Wednesday, January 28, 2004

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:

Saturday, January 24, 2004

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.

Wednesday, January 21, 2004

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.

Friday, January 16, 2004

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.

Wednesday, January 14, 2004

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.

Tuesday, January 13, 2004

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.

Sunday, January 11, 2004

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

Friday, January 09, 2004

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.

Wednesday, January 07, 2004

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.

Saturday, January 03, 2004

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.