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.

Christmas was good yesterday. All the kids liked their presents and thought that they had gotten more than they had asked for (I asked them). It was really a joy to watch the innocence and fun they have. It was also nice to see that they were just as excited to watch us open our gifts as they were when opening their own. The amount of toys we now have in this house is ridiculous. We are going to have the kids go through their stuff and decide what to donate to charity. It may be hard to do this, but it will teach them two things: you don't need so many toys and it feels good to give things to people that are not as fortunate as yourself.

We went to the clinic today to get bloodwork done. WBC still up at 11,000, Hemoglobin 10.6, Platelets at 146,000 all very good. His counts are probably still declining, but at this point they are higher than I thought they would be. Maybe this means no hospital stay with fever this time.

Emily came with us to the clinic since she didn't have school. The two of them spent most of the time there playing with the sand table. It is a table that has little magnetic vehicles under glass with some sand under them. You control them with magnets under the table. It is a great toy that they always love to play with, and it is so simple.

Well, chemo #11 down, 3 to go! We did this treatment as an outpatient. We went to the clinic at 9:30 this morning and left at 5:30 PM. His counts were good, WBC 22,000, Hemoglobin 12, Platelets 136,000. We were a bit delayed in getting started because we had to wait for his urine specific gravity to reach the right value. You really have to be hydrated to get the cytoxan. We started treatment at 12:30 PM, but had to wait until hour 4 (4:30 PM) to get the MESNA (the drug to help protect his bladder from the cytoxan). He was supposed to get another IV MESNA at 8:30 PM, but we were not going to stay there and neither was the staff. They gave us the oral version of MESNA and we mixed it in apple juice at 8:30. Anthony did not really want to take it, as usual, but we forced him to drink it.

The clinic was pretty quiet today. We brought presents for all of the regular nurses. Maria also made a tray of cookies. It was gone within about 2 hours. Anthony gave Dr. Pan a tray of nuts and wanted me to tell him the we gave him nuts because he is nuts. One of the nurses, Diane, took us on a tour of the rest of the Cancer Institute. Anthony liked seeing the loading dock, of all things. Anthony also got lots of Christmas presents, from Nicole the Child Life specialist, to bring home for himself, Emily, and Sarah. We will be going to the hospital party tomorrow where the kids will get more gifts.

Another clinic visit today. This time Anthony was able to get a platelet transfusion. His counts were: WBC 900, hemoglobin 12.2!, platelets 9,000. So his WBC is climbing and the whole blood transfusion really boosted his hemoglobin. Now we just have to continue the sub-q GCSF shots until next Wednesday. Personally, I think we should stop Monday or Tuesday, since he is already at 900, but we'll see. If he starts complaining about bone pain, we'll stop.

Today was a clinic day. Counts are: WBC 200, Hemoglobin 7.4, Platelets 13,000. They gave Anthony a whole-blood transfusion today since he has been kind of miserable. He really needs a platelet transfusion, but there is a severe shortage so they didn't give him one since he is asymptomatic. He will have to go back on Thursday to check his platelet level again. He may get a platelet transfusion then, if they have any on-hand.

Here's some good news: no more doxorubicin! The roadmap for surgery-only patients (as opposed to patients getting radiation) says that doxorubicin is given only until the 9th cycle. This is because it is not given for 2 cycles in the middle of the treatment schedule to patients getting radiation, since it exacerbates the side effects of the radiation. For surgery-only patients it is given up until the 9th cycle, then removed. He now only gets Vincristine and Cytoxan (cyclophosfamide) during cycles 11 and 13. The even better news is that those two drugs can be given while he is an outpatient in the clinic. All this means that he will only have to be admitted 2 more times for cycles 12 and 14 (baring any fevers).

Chemo #10 is finished! We just got back home today around 5:30 PM. This morning, his WBC was 1,700, platelets were 168,000, and hemoglobin was 7.7. We decided to get a whole blood transfusion today, which is why we came home later than expected. Last time his hemoglobin was at that level, he was miserable and tired. I don't think he could have lasted until the clinic visit next Tuesday without having to go back for a transfusion, so we did it after his last Mesna (rescue drug for his bladder lining).

Anthony had a good time in the hospital this treatment and didn't complain too much about nausea. He threw-up a couple of times but was fine afterwards. Maria stayed with him the first three days, I stayed the last three. He was a bit bored, since Peggy wasn't there until today, but he made up for it today. When Peggy came in, we went down to the basement store-room to get the Christmas tree and some new toys for the playroom. We put-up the Christmas tree and made some decorations. It's funny, but the only time Anthony likes doing arts and crafts is in the hospital.

While I was eating my lunch, Anthony played some video games with one of the teachers, John. He is a young guy, just out of college and is actually good at these games. Anthony still beat him 4 times at "Mario Kart", though. When I came back, John said "I hope you realize how much musical ability Anthony has." While playing the game, Anthony would hum along with the songs and would be right on key. I took this as a compliment, since John majored in music and math in college, but it didn't surprise me. Both Emily and Anthony have been able to hum the correct tunes for songs since they were babies; Sarah is following right in their footsteps.

Anthony is back in for chemo #10. So far, he is handling it well. They did a CT scan this morning and found that there was nothing on his lung. It was just the patch in his chest that showed up on the chest X-ray. I am going to make sure that they send this scan over to MSKCC so that everyone has the same information this time. The chest X-rays taken at RWJ have been sent to MSKCC and vice-versa. So, in addition to Maria correcting many things with the insurance company, we now have to act as liaison between the two hospitals to make sure records are exchanged. This is in addition to the may times I've repaired things in the hospital for them. Maybe *we* should be getting paid.

We're finally home! His WBC was 800 this morning and we left at about 3 PM today. They gave him a 24 hour antibiotic just to be sure, though. We got a chest X-ray and echo-cardiogram as prescribed by the protocol just before we left. We got a call later tonight from Dr. Pan telling us that the radiologist that read the X-ray said that there was something that he couldn't identify in Anthony's chest, that it might be a recurrence and they recommend a CT scan to be sure. Dr. Pan said he was positive that what they saw was the wedge and patch that was put in his chest in-place of the ribs and does not suggest a CT scan. Since we had the surgery at Memorial Sloan-Ketterning, the radiology dept. at Robert Wood Johnson did not have post-operative X-rays to compare with these new ones. All they had were the pre-operative X-rays which showed nothing in his chest. Dr. Pan called Dr. LaQuaglia (the surgeon) and described what was on the X-ray. Dr. LaQuaglia immediately said it was the patch that he had put-in. I don't see why Robert Wood Johnson did not ask for a copy of any of the 10 post-op X-rays of Anthony's chest that were taken at MSKCC, or why we can't just have this X-ray sent to Dr. LaQuaglia to have him take a look. On the one hand, I would hate to make Anthony do a CT scan if not necessary; but on the other hand, I am a very paranoid person and would like to have the CT scans now in addition to the ones at the end of the treatment. Oh, well... all I know is that I won't sleep very well until we clear this one up now.

Still here....White Blood Count is still 400 after 4 days in the hospital. We're now on day 5 and still no neutrophils. This is very depressing. At least with the 5 day chemo, you know when you're getting out. This uncertainty is excruciating. I don't even get my hopes up anymore in the morning when they get his blood count. I think Maria is more depressed than I am. I have to come back here next Friday for the 5 day treatment again...aaaaagh!

Well, here we are back in the Hospital. Anthony got a fever early Saturday morning (3 AM) and we had to come in through the ER. Needless to say, I didn't get much sleep that night. We were looking forward to going to Kristie's wedding on Saturday, but of course we didn't get to do that. It was very, very dissapointing , since Maria and I have not been out together alone since June. Anywho...still here on Monday night just waiting for some neutrophils to be created. Let's hope he has some tomorrow morning.

We went over to Memorial Sloan-Kettering yesterday to talk to Dr. LaQuaglia, Anthony's surgeon. He felt the area where he removed the ribs and said it feels good and solid. He was happy with the outcome of the surgery and said that because the resection was of the anterior (front) portion of the ribs Anthony has less of a chance of getting scoliosis than someone who has the posterior (back) section of ribs removed. He also said that later in life (teens), that the area would be less noticeable if the pectoral muscles were larger. So Anthony will have to do lots of push-ups and pumping iron. We can also be referred to a plastic surgeon much later if Anthony wants to have the area reconstructed or cosmetically improved. It doesn't look bad to me, though.

Dr. LaQuaglia also gave us a copy of the pathology report on the resected tissue. There was no sign of tumor cells in the area where the needle biopsy was performed. There was no sign of tumor cells in the margins (end parts) of the partial fourth or fifth ribs that were removed, or in the distal fifth rib (far end portion) that was removed. The only place that there were still some viable tumor cells left was in the small core of the tumor that was left in the intercostal region between the fourth and fifth ribs. The chemotherapy response was grade II (80% necrosis), or there were still microscopically viable tumor cells left. I had originally thought, from seeing the CAT scans, that the resonse would have been grade I, or total necrosis, but there were still some microscopic traces of the tumor left. I just pray that those tumor cells didn't go anywhere else before they were removed.

We went to the Metropolitan Museum of Art afer the hospital. Emily and Anthony had a great time looking at the sculptures and paintings. Sarah slept most of the time.