Day 944
Tuesday, August 1st 2006
Days 945 - 946
Wednesday - Thursday, August 2nd & 3rd 2006
Days 947 - 949
Friday - Sunday, August 4th - 6th 2006
Day 950
Monday, August 7th 2006
Day 951
Tuesday, August 8th 2006
Day 952
Wednesday, August 9th 2006
Days 953 - 954
Thursday and Friday, August 10th and 11th 2006
Days 955 - 957
Saturday - Monday, August 12th - 14th 2006
Day 958
Tuesday, August 15th 2006
Day 959
Wednesday, August 16th 2006
Days 960 & 961
Thursday and Friday, August 17th - 18th, 2006
Days 962 - 964
Saturday - Monday, August 19th - 21st, 2006
Day 965
Tuesday, August 22nd, 2006
Day 966
Wednesday, August 23rd, 2006
Days 967 - 969
Thursday - Saturday, Aug 24th - 26th, 2006
Days 970 - 971
Sunday - Monday, Aug 27th - 28th, 2006
Days 972 - 973
Tuesday - Wednesday, Aug 29th - 30th, 2006
The doctors continue to tweak James' meds in the hopes of getting him comfortable on oral meds so that he can come home.
There has been no real progress in finding out whats causing the problems, this will "probably take some time".
James continues to take walks with us every time we visit, hopefully will help something ?? who knows.
Its all pretty frustrating.
We got some positive news on Wednesday as an ultrsound on James kidney's showed no signs of hydronephrosis.
Thursday was chemo day, since the source of James' back pain is still unknown, the oncologist decided not
to give James Vincristine as one of its side effects is neuropathic pain, a possible, but unlikely cause of his pain.
With James feeling better on the new mix of drugs, and since none of them are in IV form, he was given the green light to come home
Thursday afternoon.
James is scheduled for a PET scan on Monday morning, the results, which we are always anxious for, have a bit
more importance as it should give us some more clues, or at least eliminate some choices as to why his back hurts.
James continues to feel a little better each day. The problems that caused him so much trouble over the last
couple of weeks, back pain and kidney/urinary issues, seem much better, currently the main issues are dealing
with the chemo side effects ... not sleeping well and nausea.
James had a somewhat busy and social couple of days, out for walks, car stereo shopping with Aaron and
going out to dinner and movies with friends.
The next couple of days will be pretty interesting ... we will be anxiously awaiting Mondays PET scan results,
trying to get James off of the 14 different drugs he's taking each day, and eager to see how his body handles getting back to
physical therapy ... never a dull moment ...
Today was one of James' better days ... the PET scan went well and finished around 11:00 ... he took a short nap and then
went to physical therapy. He arrrived home energized and feeling great. All in all a very good day !!!
James continues to be doing pretty good, he wanted to go out and play golf today but with us being a little
nervous about him aggravating his back again, we suggested he wait a few days before going out
to the course.
I guess in a perfect world we would have had the PET scan results Monday afternoon .. we didn't.
I called this morning, talked with the doctors, and again this afternoon ... still no results.
As frustrating as it is .. I know they are very busy and are doing thier best ... but gosh .. at least
call me and tell me something .. anything ... tell me you didn't have time, or the radiologist
hasn't read them yet ... no communication really stinks !!!
James got up early, went and had his blood drawn and then was off to physical therapy. He "chilled"
for most of the afternoon and then we all went bowling after dinner. Bowling was fun ... Aaron
and James tied the second game so they played a third game tie breaker .... Aaron won.
I called first thing this morning to get Mondays PET results, the prelimanary read was not encouraging, there
were two lymph nodes that showed up as PET positive, these are new nodes that had not been
positive on previously scans. The plan was for the oncologist to meet with the radiologist at 11:30am
and go over the PET results and to compare them with the CT scan, then call to update us ... yup ..
we never got a call ... It was a long day.
Tomorrow is chemo day, I gotta believe we will get the complete results while in the hospital .. but who knows.
Thursday was chemotherapy day, it marks the last of 4 cycles (155 days) of the Irinoteacan, Vincristine and Temodol regimen.
Up until now, this treatment has been pretty well tolerated, but for some reason today did not go very well.
At first, about 2 1/2 hours into the treatment, James started getting itchy and felt a little warm.
Things continued to get worse as the day went on. There were two main issues, James felt a strong
burning feeling .. not a fever type of thing, but felt like his body was on fire on the inside,
to go along with this he was very unstable when he stood up ... to the point of him falling down in the kitchen.
Thursday night was a really rough night and Friday was not much better. James (and Pam) were back in the hospital
at 9:00am on Friday, they ran some blood tests, gave him some IV fluids and pain meds. Unfortunately,
nothing seemed to help, the theory is that this is just a "side effect" and it will hopefully pass.
Test results : There is a correlation between the two PET positive lymph nodes and the CT scan.
James is scheduled for an Needle Biopsy performed by Interventional Radiology (they use a "live xray"
to guide them to the proper spot). At a minimum, they should be able to determine wether the nodes are
active due to inflamation ... or due to cancer. Best case would be that they would be able to get enough
of a sample to do some staining and possibly gain some more clues to exactly what type of cancer James
has been battling. Copies of the PET and CT are being sent to Dana Farber, once the results of the
biopsy are available we will be traveling to Boston to meet with the team there.
James had an "ok" day on Saturday, he was feeling a little better, got out for a short walk at Waterfront Park, he just didn't have much energy ... body still achey.
On Sunday he went to Circuit City in AM and then went with Pam to his Aunt Colleens house, he felt good, looked good.
Around 3:00 pm he went to the bathroom and had an immediate spike of pain in his left kidney, there blood in his urine.
The pain continued, throbbing spasms in left kidney, they came right home and we loaded him up with pain meds, within 2 hours the spasm's were better but he was very nauseous, throwing up.
He slept ok Sunday night but still had "spiking" pain when going to the bathroom Monday morning.
James and Aaron went for a walk in the afternoon, Monday night we all went and played wiffleball at
Little Fenway and then went out for a bite to eat.
Its bothersome how quickly things can turn for the worse, we now never leave the house with out "back-up" ...
a pocket full of pain meds.
I feel like I'm in the movie "Groundhog Day", every day is the same .. James wakes up, is in pain and
uncomfortable ... our minds wonder if its ever going to get better ... by the afternoon, after medication, he feels
ok. Pam and I take a deep breath ... have a drink and crash.
James' biopsy has been postponed a day, it is now scheduled for Friday, this will probably postpone the pathology
and results until next week ... more waiting. With the recurrence of tumor, Boston feels that
a Stem Cell Trasnplant does not make sense ... so now what ??? who knows ... There has been some talk about surgery to
try and repair the kidney/bladder pain issue ... but that was before the PET results, so how do we deal
with that issue ...
Pam and I (and I'm sure James) are growing increasingly frustrated.
James' left kidney continues to give him problems ...
pain from Sundays incident lingered thru Tuesday, today he was fine all day,
he walked, felt good was watching TV with Pam this evening
then got up to go pee ... bamm .. pain spiked in his left kidney
(no blood .. no problems with flow etc. just a lot of pain).
Its been a few hours .. and lots of meds and its still hurting.
It seems to be the same scenario as Sunday .. it comes
out of nowhere and takes hours and sometimes days to recover.
Thursday was a fairly uneventful day, James felt a little better and was able to go to his
physcial therapy appointment.
Friday James was scheduled for his
CT guided biopsy.
Earlier in the week, during the pre-admissions call, I was informed that this procedure would be done under
conscious sedation using Versed (similar to valium) and Fentanyl (for pain relief).
James has become very weary of operations and is very sensitive to pain .. he is always
adamant about being "put out", I knew it wouldn't sit well so to minimize his anxiety I elected
not to tell him until we were on our way to the hospital.
It was a long wait in the hospital, things were running late .. the longer we waited the
more jittery and anxious James became. While we waited for the CT to become available, the radiologist
performing the procedure brought me into a room to discuss the procedure.
He had James' latest CT and PET scans displayed on a couple of computer screens so he could show
me the lymph nodes he was going after. I had been under the impression
that the targeted nodes were along his back and would be easy to get to, I was surprised
to see where they actually were and how precise the positioning of the needle had to be
to avoid his spine and some of his internal organs. Due to the delicate nature of this
operation, the radiologist was only planning on getting enough "cells" to verify whether
the lymph node was "just inflamed" or whether it was enlarged due to cancer. I discussed
James' dilemma and expressed
my hopes that enough of a sample would be obtained so that pathology might
be able to take another crack at determing the type of cancer.
After 6 1/2 long hours the procedure was done, James had recovered and was back home.
The report from the doctor was that things went well and although it was not clear,
we believe they got enough of a sample to do a "biopsy". Having said that, in retrospect we are not exactly sure what was meant by "biopsy" ..
I guess we'll just have to wait and see (yes its my fault for the ambiguity as I forgot to bring our note book and know we can't remember
exactly what was said ... damn !).
James was starving (he couldn't eat at all prior to the operation) and wanted chinese for dinner ...
a sure sign that he was fully recovered ...
The weekend was pretty quiet, James was still pretty sore from the biopsy and it rained for most of the weekend .. it really made for
a good excuse to lay low.
Monday was a bit more "exciting", from talking with James's oncologist ...
they fell that they had obtained a large enough
piece of tissue to determine whether the biopsied area represents tumor or not, it is very unlikely they
will be able to make any diagnosis from the sample. The results should be available on Tuesday.
We have a meeting scheduled for Wednesday to try and figure out what the next type of treatment will be.
Monday night James called Pam and I into his room for a talk, this was very unusual as he never talks about the way he feels.
It was a difficult and emotional conversation, especially with so much uncertianty,
hopfully we can get a new plan in place and started ASAP.
Today was a good day ... James wasn't bothered by any particular pain or problem, he went and
got his blood drawn, got a hair cut ... he was very upbeat and seemd to be in a good mood.
It was great to see ... and feel ... it is amazing how much of an effect it has on Pam and I,
it was wonderful to finally we have a semi stress free day.
James, Pam and myself met with James' oncologist today to discuss the results of his biopsy.
It was a tough meeting as the news was not good. James, who generally hides his emotions quite well, was visibly
upset. I know I've said it before ... but I can't even imagine whats going through his mind ... 2 1/2
years, the ups and downs .. sooo much to handle for such a young man ....
The plan, which I believe Boston is in line with, is to pursue having the two lymph nodes
surgically removed, radiation therapy, and
following it up with experimental
There are many, many details that still need to be worked out.
Here is a great link to information about
Angiogenesis.
James has had a pretty good couple of days, he's been pain free and doing lots fun things.
On Thursday Aaron and James went to Circuit City and bought some new speakers for their car,
James went for a long afternoon walk and went to the movies that night.
Friday he went to physical therapy while Aaron and I installed the speakers.
Saturday James and I did some touch up painting on the car and James detailed the
interior afterwards .... boys and their cars !!!
We received some new details of the anti-angiogenesis chemotherapy and it was a little
bothersome. There is a phase II clinical trial of a 5 drug anti-angiogenesis chemotherapy
at Dana Farber. At this point there are two items that are a little disconcerting, the trial lasts for
27 weeks and I am not clear as to whether or not we need to be in Boston for that
entire period of time, at the very least I suspect we would have to take multiple trips
to Boston each week, with many over night stays. The second issue is that this is a clicnal trial, which are considered "experimental" .. ie not an FDA
approved treatment, so I'm not sure whether it will be covered by insurance.
The word of the day is patience ... we are struggling with patience as we wait for news ...
nothing yet concerning James' surgery, radation, insurance coverage ....
Its a funny thing .. James has felt really good the last couple of days, on Sunday he went to a belated High School
graduation party for one of his friends and Monday he had a great time hanging with his brother, playing some
computer games he went to physical therapy and hit some golf balls at the driving range.
Not that I'm superstitious ... but I knew I shouldn't have talked about how good James was doing ...
The last two days have not been good, James has been nauseous, throwing up ... his original back pain has returned and he is back on pain meds.
The waiting continues ... although there has been some news ... there is still no plan.
What we do know is not great, the surgery to remove the two active nodes will be "a pretty large procedure (but not impossible)".
The nodes are located just behind the inferior vena cava (the large vein that carries deoxygenated blood to the heart) and in front of the vertebrae.
Link to September 2006