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July 1, 2002
I don't have much to report. The biopsy from the endoscopy
came back negative which means the nausea is not graft vs. host disease.
He has not ran a fever for 3 days and the headache is much better when
he is laying down but still comes back pretty fierce when he sits up.
They gave him a caffeine drip tonight and will give him another one tomorrow
but if this does not make the headache go away they will finally do the
blood patch on Wednesday. The anesthesiologist isn't real crazy
about doing a blood patch on Mark since his platelet count is so low,
but Dr. Schriber said he will see that it gets done because he doesn't
want to see Mark go through the pain of the headache any longer.
The barium swallow has not been done yet, but it is suppose to be done
tomorrow. TPN still has not
been started yet but Mark has started to eat a little (very little) and
they would prefer to get him to eat than start TPN. His nausea comes
and goes throughout the day and is still very weak.
July 3,2002
Mark had a pretty rotten day yesterday...he was very nauseated,
throwing up, and spiking a temperature again. They did an ultrasound
yesterday on his gallbladder to see if he has gallstones that are causing
his nausea but we don't know the results of that test yet. The caffeine
drip didn't help his headache so hopefully the blood patch will get done
today. The barium swallow was done yesterday, and it did show that
Mark is aspirating when he drinks liquids. He is on thickened liquids
with the consistency between honey and pudding (they would like it as
almost pudding but Mark is not overly thrilled about this). The
thickened liquids are gagging Mark too since he is so nauseated so he
really isn't drinking except when he has to take his med's. That
is quite a chore because he is on A LOT of med's. Mark continues
to be extremely weak, and I have been giving him sponge baths because
he doesn't have enough strength to take a shower. He is losing more
weight since he still is not eating and TPN STILL hasn't been started
yet. Please pray for Mark as he is getting very tired and worn out
through this whole process. It has been very physically and emotionally
draining on him.
July 4, 2002 (Linda)
Stacey just called to let me know that the "blood patch" procedure
had been done on Mark at 7:00 am. Another MRI was also done late
yesterday evening. We do not know the results of the MRI or the
ultrasound that was done the day before yesterday as of yet...but, hopefully
someone will tell us something before the day is over. Stacey also
said that they told her someone will need to be in with Mark 24 hours
a day now. A aide, called a "sitter" will be in with him,
when Stacey, isn't for the time being. It seems he fell again this
morning trying to go to the bathroom by his self. Fortunately,
he doesn't seem to be hurt. His liver enzymes are high so he still
isn't able to be put on TPN.
As soon as we know anything else we will post.
July 6, 2002
The blood patch appears to be helping with Mark's headaches
since the headaches never came back since the procedure was done.
The MRI showed that the bleed, swelling and other lesions have gotten
smaller (Praise God!), and the ultrasound showed some stones in his gallbladder
but nothing they are too worried about.
TPN (nutrition through a tube) was started on Thursday night
to be given at night only for the time being. They believe his liver enzymes
are elevated due to medications so they decided to start the TPN because
Mark is malnourished, and his protein stores are very low. As far
as how Mark is feeling, it is VERY lousy!
He continues to be very nauseated, throwing up, weak and has
severe diarrhea. No medications have helped with the nausea
or diarrhea. The doctor today said that Mark may have
colitis (inflammation of the colon) that is causing his diarrhea so he
wanted the GI (gastrointestinal) doctors to come see him. They performed
a procedure called a flexible sigmoidoscopy (a tube passes through the
sigmoid part of your colon) and found that Mark does not have colitis,
but they took some biopsies to check for graft vs. host disease.
We don't know the results of that yet. Mark's face is
very swollen and his tongue is too. The doctor said the swelling
in his face is from his steroids but isn't sure why his tongue is swollen.
Mark is now unable to swallow so all his med's have been changed to IV
form. His blood pressure got
really low today (78/34) and his resting heart rate was very high (148).
They pumped him full of fluids because they said he may be dehydrated,
and his blood pressure did come up some and his heart rate was down a
little. They started to give him a medication called dopamine to
help bring his blood pressure up. A lot of his medications have
been altered in effort to make the nausea and diarrhea go away but have
not succeeded this far. Also the last couple of days Mark's breathing
has been very labored. Mark spiked a temperature of 103 today so
more antibiotics were started and more blood cultures were done.
We don't know why Mark is running a fever but as soon as we
know something we will let you know.
July 7, 2002
Mark's fever went down today and hasn't ran one all day.
His blood pressure has also stayed up, but his resting heart rate is still
high. The swelling in his tongue
is gone so he is able to swallow again! They are allowing him to
take his pills with regular water (no thickened) so that has helped a
lot with the pill taking. He felt a little better today, but still
doesn't feel very good. He continues to have diarrhea and some nausea.
He has been gagging on a lot of mucus but is able to kinda puke (sorry
for the graphic detail) it up which is a good thing. His face is
still swollen but it has gone down some as the day went by.
Mark did get a headache today in which he rated as a 3 on a
scale of 1 to 10. Physical therapy
came and worked with Mark today, and he was able to walk one time around
the nurses station with a gait belt wrapped around his waist
and the therapist assisting him. We should know the results
of the biopsy that is checking for graft vs. host disease either tomorrow
or Tuesday.
July 9, 2002
Mark is very tired because he hasn't slept the last two nights
(having to go the bathroom every hour since he was retaining so much of
the fluids he received so quickly when his blood pressure went so low
and now his body is getting rid of it). He still has not ran a fever
since Saturday and the nausea is better. The nausea still comes
and goes but is not as frequent as before. The diarrhea has slowed
down, and today we found out that Mark has graft vs. host disease which
is causing the nausea and diarrhea.
They tell us that having a little bit of graft vs. host is good in the
long run. They will treat that
by increasing his steroids. He is getting stronger now...before
he couldn't even get himself out of bed because he was so weak but now
he is able to (still a little wobbly though). Mark has been having
trouble with his short term memory since the fall on June 2nd so neuro-psych
is going to be working with him on some techniques to help with that.
Physical therapy will continue to work with Mark to increase his strength,
and speech therapy is still working with him to improve the muscles in
his throat so he will start swallowing correctly instead of aspirating.
Everyday he is feeling a little better but has a long ways to go, but
we are getting there.
July 13, 2002 (Linda)
Mark has improved quite a bit since the last update.
He has not ran a fever for several days now and his vitals have stayed
stable for a couple of days. The diarrhea has slowed considerably...the
steroids must be kicking in. He is only receiving TPN and one other drug
intravenously...so he is free of the machine most of the day. Mark has
a headache and stomach pains, but has decided to forego any pain medication.
I am here at the hospital, Mark fell asleep while watching the Diamondbacks
and Dodgers battle it out on TV. Mark is a Diamondback fan...and the game
is tied. Stacey went with her Aunt to check out apartments yesterday and
today. They plan to move the end of this month. The game is now AZ 4 -
LA 2, YEAH!
July 19, 2002 (Linda)
Mark has continued to improve and he
even got to come home yesterday. He will continue to receive the
TPN and a few other drugs intravenously which Stacey has been taught to
do (we call her Nurse Stacey), which will reduce the days that he must
spend at the hospital.
Another swallow test was administered to Mark on Wednesday which showed
that he is still continuing to aspirate. He has been taught how
to swallow or a technique to use when swallowing to help prevent any thing
going to his lungs.
He was also send home with a walker to aid him in getting around the house.
Mark is now down to around 150 pounds and is extremely weak. He
has started to eat some. Last night he did have about a half of
a Arby's sandwich.
Stacey has been busy looking at apartments (and she did rent
one), packing and today she is having a garage sell to try and get rid
of all the stuff that will not fit in the apartment. She really
has her hands full!
July 21, 2002 (Linda)
Mark has begun to have a little bit of
an appetite. He has gone so long without eating that it doesn't
take much to fill him up!
Brian (Mark's older brother) is "sitting" with Mark today so
that Stacey can go to church and take care of some errands. Brian
moved to Phoenix almost a month ago which has been a big help to me knowing
that he is close by, if needed. I have returned to Kansas and will
return to work tomorrow. We are all going back to our normal routine
with great hopes that Mark will continue to improve with each day.
Mark feels good today....this is a record! He has been out of the
hospital three days and is still feeling okay! Of course, he continues
to be extremely weak and someone needs to be with him....but what
an improvement over just two weeks ago!!!!
Sadly a good friend of Mark and Stacey's was diagnosed with breast cancer
this past week and I would like to ask all of you that have Mark in your
prayers to please include Heather. She has been so good to keep
up with Mark's progress and continually sending him messages, which Mark
so appreciates, that we are all in shock over this.
July 23, 2002 (Linda)
Mark continues to feel good...yesterday
he went to the hospital (his normal routine) and all his counts were good
so they did not have to give him anything. Nothing! And, he
didn't have to go to the hospital today...he will return tomorrow.
Stacey is busy packing and preparing for the move. Moving into something
smaller is not fun...and takes much time deciding what to let go of because
of space. Her parents will leave tomorrow and drive to Phoenix to
help with the move. I know Mark and Stacey both appreciate that
so much!
July 27, 2002 (Linda)
The past few days have been good ones
for Mark. He was only required to visit the hospital on Monday and
Wednesday of this week due to his counts all being good. He will
return next Monday. It has been a week since I came home and even
his voice is sounding better, to me, with each day. Last night for
the first time Mark was left alone for awhile. Stacey, her Mom &
her Dad went over to the apartment to do some cleaning. One of them
was going to stay with Mark but he insisted that he would be okay.
I believe the major part of the move takes place today and I know they
will be so glad when it is completed.
July 29, 2002 (Linda)
Mark went to the hospital today. All of his counts have
remained normal so the only thing he had to get was his anti-fungal medication
by way of IV. They will be doing a BMB (Bone Marrow Biopsy) in a
couple of weeks to confirm that the Leukemia is gone. His strength
is continuing to improve with each day and he says he feels okay.
The move went smoothly and a wonderful group of people showed up to help
them...and they really appreciated it.
July 31, 2002 (Mark)
Hi everyone, I'm typing my own update today. Today is the 13th
day that I've been home. This ties the record! I feel really
good, although I'm still a weakling! I started physical, occupational,
and speech therapy on an outpatient basis
yesterday. They had me work with one and two pound weights (that
is my max right now) so today I feel like I'm back in high school football!
I'm sore, but it's a good sore!
I would like to thank everyone for their thoughts and prayers, you have
all had a big part in my recovery. I wish I could thank all of you
in person, but my support group has grown so large I don't know if it's
possible. I never thought this webpage would grow so much.
There is one person that I get to thank everyday, but that never seems
to be enough to me. Stacey, there's no way I could have gotten through
this without you! Your love and dedication to me has been
unbelievable! I love you more and more everyday, and truly believe
that God blessed me with an Angel in my life.
I go to therapy tomorrow, then back to the hospital (outpatient) on Friday
morning. We'll do another update Friday!
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