A Daily Journal of James' Battle Through Life.
Our son James has been dealt some rotten cards and has experienced more than his share
of suffering. His display of strength and perseverance over the last 26 months is quite extraordinary,
we are extremely proud of the way he countinues to "battle through life".
The overwhelming support that James and our entire
family has received from our friends, co-workers and acquaintances, those "friends of a friend"
is remarkable, and has made a lasting impact on us all.
This web page is intended to help keep all of James' well wishers uptodate with his progress.
Background :
James, an avid skier, developed a nagging back pain following
a fall while skiing in December of his junior year of High School.
The pain continued to increase and by early January he was no longer able to attend school.
Over the next three months he would have an assortment of tests, be evaluated by Chiropractors, Physical Therapists,
Orthopedic Surgeons and Pain Management Specialists. By late March the pain was unbearable
and James was suffering terribly, both physically and mentally, he would go days without any sleep, he was losing weight
and nobody had any answers. In late April, through an unusal sequence of events, a tumor was found
in James bladder, a biopsy was performed and on May 4th he was diagnosed with
Anaplastic Large Cell Lymphoma (ALCL) .
James started his Induction Chemotherapy on May 16th, a shortime
later his back pain went away.
By early June he was able to return to work, a cashier at a local grocery store, played a little golf, did "normal things",
life was good again.
His Induction Phase of Chemo concluded in late June, he had another series of tests, everything was going as scheduled.
He started the Consolidation Phase of Chemo on June 24th.
In late July, James' back pain started to bother him again, but only occasionally.
By mid August the pain was increasing in both frequency and intensity, to help manage the pain he started taking Oxycontin and Oxycodone.
James had another series of tests on Aug 26th, the results showed "increased activity".
A biospy was done on Sept 1st, the results indicated recurrent cancer.
On Sept 21st James started ICE (Ifosfamide, Carboplatin, Etoposide) chemotherapy, a more aggresive form of Chemo, and plans got underway
for James to go to The Dana Farber Cancer Institute in Boston for
"High Dose Chemotherapy with Stem Cell Rescue" more commonly known as a Stem Cell Transplant.
On October 8th we recieved some very disturbing news, there was a concern that
original diagnosis was incorrect, and that James may have Angiosarcoma, not ALCL.
Since the treatment for these two cancers is completely different a definitive diagnosis was essential.
The decision was made to stop the current chemo regimen and perform another biopsy.
On November 5th, at Childrens Hosptial in Boston, James had his 4th and most invasive Biopsy.
The results were again inconclusive, the Chemotherapy that James had undergone had
effected the cancer is such a way that a definitive diagnosis would not be possible.
The recommendation was made to "do nothing", stop all treatments and let the cancer return,
once this happened they would do yet another biopsy with the hope of a positive diagnosis.
Waiting 6-8 weeks for cancer to return to your body is tough for anyone to handle,
but to be suffering with pain while you wait makes it very sad and unreasonable situation.
Waiting for the cancer to return took much longer than anticipated, it was 6 long months, not weeks,
before testing revealed a tumor large enough to biospy. Unfortunately, after the June 17th biopsy, and subsequent
pathology (from 4 sources, many of them considered experts, Childrens Hosptial Boston, Brighams and Womens in Boston, Sloan Kettering in New York and NIH/NCI in Bethesda Maryland)
we still did not have a definitive diagnosis. None of the pathology reports agreed with each other as to the exact type of cancer.
On August 16th 2005, James' would start treaments targeted at an unspecified type of cancer.
James was in the hospital for much of August and September (39 of 47 days) due to complications to the first two rounds of the chemotherapy (ICE).
It all seemed worth it as the test results were "very encouraging". Due to the favorable response he would recieve
two more cycles of the ICE , administered here at FAHC. The toxic drugs continued
to beat on James' body, complications, pain and anguish persisted, another 35 days in the hospital.
The subsequent PET test results were numbing, there was little change, if anything there was a slight increase in the PET activity. The last two rounds of Chemo, two months of suffering, was all for naught
It was now mid December, the decision was made to wait until after the holidays to give James a chance to recover and enjoy some time at home
before resumming another new chemotherapy protcol.
On Jan 5th 2006, after two surgeries, one to replace his Ureter Stent and another to replace his port, James started a chemotherapy regimen consisting of Gemcitabine and Docetaxel.
Although there were some early issues with pain control, the chemo treatments were pretty well tolerated.
James was able to resume classes, the first time in over a year, with the hope of finishing High School.
PET and CT scans done at Dana Farber in early February were again very disappointing, although there
was some area's of improvement, other areas had gotten worse.
James started another new regimen of Chemotherapy (Irinotecan and Vincristin) on March 9th 2006.
A CT scan done after the first 5 week cycle was very positive, a second set of scans (PET and CT)
were done in May and the results continued to be impressive. It was decided to continue with the treatments
for two more 5 week cycles, skip the next set of scans and re-evaluate in August.
The scans in August were very unexpected and very disappointing, a subsequent biopsy confirmed the
test results, the cancer had recurred and James has suffered another setback.
After talking with the doctors here in Vermont and at Dana Farber in Boston it was decided that the next
form of treatment would be radiation. The goal was to treat any area that had once been PET active,
an aggressive approach that encompasses a fairly large area. The radiation started on September 25, 2006
and will run 5 days a week through November 1st.
The radiation treatments were very unkind to James, due to the large field of radiation James struggled with
nausea and extreme problems with his bowels, it was a very uncomfortable 6 weeks. Two weeks after his last
radiation treatment, while on vacation visiting his grand parents in Florida, James was rushed to Tampa
General Hospital with internal bleeding, he would never again regain consciousness. Our beloved James
passed away December 1st, 2006, 19 days before his 20th birthday.
Click on a date to view that days entry.
| ... |
Overnight in Hospital (FAHC) |
| ... |
Overnight in Hospital (Boston/Tampa) |
| ... |
Surgery - Stent or Port Exchange |
| ... |
Surgery - Biopsy |
| ... |
Tests in Boston or FAHC (PET & CT) |
| 2004 |
|
|
|
|
|
|
| ... |
Overnight in Hospital (FAHC) |
| ... |
Overnight in Hospital (Boston) |
| ... |
Surgery - Stent Exchange |
| ... |
Surgery - Biopsy |
| ... |
Tests in Boston (PET & CT) |
Some photos of James :
A bit dated but some of my favorites of James from 1999'
The day James initially hurt his back, skiing some deep powder
Memorial Day cookout.
Tired and bothered by his hair falling out, James goes bald
The boys checking out the sunset of Lake Champlain
June 24th, accessing James' port .. Day 1 of his consolidation phase
June 24th, receiving the Doxorubicin thru his port
June 24th, All done .. waiting to go home
July 4th Tubing at Lake Eden
July 4th Tubing at Lake Eden
Aug 10th at Camp Takumta
Labor Day Lobsterfest - James
Labor Day Lobsterfest - Aaron
Aaron getting his blood tested to see if he is a possible donor match
Sept 23rd, James getting "out" after many days in his hospital room
Sept 29th, James getting the news that his wish has been approved
Sept 29th, James with his ballons
Oct 19th .. in lots of discomfort by he still has his priorities .. go Redsox (Game 6)
Nov 22nd .. James feeling good, playing computer games with Aaron
2005 SBHS Winter Ball
James' Wish - The Ultimate Bedroom
Pics from out February Vacation in Florida
Feb 27, James in the lodge, excited to get skiing
A beautiful, but cold day, FIS in the background
The view from the top, New York in the background
Another view from the top
Ah ... nothing like some hot chocolate after skiing
Pics of summer 2005 ... Memorial Day - July 4th
James' last round of golf before starting chemo
"Underwater" snorkeling Pictures
James having his Thanksgiving dinner in the hospital
Back to James' Main Page
