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.

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.