Friday, December 26, 2003

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.

Friday, December 19, 2003

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.

Thursday, December 11, 2003

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.

Tuesday, December 09, 2003

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).

Tuesday, December 02, 2003

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.

Saturday, November 29, 2003

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.

Thursday, November 20, 2003

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.

Wednesday, November 19, 2003

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!

Monday, November 17, 2003

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.

Friday, November 14, 2003

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.

Saturday, November 08, 2003

It looks like we're finally going home at 9:30 PM tonight. Anthony had his Broviac (central line) replaced yesterday. He had to have general anesthesia, intubation (breathing tube), the whole works. Everything went well. I told them to call me up in the room (I gave them the extension) BEFORE they woke him, but people just don't seem to listen. They called a while after they sent him up to recovery and said they couldn't find us. Hello...I GAVE them the extension before I went up. I wanted to wait outside the OR, but they wouldn't let me. Anyway, it was easy to find him in recovery by just following the screams. He's a very feisty kid. He's also an amazing kid. He had no pain killers at all after the operation and didn't complain a bit about pain. I looked at the site today when I changed his dressing and it looks like they closed off the old site with a couple of stitches and put the new line about a centimeter above that site. So he has a new incision and a couple of stitches and didn't complain about pain...he's pretty amazing.

So, up to this point he has a puncture scar from the bone marrow biopsy on his back, a large scar where they opened his chest for the tumor removal, a pretty large scar from the chest tube on that same side, and now two scars on the other side of his chest from the Broviacs. Oh well, he be able to show off his war wounds later in life.

I think both Emily and Sarah were worried about him after he was wheeled up to his room on the stretcher. He was still kind of out-of-it and had the big bandage on his chest. They were both just staring at him with this concerned look on their faces. Emily stood there for a while and then disappeared out of the room. The next thing we know, she comes in the room with a picture she drew of her standing next to Anthony with hearts above their heads and the words "Get well soon Anthony" written on the side. It was very nice to see how empathetic she is. I think it is good to get her involved with Anthony's treatment, she knows he has something wrong with him and she feels like she is doing something good to help him. She is a good big sister.

Sarah does her part by comforting Anthony when he is screaming and crying on the toilet trying to move his bowels. She comes over, pats him on the back, or tries to make him laugh. It is funny that even at that age (18 months) that she is showing empathy.

Thursday, November 06, 2003

Well....It's been an eventful couple of days. We came back to the hospital yesterday to start chemo. The Vincristine and Cyclophosfamide went in without a problem, then they started the doxorubicin. I thought everything was OK until I went to put on his pajamas and noticed orange stains on his undershirt and pants. I thought it was the orange-ice he had eaten earlier, but when I lifted-up his shirt, I saw the doxorubicin, which is also orange, was leaking from where they patched his tubes the day before. The nurses had to get out the chemo spill kit and we had to wipe him down and throw-away his clothes (very nice ones from the Gap). The doxorubicin can cause pretty nasty burns on the skin, but only a little spilled out. The line had to be clamped to prevent his blood from leaking out of the hole. They only have giant scissor clamps in this hospital, which meant he had to sleep with two of these monstrous things on his chest all night and had to have them on all day today.

The nurses then had to put in a peripheral line (in his arm) to give him the rescue drugs (MESNA and Zofran) over-night. It took them three very painful, scream and sweat filled tries to get the line in. He was exhausted after that and fell asleep, but he would wake up once in a while and say his arm hurt during the night (along with hourly unrinating).

They then decided to replace his Broviac, but this hospital is so short-staffed in anesthesiologists and radiologists that they couldn't schedule the Broviac replacement until tomorrow at 4PM. This means he can't eat anything from 8AM tomorrow until 4PM and has to have the giant clamps attached to him tonight and tomorrow. They wanted us to go home today, come back tomorrow at 4PM to do the replacement, go home again and come back Monday to do the remaining chemo. In the end, I told them I was not comfortable going home with these clamps on him, since if they opened in the middle of the night and we didn't notice, he could bleed to death. They then said we could stay overnight.

I was so unhappy, I asked to talk to the president of the Children's hospital. He came in and fed me the line about the hospital growing more quickly than they expected and told me about the national shortage of anesthesiologists and how they were trying to recruit....blah, blah, blah. I told him that his recruitment doesn't help me today with Anthony's discomfort. According to the nurses, anesthesia and radiology have been an ongoing problem here. Oh, well, at least I made my displeasure known. I will follow-up with a written complaint to the hospital president.

Tuesday, November 04, 2003

Well, we're not in the hospital as we expected. When we got to the clinic this morning, the nurse noticed that the caps that attach to his broviac were not staying on tightly and fluid was leaking around them, so they decided to repair the ends of his broviac. That entailed going into the OR (a sterile environment), cutting off the end of the broviac and splicing on a new one. Anthony was scared at first, since he doesn't have good memories of operating rooms, but when I (dressed in the gown, mask, and cap) started playing the Gameboy and showed it to him, he calmed down. Everything went smoothly, but they said you can't use the new line for 24 hours. So, we'll be back tomorrow to start treatment a day late.
We're going to the hospital in a few minutes. Anthony is always excited to go now that they don't have to poke and prod him too much. They just hook-up everything to the broviac and away he goes...

Monday, November 03, 2003

Tomorrow is the start of Chemo #9. Ever since we switched to 24 hour infusion of the doxorubicin, these cycles go pretty smoothly. His mouth and tounge hurt for a couple of days, but he doesn't get the mucositis as badly and can eat through everything.

On Thursday, we're going to follow-up with the surgeon at Memorial Sloan-Kettering. We will try to go to the Metropolitan Museum of Art afterward. We'll see how long Sarah can last.

I'll be writing from the hospital this time, so you should see an update tomorrow or Wednesday.

Saturday, October 25, 2003

I think Anthony's hemoglobin must be low. He was pretty tired and miserable toward the end of the day. His tiredness was also woresened by his lack of sleep last night. He kept waking up and going into these coughing fits. He coughed so much that he couldn't breathe and then started screaming and crying because he got scared. I'm sure whomever gave this virus to him did not have sympoms this bad, but since he basically has no imune system right now, all of these ailments are amplified. He didn't cough too much during the day today, but as soon as he lay in his bed tonight he started coughing again. I hope he (and we) can sleep tonight...

We carved pumpkins today here's the Spongebob one and here's the ghost.

Wednesday, October 22, 2003

Anthony has not been feeling well the last couple of days. I think he (and Emily and Me) caught a cold from someone at his birthday party. Yesterday, he had a stuffy nose and a fever of ~99.5. Today it went up to 100.8. We called Dr. Cole, the on-call doctor tonight and he said if Anthony looks OK, it is probably not a big deal, since his absolute neutrophil count (ANC) was 1875 yesterday. We are going to check his temp before we go to sleep and if it is >101.5 we are going to the hospital.

Tuesday, October 21, 2003

Anthony's counts were still pretty good today. His WBC was 2500, his platelets were 140,000, and his hemoglobin was 8.1 (kind of low). They decided not to transfuse him until he seems tired, or weak. So far, though, he seems pretty much himself. He made me blow-up his new Spongebob inflatable chair when I got home so he could watch, you guessed it...Spongebob.
Here's the new way I will be posting updates. It is powered by I can type in posts from any computer now, so expect more updates from the hospital!