Tuesday, September 30, 2008

Mike update 9.30.08

We made a big decision yesterday. In speaking to the Dr's here and at Sloan Kettering we feel that Sloan is the place we need to be. With this being an un-identifiable tumor after 10 days Matt and I, and our families think that this has gone on long enough, actually we think it has gone too long, with no answer and that the best place possible for him is Sloan.

The neuro-pathologists here and the neuro-pathologists that they sent slides to at Duke can't figure out what kind of tumor this is in his spine. So, Mike had another surgery last night. This one was done so that the surgeons could get more tissue that all of the pathologists feel that they need to make a diagnosis. He was in surgery for about 3 1/2 hours. They had made sure to wait long enough in there for the pathologists to see that they had enough to work with. When the pathologists looked they didn't feel that there was enough tissue from the Drs just getting pieces of this coating on his spine so they actually ended up having to go into the spinal cord to get the tissue they needed from what looks to be the main tumor. They got what they could and what the pathologists said was enough for everyone to work with and still have enough to save to send to Sloan.

My mom stayed the night here with me last night so she could help me and I could help Mike. I was really glad she did because when we got to the PICU last night around 10 Mike had a very rough first couple of post-op hours. He just kept laying there saying all done, no no, ouch, uh-oh, crying and calling for me. The worst was when he started I sit mommy in chair, i sit mommy in chair... I hated hearing him that way. I was really hesitant to pick him up since he just had spinal surgery but the nurses and the neurosurgeon PA all said it was ok for me to hold him. He laid on me and fell asleep for about 2 hours so that was a HUGE blessing. Around 2:15 the nurse came in to give him more pain meds and to take his vitals so we moved him to the crib for that. He is VERY guarded about moving himself too much. He is moving his arms and legs very well and he is speaking well but the incision that they made in his back is so big and add that to the fact that they had to go into the spinal cord while they were doing the surgery he is uncomfortable enough to be very cautious of how he moves. We are still in the PICU and I am grateful for that. The nurses here are wonderful and have all been so great with us. Don't get me wrong, the nurses on the regular floor are great too but there is just something more comforting about being on the PICU just after surgery and making sure that the nurses are just a little more on top of him here than on a regular floor.

He is doing really well now. We have been giving him Tylenol w/ codeine every 4 hours to control the pain and uncomfort that he is feeling. He is eating and is sitting in the high chair now playing with his DVD player. We are hoping to be transferred back to a regular floor today.

Needless to say, Mike and I both have a reputation around the hospital, he is the adorable stubborn little guy who hates anyone in scrubs and I swear they must think I'm a lunatic. This not knowing what the hell is growing inside his little body makes me sick to my stomach and I am absolutely beserk that between 4 neuro-pathologists here and 2 neuro-pathologists at Duke they can't figure out what kind of tumor this is. And I have no qualms telling that to anyone who will listen here. One of the neuro surgeons actually said that I was a new kind of parent to him because I talked to them like they were human and just told it like it was. I don't know whether that is good or bad but I took it as a compliment! LOL

Anyway, so far the plan for us is for Mike & I to fly into NY via air ambulance on Thursday. We are setting that up today and we will be admitted into Sloan Kettering as soon as the air ambulance and ground ambulance can get there. Katie's last day of school down here will be Friday and my mom will fly her up on Saturday. She will stay w/ my mom as long as Mike is an inpt. there. She is coming up to visit today so I am happy about that. We have all been very conscious to make sure she hasn't been at all left out of anything. We tell her what we think she can handle and make sure she is involved in everything since she is a part of the family. St. Francis already has a seat open for her and she will be in class w/ some of the girls she was friendly with in pre-k. My mother-in-law has offered to stay here for a few more days and pack up my car with stuff that we will need while we are at my mom's and will drive my car up for me.

So, that's the story for now. Thank you all so much for your thoughts, prayers, phone calls, etc. It means so much to me that you are all thinking about us and praying for us. We can certainly use all the prayers we can get! I will be in touch later and update when we know more. Thanks so much again! Love and miss you all

Sunday, September 28, 2008

Mike update 9.28.08

I would live in Florida for 100 years if it meant not having to move back to NY for something like this.

We have decided to go back to NY for any treatment that Mike will need. Even though we don't have a diagnosis we have learned that pretty much any spine/brain tumor gets treated w/ chemo regardless of whether or not it's benign or malignant. The support system we have up there is amazing. Down here, as wonderful as everyone we have met is, it just isn't the same as having my family all around me for the very long, very hard months ahead.

We pretty much have all the details worked out. Katie will go back to her old school where my mom works and we will live with my mom. Matt won't be able to come since we can't lose the insurance. We just told Katie this weekend while she was up here that we will be living at Grandma's for a while so that the Drs can help Mike feel better. We didn't tell her that Matt won't be up there with us. He is going to try to work out his work schedule so that he can get up there every other week for 3 or 4 nights at a time.

I overnight UPS'ed Mike's MRIs, CT scans, X-Rays and stuff to a Dr at Columbia/NY Presbyterian and we have found a Dr at Sloan Kettering that will take Mike's case already. I think once I talk to the people at NY Presbyterian I will be more comfortable making a decision on where to go so that Mike can get the best care possible.

I am so numb with all of this going on. I can't comprehend any of it. It feels like I am living in a fog and just going through the motions. I don't know whether I am coming or going and I just keep hoping and praying that I am making the best decisions I can for Mike. It is just so absolutely horrible and beyond me that anyone should have to search for an oncologist for their 2 year old.

Thank you again for all of your prayers, please keep them coming... I will update more soon...


Friday, September 26, 2008

Mike' 2nd surgery update 9/26/08

Today Mike had his 2nd surgery in 7 days. The neurosurgery team decided that placing a permanent shunt would be the best thing to do with all of the excess fluid issues Mike has been having due to the spinal issues. I can't even really begin to fully deal with all of this so I have been calling it spinal issues. I don't think it will really hit me what we are dealing with until we get a firm diagnosis and a type of issue we are dealing with.

They did an MRI first that they had to sedate him for and then they brought him to the OR. He was supposed to go for the MRI at 8 this morning so he was NPO from midnight on. At 7 the neurosurgery PA walked in to tell us that things had been pushed back and he wouldn't be called for an MRI until 10. Needless to say, Mike was waking up for the day and we had to keep him from eating or drinking anything from 7 to 10:30 when they finally called for him. It killed me to not let him have anything but I couldn't postpone anything because if we didn't do it today it would have had to wait until Monday.

Mike came through surgery wonderfully. It is so good to see him without that drain coming out of his head. He is really uncomfortable now but he has been such an amazing trooper. I can't even begin to imagine what he must be feeling and how scared he must be. It just absolutely breaks my heart. He came out of anesthesia in the recovery room screaming 'I want my mommy' so loud that they actually called me back to the room to comfort him. Once he saw me he started asking for sticks (pretzel sticks), o's (cheerios) and Monster Hits (the dvd that he loves that has been on pretty much all day every day for the past week. It made me feel better that he was looking to eat. So when we got back up to the room we started him on a little water and then he had sticks and o's. That's when he started asking for ketchup. So I ordered him a scrambled egg and gave him an egg w/ ketchup for dinner! He was having a really hard time sitting up though, apparently a lot of kids that get shunts have really bad low pressure headaches and are pretty dizzy and feel miserable when they sit up for the first few days. He isn't on any Rx pain meds but on Tylenol and Motrin and he will get Dilaudid in the morning before his CT scan to make sure all is working ok.

So, that's the news for the day. We still have no diagnosis and I am reasearching the sh*t out of Drs, facilities and treatment options for a whole array of things that this spinal issue could be. I HATE the waiting game. I HATE seeing him like this. I HATE this situation. It is like something out of a 'It happened to me' short story that you read in a magazine like Good Housekeeping or Family Circle. I have been praying and believing non-stop that the tests will come back that this issue is benign and I ask that you all do the same. That it is benign and treatable.

Thanks for the thoughts and prayers...


Thursday, September 25, 2008

Mike update 9.25.08

We are getting another MRI done tomorrow and are going in for another surgery to take out the temporary drain and replace it with a permanent shunt.

We have gotten preliminary pathology results back and they are now ruling out an infection. The path results are showing that this is a tumor/growth of some kind and we will have to wait until next week to get the final pathology results.

I can't even type anymore because I am so upset. Please keep us in your thoughts and prayers...

Tuesday, September 23, 2008

Mike update 9.23.08

We were moved out of the PICU this morning. They have decided that they have a good handle on the brain fluid drainage and will continue to do what they have been doing in terms of draining and monitoring manually. We have no news as to a diagnosis though. I don't think anyone can even guess-timate when we may get something on that front.
Mike has been an amazing kid during all of this. He really has no love for any of the medical professionals that have come in to check on him though! As soon as someone in scrubs or a white jacket comes in the room he yells, 'no no no', 'all done', 'not now' but the nurses have taken it all in stride. The nursing staff has been amazing here, they have been so great with Mike and so tolerant of me and all of my questions. He hasn't tried pulling at the drain in his head since the night of surgery and he only scratched at the stitches once and that was the first night too.
I really just can't wait for a diagnosis. There is something so very wrong with sitting in a hospital room waiting to find out if your 2 year old has some kind of rare infection, some kind of rare growth, a spinal tumor or cancer... Please keep us in your prayers...

Mike PICU Update 9.21.08

****This was copied from an e-mail update I sent on Sunday 9.21.08

Hi everyone,
First, thank you so much for your good thoughts and prayers. Second, please keep them coming, we can certainly use them! Third, I am sorry I haven't answered some e-mails and phone calls but I hope you can all understand why that is.
We have been in All Children's Hospital in St. Pete Florida since Wednesday night. I don't know who knows what brought us there but if you don't know I will fill you in if you need to be filled in.
Matt brought Katie up today so that I could take her out to lunch. My mother-in-law flew into Tampa, came in to see Mike and then took Katie back to Cape Coral for us. She is going to stay at our house w/ Katie until we get out of the hospital. Matt stayed with Mike & me for a little while then drove back to the house so he could put Katie to bed. He is going back to work tomorrow so he will be home every night to put Katie to bed. She really needs one of us home. She has no idea Mike had surgery, she just knows that he has a booboo in his brain. I didn't want to let her see him because I was afraid of how affected she would be to see him with a tube coming out of his head. She is upset, worried and nervous but she has been holding it together rather well. Her teacher sent her to the school guidance counselor on Thurs & Friday and I think she is going to do the same thing this week. All in all, she has been doing as well as I think she could be doing.
I just left Mike at the hotel with my mom so that I could get some sleep. I am mentally and physically exhausted and need to be back in a few hours so I am going to re-cap as best I can, shower and head to bed.

I know some of you know this, but Mike had surgery on Friday. Thankfully he came through it great. The neurosurgeons placed a temporary drain in his brain and removed a piece of the growth on the bottom part of his spine and a part of the L5 vertebrae. The frozen specimen of the growth and the fluid that they sent to pathology while he was in the OR were inconclusive so they are running tests on everything. So far the Drs really don't know anything and they won't guess on anything. The general consensus of the Drs is that this could be an infection or a tumor and the only thing they can rule out is a sarcoid issue. The frozen specimen showed that this growth is cellular in nature and not granular so that's how they ruled out a sarcoid. The tissue that they took out to test goes all the way up his spine so we can't even begin to think about a way to treat it until we find out what it is. That night and all day yesterday was horrible... he was in pain and had a reaction to the morphine they gave him, he was hooked up to 3 monitors, a holter monitor, 2 iv's (one in each hand), a pulse ox monitor on his toe and had the drain in his brain. He hates it! Not to mention that he has to have his BP taken every hour!

As of tonight, Mike is still in the PICU. The neurosurgeons have him on a monitor to test the pressure in his brain and determine whether or not he needs a permanent shunt. He has a great team of Drs... neurosurgeons, infectious disease, cardiology, ophthalmology, intensive care and pediatrics. He is going for a CT at 5 AM. The Drs don't feel that we will have any answers for a while on what this tissue is. They said we may have something anywhere from this Wed. to next Friday.

I have never really been any good at the waiting game. I suck at it normally and now I am even worse at it.
Mike has been a real trooper during all of this! His right wrist is wrapped up with an IV and there is an IV port in his left hand too, his drain in the brain is still in there obviously, the PICU monitor is still attached to him with 3 leads and the pulse-ox monitor is still on his foot. His BP still needs to be taken every hour and that is still really pissing him off. But, even with all of that and all of the poking and tests and surgeries he is playing, laughing, talking, watching his DVDs and eating up a storm.
We are hoping that he can get off the brain pressure monitor tomorrow and that we will be able to be transferred to a room on a regular floor until we get a diagnosis.

I am going to head to bed. I will update you when I can. I have my cell phone on at all times so feel free to call me, if I can't answer your call I will get back to you as soon as I can.
Again, thank you all for the prayers and good thoughts. Please keep them coming!

Mike update 9.18.08

**This was copied from an e-mail I sent on 9.18.08

I am going to make this short because we are waiting to go for some more tests. On Monday evening (9.15.08) I noticed Mike's eyes were starting to cross. I was able to get him into the pediatrician on Tuesday who agreed that it was very concerning that it came out of no where. The ped was able to get me in with a pediatric ophthalmologist yesterday. The ped opth. saw that his optical nerve was swollen and called the neurologist. Between the swollen nerve, the crossed eyes and the ventricle issue on the MRI both Dr's felt that we should go to the SW Florida Children's hospital ER. We spent hours there and had another MRI done. After that it was decided that we should be sent to All Children's Hospital in St. Pete/Tampa.
We just saw the ophthalmologist here and he said that the swelling of the optical nerve is most definitely caused by the pressure in the brain. We are going to be brought down for an MRI and a spinal tap to check for infection because when the MRI from last night was enhanced the neurosurgeon saw white spots in the fluid around the brain. It wasn't in the brain tissue but actually in the fluid. We have seen the ped. ophthalmologist and an infectious disease Dr this afternoon and are being sent for the spinal MRI and spinal tap in about 20 minutes.

So, that's about all I know for now. I am an absolute mess but am trying to hold it together for my little man. I will try to update you all when I can. Please keep us in your thoughts and prayers

Thursday, September 11, 2008

9.11.01... Has it really been 7 years?

Seven years ago... is that really possible? Has it really been 7 years? It seems like only yesterday. My nightmares still come, I now really dislike the sound of airplanes over my head and whenever I smell smoke it brings me back to that day.

It was one of those days that I don't think anyone who was alive to see it and old enough to know what was going on will ever forget what they were doing. 9/11/01 joins the day JFK was shot, the day the Challenger blew up and the day that Pearl Harbor was attacked as a day all Americans will remember until they day they die. Over 2700 people lost their lives, our country was attacked, the United States and most certainly New York will never be the same.

It was a beautiful, end of the summer morning in New York City. One of those mornings that you just wanted to call into work sick and spend the day outside. I was so excited because on September 10, 2001 I had my OB appt at NYU where I found out for sure via ultrasound that I was indeed pregnant with a little girl. The 2 ultrasounds before the tech couldn't really tell for sure but this one, she was positive! I had my ultrasound with me and was anxious to share the news with my co-workers that Matt & I would be welcoming Katie Kelly in January!!

I got to our office at 14 Wall Street around 8:15, changed my shoes from heels to sneakers (yep, working on the NYSE was probably one of the only jobs where you did a reverse shoe change in Manhattan! On my feet all day I prefered to look good going to work and be comfortable standing all day!) and went down to the floor to set up my spot around 8:30.

At 8:42 we all heard a crash. Rumors started swirling around the floor. A small plane had hit the WTC. That was just a few blocks away. It couldn't be. What really happened? What is going on? Would the market open? Would we have a delayed opening? What could we do? I automatically walked to my dad's booth on the NYSE. His booth was in another room but there were TVs that played every major news-station and the NYSE admins had their meetings right near him so I was hoping to get some idea of what the hell happened from there. Dad wasn't in yet so I left him a note to meet me at my post when he got there. By that time it was 9. And there it was again. Only this time the noise was louder and for some reason as we heard the noise we all looked up at the windows. There was debris and smoke everywhere. For anyone that has been on the floor of the NYSE you know the windows are high up and tinted but even through the green of the windows we knew there was something very wrong. The guys in my firm that were down there and I agreed that we should go to our office across the street and get our things and try to figure out what the hell to do. I left my dad another note to let him know where I was and to call my office to let me know he was ok when he got in.

It was a mess when we left 11 Wall Street. Smoke, soot, papers, debris everywhere. And the smell... it was indescribable.

As the guys and I got up to the office the news was on, as it is in every financial office in the world. We sat there fixed on the TVs. We were told that our building and the NYSE buildings were in lockdown. We couldn't leave. Thankfully my cell phone worked for a few minutes and our office phones stayed operational the whole time. My dad got through to me, he was upstairs in the NYSE offices teaching a new broker's class. He was on the floor now and none to happy with the fact that I left the building without him. I told him that I would be ok and that we were going to just wait it out and get the hell home... that's all I wanted to do, get the hell home. Me & my baby needed to get out of there... that's what I focused on and that's what I was going to do.
The guys and I watched in awe as all of this happened around us. We watched as the report came in that the Pentagon was hit. Then we watched on TV as they confirmed what we had heard, smelled and saw just seconds before... the first tower went down. It was unbelievable. The office windows went black one by one as the smoke, soot and debris rolled down the streets. The smell that came in through the windows was horrible. Manhattan was shut down. There were no trains, there were no busses... we sat and cried, yes, the tough Wall Street grown men cried right along with the pregnant woman. We were all so helpless and scared. The second building fell, the crash of Flight 93 in Pa... when would it end? Like I said, thankfully the phones in my office never stopped working. Matt called me constantly. My mom hated hanging up every time we were on the phone. My dad called every 15 minutes, he was just across the street but it felt like we were so far away from each other.

Then, the report came in, there were 4 planes that had been hijacked and they were all accounted for. I wish I could say that there was a sigh of relief but there wasn't. I knew so many people that worked in those buildings. I knew so many police men and fire men that were rushing to help those that were trapped and still inside. We all did, we all just wanted to know that the people we knew were ok.

After what felt like days, they finally told us that we could leave our building a little after 1 PM. 16 flights of stairs full of dust and dirt from the explosions and collapses. I walked down with one guy on either side of me, one in front of me and one behind me. They were all amazing to me, they were all worried about me and the baby falling. I had told them that it wasn't necessary and that they could get out a whole lot faster than they would walking me down but they wouldn't go. They all kept saying that if it was their wife they would want people to help her.

I walked out of the building around 2 PM that day. I was so thankful to be out of there. We all walked out with wet paper towels on our faces, bottles of water in our bags (thank God for our boss who always had a couple of cases of water in the office), sneakers on our feet and the men all insisted that over the wet paper towels over my face I should have the 2 surgical masks that we had in the office. I walked out with one on over the wet towels and the other in a ziplog bag in my purse in case I needed it later. We all had no idea how we were getting home but we were all going to try.

I met my dad at the door to my office building on Pine Street. We both cried and hugged. I don't even want to tell you what he did to get past the police lines to get to my office. He had 3 other brokers with him. I said good bye, be safe and thank you to the guys that walked me down stairs and started walking with my dad to the Brooklyn Bridge.

I am not going to talk about the walk. I saw things on that walk that no one should ever have to see. I still dream about that walk.

When we finally got to the Seaport area one of my dad's friends ran over to the NY Waterway ferry terminal. There were fishing boats docked there ready to take people back to Brooklyn. He asked them to wait for a few minutes and a few minutes was all they could wait. They were told they had to leave so we had to hurry. We ran to the boat. It turns out they were fishing off of Sheapshead Bay when they heard what happened. They came right to Manhattan to see what they could do and to help get people home. We caught them just as they were about to go on their last trip to Brooklyn. The sight from the boat was surreal. It couldn't be happening. There couldn't be all that smoke in Manhattan. The skyline would never be the same.

Timmy's wife was able to get to the Brooklyn Army Terminal to pick us up. She brought us to my dad's house where I had parked my car that morning. I stayed with dad for a few minutes, called Matt, my mom and my aunts to tell them all that we were ok and that I was coming home. I truly believe that my guardian angels were with me that whole day and were the ones driving my car home. I know I drove it home but I don't remember how. I do remember showing my license to get over the bridge to Rockaway since all of the bridges and tunnels were shut down. When I got home I called Matt. I couldn't bring myself to walk into my home wearing what I was wearing. I was covered in soot, dirt and debris. I smelled like Manhattan. Matt brought down 2 towels and a robe. He covered me on the front steps and I undressed before I went inside. He took care of my clothes and I went right into the shower. I scrubbed and scrubbed and had the water so hot. I was in there for over 30 minutes. Matt called to let people know that I got home and that I was ok while I was in there.

For the next few days word trickled in about those that were missing. They couldn't find them, they never called home, they never walked through the door again. 75 people in my community were lost that day. I went to grammar school with one of them, I knew another one's daughter, I knew someone else's brother, I saw at least 10 of them at mass ... I can safely say that I knew at least 50 of them or a family member of at least 50 of them.

For the first 24 hours after I got home I didn't sleep, I sat on my couch and watched the news coverage only getting up to pee. The next day I went to a vigil, I did the same thing the day after that and the day after that. I took 3 showers a day for 5 days because I thought I still smelled like 9/11. It took me those 5 days to realize that I didn't smell like 9/11, I just couldn't get the smell out of my head. I cried myself to sleep for at least a month and my heart stopped every time I heard a plane fly over my head for months. To this day when I smell a fire I am brought back to that day.

I say a prayer every night thanking God that my dad, Katie & I got home that day and I ask God to watch over the families that were never able to hug their loved one again.

So, for the more than 2700 people that lost their lives, for the families of those people, for the people that were lucky enough to go home... Always remember, never forget 9/11/01...

With Love,