Days 914 - 916
Saturday - Monday, July 1st - 3rd 2006
Days 917 - 919
Tuesday - Thursday, July 4th - 6th 2006
Days 920 - 923
Friday - Monday, July 7th - 10th 2006
Days 924 - 925
Tuesday and Wednesday, July 11h - 12th 2006
Days 926 - 930
Thursday - Monday, July 13th - 17th 2006
Days 931 - 935
Tuesday - Saturday, July 18th - 22nd 2006
Days 936 - 938
Sunday - Tuesday, July 23rd - 25th 2006
Day 939
Wednesday, July 26th 2006
Day 940
Thursday, July 27th 2006
Days 941 - 942
Friday and Saturday, July 28 & 29th 2006
Day 943
Sunday, July 30th 2006
Day 944
Monday, July 31st 2006
Wow !! ... what a great way to start the month.
On Saturday, James, Aaron, my Dad and myself played golf at Rocky Ridge.
I was a little nervous every time James swung a club wondering how his back would hold up
but luckily it never bothered him. It certainly didn't effect his game as
he played great beating his dad and Grandfather shooting a 77. As good as James' round was .. it was only good for the second best score of the day as Aaron
shot a career best 68 (4 under par).
Saturday night was the start of the big celebration weekend .. a surprise party for my parents 50th
wedding aniversary and my dads 70th birthday. The party was held at the ECHO center on the waterfront
in Burlington. The weather was perfect, the party was a complete surprise, the location was
beautiful, and best of all was all of special guests, it was a wonderful time ... kudo's to my sister Debbie
for pulling off such a special event.
Sunday the fun continued with James' graduation party. We were again fortunate with the weather
and really blessed with having so many friends and family together to celebrate a special and positive
event in James' life.
Monday was another beautiful day, we had a family golf outing, picnic, putting contest and poker game.
We were really lucky that James felt pretty good for most of the weekend.
Monday was not a great day as he had stomach cramps and was a little nauseous most of the day,
not a wonderful thing, but all things considered I think we were pretty lucky.
What a pain ... On Monday Pam went to fill a prescription for James and was told the insurance for it was denied. After some phone calls I found out that
James' coverage expired on June 30th .. no notice no warning .. its just gone.
I was told I needed to file for a disability waiver .. it would then be reviewed by the medical director (which could take weeks), until then I'd have
to pay out of pocket. Arrgg !!! I spend Wednesday running forms to the hospital, sending out emails and making phone calls.
As mad as I was at the insurance company (dropping James with no notification and causing us additional stress for 3 days) they responded well and we had James
re-instated by Wednesday afternoon.
Timing is everything, it looks like we were very lucky with James feeling good this past weekend. On Tuesday
he had a pretty bad day, he woke up nauseous, took his meds and went back to bed. In the afternoon
he went to a barbecue to visit with some of Pam's family, he felt "ok" at the begining but became
nauseous again by the end. Symptoms continued to get worse as the night progressed, his kidney started to hurt
and he became very light headed. At one point he fell to the ground in the living rom and could
not get back up.
Wednesday morning he still was a little light headed and had a headache after a restless nights sleep.
It was a better day than Tuesday but he's still not 100%. He went for a short walk with Pam during the afternoon (he need to stop half way to sit down)
and had his labs done (they look "decent").
He had a good nights sleep Wednesday night and except for a headache, he felt much better. We went to the Verizon
store and James picked out a new phone (Graduation present), he spent most of the afternoon figuring out all the
things it could do and loading it up with music. Thursday night he went to the new Superman movie with his friend Davin.
He enjoyed the movie and is back to feeling good ... hopefully it will last through the weekend.
The streak of good days continues ... James has felt pretty good the last few days and the timing couldn't be better.
My parents are still in town and he has had (as we all have) a great time visiting with them. The other night we all
played some Texas Hold'em poker, James' has been out to eat a few times and on Monday he played golf with Dad, Aaron and our friend Cliff Barlow.
James' effort to exercise has had a bit of a set back as his knees are starting to bother him.
After his walks, which have increased in length, both knees really hurt just below knee cap.
He had a bad case of Osgood-Sclatter disease when he was younger and the pain seems to be right on top
of the O/S bumps.
Beside's the knee issue, James has had a pretty good couple of days .. or should I say nights.
He's been out with friends the last two nights ... out late .. and having fun ...
Tomorrow starts another 5 week chemo cycle (the first week of each cycle includes and extra chemo drug)
hopefully thing go well and he can continue enjoying the nice summer weather.
Thursday was the start of a new chemo cycle which means an extra chemo drug each morning for 5 days.
The drug, Temodar, needs to be taken first thing each morning on an empty stomach, we wake James early, give him the drug and then
let him go back to sleep. With James' "hospital" chemo scheduled for 1:00pm, Pam and I headed for work.
At 10:00am I got a call from James asking me to come home .. he was feeling aweful and had already been sick three times ...
and his hospital chemo was still to come. Fortunately the 4 hrs hospital chemo went pretty well, I knew James
was feeling better when he asked me to go the cafeteria and get him some food.
Friday, Saturday and Sunday were much better days. On Friday James was able to go for a walk,
drive Aaron back and forth to the golf course and basketball, all in all a pretty good day. Saturday
morning was another rough morning, James was feeling pretty nauseous ... but never got sick.
By the afternoon he was feeling better, he went for walk and then Saturday night Pam, James and I
enjoyed James' air conditioned room and watched King Kong.
Sunday was James' best day, he played some golf, visited his aunt Colleen, cleaned up the house,
he felt good all day !!!
Monday ... Monday was not such a great day ... James was nauseous for most of the day, we were hoping
he was going to be able to drive Aaron the golf course but when he was lying in bed and asked Aaron
if the room was spinning we kinda knew that wasn't going to happen. James did a great job and took everything in stride,
"yup I know this will pass, I just have to ride it out", it was a great additude and sure enough, by late afternoon he was feeling better.
Hopefully the issues James is having in the morning and early afternoon are related to the Temodar, which he
is done taking, and he'll have a better week.
On Tuesday, James woke up with a headache after another restless nights sleep ... by midafternoon was feeling better
and decided to vacume and clean the house. Tuesday night he went out to eat with Pam at Breakwaters, a neat place right on the waters of Lake Champlain.
James ran into one of his classmates from High School, Blaise Cote, and talked with him a bit. After a nice meal they got a special
surprise ... Blaise had picked up the tab .. a wonderful and thoughful gesture, especially from someone so young.
James' back had stiffened up a bit Tuesday night and was really bothering him Wednesday morning. While he
was at the hospital for his weekly blood work the pain got much worse, to the point of needing assistance from the ER.
It was, as usual, a long and "painful" experience, they gave him a shot of Diloted in the butt,
then accessed his port and ran some more pain killers via an IV. After some Ativan and muscle relaxants, the pain
became tolerable and James and Pam were on thier way home.
Thursday was chemo day, it all went surprisingly good considering James' back was still hurting. James had a few
friends stop by and they had some pizza in "the tent" for dinner.
Friday and Saturday were pretty much the same, James is still hurting, taking a ton of meds, trying to get
some relief from the back pain. He as an appointment on Monday to start physical therapy, hopefully
this will fix what ever is going on with his back and help him get stronger to prevent this from happening again.
Kudo's to Pam as she bore the brunt of this weeks trials as Aaron and I were in Boston for the 2006 Westfield Junior PGA New England Section Championship.
Aaron won of a local qualifing tournament back in June at Okemo Vermont,
one of 6 held across New England, to advance to this Section Championship.
Aaron had a very respectable tournament, there were 68 players that made it through to this stage of the tournament and he finished 17th,
with rounds of 77 - 76, finishing 8 shots behind the winner.
After 2 1/2 years of chemotherapy and countless days laying in a hosptial bed, James' body
has slowy ... lets just say ... "gone a little south". Monday was the "first day of the rest of his life",
it was very impressive, he was eating fruits and vegetables, he started physical therapy (is scheduled
,for 3 visitis a week) ... it was awesome. Monday night he went to a friends Apartment warming party,
came home a bit late but had a great time.
On Tuesday James continued with his new diet (a record 2 days in a row), he called Pam and I a couple of times
at work just to say "hi", picked Aaron up at the golf course, went to Bestbuy for a little window shopping, he was basically having
a great day. A little tired, James went to take a little nap before dinner ... then Bam !!! James tweaked his back rolling over in bed and couldn't move.
It was back to the "Pettine Pharmacy" ... and we loaded him up ... after a couple of hours he was finally able to get out of bed
and have something to eat.
You would think that by now we would
be "conditioned" for these huge swings of ups and downs .. its actually just the opposite ... we so desperately want to get back
to being "normal" that when we have these "bumps in the road" its a major drain on our heart and soul, gosh this is getting old !
At 10:00am I got a call from James ... he said he was really hurting and needed help.
When I got home he was in bed, his legs shaking, his pillow over his face, the pain
in his back was "insane" and he couldn't move. An hour or so after I gave him some meds
he asked to be brought to the ER, he wanted relief from the pain. We've been through the ER drill enough
to know that it can be a very slow process ... I asked him to have some faith, that we had
enough meds at home and that we would get him better.
It was a long and trying day, he never really got to the point of feeling "good".
Besides missing his physical therapy appointment, we now have to decide wether we should reschedule Friday's
meeting at Dana Farber. We supposed to meet with James doctors and the Stem Cell Transplant director
to discuss possible future treatments.
Thursday's start to the day was very similar to Wednesday, I got a call from James, he was not doing very well.
We tried our best to get him comfortable but couldn't get the job done. By early evening James
had had enough and we headed to the ER. With some IV pain meds they were able to get his pain under control.
Around 3:30am, after 3 hrs of drinking some yuky contrast, James had a CT scan of his abdomen.
There appeared to be no issues with tumors resurfacing, however, his left Urerter was enlarged
preventing his left kidney from competley draining. James was admitted for the night.
James now has a couple of issues, a dilated ureter causing hydronephrosis of the kidney, urinary retention and back pain.
The big question ... are they related and if so ... how ? The initial call by the urologist
was to "go in", take a look around with a camera and then insert a Ureteral stent. After a long
discussion we decided not to rush into it (Friday afternoon emergency surgery). In the mean time James will have an MRI of his spine
in the hope that that will shed some light on why his back hurts. It was a crazy day, James had not eaten all day in anticipation of the surgery,
once he found out he wasn't having surgery he wanted to eat but was told he couldn't since he was scheduled for an MRI ...
this made no sense ... after some checking he was finally given the ok to eat. The MRI, which can sometimes
give people problems with claustrophobia went well.
Saturday morning we got the MRI results ... good news .. bad news ... the MRI was negative,
everyting looked normal. This was certainly good news as we certainly didn't want to see a slipped disk
or pinched nerve, but on the same hand we still don't know what the source of James' pain.
James had a pretty good day on Saturday, Pam visited him in the morning, Aaron and I spent some time with
him in the afternoon and brought him some lunch and then Pam made him dinner and I brought it up to him.
Each time we visited we went for a walk so he's doing better. Hopefully we can start putting the puzzle pieces together
and get him home either Sunday or Monday.
Sunday was a beautiful day, sunny, low humidity and temps in the 80's.
I brought James breakfast, afterwards we went outside for a nice walk.
On my way home I stopped at Costco, Pam was cleaning the house and doing laundry.
After lunch Pam and I shopped for some perenials and then played 9 holes. Pam and Aaron
took James some dinner and went for another walk with him.
It was a tough day trying to balance having a son in the hospital and having a life.
As much as Pam and I tried to enjoy the day, it just didn't happen.
No matter what we were doing our thoughts were interupted with thoughts of James.
This hospital thing is getting old once again, the mess-ups, miscommunications, not knowing
whats going on ... its starting to wear on us all. I can't imagine how James is coping with it.
Its been 6 days in the hosptial and James is no better today than when he went in last Wednesday.
The testing has provided a mixed bag of results, nothing conlcusive to either completely rule
out or pin point why he is having the problems that he has. Although his physical pain
is being managed, he is becoming depressed and suffering mentally. Pam and I are both begining
to crack ... its really starting to suck stink !
Link to August 2006