Everything is good!

Well, everything looks good! CT and chest X-ray are unchanged, blood counts are good, and his physical exam was good. If we wanted to keep the appointments in February, we wouldn't need to come back for a year. But, we want to be able to get the checkups in the summer, when there is no school to miss. So we'll be going back in July or August and then every year after that in the summer. He will only need a chest X-ray and bloodwork at that point and thereafter for a couple of years.

We were talking last night with Anthony about how he used to cry when he would get blood drawn and some of the other unpleasant things that happened while he was going through treatment. Thankfully, he doesn't remember any of it. Even when I look back on that time, I mostly think of the good things that happened.

Since I spent the most time with Anthony in the hospital during his treatments and neutropenia fever stays, the two of us were able to form a strong bond. To this day, Anthony and I are very close and I can't help but think that it was due in part to the amount of time that I got to spend with him in the hospital. For that, I am very thankful.

Five years

Well, today is the big day for Anthony. It is his five year post-treatment check-up at the clinic. The day he is officially labeled "cured." His appointment is at 10:30, so I’ll be waiting for the call from Maria after that. He had his CT and X-ray last Monday and we haven’t heard anything, which is usually a good sign. He gets blood work done with instant results at the clinic and they will just do a quick physical. I am hoping that they say he doesn’t need additional scans this year (like MRI or bone scan). I really get worked up every time he goes to get scanned. Several times, scans have found some "abnormality" that turns out to be nothing. Each time it happens, though, it takes a couple years off my life from worry. More later...

Everything is fine at 4 1/2 year post-treatment.

Anthony went for his 4 1/2 year post-treatment check-up and everything is fine. His CT, bloodwork, and physical check-up were all good. He has one last check up at 5 years (February) and then it will be once a year for a couple of years with just a chest X-ray and bloodwork. After that, it may just be every couple of years. Hooray!

Update for January 2008

I would usually be writing an update in February, since that is when Anthony is usually do for his quarterly check-up, but we had a little scare over the past couple of weeks that led to the check-up being sooner rather than later.

About 3 weeks ago Anthony was complaining of pain near the area where the tumor was removed. While I was looking in the area he was complaining about, I noticed a bump sticking out of his chest right near the scar from the needle biopsy, pretty much where the original tumor was. He was reluctant to let me feel it because he said it hurt. I felt it anyway and it felt very hard, almost like the original tumor felt. This pretty much freaked me out. I tried not to get too upset about it, saying "it's too far out to be a recurrence." It didn't work.

A few days later we called the clinic and told them about it. They went back and forth and finally decided to do his 4 year scan a few weeks early to see what was there. We did the scan on Monday, January 14. We looked at the scan ourselves, since they gave us a CD with the images on it. Sure enough, we noticed something about 5 mm right in the area we were feeling.

By Thursday, we didn't hear anything about the scans so I figured it was nothing. On Thursday afternoon, though Dr. Masterson called Maria and said the CT report found a 5mm nodule and that we should probably go to Anthony's surgeon Dr. LaQuaglia and have him look at it. She recommended a biopsy of the tissue to make sure it was nothing. More freaking out... Before we went, though, I looked at his chest again and it looked like the area had shrunken. I thought: If it was a recurrence, it wouldn't shrink. I was still pretty uneasy, though.

We went to see Dr. LaQuaglia on Tuesday, January 29th. He took a quick look at the scans, felt the area and said "It is probably just a local reaction, or swelling, but I'm not sure." He also kept saying "It is too far out to be a recurrence." That made me feel better a bit, but not quite. He asked if Anthony would stay still for a needle cytology, or if I thought he would need to be knocked out. He could do the cytology that day if he didn't need to be anesthetized. Anthony is always so good with these tests and I wanted to know right away what this thing was, so I told him he would be OK with just a local anesthetic. Anthony knew exactly what was going on and he said "I DO need to be knocked out."

We had to wait a while for the procedure room to open up and the whole time we were waiting, he kept saying "I just want to leave". I told him we had to find out what the bump on his chest was and we didn't want to keep scanning him. He said "I don't care about being scanned. It's not bad. You can scan me as much as you want." At this point it is not the fact that it is inconvenient to have him scanned, it is the extra radiation he is getting with each scan. Anyway, he wasn't happy.

We waited around for the room to open up and about 1:30 PM we went in. Anthony was very nervous and was on the verge of crying a couple of times. He was a trooper, though. He stayed totally still and let Dr. LaQuaglia put the local anesthetic in without crying. Once he had the local, he didn't really feel much until the near the end when he started saying it hurt.

Dr. LaQuaglia's nurse practitioner Carol was so nice. She stayed up by Anthony's head while I held his hands and she kept asking him about video games and other things to keep his mind off of what was happening. I was also trying to bring up things to make him less nervous. But we must have just been talking and talking, because at one point Carol said "do you want us to stop talking now?" and he said "yes".

After Dr. LaQuaglia took enough tissue samples, the pathologist looked at them under the microscope right in the room. The preliminary results were that it was benign, but we had to wait for the final results. Last night, Dr. LaQuaglia called and said the final results show that it is benign, too. That is why I waited until now to post anything. I wanted to have official word of the results.

Five pounds and many gray hairs later, everything is right in the world again...thank God.

Anyway, we have a clinic visit in a couple of weeks for this last quarterly visit. That's right, I said LAST. We have only two scans and visits left after this. One in August and one next February. At that point it will be five years post-treatment and he is considered officially "cured", for what it's worth. That won't stop the worrying, though.

November check-up is good

It's been a while, but the latest news is good. Anthony's November check-up, bloodwork, and CT scan were all normal. Only one more quarterly check-up and then we move to twice a year for one year. After that it is just bloodwork maybe once a year or so. That means there are only 3 more visits/CT scans and then he is past the 5 year mark and considered the same as everyone else.

I've probably said this before, but I was always under the impression that Anthony would need to have a CT scan once a year for the rest of his life. But, when I asked about that a couple of visits ago the doctor said after 5 years post-treatment they consider him the same as anyone else. Not that I don't enjoy seeing everyone at the clinic, but I'll be very glad to stop going going there. As time goes on, I know fewer and fewer people at the hospital anyway.

Until next time...(February)

Next check-up is in November

Anthony's last checkup was good.  Bloodwork was normal, CT was normal.  That check-up was at the 3 1/2 year from end-of-treatment mark.  The next one is the 3 3/4 check-up.  After that, in February, we will be beginning the fifth year post-treatment.  During that time, there will only be 2 check-ups, at 4 years (end of year four) and 4 1/2 years.  The last check-up will end year five in February 2008.  That is all that is left.  He will occasionally go back for bloodwork and maybe a CT.

End of 3rd year tests look good!

About three weeks ago Anthony went for his three year post-chemo tests and everything looks good! He did a blood test, echocardiogram, and CT scan. Everything is normal... Yeah!

I didn't write about this in my last entry because I thought it was nothing and did turn out to be nothing in the end, but the last echocardiogram in September showed something weird (according to the cardiologist). He noted that there was a slight difference in movement around the left ventricle and this could signal possible problems. As a little background, one of the drugs they gave to Anthony (adriamycin a.k.a doxorubicin) can cause enlargement of the heart, also called cardiomyopathy. This could possibly be serious and would eventually result in the need for a heart transplant. So, when the cardiologist said he saw something funny, I kinda worried. When he told me that he saw this difference in movement though, I immediately thought about the apparatus in Anthony's chest. The material they put in there to take the place of the ribs can block ultrasound waves and make it difficult to see everything. I mentioned this to the cardiologist and he did not want to go back and look at the previous echo. He was convinced that he saw something real. I was not so convinced, though.

The cardiologist wanted us to go back for another echo in Feb. to see if anything had changed. We did, and surprise...the cardiologist said "it is really hard to see things in there, but I see no sign of any problems". He originally wanted Anthony to come back in 6 months for another echo, but now he says we should come back in a year and possibly not again after that. He repeatedly said "everything looks really great, he looks very healthy and I don't see any problems at all". I was gracious and didn't say "I told you so", but I was definitely thinking it.

As for the rest of the scans, we go back every three months for CTs during this last year and then switch to every six months for the next year. After that, Dr. Masterson said Anthony is considered cured and won't have to go back every year for CT scans! I had thought that he would have to go every year for the rest of his life, but he will finally be free of all the poking and prodding in another two years. That was news that made me very happy.

Lab disaster may lead to new cancer drug - Cancer - MSNBC.com

Lab disaster may lead to new cancer drug - Cancer - MSNBC.com

Serendipity strikes again! The researchers in the article were using PPAR for another purpose but found they killed the cancer cells they were working on pretty effectively. From the article:

The compound works in much the same way as the taxane drugs, including Taxol, which were originally derived from Pacific yew trees.

“It targets part of the cell cytoskeleton called tubulin,” Schaefer said. Tubulin is used to build microtubules, which in turn make up the cell’s structure.

Destroying it kills the cell, but cancer cells eventually evolve mechanisms to pump out the drugs that do this, a problem called resistance.

“Resistance to anti-tubulin therapies is a huge problem in many cancers. We see this as another way to get to the tubulin,” Schaefer said.

The PPAR-gamma compound does this in a different way from the taxanes, which might mean it could overcome the resistance that tumor cells often develop to chemotherapy.

“Most of the drugs like Taxol affect the ability of tubulin to forms into microtubules. This doesn’t do that -- it causes the tubulin itself to disappear. We do not know why.”

Cheap, safe drug kills most cancers - health - 17 January 2007 - New Scientist

Cheap, safe drug kills most cancers - health - 17 January 2007 - New Scientist

An interesting development on the cancer front.

Remember when I said we hadn't heard about the latest CT scans and we assumed "no news is good news"? I was wrong. Don't get worried, though, everything is fine now.

It all started last Friday (Sept 22nd) when Dr. Masterson called and told Maria "The good news is that Anthony's ribs and lungs look good. The bad news is that the radiologist saw something, a nodule, on his arm." Maria raised a good point and asked why they were looking at his arm. Dr. Masterson said it was just an incidental finding. She told us not to worry, that it looked like it was just a normal thing that happens around Anthony's age, like a cyst on the bone. But we would have to check it out with a bone scan to make sure. Make sure of what, I thought? So I called the clinic. When I talked to Dr. Masterson, she said there is the possibility of it being a second cancer. We scheduled the bone scan for Wednesday, Sept 27th.

I spent all week imagining the worst. I couldn't sleep or eat. I felt sick to my stomach 24 hours a day and couldn't concentrate on anything. The thought did cross my mind, though that the radiologist was trying to get back at me for forcing them to do Anthony's CT scan at University Radiology in New Brunswick (see my last post). Nah...they are supposed to be professionals. Anyway, the day of the bone scan came and Anthony had to get injected with radioactive dye at 9:30 AM. He wasn't too happy and was crying most of the time they were injecting it. He kept saying "Why am I the only one that has to do all this?" I felt like crying myself.

We went back to the Monroe facility of University Radiology at 12:30 PM to get the scan. I told Maria that I was going to try to avoid looking at the screen during the scan. I know how the bone scans work, and if there was cancer anywhere in his bones, it would show up as a glowing spot. I had nightmares that I would look at the screen and see all these glowing spots and realize that the spot they saw on his arm was only the beginning. He did the scan, which took about 45 minutes of lying totally still with a giant plate above his body, just about touching his nose. I'll tell you, though, Anthony is a real trooper. I asked if he wanted to listen to music; he said no. I asked if he wanted to close his eyes so he wouldn't see the machine in front of his face; he said no. He just lay there staring at the cross-hairs on the machine the whole time like some zen master in a trance. He is pretty amazing.

When the scan was over, the technician said: "do you want to see yourself on the screen?" I thought "oh, no...I can't look", but it was impossible not to. With my hands shaking, I looked at the screen and saw the most beautiful sight...nothing. There was my son's skeleton on the screen with no glowing spots where they shouldn't be. I felt a huge wave of relief, but still not quite relaxed. I'm not a radiologist. Maybe there was something I just couldn't see.

We then had to wait to hear from the clinic. We called Wednesday evening and left a message to call us as soon as they knew anything. No call Wednesday. Thursday came. 10 AM...no call. 1 PM...no call. 3 PM...no call. 3:30 PM, Maria calls and says Dr. Masterson called and said the system is down and they can't see the scans. More waiting. 4:10 PM, Maria called and said the clinic phoned again and everything looked great! There was absolutely nothing on the bone scan! Thank God! Not only was the bone scan clear, but they took a closer look at his previous CTs and saw that the same thing was there on many previous scans and it hasn't changed. Really? So why did the radiologist wait until this time to point it out and suggest a follow-up bone scan...hmmm, I wonder?

Has it really been that long since my last update? I just checked the last date and it was way back in March! Sorry for the lack of communication, but as they say: "No news is good news".

Anthony's last check-up was fine. We did CT scan, Chest X-Ray, Echocardiogram, and bloodwork in August. We haven't heard from the clinic about any of the tests, so as usual we take lack of news to mean everything is OK. The only excitement was fighting with the lazy CT technician to get her to do Anthony's scan. She kept saying that they didn't do pediatrics at that location, despite the fact that they saw his birthdate when they made the appointment and the rest of the technicians kept telling her they have no such policy. She said that their machine wasn't fast enough and that kids don't stay still enough to get clear pictures. I told her that Anthony had done CTs many times and always stays perfectly still (probably more still than some of her geriatric patients). Needless to say, Anthony held his breath and stayed very still during the scan and she didn't have to re-scan him at all. She didn't appologize, though.

Besides all the medical stuff, Anthony is doing well. He started school this Monday in the "Academically Talented" program in our town. He seems to like it and is enthusiastic every morning. He loves his baby sister, as do the rest of the kids. They can always entertain her when we are trying to get something done (ah, the advantages of having many children).

Anthony's 2 year post-treatment CT scans and X-rays were clean! We went last Friday to have them done at Jersey Shore Medical Center and then went over to Robert Wood Johnson Cancer Institute for his checkup. Everything went smoothly. Anthony had no problems getting his peripheral line put into his arm and followed all their instructions during the scan including holding his breath. We drove up Rt. 18 from Jersey Shore to RWJUH much earlier than expected, since the scans at Jersey Shore seem to take much, much less time than at RWJUH. We spent about an hour at the clinic and more than half that time Anthony played the Nintendo 64 (as usual).

More exciting news: Dr. Pan said we are now going to move Anthony into the LITE clinic, which stands for Long-term, Information, Treatment effects, and Evaluation. He is being moved to this group because he is 2 years post-treatment (3 years post-diagnosis) and is considered to be cured now!

Our next official milestone will be the 3 year anniversary of diagnosis on April 26 (two days before Sarah's birthday). That is when Dr. LaQuaglia said Anthony would be considered cured, even though he was extremely confident last April that Anthony was already cured. Speaking of Dr. LaQuaglia, we go to see him toward the end of April. This time we will have one extra child to bring to NYC. The kids are excited about Catherine's first trip to the city. We should get more astonished reactions from the Sloan-Kettering staff. "Wow, FOUR kids!" People tend to react as if it were an amazing thing, never done before. It should be fun.

I haven't written in a while since Anthony hasn't had a checkup (and won't have one until the end of February), but there is other news of note: we've added one more child to the clan. Catherine Grace Triolo was born on January 2, 2006 and weighed-in at 5 lbs. 6 oz. The baby and her mother are both doing fine. Me, I'm still hangin' in there after taking care of everyone in the house the week the baby came home. Everyone but me had a stomach virus for a couple of days...fun, fun, fun! They are all OK now.

The other 3 kids just can't get enough of the baby. They are always hovering around her bassinet and are asking to hold her. Things haven't been too hectic around the house with all 4 kids present. We've had help from our neighbor Sandy, since she has been taking the kids to the bus stop every morning and taking Sarah to preschool. Thanks, Sandy! Sleeping at night has been a bit of a challenge, though. The baby doesn't sleep too well at night (of course, she sleeps great all day long) and I think her crying disturbs the other kids to the point that they wake out of a deep sleep and start calling me for all kinds of other things..."I'm scared", "I have to go potty", "I need a drink of water", "My bear fell on the floor"... Who needs sleep anyway?

Anthony's 1 year 9 month post treatment checkup and chest X-ray were good! He is now going to move into the long-term study group. We've agreed to let him participate so that more can be learned about the long-term effects of chemo on children. Dr. Pan also confirmed the statement Dr. LaQuaglia (the surgeon) had made this past April saying that at the 3 year post-diagnosis point (that will be April 26, 2006), Anthony will be pretty much considered cured. At that point, the recurrence curve flattens out and the probability of getting cancer again at that point is about the same as is would be for someone at 5 years post diagnosis.

With each passing day, I tend to worry less, but there are times when it still bothers me and causes me to get nervous. I look at him once in a while and think "what has all that toxic medicine done to my little boy?" and "why him?". But, I am a firm believer of making the best of what life deals you and I think he is a stronger person for his ordeals. We are a stronger family for what we went through, too, and will treasure the time we have with our children and each other even more than we would have before.

Anthony at the Beach 2005

DSCN1278
Originally uploaded by DrGuitar.

On this cold rainy day, I've decided to put up a photo of Anthony from the beach in 2005. If you want to see some more photos (and even post comments on them), go to my flickr page.

Good news! All of the tests Anthony had done over a week ago were fine. Anthony and I went to the hospital over a week ago to get a CT scan, chest X-ray, and Echocardiogram. Anthony was a real trooper through all the tests. He did the echocardiogram without any problems. The technician was moving the probe all around the area where his ribs were removed and he didn't even flinch. He followed all her directions and stayed very still the whole time (about 20 minutes). Next was chest X-ray. As always, he had no problems doing everything Julia the X-ray technician said. She always remembers him and says with her eastern European accent "oh...my favorite patient is here. He is such a good little boy..."

CT scan was a long wait, as usual. This time we waited 2 1/2 hours to get into the room. First, we wait for a pediatric nurse to start the IV line. Then we wait for a radiologist to have me sign the consent for the contrast dye (in case of allergic reaction). Then we wait for the one and only CT machine to be free. Anthony was very good this whole time. He played with a toy truck that Missy brought over for him at our friend Peggy's request.

The whole time at the hospital, Anthony was in a great mood. Even though he gets poked and prodded, I think he enjoys the time spent alone with me. I know I really enjoy the time with him.

In other news, Anthony started first grade last week and seems to be enjoying it. However, if you ask him if he likes it, he will always say no. His mood says otherwise, though.

In yet other news, for those who haven't heard yet, Anthony will be getting another little sister in January. Yes, its true, we will have 3 girls and 1 boy. Anthony will be king among princesses.

OK, I've been a bit delinquent in my update posting, but everything was good at Anthony's last checkup two weeks ago. He went to the clinic for standard bloodwork, exam, and chest X-ray. The bloodwork came back with his white blood count slightly low, but at the time he had a runny nose, a slight fever, and swollen lymph nodes. The nurse practitioner assured us that kid's white counts tend to drop when they have a virus and everything was fine. All other counts were good. He still has slightly swollen lymph nodes on the back of his head, but they've been getting smaller. The chest X-ray was clear and showed no changes since the last one. We're not going back for another checkup until the end of August. Until then...

By the way, you might have noticed that Anthony's front page looks a bit different. I finally figured out why the page was not showing up in Google. I made the site with Microsoft FrontPage and it really obfuscated the HTML and stuck in most of the text as graphics. This made it hard for Google to index the site. Now, if you type in a search, Anthony's page shows up. I also linked to the main page from my del.icio.us bookmark page, which helped.

The visit to Dr. La Quaglia went very well yesterday. Dr. La Quaglia always says how happy he is with Anthony's progress. He now only wants to see him in one year. While we were discussing the dates, we realized that yesterday was the 2nd anniversary of Anthony's diagnosis. Dr. L said that by 3 years from diagnosis, the probability of anything coming back is basically the same as it is a 5 years (the semi-official time period after which kids are considered "cured"). I took that as him saying he would consider Anthony cured next year at this time!

Dr. L also mentioned that it is probably not a good idea for Anthony to be doing any type of Karate that involves sparring (like the one he is doing now). That means we should probably start looking for other sports for him to do. Getting involved with sports that could lead to scholarships wouldn't be a bad thing...

We brought Emily and Sarah this time, since the kids are on spring break. After the visit, we walked over to the Central Park zoo and stayed there for a while. The kids enjoyed it and didn't want to leave early (my idea, so we could avoid traffic). So, we stayed a couple of hours longer and then went over to a playground on the east side of Central Park where the kids played in the sand, climbed a giant rock, and explored the playground area. After leaving the park, we walked over to 2nd ave. and ate at a little diner on the corner of 69th st. On the way home, we stopped for ice cream and coffee. We all had a really great time. We're now going to have to go to Manhattan for non-medical reasons. Hooray!

We're going over to Memorial Sloan-Kettering tomorrow for Anthony's check-up with the surgeon. It has been 1 year and 8 months since the surgery and has been 6 months since his last surgical check-up. Dr. La Quaglia said that after this visit, we can see him once a year instead of every 6 months. I'll post an update after we get back.

We are planning to go to the Central Park zoo after the visit to the hospital if it is warm. If not, we may go to the Metropolitan Museum or Ellis Island.

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.