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June 2, 2002
The hospital called Stacey at 5:30 AM and told her to come to the hospital.
They had found Mark passed out in the bathroom. He had hit his head
and had lost a large amount of blood. A cat scan was performed and
there was bleeding in the brain. A neurosurgeon has been called
in and Mark is now in ICU and we aren't clear what the plan is and will
update as soon as we know. Please say an extra prayer for Mark today...
11:20 p.m.
Mark is still in ICU where they are closely monitoring him.
He has a goose egg on the right side of his forehead and a two inch gash
above his right eye. He did get stitches to close up the gash and
his right eye is black, purple and swollen shut. The cat scan showed a
2cm bleed in the brain. The neurosurgeon said that was relatively
small and minimal swelling. Mark's platelet count at the time of
the fall was 27 which is very low (platelets help your blood clot) so
he has received 4 units of platelets today and will continue to receive
platelets to keep his level above 50. His platelet count is currently
57. They will perform another cat scan tomorrow morning to make
sure the bleed on his brain has not gotten any worse. Mark was combative
and agitated this morning so he has been in restraints to keep him from
getting up. He is conscious but in a stupor. He is not responding
to commands and has not been able to verbalize anything yet. He
has nodded his head a couple of times when asked if he was in pain.
They said that every individual is different in the way they recover from
this type of injury and right now it is a waiting game.
June 4, 2002
This will be a brief update since I'm heading
up to the hospital right now. Yesterday the cat scan did show that
the bleed had gotten larger so they continued to give him platelets (they
are now trying to get his platelet count up to 75-100 but have been unable
to do that thus this far). They also did an EEG (test his brain
waves) and a MRI yesterday. We don't know the results of the EEG
yet (they are looking for seizure activity) but the MRI did show 3 other
abnormal spots in Mark's brain. We don't know what this means yet...a
neurologist will see him today (this is someone different than the
neurosurgeon). It could be a number of things such as an infection,
fungus, other blood spots etc. Also a virus called CMV has
shown up in Mark's system but I'm still pretty foggy on what that is (my
brain is overloaded right now). Mark has not changed...he is still
unable to speak and not following commands. Please continue to lift
Mark up in prayer and our family.
5:20 p.m.
First off I have to tell you what I walked into this morning.
I walked into Mark's room and he looked at me and I said "Hi" and I got
a smile. Next, I said "I love you" and Mark said "I love you
too!" WOW! I couldn't believe my ears...I just cried with
joy. I saw his nurse and he told me that Mark started to talk around
5:00 this morning. The neurologist came by this morning and did
an assessment. Mark was able to follow some commands and answer
most of the questions he was asked. Mark doesn't remember anything
about the fall or the last couple of days. After the assessment,
the neurologist said he wanted to go look at the MRI and he would be back.
He came back later this afternoon and told us that Mark has 6 abnormal
spots in his brain other than the bleed on the right side. He doesn't
think the other spots are bleeds but some type of virus or infection.
They are doing a spinal tap right now to see if any virus or infection
shows up. The only way to tell for sure what the spots are is by
doing a biopsy which they are not wanting to do since Mark's body is not
really up to a surgical procedure due to the transplant. There is
still a possibility that the problem is his prograf level being to high.
Some of the results from the spinal tap won't be back until next week
but hopefully most of them will be back this week. Mark's coordination
is still not normal and his speech is a little slow as well as his thinking
process. When speaking to Mark you have to keep things very simple
or he gets confused. Right now it is still a waiting game.
June 6, 2002
Things with Mark are about the same as
he is still talking and able to follow some commands. Last night he did
have some hallucinations so I will speak to the doctors today about that.
We don't know all the results of the spinal tap but so far the ones we
do have back are negative. I get really confused sometimes since we are
dealing with a lot of doctors. The neurologists said there were abnormalities
but the transplant doctor says everything is negative so far. We really
don't know anymore still, but they are going to do another MRI tomorrow
to see if the spots have gotten smaller or larger or increased in numbers.
They are still thinking that it is either an infection in the brain or
his prograf levels are too high. I want to share a poem with everyone
that my cousin Erin gave me that a friend of hers wrote for Mark. This
friend doesn't even know Mark personally but the poem is Awesome. The
friend's name is Ryan Brase....
In a world of Darkness. There's a guiding light. Some question His motives.
But He's always right. God is in control. That's easy to say. But where's
He at. When it's not going our way. We see the sickness. We feel the pain
.We long for the sun. Will He stop the rain .The despair seems endless.
Prayer seems trite. It is in this sorrow. That we can't lose sight. God
has His plan. Entirely divine. Yet we ask for an answer. We beg for a
sign. We want to know. That He's always there. But there are times when
we think. It just isn't fair. Why Him? Why so much? When you could ease
the pain. With one simple touch. We now must trust. That God knows best.
He's there forever. He'll take care of the rest.
June 8, 2002 (by Linda)
Mark was moved this afternoon from
ICU back to the Bone Marrow transplant unit on the 12th floor. Mark is
quite happy about the move, as the care is more specialized, and the environment
is super-sterile as required by bone marrow transplant patients. He continues
to slowly improve, although medically nothing has changed significantly.
His WBC was 2.2 and his platelets are down to 37 even though platelets
have been given to him every day. The doctors, however, tell us that this
is not surprising if Mark's problems are being caused by the CMV (virus)
as it is known to be a platelet eater. His spinal tap definitely was abnormal,
however they haven't been able to pin point the exact cause. The initial
report showed white blood cells, protein and blood in the fluid. Viral
Meningitis (?), apparently, has been ruled out....the test results for
that returned today and were negative.
Yesterday's MRI showed no change on the
spots and did indicate a very small additional bleed. Many tests are being
run and the City of Hope's Los Angeles, CA medical team and his team of
doctors here have had several teleconferences about Mark's symptoms. A
logistical problem is that some of the tests take about a week to get
results, so surely by Tuesday we will have some kind of knowledge about
what is causing the spots on his brain -- infection or medication. They
have determined that the first bleed is probably what caused him to pass
out and fall...the fall is not the cause of the brain spots but a result
of them.
Mark did display a little of his sense
of humor today and watched some of the Diamondback's ball game while sitting
on the bed-side eating three-forth's of a grilled cheese sandwich for
lunch, one of his old time favorites! It was good to see him smile. Also,
it is surely good that he wants to eat as his weight is down to 162 lbs.
He is weak, but is able to get out of bed for brief periods. The catheter
is gone, for which he is very thankful. He is making progress, but the
difficulty of his medical situation is now quite apparent to us all. Thank
goodness for great friends and great support.
June 10, 2002 (by Linda)
Mark showed no change from yesterday
except that his head hurt a lot worse than it has been. The doctor says
that they still have not pin pointed the problem as all tests so far have
come back negative. He did walk around the nurses station again today
with help. His balance is still off slightly. A biopsy has not been done
yet because of Mark's lack of immune system and I suppose they will only
do one if the spots get any bigger and an answer isn't found.
Hopefully we will know more tomorrow.
June 12, 2002
(by Linda)
Mark continues to have a severe headache...the doctors feel it is from
the spinal tap however, I am not convinced. They still have not found
the cause of the spots on the brain as all the tests have came back negative.
Wish there was something more to report but right now it is just a wait
and see game. Keep the prayers going as they are so needed.
June 16, 2002
Happy Father's Day everyone! Mark
got to come home from the hospital last night (yeah!). He still
has a headache but they sent him home on two types of morphine in pill
form. We still do not know anything more about the spots in the
brain but another MRI will be done sometime next week. Mark goes
to the hospital tomorrow morning as an outpatient, and we should find
out what our schedule will be like. Hopefully after the next MRI
is done we will have some answers but until then we just wait. I
want to thank everyone for all the thoughts, prayers and calls (even
if I never got to talk to you...I literally was living up at the hospital).
June 17, 2002
We just got back from the hospital for
Mark's treatments. He is still experiencing a headache which ranges
from a 4 to a 7 on a scale of 1 to 10. They have increased his long
acting morphine to maybe help control his pain better. Mark has
not been sleeping well at night and has been very restless (needless to
say neither am I:)). His next MRI has been scheduled for Friday
and the doctor is real anxious to see the results as well as I.
His schedule as outpatient for this week is Monday, Wednesday, and Friday.
June 18, 2002
Mark still is not sleeping at night so
we got a prescription filled today to help him sleep and his headache
got pretty bad too. His blood cultures still showed CMV present
but they thought it was improving. He is now taking acyclovir again.
I just thought I would fill everyone in on our family life events the
past couple of weeks. The last time Mark was admitted to the hospital
on May 26th my parents had left the day before after being here for almost
3 weeks so there were a couple of days I was unable to see Mark but between
my cousin Erin and my aunt and uncle (Ann and Dick) and our church offering
to pay for someone to baby-sit the girls I was able to be with Mark.
The Sunday morning (June 2nd) the hospital called to tell me about Mark's
fall I called my aunt and uncle to come stay with the girls so I could
go up to the hospital and my cousin drove me up to the hospital because
I was in no condition to drive. My cousin stayed with me all day
and night up at the hospital (thank you Erin...I love you!) and my uncle
came up later and stayed with me all day too (thank you Dick and Ann...I
love you guys too!). Mark's mom flew in Sunday night and got up
to the hospital about 9:15. My sister and her two boys (Trent and
Caden...also my dear sweet nephews) left Inman, Kansas which is about
17 hours away from Phoenix at about 5:15 p.m. on Sunday to come help me
with the girls and give me emotional support. They made it to Phoenix
at about 2:30 p.m. on Monday (what a woman!) Mark's older brother
Brian also left on Monday to drive down here and did it straight through
and got here about 9:30 p.m. that night. My sister Kim stayed with
the kids while I spent all my time up at the hospital so needless to say
this wasn't your typical vacation, and I really didn't get to see them
much (thank you Kim, Trent, and Caden...I love you guys with all my heart!)
A friend from church and her kids with her sister came down a couple of
nights to watch the kids so Kim could go up and see Mark. I guess
my nephew Caden asked Kim if Stacey ever stays home and Trent ask if they
were ever going to see Mark or Stacey. Well that Friday since they
were leaving the next day-Kim, Trent, Caden, Kylie and Kenzie all got
to go up to the hospital in ICU to see Mark and tell him goodbye (I know
the hospital staff wasn't too thrilled about that!). My sister took
the girls back to Kansas with her (what a brave woman to drive halfway
across the U.S. with a 2 year old, a 5 year old, a 6 year old and a 14
year old...thank you!). Well now our girls have been staying with
my parents since June 9th and having a blast (thank you Mom and Dad...I
love you both very much!). Our oldest (Kylie) got to attend vacation
bible school at our old church the first week she was there and now attending
another vacation bible school at my parents church this week. Our youngest
(Kenzie) is just going with the flow and having so much fun too.
I think this has been harder on Mark and I than the girls, but we decided
it was for the best that they be up there with family until we have a
better idea of what is going on with Mark. This way I am able to
be there for Mark 100%. Mark's older brother drove back to Kansas
on Monday, June 10th (thanks for being here Bri...we love you too!), and
Mark's mom and step dad (he got here on Tuesday, June 4th) left
on Sunday June 16th to go back to Kansas as well (thank you both for being
here...we love you both bunches!) Hopefully after Friday when they
do the MRI we will have some answers so we can plan on getting the girls
back here. For now when Mark is not at the hospital we are just
hanging out, sleeping in, watching TV and talking which we haven't gotten
to do in years since baby #1 was born. We just want to thank all
our family and friends for all your help.
June 19, 2002
Mark got some sleep last night as well
as I and continues to have a headache but not as bad as yesterday.
He spent about 5 hours up at the hospital as an outpatient getting different
medications through his catheter. Dr. Schriber looked him over and
talked with us for quite a bit today. The doctor thought Mark was
getting better neurologically and hopes after the MRI they will have some
answers and be able to start decreasing some of his medications. His speech
is a little slurred but the doctor thinks it is from one of his medications.
Mark was really wanting a cheeseburger from a restaurant so he asked Dr.
Schriber if he could have one...Doc gave him the ok as long as it didn't
have any onions or pickles so Mark is enjoying 2 cheeseburgers from Burger
King. The MRI is scheduled for noon on Friday and hopefully then
we will know what the spots are. Please pray that the spots have
decreased in size because that would mean most likely it was his
prograf level being too high causing the spots in the brain. If
the spots are an infection or fungus it would be much more difficult to
treat.
June
22, 2002
The results from Mark's MRI showed no change. The
bleeds and the spots looked the same as they did two weeks ago.
Dr. Schriber did say that the neuro-radiologist thought one of the spots
looked larger, but he didn't really agree with that. They are still
thinking it is the prograf that has caused these lesions in Mark's brain.
The bleeds I guess take a long time to re-absorb back into the brain so
Dr. Schriber wasn't surprised about that or that the lesions really hadn't
gotten any smaller. Dr. Schriber told us that he has seen some cases
where a transplant patient had lesions in the brain from prograf and it
has taken 2 to 3 months for the spots to go away. They will do another
MRI in 3 weeks. Mark is still experiencing a bad headache and the
doctor is still saying he has no other explanation other than a spinal
tap headache. The morphine is not helping so they lowered
his dose because now he is really sleepy. Wednesday night he slept
from 9:00 to 2:30 the next afternoon (that's 17 and a half hours of sleep!)
He has been sleeping a lot lately and hasn't felt good either. Along
with the headache he is very nauseated and weak. Also has no appetite...he
hasn't eaten since those BK cheeseburgers. The CMV is getting under
control now so his platelets are starting to come back up. Home
health came again today to show us how to administer some med's through
Mark's IV again. He will be getting Magnesium everyday at home except
days he goes to the hospital and they will give him Mag up there along
with all the other medications he gets. Mark really battles with
his Magnesium level getting low with all the med's he is on and Dr. Schriber
wants to keep it up because people are prone to seizures if your Magnesium
level gets too low. Mark goes back to the hospital on Tuesday as
an outpatient. Our girls are in Oklahoma now with Mark's family.
Mark's aunt and uncle (Pam and Terry-we love you both so much...thank
you for everything) came and got the girls from my mom on Friday night
and drove them to Mark's grandpa's house (thanks Grandpa for all you've
done...we love you!) to play with all the family and animals. Mark's
sister Katy drove over to Grandpa's house to see the girls too.
They haven't gotten to see aunt Katy in a long time so I know they will
have fun (thanks Kate...we love you too!)
.
June 24, 2002
Mark is still not feeling very good...battling with nausea, weakness
(especially in the legs...doctor says that is due to the steroids), loss
of appetite, not drinking and of course the headache. His temperature
has been spiking up the last couple of days also so I called the transplant
center and later talked to the doctor but by that time his temperature
had come back down some so I was to monitor him and call with any changes.
He really hasn't eaten anything in the last 5 days (his weight is down
to 160 pounds...he started at 209) and I have to get on him to drink.
I know it is difficult for him especially when he feels so lousy and is
so tired but if you tell him that he will have to go to the hospital if
he is dehydrated he manages to get some fluids down:) He is also
getting some fluids through his catheter when I give him his bag of Magnesium.
He continues to sleep a lot which I am thankful for, and we go back to
the hospital tomorrow.
June 25, 2002
Mark was re-admitted into the hospital last night at 10:00 because
he keeps spiking a temperature. He continues to have a fever, headache,
no appetite, nausea, not drinking, and extremely weak (I am having to
walk Mark to the bathroom). His blood pressure has been very low
too-82 over 39. He will get another spinal tap in the morning to
rule out infection again, but he may get a blood patch sometime after
the spinal tap to avoid a headache. The neurologist came to see
Mark today and said he was not surprised about Mark's headache since he
has a bleed in the brain. We don't know what is causing Mark's fever,
but we will let you know as soon as we do.
June 26, 2002
We still really do not know anything. Another spinal tap will be done
first thing this morning. If you remember a spinal tap was done a couple
of days after Mark's fall and they said it was abnormal on the initial
tests but that all the specific tests came back negative. The doctor felt
that his headache (since the fall) was a result of the spinal tap however,
now he says the headache would not last this long from the spinal tap.
Mark continues to be nauseated and is extremely weak along with the horrible
headache. The doctor mentioned doing a blood patch this evening depending
upon the spinal tap. So, we are just waiting this out and will update
as we find out what the plan is.
June 28, 2002
Mark is still very nauseated, extremely weak, not eating or
drinking, and running a fever. His headache is better when he lays
down now but as soon as he sits up it comes back very quickly and very
painful. We still do not know why Mark is running a fever or why
he feels so bad. Last night they did a CT scan to see if they could
figure out why Mark is so nauseated. He had to drink a bottle of
barium before the test, and he got it down eventually but right before
they came to get him to take him down for the test he threw everything
up. They did the test anyway, and we don't know the results of the
test yet (it wasn't completed until about 11:00 last night).
Today they may also do an endoscopy (a tube down his throat)
to help figure out why he is so nauseated...there is a possibility that
the nausea is graft vs. host disease and that is how they can find out.
A barium swallow was ordered by speech pathology to see if Mark is having
problems swallowing and that will be done today also. The
last test that I know about is called a PET scan which is a relatively
new test. Again Mark has to swallow a radioactive sugar solution
(poor guy...just what you want to do when you are nauseated is drink a
bunch of stuff that taste awful) prior to the test and then they scan
his head. This test can help figure out what the spots are in Mark's
head (I know why didn't they do this earlier...the transplant doctor said
he was waiting to see how things transpire with the next MRI...the neurologist
is the one that ordered it and he was waiting for the last MRI results
and since there was no change since the last one and now Mark has all
this other stuff going on he thought is was a good idea to do it).
If the spots are caused by his prograf (which is what they are still thinking)
then they will not appear on the scan but if the spots are an infection
or fungus they will appear gray and if the spots are malignant they will
appear bright red. Hopefully this test will be done today and maybe
we can get some answers. They are
going to start Mark on TPN (food through a tube) again since he is not
eating. His blood pressure has started coming up now, and he is
receiving a lot of medications to help with the nausea and pain so he
is very sleepy. So far the tests that have come back from the spinal
tap are negative, but they are all not back yet.
As soon as I know anything I will let you know. Please
continue to pray for us...this has been a very difficult time.
June 29, 2002
The results from the PET scan showed
that Mark doesn't have an infection, fungus or tumors
but the transplant doctors believe it is the prograf causing the
spots. The neurologist last night said that he really didn't have
an explanation for the spots because it is not presenting itself like
he typically sees it. Usually when prograf causes lesions in the
brain it looks like big blotches in the white matter of the brain but
Mark's are small blotches in the gray matter of the brain. I asked
if it is worse to have it in the gray matter as opposed to the white matter
but he said no, that it really isn't any worse to have it in one or the
other. He also said that typically spots if caused by prograf go away
in a week but the transplant doctors said they have seen cases where it
takes 2 to 3 months. He thought Mark was improving but he
wished they could get rid of his headaches because he said a spinal tap
headache does not last this long. An anesthesiologist is suppose
to come and talk to Mark about a blood patch today, but the neurologist
said he wouldn't be surprised if they didn't do it because Mark's platelet
count is too low. The neurologist said we'll wait and see what the
next MRI shows which should be done in two weeks. The endoscopy
showed that Mark's esophagus is a little irritated so they increased his
protonix (acid reducing medication) to maybe help with the nausea. The
CT scan showed that Mark has fluid in the lower part of his lungs which
is pneumonia and that is probably causing his fever. He was too
sick to do the barium swallow yesterday (this test is done by watching
Mark through x-ray swallow barium in a bunch of different consistency's
to see if he is swallowing correctly). The doctor thinks Mark as
been aspirating when he eats and drinks...that basically means when he
swallows it goes down the wrong tube and goes into the lungs. They
think that is why Mark has fluid in his lungs so he is now on thickened
liquids. The spots they believe are in the part of Mark's brain
that tells you how to swallow so speech is going to be working with Mark
to re-teach him how to swallow correctly.
Hopefully they will be able to do the barium swallow today.
Mark continues to be weak, nauseated, not eating or drinking, and spiking
a temperature. They have not started him on TPN yet, and his headache
continues to get really bad when he sits up.
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