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October 4, 2002 (Stacey's cousin
Erin)
6:50
A.M. - Mark and Stacey are on their way to L.A. this morning to visit
the neurologist at the City of Hope Bone Marrow Transplant Center this
afternoon. I am staying at their apartment with the girls and Mark
and Stace will return late tomorrow afternoon. Mark had another
MRI done on Wednesday of this week. They don't know much about the
results, however, the doctors did say that some new spots have shown up
again. The doctors here in Phoenix aren't really commenting much
on the results, as they really want to see what the neurologist in L.A.
has to say. Supposedly, he is one of the best in the world and bone
marrow transplant cases are his specialty. Mark's blood pressure
is still low and he is very weak. Please pray that the Lord will
give the neurologist wisdom as he sees Mark this afternoon. Please
also pray for protection and safe traveling mercies for Mark and Stace
this weekend. I will type another update as soon as I hear more.
6:10
P.M. - I just talked to Stacey. She and Mark just got back from the hospital
and are resting at their hotel. She said they are beat! They plan
to go get a bite to eat later. Unfortunately, they don't really
know any more about Mark's condition than they did before meeting with
the doctor today. The neurologist did a very thorough exam of Mark,
took lots of blood work, and did an EEG (which monitors brain activity).
The neurologist wants to review ALL of the MRI slides that Mark has had
up to now, as well as the tests that were done today before commenting.
He plans to talk things over with Dr. Alvanas (sp?) here in Phoenix next
week. Depending on what the neurologist finds, there is a chance
that Mark and Stace will need to go back to L.A. at some point.
Please continue to pray for all of the doctors involved that they will
have wisdom and revelation as they review Mark's case.
October 7, 2002 (Stacey)
This is just a quick update to let you all know we made it
back from L.A. We still don't know anything else from our visit
in L.A. other than there are WAY too many people over there:) We
thought we would have to go to the clinic today, but they want us to come
tomorrow instead so they have a chance to talk with Dr. Openshaw (the
neurologist over in L.A.). This worked out for the best because
I was up all night with Kylie. She is sick and didn't go to school
today. The trip was hard on Mark, but I know he is glad we went.
We were both impressed with the neurologist over there (he spent two hours
with Mark and I). Mark has been in bed since we got back Saturday
evening. He continues to be extremely weak and shaky. I will
let you all know what we find out tomorrow. Please continue to pray
pray pray!
October 8, 2002 (Stacey)
We went to the clinic today and talked with Dr. Alvarnas
about the conclusions the neurologist in L.A. came up with.
They think Mark has a condition called vasculitis (inflammation of the
blood vessels) which can affect people anywhere in the body it just happens
to be in Mark's brain. They are not absolutely certain this is what
Mark has but are going to perform a couple of tests to help determine
that for sure. The first one is an angiogram which basically injects
Mark with a dye in his carotid artery
to help look at the blood vessels in his brain from the small
vessels to the large ones. Last week when they did a MRI they also
did a MRA which takes a closer look at the arteries but they looked fine.
The MRA can only see the large and medium vessels so they are thinking
the vasculitis is affecting his small vessels in which the angiogram will
be able to tell. Now the angiogram can't tell us for certain if
it is actually vasculitis but can tell us if something is going on in
his vessels. Several other conditions can present itself like vasculitis
such as an infection, mold, or fungus so a brain biopsy has to be done.
That is the second test they are going to perform...it will
be able to tell us for sure if it is vasculitis. The brain biopsy
is just like it sounds...they take a small piece of Mark's brain out to
test. The angiogram will be done tomorrow, but we are not sure when
they are going to do the brain biopsy. There is really no know cause
for vasculitis but your immune system can play a part in it and as you
all know Mark's immune system has definitely been altered. They
can't tell us if Mark got this due to the transplant because there is
no way of telling so he basically could of had this condition prior to
the transplant, got this condition because of the transplant, or his donor
could have this condition or be getting it in the future. Vasculitis
is treated by chemotherapy and steroids which hopefully will put you in
remission...it's not curable so you always have a chance of it coming
back. Mark has been on steroids for a long time so I asked them
if they are going to increase his dose now. They said not till they
know for sure he has vasculitis because if it is an infection, mold or
fungus steroids are the opposite of how you treat them
so they contradict each other as far as treatment goes. Vasculitis
could explain why Mark has had so many problems
because it is a changing condition and
can affect different areas of the brain as it changes. Your brain
has many areas that tell your body what to do, for example, how to swallow;
how to keep your blood pressure in check; and how to walk. They
said this could explain why Mark is so weak, shaky and battling with his
blood pressure being so low (also the swallowing problems he had earlier).
They have ordered Ted stockings to help with Mark's blood pressure...these
stockings go on his legs to try and bring his blood up and throughout
his body instead of pooling in his
legs. Mark pretty much feels lousy, and the doctors have agreed
it's time to start doing some tests to get some definite answers instead
of guessing because he is obviously getting worse. Today marks day
188 post transplant in which a majority of them have been spent in the
hospital and feeling pretty lousy. He
is getting tired of not feeling good, and I know a little scared of the
biopsy as well as if the treatment will work. Please continue to
pray for our family.
October 9, 2002 (Stacey)
The angiogram was performed today, and Mark was at the hospital
from 8:30 to 5:30. He had to lay flat for 5 hours after the procedure.
They injected dye into an artery in the groin area instead of the carotid
artery, but I don't know why. Unfortunately
we don't have any answers, everything looked fine in the angiogram so
Mark does not have vaculitis. When I got back to the hospital all
the doctors were gone so I was unable to talk with any
of them but they are to call me tomorrow. Mark said they
are still planning on doing a brain biopsy, but it hasn't been scheduled
yet. He said that whatever the doctor told him today is pretty foggy
because he was pretty sleepy from the procedure.
I do know that the doctors called Dr. Openshaw (the doc in
L.A.) today so hopefully tomorrow I
will know what they are thinking or what the game plan is. Mark
is getting frustrated so please continue to lift him up in prayer.
Thanks and I'll let you all know what I find out tomorrow.
October 10, 2002 (Stacey)
Yesterday I had noticed a few red spots on Mark's back but
didn't really think much about it. Today he had a lot more on his
back and some on his chest and stomach so I called the clinic to tell
them about this and talk about the angiogram
results. When I told them about the spots (some of them look like
blisters) they told us to come in so we did. On top of everything
else Mark now has shingles. They told
us that 30-40% of bone marrow transplant patients get shingles.
Shingles is the chicken pox virus that everyone has if they have ever
had the chicken poxes. It just stays dormant in our bodies and when
your immune system is suppressed like Mark's has it can activate the virus
to come alive. He is contagious so they told us if the girls haven't
had the chicken poxes they will now. Neither of the girls have had
the chicken poxes but both of them have been vaccinated for the chicken
poxes so hopefully they won't get it. Thankfully Mark is not in
pain because shingles typically is very painful. They have started
him on a high dose of acyclovir and another antibiotic. As far as
the angiogram everything looked fine, but Dr. Openshaw is still thinking
it is vasculitis so the brain biopsy will be done to tell us for sure.
It will probably be done early next week. We should have
a date for the biopsy tomorrow, and I will let you all know when we know.
Mark is still feeling about the same.
October 21, 2002 (Linda)
Mark's biopsy is today and he
had to be at the hospital at 5:00 am this morning. His little brother,
Dustin, flew in from Oklahoma and escorted him to the hospital.
Stacey and I are getting ready to go...the biopsy is set for 1:00 pm.
The reason he had to be their so early was that they had to place what
they call a halo on his head. There are four screws that hold it
in place, two in the front forehead and two in the back. Seems painful
to me.
We found out on Friday from the
neuro surgeon that there are five possible things the spots could be:
infection, fungus, lymphoma, vasculitis or tumors. He will stay
awake during the biopsy and we were told of all the risks of this procedure.
We were also told that the results could take any where from one day to
one week to get back.
We are all scare of this...but,
we know that it is past time to find out what is going on with Mark's
head.
Mark is so glad to have his brothers
here with him....they have not all been together since last Thanksgiving.
Really good for this mom to see them together too! Wish his sister
could have came.
We will update as soon as we
know something to report. Mark will spend the night at the hospital
and Stacey plans to stay there with him and hopefully he will get to return
home tomorrow.
October 15, 2002 (Stacey)
Mark's mom (Linda) and his step dad (Keith) flew in Saturday.
It is nice to have more family around. Keith flew back yesterday,
but Linda is still here. The girls are excited especially now since
Mimi (Linda) is staying with us.
Mark hasn't gotten anymore spots since Friday and never experienced pain
with the shingles so I think we have that under control. The girls
haven't gotten the chicken poxes either. We finally found out yesterday
afternoon when Mark is going to have his brain biopsy done. It will
not be done till Monday the 21st because
Mark's doctors only wanted two of the neurosurgeons
on staff at the hospital to do the procedure. The first
one broke her arm and is in a cast so she can't do it. The other
one is gone all week and won't be back until Monday. Mark as well
as I were disappointed because we thought and were hoping it would be
done early this week. I still do not know much about the procedure
or how long he will be in the hospital. Mark is basically feeling
about the same as far as the weakness and shakiness go. Yesterday
he felt pretty good he said but today his stomach is hurting him for some
reason. They are not wanting Mark to come to the clinic this week
since he has shingles and is highly contagious. His blood work has
all been looking good too. They try to keep people away from the
clinic then unless of course something new arises and needs medical treatment.
They also know how hard it is on Mark to get up there so they want him
to save his energy for the biopsy.
October 23, 2002 (Stacey)
Mark came home yesterday from the hospital. Dr. Leiberman
(the neurosurgeon) told us that the sample he collected from Mark's brain
did not look like cancer (Praise God!), and he thinks it is vasculitis.
We will not know for sure for probably a week after the biopsy, but he
did also say that out of all the things it could of been vasculitis would
be the best thing to have. Mark's head was hurting pretty bad where
the screws were put in to hold his halo on his head. Today his head
hasn't hurt as bad (he said around a 6 or 7 on a scale of 10...the two
days prior it was around a 9). They did another MRI on Monday morning
before the biopsy, and Dr. Lieberman said it looked a lot better than
the MRI done on October 2. The
incision on top of Mark's head where they went in is actually larger than
I thought it would be. It is around 2 inches long. Mark did
stay awake during the biopsy, and he said it was very strange to hear
someone drilling through your skull (I can't even imagine...he is a real
trooper). I know Mark is glad to have this biopsy behind him...he
has been through so much. Mark's little brother Dustin flew back
home to Oklahoma today. It meant so much to Mark to have Dustin
here, and we all were so happy to see him. The girls loved having
Uncle Dustin here too so needless to say it was very hard to see him go.
We go back to the clinic on Friday to discuss
treatment or start it if they have the results back. Treatment for
vasculitis is chemo, steroids, and an immuno suppressant drug. Now
Mark is currently taking Prednisone (steroid) and cellcept (immuno suppressant),
but they are talking like his dose of Prednisone will increase and his
immuno suppressant drug will change. They have mentioned putting
Mark back on Prograf! If you guys don't remember, Prograf is what
they thought was causing all Mark's problems back in June when he fell.
They thought the spots in the brain were caused by Prograf and have told
us that they still believe that back then that was the cause of his problems.
I voiced my concerns and they understood and said Mark will have to be
monitored very closely if he is put back on Prograf. Friday I should
get a full explanation of their plan of treatment, and I will let you
all know what we find out on Friday.
October 26, 2002 (Stacey)
We did not go to the hospital yesterday because they still
did not have the results from the biopsy yet. They said one pathologist
said it looked like nothing but they were going to slice into the sample
some more and do further testing. The transplant doctors still think
Mark has vasculitis so hopefully something will be found from the biopsy.
Unfortunately vasculitis has a 25% ratio of getting a false/negative result
from the biopsy which basically means the person has vasculitis it just
didn't show up. Mark has now had diarrhea since Thursday and abdominal
cramping. It got worse last night so I called the clinic this morning.
Dr. A had us come in to check Mark out. They performed a flexible
sigmoidoscopy (a tube passes through the sigmoid part of your colon) to
see what was going on. Mark has had this done before back in July
(at this point it seems like Mark has had just about everything
performed on him). They found out he has colitis (inflammation of
the colon). Mark has been on antibiotics since he had pneumonia
back in September and then stayed on them when he came down with shingles
just to cover all basis. Just the end of last week did Mark get
off the antibiotics. Anyways, antibiotics can cause colitis because
a bacteria called clostridium difficile occurs normally in the intestine
but the presence of antibiotics can cause it to overgrow releasing a powerful
toxin. Mark is on Flagyl to treat the colitis. Dr. A said
it was a good thing he came in because this needs to be treated before
they can start treatment for whatever is going on in his head. They
are really thinking it is vasculitis so please pray that the doctors find
a definite answer. We go back to the clinic on Tuesday to hopefully
find out what Mark has and start treatment. Mark made
the comment today that he feels like he is going backwards through this
whole process, and I know he has days where he wonders if he is ever going
to feel good again. Please continue to lift Mark and our family
up in prayer. Thank you and
I'll keep you all posted on what we find out.
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