Days 766 - 771 Tuesday, January 31st - Sunday, February 5th, 2006

Getting back on the Prednisone seems to have done the trick reducing James' pain, which is great, however its another drug screwing with his body. At some point we'll have to wean him off of it to see if its still needed (a slow process as the drug slows down the bodies natural ability to produce certain hormones).

Thursdays chemotherapy went well, James pretty much slept through the 3.5hr treatment. Knock on wood, this round has been pretty well tolerated, we've been very proactive with the nausea medicine and it seems to have done the trick.

James has had a pretty "normal" couple of days, hanging out and laying low on Thursday and Friday. He went bowling on Sat. night, which would have been more fun if his mother hadn't beat him, and than a little shopping on Sunday.

At this time James is scheduled to go back to Boston on February 16th and 17th for another round of testing.

Days 772 - 776 Monday, February 6th, - Friday February 10th, 2006

James had a pretty good week with some exciting changes ... he is back in school for the first time since last spring.

The decision to have him return to school was complicated. In another couple of weeks he will have a new treatment plan that could again limit his ability to attend school. Did we want to get him ramped up and excited, back into the flow, only to have to turn around and pull the plug ? were we being too optimistic ? "I really want to finish High School, thats were I got sick and I want to put that part of my life behind me". I guess thats enough said, with the new semester only a week old, the timing was right, combine that with James' desire to move on ... it became clear that it was the right thing to do. I want to thank James' guidance counselor, Tim Wiles, and all the teachers and staff at SBHS for there continued support, doing what ever it takes to accommodate James at school.

Although most of James' labs are "ok", at least for him, there are still some issues. His platelets continued to drop through out the week and he needed a transfusion on Friday (this is a pretty normal side effect from last weeks chemo). Not quite so normal is his low phosphorus level, although its probably not a big deal, James has to take 12 additional Phos supplements a day (these pills are huge !).

The last thing that kinda bothers me is his continued low RBC and Hemoglobin. James has been getting shots of Epogen 3 times a week for almost a month. Although the shots have most likely prevented him from needing additional blood transfusions, I would have hoped it would have raised his counts to normal levels, versus just keeping them above the transfusion criteria. (Somewhat related article about Olympic skiers being suspended due to high HGB levels).

Days 777 - 778 Saturday and Sunday, February 11th and 12th, 2006

It was a pretty quite weekend. James did some homework, went to lunch with a friend and hung out and played some video games with his brother. Although I'm disappointed that we missed out on the huge snow storm that caused havoc across most of the east coast (we could really use some of that snow here), I'm thankful for the timing as I not looking forward to having to drive in that kind of mess this Wednesday as we head to Boston for James' tests.

Days 779 - 781 Monday - Wednesday, February 13th - 15th, 2006

James is enjoying being back at school, so much that he has added two more classes, if everthing works out he will be able to fulfill his requirements and graduate this spring.

It looks like the phosphate "horse pills" he is taking are doing the trick as his phosphorus level is back to normal, unfortunately another test has hit the skids ... a liver function test (LDH) is pretty high (5x normal) ... if it isn't one thing its another.

We all went and watched Aarons basketball game Wednesday night, another heart breaking loss, they have two more games left this season. Here a couple of photo's of Aaron during a recent game. Making a pass to the post player and hitting a 3 pointer.

Day 782 Thursday, February 16th, 2006

Although we hit some traffic, our 4:00am departure this morning worked out perfect as we arrived at Childrens Hospital in Boston right on time for James' 8:00am appointment. He went in to start the 2hr PET scan around 8:10am and I left to grab a bit to eat. At 9:30 I got a call saying they had trouble getting an IV started and they had to wait for the IV team. So much for being on time, it looks like we're already 1.5hr behind ... it looks to be another loooong day at Childrens ....

After the tough start, the day of testing ended up working out pretty well. During the 2hr wait for the CT scan (a normal process as James needs to drink some "contrast", as a prep to the scan), James finished a book and I took a nap. When he was done we had some lunch and headed to the hotel to relax. My brother Dave picked us up and we had dinner at the Longhorn, one of James' favorite places, it was very nice and we all had a great time.

Day 783 Friday, February 17th, 2006

The doctors visit at Dana-Farber did not go well. The results from the PET scan were mixed, some area's had improved, others had gotten worse. The doctor discussed two possible options, we could try another "traditional" type of chemotherapy or we could get involved in some clinical trials of "non traditional regimens", (traditional chemo being a treatment that reduces and shrinks the tumors, non-traditional therapy would be one that would not reduce or eliminate the tumor but would stop its progress). These meetings, especially when the news is not good, are tough. You start to get emotional, your mind starts to wander, the information becomes tough to digest. James, who rarely shows emotion, was clearly shaken by the results and subsequent discussion, seeing his emotion and listening to him reiterate his desire to "just want to live" was very difficult.

There is much information from the meeting that needs clarification but that will have to wait until next week, this weekend will be all about trying to have some fun and restoring some joy and happiness.

Day 784 Saturday, February 18th, 2006

Although he had a bit of a restless night sleeping, Saturday seemed to have provide the fun that James needed to rebound from Fridays disappointing news. The highlight of the day was probably Pam and James' 4 pin bowling victory over Aaron and me. His buddies Dan and Davin came over after dinner to hang out and watch some movies.

Days 785 - 786 Sunday and Monday, February 19th and 20th, 2006

Not much happened on Sunday .. we all pretty much layed low trying to relax, Monday was a little more "exciting". James had a tough night with cold chills and sweats, he didn't feel well Monday morning and subsequently did not go to school. The waiting game is starting to hit full stride as we wait for responses to the emails we sent out Friday afternoon to James doctors in Boston and here at FAHC. It was a long day, I think my computers refresh button is worn out, but by 8:00pm we had our replies. We should get the final recommendations from Boston tomorrow afternoon and will hopefully meet with the Dr's here on Wednesday.

Day 787 Tuesday, February 21st, 2006

James returned to school today, he's a bit overwhelmed as he has added 2 more classes but he likes the courses and teachers and is excited to be back in the swing of things. Tuesday night we all went to Aaron's basketball game, the last one of the season, he went out feeling good with a season high 17 points and more importantly, a team win.

Day 788 Wednesday, February 22nd, 2006

Today started off pretty lousy, as James was at his school locker someone or something, a backpack or shoulder ... not really sure ... banged into his Port. We got a call from the school nurse saying he was in a great deal of pain and that we should come and pick him up. I think it was not so much the pain, although he was hurting, so much that he couldn't move his arm, but a combination of the stress from his latest test results, not knowing if anything "bad" happened to the port, missing out on school after finally getting back ... it all seemed to converge to create a sad situation.

When I went to pick him up I brought him some pain meds, he agreed to stay at school for a while, let the meds kick-in and then return to class, unfortunately he never got better and Pam picked him an hour or so later.

Afternoon update :
The plan was to meet with Dr. Homans this afternoon to discuss treatment options and to get a feel for James' prognosis. Although there was a good deal of anxiety going into the meeting, it turned out going well and Pam and I both felt better afterwards. We decided on a new chemotherapy regimen wichi will start on March 9th, it will be administered here at FAHC.

Days 789 - 791 Thursday - Saturday, February 23rd - 25th, 2006

The last couple of days were pretty uneventful, the pain in James' shoulder and port area is gone and he is back at school, life is abit "normal" again. Having said that, its been a little crazy as we try and take advantage of the time we have before James restarts his treatments, especially since the boys have off next week for winter break. With such short notice, it was impossible to get a flight out of Burlington but we were able to find something out of Albany ... warm and sunny Florida, here we come.

Days 792 - 793 Sunday - Monday, February 26th - 27th, 2006

Sundays trip to Florida was long (12hrs) but pretty uneventful. We arrived at my parents house around 9:00pm, had a cold beer and quick tour of their new house .. then a search for a thermometer ... James was not feeling well and he was burning up. Monday morning he was feeling better and our vacation was back on. After a relaxing morning, Aaron and I headed for the golf course, James and Pop-pop were going to meet us in an hour. When James showed up he was wiped out, although his fever had returned he still wanted to give golf a try. It didn't take long, just 4 or 5 swings, to figure out it was not meant to be and he and Pop-pop returned home. Aaron and I got home just in time to take James to the ER, his temperature had risen to 102 and the doctors at FAHC recommended he get a blood culture and IV antibiotics.

Day 794 Tuesday, February 28th, 2006

The intent of this journal was to document and inform friends and family of James' fight with cancer, unfortunately its seems as if everything I write is negative. I hope to stay objective, include positive stuff and try not to appear to be a whiner ... which at this point might be difficult.

Today was a really tough day, mis-information and confusion ruled the day.

The Oak Hill hospital and ER was crazy busy, besides the normal traffic, there is currently a flu epidemic. The hospital had no beds available so although James was "admitted", he spend the night on a "stretcher" in the ER. The plan was to admit James for the night, this would allow them to get a second dose of the IV antibiotic and then he would come home (IV antibiotics start to work almost immediately, whereas oral antibiotics take upto 48 hrs to take effect). When I arrived Tuesday morning James had not yet received his second dose, when I finally was able to track down a nurse she told us they changed the dose to every 24hrs, "Huh ? I thought he was being discharged after the morning dose", the nurse than proceeded to tell us that James had sepsis, a serious infection, and he wouldn't be going anywhere. Needless to say this was devastating news and James was crushed. I asked the nurse to see the lab results and she refused ... I needed to talk to the doctor ... I had to make 3 phone calls before I could get the doctor to stop in and talk with us ... The nurse had mis-spoke, none of the cultures were complete, however they did want to do some further testing and he did expect James to stay for at least another day. The were concerned with James pain in his groin and lower back, I tried to explain that these were "known" problems caused by his cancer and not new issues that needed to be resolved ... this "advice" was basically ignored by his "primary" doctor. After an ultrasound of his kidneys and bladder the infectious disease doctor stopped by to see James, we had a long talk and he seemed to better understand the situation, he said that he would talk with his primary (the only one who could discharge him) and see if they could get him discharged. An hour later they came to bring James to a bed in the main hospital, it seemed a little crazy since he would be coming home soon .. but whatever. As we checked into the new room the nurse said that the doctor had ordered a full CT scan of his abdomen and pelvis .. WHAT ? this was crazy, James had heard enough, he started ripping off the electrodes that were used to monitor his vitals and said he was leaving. The nurse quickly called the doctor and apologized .. its an ultra sound they wanted to do .. not a CT scan. At this point I was really stressed, all we wanted was a blood and urine culture, some antibiotics if applicable and to be on our way, instead were in this twilight zone hospital ... do the doctors know something that there not telling us ... all of this testing seemed way overboard. By the grace of god (actually Pam and my sister Debbie) James' Vermont oncologist called my cell, I explained what was going on and told her I didn;t know what to do. She agreed that they must be reacting to his pain (which we know is cancer related) and not the fever symptoms and that it was OK to go ahead and refuse the treatments and ask to be discharged, a seemly simple enough thing to do but something that your not accustomed to doing. The nurses on the floor were very nice and acommodating, we got an prescription for an oral antibiotic and were on our way, we probably should have stayed and had James get second dose of the IV antibiotic but at this point there was no holding James back .. he was out of there.

Only time will tell if we made the right move or whether more testing was appropriate .. who knows, all I know is that James was happy again and we were back on vacation !! We had a great steak dinner .. a few well deserved drinks .. and settled in and watched American Idol.

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