No evidence of disease! That is what the radiology report says...Hooray! Everything looked normal, and Anthony's thymus returned to normal, also. Dr. Pan said that if this CT and chest X-ray was OK, we could go for a CT every 6 months with a chest X-ray every 3. Before we know it, it will be only once a year.

The anxiety associated with these things never lessens, but the relief and joy I feel after hearing the results makes up for it.

We went for the 1 year scan and chest X-ray last Thursday (3/3/2005) and haven't heard anything yet. I'm taking the lack of any word as a good sign. Like I said in my last post, even though it has been a year since treatment ended, the anxiety doesn't go away. I think that even after the magical 5 year event free period (after 5 years, he is considered cured), I am still going to be anxious.

Anyway, here are some Anthony-isms. The other day, Maria and Emily were making marshmallow treats with faces and hats on them to bring to Emily's class. Anthony walked in, took a look at them and said: "hmm...you don't see something like that every day." A little later, after they were done, he was lying on the floor and said about the marshmallows: "hey Dad, they are tres magnifique." I have no idea where he gets this stuff....

Sorry it's been so long since I last updated, but there really wasn't much to report. Last week, Anthony went for his 1 year post treatment check-up with Dr. Pan and everything was fine. We go to get the CT scan and chest X-ray on Thursday. I'll post when we know the results. As usual, I'm nervous. I don't know if I will ever stop being nervous when it comes time for a scan. This constant anxiety can't be good for the gray hair count. Such is life...

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.