Just wanted to let everyone know that Marco has been admitted to the hospital.  Although, he had a great day on Sunday-he was tired toward the end.  
Monday morning he seemed light-headed as he had been the last week during his hospitalization but his medications have not caught up to the level needed to stabilize his blood pressure.  Around 10:30 Marco came up to have breakfast, sort of choked on his food and his pressure dropped to about 69 in which case we were going to rush him to the ER but I knew he had just had a stressful choking episode so we needed to let him get to breathing normally again, lay him down and monitor him.  And that's just what we did and he was fine the rest of the day.
Tuesday morning, he slept a little more as he had a bad night waking up a few times to go to the bathroom and even a catheter at one point.  He got up about 11 and again he was ok went to the bathroom and wash his face and he immediately felt faint, called the aide that was there with him and when I came down he was slumped over on her and she was trying to take his pulse but what not getting one???  I then took over held him up, saw that he was not responsive and called 911 (and then called Christine Braun who had been there earlier to check up and see how he was doing).  He could not move his body at all, he couldn't speak but he did blink.  I offered him gatorade, and when I brought it to his lips he was trying to drink so I knew that he somehow knew what was going on around him.  He drank a bit and that helped him to come back and I put his CPAP mask on so that he could get some air forced in and that helped until the EMT came and they rushed him to Winthrop hospital about noon.   At Winthrop, they were trying to just stabilize and monitor him until they could get him transported to Columbia Presbyterian in Upper Manhattan.   Finally, at about 8pm I spoke to the doctor Sandeem(PA) who spoke to Ajemian (PCP)who had talked to the Cardiologist Mancini and they decided to admit him overnight at Winthrop and to try to get him transported the next day.  I  finally left about 9:30pm and he was still waiting for a bed.  The plan I'm hoping is to get him stable enough that he can then proceed with the open heart surgery for the mitral regurgitation (leaking valves).  Marco however doesn't feel (as I do too) that he is not stable enough (at least right now) to undergo this surgery.  We'll see what happens today.

Hi all,

First of all I just want to say thank you to all that came and made the fundraiser event such a big success.  We could not believe the HUGE turnout--it was indeed standing room only.  Marco and I were both so overjoyed to see so many familiar faces and even new ones that came from not just the neighborhood but different states as well; Marco's co-workers (even his Boss from his first job--which my expression said it all) and some of his childhood friends made it even more special.  
We are still trying to take it all in.  
We were so overwhelmed with all the expressions of love.  That place was just one big, happy, loving garden.  You could just feel the love flowing and the positive energy there.  Thank you for the generous gifts and the beautiful cards and words written that so encouraged us.
We truly felt the love and the support from all of you.   
And a special thank you to TEAM MARCO:
Words can't express the gratitude I feel when I think about what you guys have all done.  You really helped me put this event together and made it what it was--- AWESOME!!
Thank you for sacrificing your time for us, you don't know how much of a blessing you are in our lives.

My son celebrated his 11th birthday yesterday, September 21 at his favorite restaurant, Shiro of Japan, with all of us and his Godparents and a very close family couple.  He was so happy he would do anything you asked of him.  He was like the Godfather on his daughter's birthday; he couldn't refuse any requests made of him.  I almost didn't make it to his birthday celebration.  I was hospitalized on  Monday the 17th.  The day before, Sunday morning, I blacked out in my bathroom, twice (I sleep on a hospital bed in the basement).  I was about to catheterize myself so I was sitting on a chair in front of my American Standard toilet (rather have a Kohler) but I never did it.  There I was just slumped over on the chair.  I woke up with the catheter still in my hand, unused.  Worse yet I was paralyzed.  I couldn't move my arms or my legs and my chin was in my chest (my skull felt like it weighed 100 lbs).  I reached for the phone and then stopped.  I felt like I was just gonna roll off, in slow motion, right into the toilet.  It's tough enough for me to get off the floor after I've fallen.  I don't want imagine what would have happened with my arms and legs barely moving.  After a bit of time I took some breaths and tried again, real slow and got it.  I used the intercom and called my wife.  She came down and I asked her to hold up my head.  She did.  Now all this time I was feeling really light headed.  My vision was very blurry.  My vision is like looking at snow from the TV screen when there is no reception except its not moving.  While she's holding my head I black out.  She calls the ambulance and when they arrive I convince them to let me stay home and they do.  The next morning I was sleeping upstairs with my wife.  I went to the bathroom and was afraid I wouldn't make it back to bed so I asked Sylvia to help me back.  Just as I'm about to get in bed my vision goes completely black.  I laid down and felt such a relief and soon thereafter I was OK.  Well, that was it, we called my autonomic neurologist and cardiologist.  The cardiologist got back to us first and implored me to admit myself at Columbia ER.  I did and lucky for me the surgeon was away.  I say lucky because I want to do a thing or two with the family before I have open heart surgery.  The cardiologist wants me to have the surgery sooner than later.  God willing it'll be a non-event.  I have a DNR statement for my healthcare proxy.  But my autonomic neurologist doesn't think there's a concern with my breathing muscles once they take me off the ventilator after the surgery is done.

Yesterday September 14th I was in the Upper West side of Manhattan from 9am till 5:30pm.  I started out with three appointments at Columba Presbyterian with the neurologist, urologist and cardiologist.  The most important one was meeting with a cardiologist.   I had blood work and then an echocardiogram.  The 4th appointment was with the heart surgeon.

Heart surgeon believes I need heart surgery. They'll confirm more next week when the actual echocardiogram report comes in. We got back about 6:30pm  Long and exhausting day!  Sylvia, my dear wife was at one point looking for parking for over 3 hours; brutal.  

Ten years ago on 9/11 many fathers, sons, mothers, daughters, brothers & sisters were killed—others, like my son Christopher and I were spared but still scarred. 

But our loved ones will not be forgotten, they will live on in our hearts.

And today as I thank God for another day, for the love and support of my family and friends,  I pray for the strength that only God can give to bring peace and comfort into our lives.  God Bless you today.  --Sylvia

My name is Marco Caban and am married to my wife, Sylvia for 19 years this August 2012 and we have 3 children ages 5, 10, 16.  Though we didn’t plan it this way things worked themselves out that Sylvia was able to stay home since September 2001 to care for our 5 year old daughter and newborn son.  Sylvia was having a difficult pregnancy with our son that summer.  She was suffering with a severe case of sciatica.  Nevertheless, she continued to commute via the LIRR and NYC Transit. She was supposed to work until September 14^th, instead her OBGYN had her go on bed rest due to some complications with the pregnancy.  That kept her home from her job and the tragedy of 9/11 at the World Trade Center.  Needless to say we thank our Lord, for everyday is truly a new day.    Our son, Christopher was born the 21^st of September 2001.  We call him our miracle baby. 

But things weren’t so easy.  Christopher was born with some breathing issues that we later found out that were caused by seizures amongst other diagnoses. We were now faced with some really difficult decisions. Our lives had been flipped.  When the time came for Sylvia to return to work we felt that she should stay home.  We agonized over this decision for the entire time she was home.  This was a huge decision because her income was much higher than mine. But again, God was faithful.  That winter, I received a pay raise to help us make ends meet.  Financially we were OK.   Today Christopher is a special needs child with some cognitive delays but he is a true joy to have around. 

Now it’s July 2007 and we just had our third child, Isabella. I began a new job, at the Federal Home Loan Bank of NY (“FHLBNY”), which was a very well run bank with the implied credit of the US Government, so I knew it wasn’t going anywhere.  I felt things were in place for my family and I.  Life was good.

In May of 2010 I received the devastating news that I had Multiple System Atrophy (MSA).  Receiving a diagnosis of MSA was both heart stopping and overwhelming.  It took the doctors about 4 years to determine what was going on with me.  There were so many questions and no answers.  The worst answer the medical community does offer is that MSA is a progressive neurodegenerative brain disorder. The disease tends to advance rapidly over the course of 7 to 10 years, with progressive loss of motor skills, eventual confinement to bed and death. There is no remission from the disease. There is currently no cure.  I’m at the point where I find myself unable to do the simplest of things; bathing, dressing, walking, cutting my food and more.

And just when I thought it couldn’t get worse, just this month August 2012  I end up in the hospital for 10 days with a pneumonia which actually led to a new discovery-a leaking valve in my heart.  I now am a candidate for open heart surgery.  The worse part is that according to the doctors it has nothing to do with my underlying condition, MSA. 

I think the worse part of it all is knowing that I will not be around for my family. That my wife will have to continue to fight for our special needs child and raise our two other children without me.  I feel I’ve been cheated out of life and worst of all that my kids and wife have also been deprived of special memories such as playing catch with my son, walking my daughters down the aisle when they get married, and growing old with my wife.

One of the major purposes of this fund-raiser is to help me live out the rest of my life as full and as normal as possible. But, also to bring awareness to this devastating disease.   We’d like to be able to share as well as receive information about MSA in order to be better able to cope with the day-to-day challenges of living with MSA.

Some of the needs that will help my daily challenges:

Around the home:

·      Elevator for wheelchair to have access to the basement as well as main level.

·      Ramp to have access in and out of the home.

·      A handicapped accessible bathroom.

Transportation needs:

·      Wheelchair Accessible Van

It is not in our nature to ask for help and many who know us know this to be true.  But as we’ve been told repeatedly, people want to help us.  There are people that have access and the capability of making these sort of life-changing events less devastating and manageable.   It is because of this reason that we are stepping out of our comfort zone and asking for assistance in this very difficult time. 

We ‘d like to thank you in advance for your sincere concern for our family.   And we are hopeful for wonderful blessings to come.  

Just finished massaging my lovely wife. What a work out. I got beads of sweat rolling down my face. Better than using that silly putty the therapists give you. Boring!

It's great to wake up and see your children cheerfully getting ready to get off to their first day of school.  The chaos of eating breakfast, washing up afterwards, brushing their teeth, getting dressed, and slipping on their backpacks to then walk off all spiffy and with that youthful energy.  Sylvia doing it all to then doll herself up to go out and take Bella to school.  She is the 8th Wonder of the World.  To me, she's the cat's meow.

Welcome to my blog.  We'll be using this blog to keep everyone updated on Marco's journey with Multiple System Atrophy.