep so much. It’s like having a big empty hole on the right side of our bed.
Having Ana home and sharing her physical presence plays right into today’s song. It’s an old Billy Joel tune from his Piano Man album. It’s called “You’re My Home”. It’s not one of his greatest hits, most people will never even recall hearing it before but this song has always had a lot of meaning for Ana and me. I hope you like it.
Once again thank you so much for all the concern, love, support, energy and prayers you are all continuously sending Ana and my family.
Sincerely,
Victor
---------------------------
Billy Joel – You’re My Home
http://www.youtube.com/watch?v=c4D40r-E7yk (live in 1978)
http://www.youtube.com/watch?v=9HJgNmOtVNY (live in 2006)
When you look into my eyes
And you see the crazy gypsy in my soul
It always comes as a surprise
When I feel my withered roots begin to grow
Well, I never had a place that I could call my very own
But that's alright my love,
'Cause your my home
When you touch my weary head
And you tell me everything will be alright
You say, use my body for your bed
And my love will keep you warm throughout the night
Well, I'll never be a stranger
And I'll never be alone
Where ever we're together that's my home
Home can be the Pennsylvania Turnpike
Indiana early morning dew
High up in the hills of California
Home is just another word for you
If I traveled all my life
And I never get to stop and settle down
Long as I have you by my side
There's a roof above and good walls all around
You're my castle, you're my cabin and my instant pleasure dome
I need you in my house 'cause you're my home
Hello Everybody
After having Ana at home for almost 10 days on Sunday evening we took had to take her back to the Baptist Hospital. The port she has in her skull for the chemotherapy was leaking and it was recommended that we admit her to the hospital ASAP.
This is just a precaution and is not a worsening of her general condition or anything similar.
The scanning has revealed that the port is ok and no surgical intervention to repair or replace it seems to be necessary.
We will probably be at the hospital for a day or two. I’ll let you know when we go home again. She won’t be released until the leaking has been resolved. So while she’s there some additional testing will be done.
Due to the chemotherapy she’s a bit anemic so she’s received a unit of blood to help keep her strong.
She was in a very bad mood on Sunday and yesterday since she didn’t like going back to the hospital and the kids got worried that she might be away for many weeks again. Everyone seems to be calming down and we’re looking forward to having her back home before the weekend.
I’ll let you al know when she’s home again. In the meantime please keep sending those welcome home and get well cards. She loves receiving the cards and your personal visits. It really helps lift her spirits.
To visit her personally she’s at the Baptist Hospital room 5244
I haven’t sent any messages since Ana was released from the hospital 11 days ago. I’m sorry, but adjusting to all the home nursing hasn’t been easy. It’s a new and difficult challenge.
So in spite her being back at the Baptist for a few days let me go back and tell you a bit of what happened during the first 10 days at home.
We had to set up a hospital bed for Ana at home. I decided to place it in the living room so she’s in the middle of the house and can be part of the home activities.
All the care giving at home is so exhausting it really gives the words “in health and in sickness” a whole new and deeper meaning than when we pronounce and promise them at time of marriage.
I’ve had to learn to give her shots, control her blood sugar, take her blood pressure, change her diapers, and a lot of other things that I would prefer to keep private. Just keeping track of all the medications and their correct dosage is a mind boggling task.
I’m exhausted but I don’t sleep well at all. I’m jumpy all the time and constantly worried that something might be wrong. All the effort is worth it because Ana is able to see the children every morning as soon as they crawl out of bed and have them give her a good morning kiss and hug is literally priceless. The same happens when they get home from school or they give her a goodnight kiss before bed.
The kids have gotten so used to having her home that the other day they just walked in from school and didn’t even say hello to her. I couldn’t believe it. For weeks and weeks they were asking and begging for her for Ana to come home, and now that she’s home they very non-chalantly say “Oh, hi mom”.
The biggest change has been Sophia. At the age of 3 it’s very difficult for her to understand that the person she sees with no hair is mommy. So while Ana was at the hospital Sophia would hardly interact with her. All of a sudden at home we have to restrain Sophia from jumping on Ana’s bed and accidentally hurting her.
Chiara will sit down and read stories and/or her school essays to Ana. Eric will show her different toys or his new score on his Nintendo DS game. There’s a long list of everyday things.
Ana just glows with all the positive energy and love she gets from the children.
So do the children.
Another favorite activity is cuddling up with Ana. One of the kids or me will squeeze into the space between Ana and the bed safety rail and snuggle up or even sleep with her for a while. It can be a bit uncomfortable but it’s well worth it.
Hopefully in the near future we can get Ana to go upstairs and we can share our normal bed again. I miss her physical presence while I sleep so much. It’s like having a big empty hole on the right side of our bed.
Having Ana home and sharing her physical presence plays right into today’s song. It’s an old Billy Joel tune from his Piano Man album. It’s called “You’re My Home”. It’s not one of his greatest hits, most people will never even recall hearing it before but this song has always had a lot of meaning for Ana and me. I hope you like it.
Once again thank you so much for all the concern, love, support, energy and prayers you are all continuously sending Ana and my family.
Sincerely,
Victor
---------------------------
Billy Joel – You’re My Home
http://www.youtube.com/watch?v=c4D40r-E7yk (live in 1978)
http://www.youtube.com/watch?v=9HJgNmOtVNY (live in 2006)
When you look into my eyes
And you see the crazy gypsy in my soul
It always comes as a surprise
When I feel my withered roots begin to grow
Well, I never had a place that I could call my very own
But that's alright my love,
'Cause your my home
When you touch my weary head
And you tell me everything will be alright
You say, use my body for your bed
And my love will keep you warm throughout the night
Well, I'll never be a stranger
And I'll never be alone
Where ever we're together that's my home
Home can be the Pennsylvania Turnpike
Indiana early morning dew
High up in the hills of California
Home is just another word for you
If I traveled all my life
And I never get to stop and settle down
Long as I have you by my side
There's a roof above and good walls all around
You're my castle, you're my cabin and my instant pleasure dome
I need you in my house 'cause you're my home
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