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Treatment History
It has been
almost 8 years since Jon died and it seems
like yesterday. We
continue to be haunted by the Beast if only
because of our involvement
with Operation Wardog, but also because of
Tausha's mm and Jamie's
grandmother’s death from melanoma.
Kris, Brion and Dan all have had
dyplastic nevi but only Brion has had WLE
and he has had 2. So far so good. Life goes
on and Sheri and Colter are back in the
United States after being in the UK for 4
yrs. They are living in Tallahassee, FL now.
They were able to be here for Christmas and
we enjoyed that. Enough of that………on to
Jon’s journey with the Beast.
In June of 1998 our 2nd son Jon, who
was a Staff Sgt. in the USMC and was retired
with 100% disability, was diagnosed with
malignant melanoma. His original site was on
top of his head and was removed by a
corpsman who thought it was possibly basal
cell carcinoma. Lab work was sent to
Phoenix, AZ and it was found to be melanoma.
He then went to Balboa Naval Hosp. in San
Diego, Ca. where this diagnosis was
confirmed. He saw Comm. Keefe of ENT who did
the WLE in July of 98. He then had electron
radiation to the site after conferring with
MD Anderson about treatment.
On Dec. 22 he went for a check-up as
he had a node which was hard and swollen in
front of his ear on the left side. The
biopsy indicated that it indeed was the
melanoma again, surgery was performed on Dec
28, to remove all the lymph nodes in the
left side of his head and neck. They removed
22 nodes of which the 2 sentinel nodes were
positive for
MM. They followed surgery up with radiation
again to the head and neck and into the
sub-clavicles on the left side.
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In July of
1999 Jon had a CT scan which showed a
suspicious area in the sub-mandibular area
on the left side. He had surgery on Aug 2 to
remove those nodes which subsequently were
found to be neg. On Aug 31 he had a swollen
node in the right cheek biopsied and it was
also negative for MM. At that time he was on
active duty at Yuma Proving Ground, Yuma, AZ
and saw Comm. Keefe once a month for
check-ups. Radiology and Dermatology every 3
months and liver scans, CT scans, etc every
6 months or as needed.
One year after Jon's surgery to remove the
MM in his Lymph Nodes, on 12-22-99, they
again removed scar tissue and stitches which
had not dissolved from original surgery. He
also had a fine needle biopsy performed on a
node under his chin, at that time there was
no sign of mm.
As of April, 2000 Jon had not had any
reoccurrences and was doing fine. He just
completed a Physical Fitness Test and scored
285 out of 300, in performing pull-ups,
sit-ups and a 2.5 mi run.
In June of 2000, they did a Whole Body CT
scan on Jon, just as a precaution. He wasn't
due for one until the fall, had no symptoms
but the Dr decided to go ahead then instead
of waiting. They found a mass in the spleen,
he had it removed the 28th of June. It was
totally involved and fortunately appeared to
be encapsulated. While in surgery the Drs
checked everything else out and there were
no signs of any further Melanoma. He did
fight infections in the abdomen for several
months and one lung also. They put drainage
tubes in and he finally had them removed
about 5 weeks later. At the time all scans
show no evidence of disease, including a PET
scan taken Friday, the 8th of Sept. Further
treatment was up in the air, we were hoping
for them to do the McClay bio-chemo regimen
and were just waiting on the new oncologist
to see him.
On Oct. 23rd they did a CT scan, and on the
25th Jon saw Dr McClay at UCSD. Dr McClay
examined him and said that the McClay
therapy would give him about a 55% chance,
he warned him of the seriousness of his
condition but appeared optimistic. Jon
started the treatment on Sunday the 29th,
they did find a possible bone mets in the
pelvis but were going to watch it.
Dec. 18, 2000-Jon had completed a 3rd cycle
of the McClay regimen at that time. He had
scans just prior to starting this cycle and
the areas in the subclavicles and the lungs
were clear. The area in the pelvis was still
there but had not grown. The 2nd cycle of
bio-chemo was rough but the 3rd time seemed
to go a little better. Mainly
nausea and fatigue, no vomiting like last
time. He had 1 liter of fluids IV this time
compared to 3 last. So improvement was at
hand.
As of the middle of January, Jon had
completed all 4 cycles of the McClay
regimen, he did ok although dehydration was
a battle all the way through. He saw Dr
McClay at the end of Jan and he was very
positive about there being other things to
try. DTIC, Dartmouth, Vaccine, if he is
HLA-2, or even possibly a stem cell
transplant. At least, he gave him HOPE.
On Feb. 7 he started Temador, in a pill
form, which is new. He takes1 pill a day for
5 days. Scans will be done later to see if
it has helped with the pelvic bone mets. The
tests came back that he is HLA-2 negative
which rules out many of the vaccines.
March 2, 2001 Jon was officially retired
from the USMC-he was considered 100%
disabled due to the Stg IV diagnosis. They
moved back to Nebraska and bought a home in
Gibbon. He saw Dr Geo Bascom who is under
the direction of Dr Luiken at Naval
Medical Center in San Diego and also Dr
McClay at UCSD.
On Friday, March 30, Jon had scans done in
Kearney. They revealed that the pelvic mets
was still there and indeed it was protruding
into the muscle. He had an appointment on
Monday, April 9. to consult with the
Radiologist as to whether radiation might
minimize the mets. Jon completed 10 days of
radiation therapy, in hopes that it would
shrink the melanoma, at the least. The
lesion appears to be
approximately 2.8cm x 3.8cm in his pelvis.
They will redo scans in 30 days. Scans were
redone and there was no change in the bone
mets, although the good news is that he had
no mets elsewhere either.
Now it is just a matter of figuring out what
to do next, he has calls in to his Doc in
San Diego who will contact Dr McClay, we
hoped. The Docs here kind of want to wait
and see, WAIT FOR WHAT? Sorry. He Wanted to
continue some kind of treatment as he felt
the melanoma was lurking in
there..........so we looked. Surprise! The
Docs in
Kearney, Ne found a surgeon in Omaha, Ne who
was willing to try to remove the bone mets.
On Aug. 15th they removed a DEAD tumor. Dr
McGwire removed it and did a bone graft. We
are now waiting on the path report. The Path
report came back that it was mm, being
poorly differentiated. His recovery had been
slowed by fluid build-up but he did well.
On Sept. 11, while New York City was going
down in flames, Jon went into the
ER at Kearney for a severe headache. He had
an emergency MRI which showed 4 lesions in
the brain, he had the first treatment
several hours later. They are doing whole
brain radiation and it will consist of 10
treatments. On Oct 2 he had a whole body CT
scan and a bone scan, we should know more on
the 5th. The scans in Oct. came back clean
as did the MRI in Dec. The tumors showed no
growth then.
Jan 22, 2002 the scans showed there was
growth in the brain tumors and in the number
of tumors. We were looking at gamma knife.
Also, he has areas in the chest that were
fishy. They are listed as being: left apical
scarring; meidastinal L hilar
lymphadenopathy; mesenteric adenopathy; and
left iliac lesion increased-the one they
removed.
On Friday, the 26 of January we saw the
Neurosurgeon in Lincoln, Ne about doing
gamma knife. He was willing to remove the
larger tumor and will go off protocol to do
the other 9 with the gamma knife. Come to
find out he is a Commander in the Navy and
was at Balboa Naval Hosp till 3 yrs ago.
Talk about strange situations-Jon's
oncologist was a friend of his onco at
Balboa now this surgeon had connections
there
as well. And we live in NEBRASKA.
Jon had brain surgery on February 6, 2002-it
took 2 1/2 hours and went beautifully. The
Doc said it was a typical mm tumor, very
bloody and vascular but they were able to
get all of it. Within a half hour he was
feeling better then he had in months due to
the pressure being removed from the brain.
On the 21st he goes into Lincoln for gamma
knife. We went to Lincoln and proceeded to
go into shock.....they found 34 lesions on
the new MRI-Jon opted for gamma knife to go
ahead and remove as many as possible,
knowing it was off protocol and no one knew
what might happen. He had 15 removed that
day, we went back on Thursday the 28th-new
MRI and NO NEW LESIONS. Praise God. He had
15 more removed-with the last ones scheduled
to be done the 5th of March, again if there
were no new lesions. They are looking at
Temador and Thallidomide to take to slow
things down and also his hemoglobin is down
and they started procrit on Fri. Jon had a
total of 56 lesions removed with Gamma
knife. At the very least it bought us time.
Jon ended up in the hospital several times
after the brain surgery and began having
Grand Mal seizures. His Dilantin level was
very low and they discovered he was not
assimilating his meds properly. He was then
started on IV meds due to the fact that the
tumors in the abdomen were growing. They
were wrapped around the mesentery artery and
ultimately took his life. Jon was home with
us with the help of Hospice the last 2 weeks
and we were able to keep him as comfortable
as possible but it was a very difficult
time.
On May 18th at 12:11 pm Jon lost his battle
with the Beast as we call melanoma but he
won the war as he went on to be with his
Lord and Savior and to see his triplet sons
who preceded him in death in September of
1995. He fought long and hard but ultimately
his body was destroyed by the Beast. |
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