Good news, the 9 month post chemo CT scans and chest X-rays are clear! The only thing of note was what they call the Thymus rebound. This is where the Thymus becomes slightly enlarged after having received chemo. They oncologists were not concerned about it.

The next set of scans is in 3 months at the 1 year post chemo mark. No matter how long after chemo, I will always be nervous when scan time comes. This is what my life has become: every three months right around scan time, I worry intensely until we get the report, then I am elated for a few days. I then go for three months thinking about it maybe once a day. As we get closer to the next scan I think about it many times a day, and the cycle repeats again.

Anyway...on a lighter note. Uncle Lulu has been back from the Army for the past week and staying with us most of that time. The kids missed him and he missed them. They've been having a good time with him. Last night Maria's parents came over and we got pizza. I opened one box and put it aside. Anthony then started to open the other box and said (with typical flair) "release the other pizza!" He took the little stand (that prevents the box from sagging) off the center of the pizza and it dripped oil on the table. he said "oh, for pizza's sake, there's grease on it!" Maybe he'll grow up to be a comedian, not a doctor as he always says.

We went for Anthony's 9-month post treatment CT scan and Chest X-ray today. He did a great job! He was a bit anxious about getting the IV placed for the contrast dye. He cried a bit, but as usual, he didn't move while it was being done. Everyone at the hospital (Robert Wood Johnson Hospital) was as nice as ever. I paged Peggy (the child-life specialist from Hematology/Oncology) and she came down to stay with us as we waited. She was very happy to see Anthony and always knows how to distract him.

Chest X-ray was easy, as usual. We had to wait a while for CT scan while they got a pediatric nurse who could place the line. We watched 3 patients go in and out of the CT room as we waited. Once the IV was in the scan took only 5-10 minutes. Anthony lay very still during the whole thing, as he has always done.

We went up to see everyone on the floor afterwards. They were all happy to see Anthony. Of course, he wouldn't talk to anyone. He just kept looking at the new fish in the tank. After leaving the hospital, we went to Guitar Center to look at all the cool stuff. Anthony wanted to see everything. He directed me to the drum room first, then to look at electric guitars, then the acoustic guitar room, then keyboards. I took him to the guitar effects area, but he just wanted to leave at that point. I think he was hungry. We ate a Wendy's (his favorite fast food place) and went home to pick-up Emily from the bus stop. He was in a great mood the whole time.

Now, we just wait for results. I'll post as soon as I hear.

Anthony went for his quarterly check-up yesterday and everything looks good to Dr. Pan. We haven't heard the results of his bloodwork yet, but no news is good news. He is scheduled for the 9 moth post-treatment CT scan and chest X-ray on Nov. 18th.

Maria again brought-up to Dr. Pan the now higher probability of Anthony getting Leukemia due to the chemo. Dr. Pan said the likelihood of Anthony getting Leukemia is about 4-5 times higher than for an average child. The fact that the probability of getting Leukemia is extremely low to begin with makes me worry less, though. As Dr. Pan said, it is like buying 4 lottery tickets to increase your odds of winning. In the end, it is still extremely unlikely that you win.

I'll post again after the CT scan and X-ray.

We went to see the Lion King on Sunday and it was INCREDIBLE! It is the most creative and artistic show I've ever seen. Emily and Anthony were excited and really liked it, too. Anthony, of course, spent the first half of the show with his hands on his ears again. He didn't cover his ears for the second half, though and seemed like he really enjoyed it. We can't thank the people at the New Amsterdam theater enough for the free tickets!

Broadway is really great. The performers are so accessible. After the show, most of them were standing in the back of the theater talking to people and collecting for the "Broadway Cares" charity. One of the performers asked Anthony if he had a good time and, of course, Mr. Negative shakes his hear "No". He can read people very well and always does the exact opposite of what they want, just to get a rise from them. I wanted Anthony to put money in the donation bucket that the actor who plays the older Simba was holding, but he wouldn't. Emily did it, though.

After the show, we walked around Times Square and went to Planet Hollywood. While we were walking around, Emily said "This is the most people I've ever seen in one place". After we ate, we went into the giant Toys-R-Us in Times Square. The place is just huge. They have a 4 story Ferris wheel in the center and more toys than any toy store I've been to (including FAO Schwartz on 5th Ave.).

The whole day was very nice, including the train ride there and back. Anthony stood at the train window the entire ride with his face pressed up against the glass just watching everything. I think doing stuff like going to see shows or going to special places is so much better a gift for birthdays and other events than getting more toys and junk to collect. These are memories that they (and we) will have for a lifetime.

We went into Manhattan on Saturday to see "Beauty and the Beast" on Broadway. It was Anthony's birthday present from us. Anthony had a good time, for the most part.

When the play starts, there is a scene where Belle's father comes riding in on a homemade car. The car backfires, making a pretty loud noise. Now we were sitting in the second row from the stage, so it was loud. Anthony then spent the rest of the show watching with his hands over his ears. The whole time I am thinking "I wonder if the cast can see him?" Well, at one point in the show, Lumiere looks straight at Anthony and makes a "shhhh" gesture with his hand (candle) to his lips. I guess they could see him... I was great, though. That is the closest I've ever sat to a Broadway show.

After the show, Anthony wanted to eat at the restaurant where we ate the day before his surgery (I guess he doesn't have bad memories of it). So, we took a cab uptown to the upper east side (73rd and York) to eat at "Finestra" . All Anthony kept talking about before we got there was the square raviolis he had last time. He went to order, and they didn't have anymore raviolis. He had tortellini instead, which he liked. After dinner, we took another cab back to where the car was parked and went home.

All in all, it was an enjoyable day.

This coming Sunday, we see "The Lion King" on Broadway. My mother wrote to the theater and asked if they had discount tickets. She told them all about Anthony in the letter. The people from the New Amsterdam Theater called her and asked how many FREE tickets we wanted and for which date. Thank you New Amsterdam Theater! We got 4 tickets and Emily is coming, too.

On Saturday morning, I heard Anthony and Emily awake at about 7:30 AM talking in Emily's room. I heard Anthony saying "Come on Em, make a sign." I didn't know what they were talking about until Anthony came in and said "lets go down stairs to have breakfast, I'm hungry." When I went to go downstairs, Anthony was standing on the landing with a big smile on his face next to a sign that said "We love you Mom and Dad." I gave him and Emily a big hug and asked why they did it. Anthony said "because I really do love you." How cute is that?

I really don't see how some people can go through life not wanting to have kids.

Happy Birthday Anthony!

Today is Anthony's 6th birthday. We had a kids party on Saturday morning at Chuck E Cheese and a family party at home after that. Anthony had a lot of fun at the Chuck E Cheese party. There were 12 kids at the party and they all had a good time playing games and going down the big slide. Anthony got many cool presents, too. He especially liked the Cyborg Attack Hot Wheels track and ImagineNext stuff. We put the Cyborg Attack together yesterday. It really is cool... We got him tickets to go see "Beauty and the Beast" on Broadway and we will take him out to dinner when we go see the play. He wanted that for his birthday, since he was a bit jealous of Emily when we did that for hers. He wanted to see the "Lion King", but we could not get discount tickets. However... Anthony's grandma called me yesterday and said she wrote a letter to the New Amsterdam Theater, where the "Lion King" is showing on Broadway and told them about Anthony and asked if they could give us discount tickets. They called and said they were giving us 4 free tickets to see it on Nov. 7th!

We were going to take Anthony out for dinner tonight for his birthday, like we do on everyone's birthday, but Emily didn't want to miss Karate. So, Anthony, being the nice kid that he is, said we could go out tomorrow night for his birthday. We had brownies with candles in them tonight anyway. He picked Moore's Tavern for his birthday dinner, of all places. He said he wanted to go there, since we didn't go last time. The story there is that Moore's Tavern and Escondito's are in attached buildings and we were going to one of them for dinner a couple of months ago. I wanted to go to Moore's and the kids wanted to go to Escondito's. We flipped a coin and it came out Escondito's, but I acted like I was disappointed that we didn't go to Moore's (I really didn't care. I would have a Margarita...if I had to). I think Anthony still remembers that and felt bad that we didn't go to Moore's. This is his way of making it up to me, I think.

We went for a follow-up with Dr. LaQuaglia, the surgeon, yesterday at Sloan-Kettering in Manhattan. We got there at 10:30 AM and had to wait quite some time to see him because he had an emergency procedure in the morning and that backed everyone up for the rest of the day. It is a good thing we had to wait, though, otherwise we wouldn't have met Brooke Shields.

We were sitting in the new playroom playing the Shrek game on the Gamecube and they made me sign a release form (just in case we were on camera) for the Ronald McDonald House 30th anniversary celebration. They said a special guest would be there at 11:30. I thought it would be Ronald McDonald. At 11:30, in walks Brooke Shields. She took some pictures with the kids (Anthony was sitting right in front of her) and held a baby. At one point she looked at me, smiled and said "Hi" like she knew me. I smiled and said "Hi". Then I looked around to see if there was anyone behind me she might be talking to, but I was the only one there. Maybe I look like some Hollywood star she knows :-)

Anthony and the rest of the kids really had no idea who she was and would have rather been playing the video games (they shut them off when she came in).

After all the excitement we went in to see Dr. LaQuaglia, who went out to see Brooke Shields when I told him she was there. Dr. LaQuaglia kept saying the he was "delighted" with Anthony's progress. He felt the little bump on Anthony's chest that I had felt moving around a few months ago. He said it felt like a surgical knot with granulation and it was nothing to worry about. If it bothers Anthony when he is older, we can have it taken out, but otherwise it is not a problem.

Anthony was very good the whole time. He let Dr. LaQuaglia feel his chest without a problem and did everything he was told. He still wouldn't speak to anyone, though. I think he does it just to spite me when I keep saying "go ahead and talk to them".

After the visit, we went for lunch at Wendy's on First Ave and 69th Street (Anthony's Choice). We then went to visit the Ronald McDonald house to use the bathroom and see the HUGE fish in the tank. I think Anthony likes these visits because he gets to spend some alone time with me and he likes walking in Manhattan. I like the visits too, for the very same reasons.

Anthony went for a follow-up with the orthopedic doctor yesterday and everything was fine. Maria asked if we should take him to a physical therapist for his legs (Vincristine toxicity effects). The orthopedist made him walk, run, etc, and said he looks fine.

Speaking of running, Anthony started Karate again yesterday. The karate teacher, Jeff (who raised over $6,000 for us before the surgery) was very happy to see Anthony. He also had a hockey stick signed by the all of the 2003 Devils and a puck signed by the goalie Martin Brodeur to give to Anthony. Jeff is an amazingly nice person who immediately thought to do something for us when he heard about Anthony. Visit the karate school's website at : http://www.njvadhakempo.com/.

On another note, Anthony wants to go to see "The Lion King" on Broadway for his upcoming birthday. We want to get tickets, but they are $100 each. Does anyone out there know how to get discount tickets for the Lion King?

This is the start of Anthony's second week in kindergarten. To our amazement, he loves going to school. We thought he might be a little nervous and would say he didn't want to go, but he loves it. He gets up every morning with his alarm, gets dressed and makes his bed. Most mornings he is the first one up and ready. He is always in a great mood while he eats breakfast and cooperates pretty well. He called me at work today to tell me what his homework was: he had to write 5 capital Ms, 5 lower case Ms, draw two pictures of things that start with M and write their names. He did a great job. He chose to draw and write "Me" and "Milk".

On the medical side, Anthony is finally walking without limping. I guess his leg healed well. We go to the orthopedist next Monday to check it out again. Besides that and a little cold (which Anthony, Sarah, and myself have), everything is fine.

On a sad note, one of the patients that was in the hospital at the same time as Anthony passed away on Saturday. He passed away at 9:11 PM on 9/11. To read his story and add to the amazing number of hits to his site, go to http://www3.caringbridge.org/nj/thomaspeterpaul/. The courage, composure, and pure strength of these kids is just amazing. Thomas' story should remind everyone that most of the things in life that we tend to worry about are trivial..."Will I get that promotion?"..."Why can't I afford a bigger house?"..."Look at these wrinkles on my face"... Thomas' life was brief, but as you can tell by reading his guest book, he touched many people. We should all be so lucky.

Rest in peace Thomas.

No evidence of disease! That is the final result of the 6 month CT and chest X-ray. Now we can relax a little for the next 3 months. Also, Maria took Anthony to the orthopedic, had them X-ray his leg and it is not broken or fractured. They just gave him an ACE bandage to wear for a week. They also said to come back in 3 weeks if it was not feeling better. It is most likely a bone bruise from his leg being stressed when it was compressed in the swing. He still has a nasty black-and-blue on his knee.

Everything looks good and, as always, we are thankful for every moment we have together with our kids.

Still no results on the scans. I'll take that as a good sign.

Everything is OK with Anthony so far, that is besides his leg getting caught in a wooden swing on Saturday. He wouldn't walk on it much right after it happened, but seems to be getting better. He is still slightly limping and says his shin still hurts, but he runs and walks on it. If he doesn't feel better tomorrow, we are going to take him to the doctor to see if it is fractured. Yet another X-ray, I'm sure.

We went for Anthony's 6 month scans today. We had to go to RWJ for the CT and Chest X-Ray. Anthony was as brave as always. He cooperated for everything. He listened to whatever the X-Ray technician said and did what he was supposed to do. He smiled all the way through it. He didn't smile through the CT though. They had to inject him with contrast, and he didn't like the IV being started, even though we put numbing cream on his arm in the morning. He was fine while going into and out of the CT machine (or the donut as he calls it), but was crying while they injected the contrast. he said it burned, which was confirmed by Donna (the heme/onc nurse practitioner). I have to say, though, even when he is screaming, he stays still and lets them do what they have to do. I told him he is braver than Link (from the Legend of Zelda game for all you non-Nintendo fans).

Everyone at RWJ was as nice as always. They did have a scary moment (right in front of us), though. A patient sitting in the hall waiting for a CT was complaining that he was feeling light headed. Next thing I know, he passes out and they couldn't get a pulse. They wheeled him into CT room A very quickly and yanked the crash cart in there. I heard "Code Blue, CT room A" go over the loadspeaker and about 10 people came running. After about a minute, I heard him cough and they kept saying "talk to me Mr. X, talk to me Mr. X". All this excitement led to our waiting a little while to get someone to come in the room to inject the contrast. I don't know what happened to the guy after that.

After the CT, we visited the heme/onc temporary floor. We saw Robin, Denise, Jen, Donna, Christine, and of course Peggy (the child life specialist). Anthony always loves seeing Peggy, and she loves seeing him. We stayed a little while and then Anthony wanted to have lunch with me at Wendy's. As we were driving to Wendy's, I pointed out to Anthony that they were having a sidewalk sale at Musician's Workshop. He said in all seriousness, "maybe we should go, we need a sidewalk" (we don't have sidewalks, by the way).

Now we wait for CT and chest X-ray results. I'm hoping that since we haven't heard anything that it means everything is OK. Keep your fingers crossed and keep praying...

I'm sitting here typing with Anthony and Emily. I am going to paraphrase what they tell me to type.

Anthony got his first haircut in over a year today! He was very happy and excited. Emily and Sarah also got a haircut and they were excited , too. Anthony also wants me to tell everyone that he practices drums every day.

Just a quick update and a little story.

We went to see the orthopedist about the possibility of scoliosis last week.  He said he saw no sign of it, but we should keep monitoring Anthony.  He has maybe a 5 to 10 % chance (I'll take those odds) of developing it, and if it is caught early, a brace is all that is needed.  We will go back in a year to check again.

Here's the story.  Today, Maria took the kids to meet me for lunch.  We went to the Americana Diner and had a good time.  On the way back to drop me off at work, the kids were coloring in the back seat.  Later, Maria calls me and says "Anthony had an accident in his underwear and there was blood in his urine on the underwear."  OK, who do we call, the pediatrician or the oncologist.  Maria called both, and they said to take him in to the pediatrician to do urinalysis.  While she was waiting for me to get home, she kept staring at the underwear and thinking "it just doesn't look right."  She though that maybe Anthony had a red hand-stamp that rubbed off, but he said he didn't stamp his hand.  She kept asking questions and then thought about the trip back from lunch.  She asked him "did you put a crayon in your pants?"  He said no, but kept looking away.  She asked again and said "I won't get mad, just tell me the truth".  He said "I did, but Emily started it."  Unfortunately, the crayon was reddish orange.  Needless to say, we didn't go to the pediatrician, and Dr. Cole, the oncologist on call thought it was pretty funny.  He asked if he could tell everyone tomorrow.

More gray hair by the minute...

Anthony went for his monthly checkup yesterday and everything was fine. Dr. Pan said he is looking good and doesn't want to see him for another 3 months. Anthony's bloodwork was fine, too.

Maria took Anthony, Emily, and Sarah up to the floor in the Children's hospital to visit everyone. She said that all of the kids remembered exactly where everything was and didn't miss a beat. Everyone loved seeing Anthony and he enjoyed seeing all of the nurses, Peggy, John, and Ira (the child-life people). All I have to say is that it is good to be able to visit without having to stay.

I haven't written in a while, but everything is still very good. Dr. Pan said the radiologist concurred with his reading of the scans and that everything looks normal.

Anthony had his last day of preschool today. He didn't seem too upset about it. He is excited to be going to Kindergarten. He will be riding the bus in September with Emily and two of our neighbors. I think he is more excited about tha bus than being in school.

Here's a little Anthony story: The other day, Maria took Anthony and Sarah to the plant nusery to buy some shrubs. It was a pretty hot day and Anthony was starting to sweat. He complained to Maria that he was hot and wanted to go. She explained that she needed to get a couple of things before they left. So he said, "Look at me, I'm sweating...no food...no water." It is just like the nurses at Sloan-Kettering said, he sounds like an old man.

Dr. Pan called today and said Anthony's three month scans looked good! There were no changes since the last set in Feb. and he said he was happy with them.

The scan procedure itself went fine. Anthony was crying as they were looking for a vein to do the IV contrast. The radiologist heard him and came in. She asked if we had prior scans with us, and fortunately I did bring them with me. She looked at them and said we wouldn't need the contrast. That made Anthony instantly cooperative. He did everything they said, as long as they didn't stick him with that needle.

They were pretty good over at Jersey Shore Medical. Everyone was very nice and the scans and X-rays were done very quickly. Maria did have to drive the films over to RWJ, though. Anyway, now we can sort of relax for another 3 months.

We go for Anthony's thee month scans today. We have to go over to Jersey Shore University Medical Center since Robert Wood Johnson is pulling one of its barganing tactic moves by not accepting Cigna for outpatient radiology. This whole disaster we call a health care system is really getting to me. It is probably getting to Maria even more since she is the one on the phone with Cigna at least twice a week. Anyway...we're hoping that the new radologist who looks at these films will not raise all kinds of red flags when he sees what is inside Anthony from the surgery. Maybe they will be smart enough to ask for previous films for reference. In any case, we will be taking these films back to RWJ to have their radiologist look at them. I might also ask for a copy to be sent to Memorial Sloan-Kettering to cover all the bases.

Wish Anthony well...

OK, where was I... (If you didn't read yesterday's post, read it before you read this one.)

Ah, yes...May 10th
On our second day, we went to the Magic Kingdom. This is probably the best place of all the Disney parks to take small kids. The first ride we went on was the Dumbo ride. All the kids loved it, but Anthony was making me sick by moving the elephant up and down and up and down. He loved it. We also went on the Pirates of the Caribbean. We forgot that there was a little waterfall drop while in the complete darkness. Sarah didn't like that too much. After that, she put her hands over her eyes and kept saying "close eyes, close eyes." Emily really wanted to go on "It's a Small World", since she is learning to play the song on the piano, but the ride was being renovated. We went on a few other rides, including the Haunted Mansion, which Anthony loved. But the ride that Anthony like the most was the Buzz Lightyear ride, where you try to shoot all the bad guys with a laser. We went on that one 4 times, and Anthony's high score was 120,000. We were able to bypass all of the long lines using Anthony's button or Special Assistance card. All of the employees there were so nice to us when they saw his button. Even if we were waiting on the full line, they would see that button and take us right to the front.

We decided to stay late to see the fireworks, so we ate dinner in the Magic Kingdom. We ate at Tony's Restaurant (from Lady and the Tramp) right at the entrance to the park on Main Street. Our philosophy was that we would have one full service meal a day at a nice place and avoid doing the cafeteria style thing at least once. After dinner, we went over to Tomrrowland to see the fireworks and all the kids stayed up to see the whole show. It was a really fun time.

May 11th:
We went over to Disney/MGM studios on our second full day. The first thing we did was the Playhouse Disney show. They brought us right up front and we sat on the floor next to another "Give Kids the World" family. They were from Marlboro, NJ of all places. The kids loved seeing Bear in the Big Blue House, Stanley, Rolie Polie Olie, and Pooh live. They got up and danced a couple of times. We also saw the Muppets 3-D show, which was really cool. We made it a short visit and decided to go back to the village for a while.

At the village, we all went in the pool, then Anthony and I went fishing in the lake for a bit. Nothing was caught (at least by us). We decided to try to get back to the Magic Kingdom to try to see the SpectroMagic (Light Parade) show.

We ate dinner in Cinderella's Castle and timed our exit perfectly so that we were stuck at the entrance to the castle right before the parade. They rope off the castle area before the parade so they can do the fireworks afterward. We were behind the ropes on the elevated platform in front of the castle, so we could see the parade perfectly. Emily and Anthony loved the parade, but Sarah kept trying to make an escape. After the parade, we went on the Buzz Lightyear ride two times in a row.

May 12th:
We decided to take a break from Disney, and we went to Sea World. It was a very relaxing day there, since it is all shows and no rides. It was also less crowded than the Disney parks. We saw a Sea Otter show and the Shamu show. They loved seeing the huge killer whales splash people in the first 14 rows. That's right, 14 rows got soaked with 52 degree water. It's a good thing we decided not to use the button to get into the first section again.

We ate lunch at the Sharks restaurant, where our table was up against a giant (660,000 gallon) shark tank. We have a couple of pictures with the kids eating as a shark swims by (check out the pictures section).

We left the park at about 4PM and headed back to the village, where we ate dinner in the Gingerbread House. We had some ice cream afterwards and then played miniature golf at Marc's Dino Putt. It is a dinosaur themed golf course with lots of surprises that tended to scare the kids. At one hole, Emily hit her ball into the cup and a dinosaur squirted Anthony in the neck with water. He was a little surprised. I think they like being a little scared, because they kept begging to go again.

The kids finally went to bed at a decent hour. Or, at least we put them to bed at a decent hour. We heard them all cracking-up for quite some time after we left the room (they all slept in the second bedroom together).

May 13:
Back to the Disney parks. This time, we went to Animal Kingdom. It was very crowded. The walkways are much narrower than many of the other parks to give it a jungle feel, but it just makes it difficult to get around. The big hit of this park was the African Safari ride in a real jeep, with real animals roaming around outside the jeep (no fences). They saw a lion, some zebras, Thompson's Gazelles, monkeys, and many more cool animals.

We left Animal Kingdom early and headed over to Epcot for a while. The kids played in a fountain area for a while and got soaked. They really loved that. Maria and I just sat in the shade and watched. We walked around the World Showcase, listened to some music, ate some food, and relaxed for a while. The kids liked running around some of the areas and liked the Mexico water ride a lot.

At one point, I was walking back from the bathroom and saw Maria waving to me, trying to tell me something. As I walked across the path, two golf carts passed by me about 5 feet away. I looked into the first cart and thought..."that looks a lot like George Bush, Sr." When they passed, I looked at the back of the cart and though..."that looks a lot like Barbara Bush." That is what Maria was trying to tell me. We are certain the it WAS the George Sr. and Barbara. They passed by again and I got video of Barbara, but only the back of George's head.

We stayed late again and watched the fireworks. We were kind of far away, so we couldn't see the stuff in the water too well. When they were over, we raced out of the park to get onto the monorail before the crowd made it out.

When we first planned our stay, we weren't going to go to Epcot, since there isn't a whole lot for little kids, but I'm glad we did. We had a good time there.

May 14th:
We headed over to Universal, where the kids were excited about seeing the Nickelodeon area. We went on the Jimmy Neutron ride first. They loved that one. We then went into the Slime Time Live show, where Anthony was picked to do a game for the Blue team. The host asked his name, how old he was, and where he was from. Amazingly, he answered right away and then turned to us with his big smile and waved. He was so proud of himself. Sadly, though, the blue team didn't win. He didn't care.

Later, Maria went on the Back to the Future ride with Emily and Anthony while I walked around with Sarah. We grabbed a bite before we had to head to the airport. Oh, the airport...

Our flight was supposed to be delayed until 8:50PM (from 6:50PM originally) and we got to the airport at 4PM (with Sarah!!)! We took off around 7:30PM after all. Sarah was quite a handful in the airport and on the plane. She would not stay in one place at the airport. If we let her go, she would have run through the entire terminal without looking back. She screamed for a long while on the flight when Maria tried to keep her in one place to go to sleep. In the meantime, behind us, a little girl was vomiting. A lovely flight all around.

Then, we arrive at Newark airport. That airport needs a complete overhaul. After taxing for what seemed like an hour, we get to the gate and there was no one to wave us in. We sat about 100 yards from the terminal for about 10 minutes. We then went to the baggage carousel where it took almost an hour to get our bags. The stretch limo took us home again, but we only arrived at 1AM. Altogether, from the time we left Universal, until the time we got home, it took about 10 hours. That is about 2/3 the time it would take to drive all the way, non-stop. Next time, I think we'll drive.

Well, we're back from Anthony's Wish Trip. Everyone had a great time! The "Give Kids the World Village" is really a great place that deserves every donation dollar it gets. If you are looking for a good charity, "Give Kids the World" would be a great one.

I'll go over the trip day by day for those who like to read my long and boring posts.

May 9th:
A stretch limo came to get us at 6AM. We got everyone up just 15 minutes before that, threw on their clothes and got into the limo. The kids were excited about the limo ride and didn't fall asleep the way we thought they might. Once we got to the airport we checked-in and stood in Continental's ridiculously long line to have our bags screened with the CTX scanner. They had 5 machines that I could see, but only one that was operational. That's Newark Airport for you (wait till you read about the return trip). We got on the plane at about 8:45AM and were in the air at about 9:30AM. The flight was fine, with Sarah falling asleep and Emily and Anthony playing Gameboy and coloring. Once we arrived, we took the monorail from the gate area to the main part of the Orlando airport. Sarah enjoyed the monorail ride about as much as any ride at Disney. She would say "wheee" and "whoa" as we were riding.

A greeter (Ruth) from "Give Kids the World" came to meet us, help us with our luggage, and get the rental van. Ruth was great and helped us out quite a bit. She took Anthony and Emily by the hand and helped us get over to our van. She is a volunteer, just like the many, many other great volunteers at the village. If I can remember right, there are about 1,000 (that's right, 1,000) volunteers and 90 full time staff members at the village. It is a truly wonderful thing that these people do. It really makes you feel good about the human race.

After we got the car, we drove to the village (about 10 miles), where they gave Anthony a big stuffed Mickey, and gave Emily and Sarah a stuffed Shamu the killer whale from Sea World (more about Sea World later). They gave us a map of the village and told us all about it. Here's the short version of what's there. They have 2 swimming pools, a lake stocked with fish, a movie theater, a mini-golf course, an arcade, and a train ride for the little kids. You don't have to pay to do any of these things. While you're there you eat at the Gingerbread House, a cafeteria-style dining hall staffed with all volunteers. They also have an ice-cream palace that is open all day (9AM-9PM) where you can get all the ice cream you can eat (donated by Friendly's). The Castle of Miracles has a Merry-Go-Round right outside of it, and inside, they have games and books for the kids. On the ceiling of the castle, they place a star with each wish child's name. There are currently about 11,000 stars on the ceiling. Now, Anthony has his own star there.

After we got the intro, we went over to our villa, which is a two bedroom, two bath apartment with a kitchen and a living room. The bath room had a giant Jacuzzi where we gave all three kids a bath at the same time with plenty of room to spare. Each villa has two apartments in it, each with its own driveway. The kids made themselves at home right away. After we unpacked a bit, we went over to the pool, where all three kids had a ball. Every day, even when we were at Disney, they asked to go back to the village to go to that pool.

That night, at about 8PM, they had an orientation where the gave us the tickets to the parks. We had 3 day park-hopper passes for Disney World (Magic Kingdom, Epcot, Animal Kingdom, and Disney/MGM studios), a 1 day park-hopper pass to Universal Studios two parks, and a 1 day pass to Sea World. They also explained how, by showing Anthony's "Give Kids the World" button at the parks, we could get a free stroller rental and bypass all the long lines for the rides. It was amazing what that little button would do.

I think that is about it for day one. I'll write about day 2 tomorrow, since it is 11:30PM right now, and I'm still recuperating from our vacation and I need to go to sleep.

Anthony and I went over to MSKCC today for a follow-up with the surgeon. He took a look at the scans from Robert Wood Johnson and felt the area around Anthony's scar. He was very happy with the progress so far and thought that all the flap over the scans earlier was nothing. He said Anthony looked very good and the scar looks very good. He also said we should make an appointment with an orthopedic doctor to keep track of possible scoliosis in the future. This is because as Anthony grows, the patch that is in his chest will not expand and may cause his spine to start curving. We may have to eventually have the patch replaced when Anthony is in his teens, but Dr. LaQuaglia mentioned that it might never be necessary.

A couple of times during the visit, Dr. LaQuaglia said he was "very encouraged" by the progress. I still hold on to his original statement from right after the surgery when he said he was "very optimistic" about Anthony's chances. It is funny how you tend to think about these little off-the-cuff remarks. I still remember one of the first things Dr. Pan said to us right after Anthony's diagnosis. He said, "I don't see anything we can't fix." For the longest time, I kept that thought in my head. When I would think the worst thoughts, I would crowd them out with these matter-of-fact statements. It was the only way to keep my sanity. I only hope that the doctors know how much weight their small remarks carry.

Anyway, at the end of the visit, Anthony finally spoke up and asked if he could have a lollipop for himself and his sisters (such a nice boy). After the visit, we had lunch at McDonald's on 1st Ave at 69th street and then visited the Ronald McDonald house on 73rd street. I really love spending time with him. He is funny, smart, and one of the sweetest kids I know. It is really a joy just being with him. I love the way he talks and talks and talks when he is excited. Most of the time, it is such a pleasure being with him, Emily, and Sarah. If I could quit my job, I would do it in a heartbeat just so I could be with them all day long.

On a last note, this was the first time in almost a year that Anthony was able to use shampoo on his head. He finally has enough hair to wash with shampoo! He was very happy about this.

I forgot to write an update saying that the surgeon visit was postponed. First, they postponed it to April 22nd, then to April 29th.

Anthony is doing well. He had a lot of fun today, outside with the neighborhood kids. They ran around, played on the swings, played street hockey, rode bikes, and "chilled" (as Anthony said) in their clubhouse under a tree. His hair is starting to come back! You can see his eyebrows and eyelashes now. He is excited about it.

We're getting ready to go to Disney, too. Everyone is very excited about that. Maria has bought some clothes for the kids to wear in Florida and we've been looking at guide books to figure out what we should see first.

I'll post a picture of Anthony's head in the next couple of days, and I will do an update after the visit to the surgeon.

Today was a clinic day. Everything looks good. The counts were: hemoglobin 13!, white blood count 5400, platelets 342000!, ANC 2322. Anthony was happy to see everyone (even Dr. Pan, although Anthony never talks to him) and everyone was happy to see Anthony. Since Emily doesn't have school this week, she went, too. Of course she made two arts & crafts projects. Sarah didn't want to leave and Maria had to drag her screaming from the clinic.

Dr. Pan said Anthony still doesn't have any reflex response and that it may take 4-5 months until he recovers from the effects of the Vincristine. This means he will still walk and run funny (toe to heel) and may have constipation problems for a while. Oh well, right now, we're just thankful that he is OK.

Things have been going well here! Anthony is back to his same old self. He's been diving on the couch and has been enjoying bath time now that he can get all the way into the water. In general, he has been in such a good mood lately. I guess he is just happy to be feeling semi-normal again. Here's a glimpse into life around here:



Also, since I last wrote, we had a birthday party for Emily. She wanted to do yet another bowling party (our 3rd). They all had fun, and Anthony got the high score again.

Next on the schedule, a clinic vist on Tuesday, April 6th. Just a check-up and bloodwork. I'll be sure to report the results. After that, we have a follow-up with the surgeon on April 15th.

The Broviac is out! Everything went well. I stayed with him in the OR with Peggy until he went to sleep. Peggy kept him distracted while they were setting up all of the anesthesia parephenalia. It took about an hour from when I left the OR until he was in recovery. This time, he was still asleep when we went to see him there. After about 15 minutes, he woke up and sat upright. He just looked around, probably thinking "where am I?" He was fine and was talkative until he noticed he had an IV in his hand. Once that was out, he was better and was dressed and ready to go within 10 minutes. Maria and Sarah came to the hospital after dropping-off Emily at the bus, so they were both there to see him right after he woke up. When I put him down, he immediately chased after Sarah.

We went upstairs to visit everyone in heme/onc. They all cheered when Anthony walked in the door. Anthony was happy to ride the tricycle around the floor without being attached to an IV pole. Before he left, Robin, Donna, and Peggy all gave him big kisses. He didn't put up too much of a fight.

When Emily got home from school, Anthony lifted his shirt to show her that he had no tubes. She was jumping around, giving him hugs, and saying "yeah Anthony!". She said she was thinking of him all day in school, but said she wasn't worried, because nothing ever happens to him. She made a card for him in school and had the kids in her class and the teacher sign it for him. It has a picture on the front of her and a caption describing what it is: "This is me carrying balloons for you." Inside she wrote: "To day is your speshl (special) day because you get your toobs (tubes) out!"

We celebrated by going out to Anthony's favorite restaurant, Friday's. The dinner was courtesy of the Parents and Staff from Briar Hill Preschool. They gave us a gift certificate a couple of weeks ago, along with some flowers and a nice card. The kids always have a lot of fun when we go out to dinner.

When he was going to sleep tonight, though, he said he was sad that he didn't have tubes anymore. I guess he got used to them being a part of him for almost a year and it now seems weird to not have those things dangling out of his chest.

We go tomorrow to have the Broviac removed! Anthony is excited. Emily made a chart with a countdown to "toobs out". He puts a check next to each passing day. I hope the snow doesn't affect our scheduled time, or postpone this.

On another note, I just thought I would give a glimpse into our daily life with two little stories.

The other day, Maria was standing near Anthony while he was playing on the computer. He turned to her and said "I love you Mommy". She went to kiss him and this is what he said: "stay away, I'm sterile."

On Sunday, we were getting ready to give all three a bath, and I was in Anthony's room, getting clothes for him to wear. In walks Anthony with the bath visor on his bald head. He keeps walking around going "quack, quack, I'm a duck...quack, quack, I'm a duck..." Next, Sarah walks in with Anthony's ski hat on. She starts spinning around in circles. Then Emily runs in the room, naked, and says "tada". So, we're standing there with one child repeating "quack, quack, I'm a duck", another one spinning in circles and falling down, while wearing a ski hat over her eyes, another child running around naked. Controlled chaos, as Maria likes to say.

Today was the last clinic day for a month! Anthony went to get bloodwork and to check how his blood is coagulating so he can get the Broviac out. They had to take blood from his arm, not the Broviac. Maria said he cried, but kept his arm still without her holding it. He is a very brave boy and is mature beyond his years. I asked him later if it hurt and he said no, because he had the cream (LMX lidocain cream) on his arm. Maria doesn't know what she is going to do with her time on Tuesdays now.

He is scheduled to have the Broviac out next Wednesday and I will be going with him, by request.

I guess since we've been so nervous about these scans, Dr. Pan took a look at them along with the MRI radiologist and came to the conclusion that MRIs are just not good at looking at soft tissue next to bone. He then talked to the CT scan radiologist and both felt that what they see is just residual swelling or scar tissue due to the surgery. This is what the CT radiologist thought in the first place. He compared the November CT scan (something the MRI radiologist could not do, since there was no MRI in November) and said that there has been no changes. This is all very good. We've asked about PET scans before, so without us asking, Dr. Pan talked to the PET scan guy and he said PET scans would not be good here, since the feature we are talking about is so small and PET scans have a coarser resolution than CT or MRI.

So, as we thought after the first CT scan reading, everything is clear. The scans are being sent to Dr. LaQuaglia (the surgeon) anyway for Anthony's follow-up with him in April, so we'll have another pair of eyes looking at it, too.

Clinic day today. Anthony's counts were OK, that is, OK enough to stop the GCSF shots. WBC: 6,900; HGB: 8.2; PLT: 63,000. Someone finally looked at the MRI report and of course they say they see something near the patch that might be scar tissue or a recurrence. Dr. Drachtman said he is not worried about it, that the radiologists write it that way to cover themselves. Dr. Pan is going to take a look at it today (he is on the floor and wasn't in clinic) and will give us a call later or tomorrow. Yet another thing to make me nervous. I have a feeling stuff this will continue for quite some time.

The next step is to take out the Broviac. They have to do some kind of bleeding test in his arm next week, even if his platelets are good, to see if he has a bleeding problem before they can remove the Broviac. If they don't want anymore tests and the bleeding test goes well, he should get out the Broviac in 2 weeks.

The plan going forward, according to the protocol, is clinic visits once a month for the next 6 months, CT or MRI, and chest X-ray every 3 months for the next 4 years. That's right, 4 years. So, every 3 months for 4 years I should add a few more gray hairs.

NO MORE CHEMO! We got back this morning after finishing up the last bag of MESNA. Anthony was very excited this whole week. He was talking to everyone and cooperating with everything. He would wake up every morning and want to cross-off another day on his chemo countdown chart (he also got to eat a Hershey's Kiss each day). When he got home today, he went into the family room, started running around and said, "C'mon Em, let's get excited!" to Emily.

He has been eating like a pig all week and hasn't felt nauseous. I guess he is so excited that he hasn't had time to feel sick. He had visitors from his "adopt-a-family" sorority all week. They brought Silly String one day, which he loved. Yesterday, Jenn (the receptionist on the floor) gave him a big syringe and a cup of water and told him to go squirt all of the nurses to pay them back for the last 10 months. He happily chased them all down and got everyone wet. This morning, he didn't want to walk to the parking deck with me to get the car. He made me go get it and bring it around front while he stayed on the floor and rode the tricycle around.

We got his final scans done while we were there, instead of doing it as an outpatient in a couple of weeks. So far, the CT scan was clear, the bone scan showed a little reconstruction or bruising happening on the 6th rib, which could either be from his falling last week, or the bone growing around the wedge in his chest. The results from the MRI haven't come back yet, since we did it late yesterday, but no one is expecting any surprises.

Now, we just go to the clinic every Tuesday for about another month and then get his Broviac out. He will be very, very happy when that day comes, and so will we.

We're in the hospital for the last chemo! Anthony was very happy all day today and multiple people noticed. He has been talking more to the staff and fooling around more. He knows this is the last treatment and can't wait to get it over with.

Since the outpatient radiology services here have stopped taking Cigna, they decided to do most of his final scans as an inpatient during this last treatment. This is both good and bad, I guess. It is a little stressful doing the scans, so I'm not looking forward to it being done during this treatment. It is stressful enough just trying to stay on schedule with the chemo infusions, but now we have to worry about the scans causing a delay in the schedule. On the other hand, it will be nice to have everything done over five days without coming back for a marathon day of scans.

For those playing the home game, counts were: WBC 6,900; HGB 10.8, PLT 343,000, ANC 3174.

We had another little scare yesterday. Anthony was fooling around and fell (threw himself) on the floor. He got up, started screaming, and ran into the corner so Maria would not touch him. He wouldn't move his left arm for a while and kept saying his chest hurt. Maria finally felt his chest and something felt like it was sticking out (a bump). She called me and told me all this, so I went home and took him over to the clinic. All the while, Maria was thinking that the wedge in his chest shifted and I kept flashing back to when all of this started and he had pain in his chest, wouldn't move his left arm and there was a bump there (I tend to always think the worst). When we got to the clinc, Dr. Kamen felt around a lightly as possible and said he felt the edge of one of the ribs that had been cut during the surgery. He sent us for a quick X-ray just to placate us, and read them right there. There was no shifting, and nothing on the rib. He must have fallen on his chest, and the part of the rib that was sticking out bruised his skin. Later that day at the clinic, Anthony was fine, moving around and acting normally, making us look pretty paranoid and foolish.

After thinking about it more, I remember right after the surgery that Maria was feeling the area and felt this rib sticking out. She said, "boy, I hope that doesn't bother him". He hasn't let us touch that area since then, so we didn't remember how it felt. Anyway, more gray hair to add to the collection...

By the way, counts on Tuesday were good: WBC: 4,500, Hemoglobin: 10.5!, Platelets: 220,000! So, we seem set to do the last chemo next week. If anyone wants to come to visit, this may be your last chance to come to the hospital. We'll be in from 2/17-2/21.

Chemo #13 down, 1 to go! This was the last Vincristine/Cytoxan cycle. It took all day at the clinic 9AM - 6PM to get it done as an outpatient. Maria went with Anthony and I stayed home with Sarah so I could get some work done. So far, he is not showing any side effects. His counts were obviously good, otherwise treatment would have been delayed. The counts were - WBC: 7,000; HGB 9.3; PLT 164,000.

On another note, a little girl on Long Island who also had PNET near her diaphragm last year did not have clear 6 months scans and underwent surgery yesterday to remove something that showed up near the original tumor site. They are hoping that it is just scar tissue from the radiation treatment. Please go to her web site and sign her guestbook to show your support: www.4dina.com

Anthony is finally home! He still has to take antibiotics for 5 days to make sure everything is OK down there. He is feeling good and was happy to finally get disconnected from the IV pumps. He will be getting treatment #13 as scheduled on Tuesday.

Anthony is still in the hospital, but is doing much better. The surgeons are amazed at how quickly he is getting better. The G-tube was removed on Monday and he was on a clear liquid diet yesterday. He is now on a full liquid diet, which means he can have clear and not-clear liquids. He will probably be able to have bland solid foods tomorrow. I felt so bad for him when he couldn't eat anything. Every TV commercial with food in it would make him say he was "so, so, hungry". Every time I would call Maria from the hospital, he would make me tell her to buy some new food he saw on TV so he could eat it when he was better. We're thinking that they may let him out on Friday with a 24 acting antibiotic. He has been on several antibiotics since last Wednesday, and Saturday would be 10 days.

Maria stayed with him yesterday and will stay there until tomorrow night. This was so I could go into work for a few days and get some stuff done that I can't do remotely.

Well, we're in the hospital again. When Maria took Anthony to the clinic, they did an abdominal X-ray and found that there was air in his intestines. They admitted him soon after that and did another X-ray later that night. The surgery residents were alarmed at the X-rays and had the attending surgeon drive-in in the snowstorm because they thought they would be doing emergency surgery that night. However, Anthony was not in pain and had not vomited since Tuesday. They said his exam was much better than his X-ray. They then had a "G-tube" placed in his nose down into his stomach to relieve the pressure on his intestines. The next day, his stomach was much softer and was smaller. He has been draining bile since then, but the amount has tapered off. Yesterday afternoon, the X-ray had shown that his intestines looked better. The current diagnosis is inflammation of the intestines do to an infection. He is getting several broad-spectrum antibiotics and seems to be acting more himself now. They will be doing another X-ray tomorrow morning and will probably stop the suction on the G-tube. He probably won't be able to eat or drink anything until Wednesday. So, it looks like we may be here a while.

Maria had been saying the whole time that Anthony just wasn't right. She said he had never had symptoms like this before and had not been in such pain for so long. Anthony's doctor thought it wasn't any worse than usual, but I guess he now knows that Maria is always right when it comes to our kids. She knows them so well that she can tell when the slightest thing is wrong. She reminded me of when she first came to the ER when we found out Anthony had a tumor. We were sitting, talking to the chief pediatric resident and she said to him "So, it is either Ewing's sarcoma or rhabdomyoma sarcoma, isn't it?" He almost fell out of his chair, since he knew it was probably Ewing's, but hadn't said a word about it to us. These doctors have to learn on their own something that I have always known: Maria is always right.

Maria is at the clinic right now with Anthony. He was still having abdominal pain and had diarrhea twice today. He is pretty miserable. He just walks around moaning when he is not on the couch asking her to rub his stomach. He has never been this bad for this long after one of these treatments. Something else must be going on in there. Let's hope they can come to some conclusions at the clinic as to what this could be and what to do about it.

Today was the regular clinic visit. Maria took Anthony and Sarah and said it was the worst visit since we started this whole ordeal. Anthony's stomach is still bothering him, so he constantly wants her to rub it and Sarah, as always, is all over the place. You have to constantly watch her in the clinc, because before you know it she will be in one of the examining rooms watching someone get their blood drawn. She also now likes to climb on things, so as Maria is trying to rub Anthony's stomach, Sarah is about to fall off of a chair she climbed on. I think we need to do something differntly here. I can't ask Maria to take the two of them to the clinic anymore; it is just torture. Maybe next time, I can try to work from home with Sarah while Maria takes him to the clinic. We'll figure something out, I'm sure.

BTW, counts were WBC 3500, HGB 9.6, PLT 124,000.

We're home! We came home yesterday morning at about 10:30 AM. Anthony was OK. He has been feeling a bit nauseus and he has some gas, but other than that he is fine. We went to his great grandmother's 80th birthday today. He was a bit tired and his stomach hurt, so he wasn't having too much fun. He was glad to be out of the hospital, though.

By the way, here are the pictures of the hospital door that I painted: Here's the whole picture.Nemo1.JPG Here's a closeup.nemo2.JPG

Everything is going as planned so far. Chemo has been moved up 4 hours each day and we're still on schedule for discharge at 11 AM on Saturday. I haven't been getting much sleep. I have to work until about 1 AM to make up for the time that I can't work during the day. Then, Anthony wakes up about 5 times during the night, somtimes requiring a change of sheets. He's awake at 7 AM and is hungry, so I also need to be up then. Amazingly, I don't feel too tired. I finished painting the masterpiece Anthony and I started yesterday. It is a picture of Dory and Marlin from "Finding Nemo" that we painted on the window of the door to his room. Anthony painted a couple of jellyfish that look really good. I'll post a photo of it when I get home.

Grandma and Pop came to visit tonight and were nice enough to bring dinner for me, which was good because I don't think I could have eaten another hospital meal. Last night Maria brought a good dinner, but I was expecting to have to choke down another inedible meal from "food" services tonight. I really don't know how they are allowed to put the word "food" in their title, since most of what they send up is inedible. I had an undercooked hot dog with a mangled bun yesterday...yummy! Last time we were here they sent up a veggie burger that I could have used to hammer nails...I almost broke a tooth.

OK, here we are in the hospital doing chemo #12. We were admitted yesterday since Anthony's counts were good: WBC 5,900, Hemoglobin 11.5, platelets 204,000. We went to the clinic at 10:30 AM but didn't get up to a room until about 4 PM. THe heme/onc unit is packed to the gills. There are 10 beds on the floor and there have been an average of about 18 kids admitted since before Christmas. They put the less complicated cases elsewhere in the hospital. The kids getting chemo and that have a fever must stay on the floor, so unfortunately, they had to move someone in order to free-up a room for us. That is what took so long. Diane, one of the nurses in the clinic is such a nice person. She felt bad that we were waiting so long and kept calling the floor to see if they were ready for us. She also took us over to the employee vending machines to keep Anthony busy.

I don't know what happened with Anthony's specific gravity (of his urine) this time. The fluids were started at 10:30 AM, but he did not urinate enough (measured by the urine's specific gravity) until about 6:30 PM. Chemo couldn't start until about 7 PM because of that. They have to make sure he is urinating enough so that the chemo doesn't settle in his bladder and cause hemmoraghic cystitis (I think that is the term), which is bleeding of his bladder lining. That wouldn't be good.

Anyway, since he started so late, we won't get out of here until about 10 - 11 AM on Saturday. C'est la vie.

We went to the clinic yesterday to do counts, and they were all very good. WBC 61,000! Hemoglobin 11.4, Platelets 240,000. Dr. Pan keeps saying that Anthony has always been an over-achiever in this area. We're going in for cycle 12 on Tuesday. We'll be in until Saturday for this one.

We went to the Bridgewater mall after the visit to the clinic and then went to Aunt Chrissy and Uncle Keith's house. The kids have fun. They love playing with their cousin Timothy. He laughs at everything both Anthony and Emily do. This morning, we went the Breakfast club in the Freehold Raceway mall with the kids. Both Emily and Anthony won prizes, did crafts, listened to stories, and played games. We are usually in the hospital for these breakfast club days (first Saturday of the month), so we took advantage of the fact that we were free this time.