April 3, 2002
Today is the day! The donor's marrow
should have arrived by flight at 2:00 pm and will be rushed to the
hospital, processed and transplanted to Mark between 3:00 - 3:30pm.
After telling us the blood transfer would be this morning not yesterday,
about 7:30 last night that plan got changed and Mark had the blood
transfer last night. It took around 3 hours and Mark seems
to be doing fine. Still some stomach problems...but, nothing
that is abnormal.
A few people got to visit him yesterday, he must wear a mask and
visitors must do a 3 minute scrub in order to see him. There
is a special air filtering system in his room that helps eliminate
germs. He appears "tan" and this is from the radiation...he
was actually red and burnt from the treatments for a few days.
Mark's room is quite small but he has a wonderful view of Camel
Back Mountain from his window. He had attempted to climb that
mountain with his boss when he first discovered that he wasn't quite
up to par.
3:50pm Stacey called the transplant just started, she will call
me when it is completed.
April 3, 2002
7:57 PM MARK just called and the transplant is complete and
he had no adverse reactions.
April 4, 2002
Somehow this date got lost so I'm going to
try and write what I can remember. The days are all kinda
running together, but I'll do the best I can. The transplant
went very smoothly, but it was pretty emotional on Stacey.
Mark was pretty drugged up so he slept through half of it.
It took about 4 hours for the marrow to be infused. After
it was over, Mark and Stacey watched a movie from the oncology unit.
Stacey had brought up some Happy Birthday balloons to celebrate
the occasion. We are so thankful that God has brought this
donor into our lives. All we know about him is that he is
a 23 year old white male (now Mark is telling me he is 8 years younger
than me instead of 8 days). We will not be able to know who
he is until one year after the transplant. We hope to meet
him then. The donor had also sent a card to Mark and on the
front of it said, "Let the weak say, I am strong!" Joel 3:10
How so true that is...Mark has been so strong through all of this.
April 5, 2002
Mark's mouth began to hurt last night due
to the mouth sores and has gotten worse today. He is really soft
spoken now and it is difficult for him to talk. They are going
to give him morphine for the pain. The sores are caused by
all the radiation and chemo he has received. He actually received
a little bit of chemo again last night (I didn't know he was going
to get more until yesterday) because everyone receives a little
bit of chemo 24 hours after the marrow is infused. The doctor
has told us that unfortunately Mark will have another period that
is pretty rough but will be a different type of rough he went through
with radiation and chemo. This time it will be the sores in
the mouth and throat, fever, chills, etc. He is also
on several different med's for anti-rejection, anti-fungal, stomach,
infection, etc. (there is a whole list of them). Mark's white
blood cell count was 200 yesterday and eventually will get to zero.
Linda is still getting over her sickness so she has not been able
to see Mark since she got sick. Keith (Linda's husband) flew
in last night and went to see Mark today. Stacey will head
up to the hospital this afternoon.
April 6, 2002
Mark's mouth and throat hurt pretty bad
today due to all the sores. He is receiving a lot of morphine
now and last night he got about 5 doses so he is very sleepy. It
is very painful for him to talk. His platelet count was down
to 19 yesterday so he received some platelets last night.
He will probably receive a blood transfusion today also. His
weight loss is up to a little over 13 pounds, but it is hard to
determine really how much he has actually lost due to all the fluids
he is receiving. He is still obviously not eating or drinking.
He probably has actually lost more than 13 pounds so last night
they started him on TPN (nutrition through a tube). Being
a dietitian, I was glad to see that. It is difficult to see
someone you love go through something like this, but you just remind
yourself that he is not alone in this. The Lord is with him
every step of the way and will never leave him. "Blessed is
the man who perseveres under trial, because when he has stood the
test, he will receive the crown of life that God has promised to
those who love him." James 1:12
April 7, 2002
Mark is on a continual morphine drip now
for his pain from the throat sores, joints, etc., he is extremely
weak and talks in a soft whisper. We were told the throat
and mouth sores will last until his new marrow starts producing
white blood cells (about two weeks). He will continue
to be fed intravenously until the sores have healed. He has
slept a great part of today and continues to have a great attitude.
The doctor has told us that the most critical time for Mark will
be approximately two weeks after the transplant.
April 8, 2002
Mark is running a fever today, 100.7, Stacey
is getting ready to go to the hospital and Linda will remain here
with the girls as she still have some cold symptoms.
April 9, 2002
Mark's fever kept spiking up yesterday. It got up to 102 and
then he would get the chills real bad and shake. The next
time I would look at him he was sweating, so then he was breaking
his fever. His fever did fluctuate a lot yesterday.
He is also on oxygen now...his oxygen level was down to 89%.
The morphine drip is now up to 6 an hour where in the beginning
it was 2 an hour. His mouth and throat look pretty miserable
and the doctor said yesterday that will actually get worse.
Until his body starts to produce white blood cells, his mouth and
throat will continue to have the sores and that will take 2 to 3
weeks. Day one after the marrow was transplanted, Mark had
another round of chemo and on day 3. I learned yesterday that
he will also get it on day 6 and 11 to keep his immune system down,
so that means he will get another round today. His fluid intake
(through the IV) was a lot higher than his output yesterday (his
weight was up also) so they gave him Lasix (a diuretic-just makes
him pee a lot). He still is not taking anything by mouth.
The hair is now starting to fall out quite a bit, his bed just gets
covered with it and it especially comes out when he takes a shower.
Mark's spirit is so positive still...yesterday he looked at his
bed and saw all the hair and said "Stace it's just hair...it will
grow back"
April 10, 2002
Mark got his oxygen taken off yesterday
since his oxygen level had gotten back up. His chemo went
fine and hasn't had any reactions to it. He was VERY sleepy
yesterday. Today he is receiving two doses of benadryl (he
usually gets one) and that really knocks him out, so needless to
say he will be sleeping a lot today too. Linda went up today
but is still unable to see him due to her cold but did wave at him
through the window and said he is very red today. After his
shower last night, Mark lost a lot of hair on his head so now from
the front he looks like he has a mohawk.
April 11, 2002
Stacey spend the day with Mark and he
had a rough day. Nothing out of the ordinary for a BMT...but,
still a rough day.
April 12, 2002
I (Linda) got to spend about
five hours with Mark today, he has now been in the hospital 18 days
and each day it seems he goes down hill a little and as bad as we
think he is the doctor assures us that he is doing better than the
average person and that everything he is going through is normal.
His WBC was ".1" today and his platelets were 27. His hair
is falling out, 2/3 of his head is now shinny bald...looks much
different than just shaving it, he continues to be fed intravenously
as the sores in his mouth and down his throat cause him the worse
pain. Mark tires quickly and just talking on the phone can
wear him out however, he loves the phone calls...so, please no one
stop calling he will tell you when he is too tired to talk.
April 13, 2002
I'm sitting in Mark's hospital room this
morning and just want to report that Mark looks great and appears
to be feeling better today than yesterday. His coloring is
better, he has several little blood spots on his body where he has
scratched his self. The doctor has been in and did say that
Mark would receive platelets later today as his count is 22 and
he re-affirmed that Mark is doing great!
Mark has posted a message on the front page... he really enjoys
the messages left on the guest book and the message board!
April 14, 2002
Today Mark got his last round of Chemo,
is still on the morphine drip and being fed intravenously.
The Chemo will slow down the white blood cells from reproducing
which could cause more mouth sores but, the added Chemo does some
how help lower the risk of "host vs. graft". Or, that is what
I thought the doctor explained and he also said that Mark is amazing
him. The mouth sores are some better, he did eat about 2 tablespoons
of jello and is drinking fluids now. He has a large red blood
spot in each eye and about 3/4 of his hair is now gone. He
had another good day which is so encouraging for all of us!
April 15, 2002
Today was tax day...need we say more!
April 16, 2002
Mark continues to do well.
He continues to be extremely tired and eats his meals from a tube...but,
so far so good! I have put some pictures of Mark
on the web site, that have been taken since the transplant, and
you can see the changes in him from Day 1.
April 17, 2002
Mark found out yesterday that his marrow
has started to engraft (Praise God!). Some numbers in his
blood work went up that had been zero, but again today the number
is zero. They told us that it is very normal in the beginning
for his numbers to fluctuate but that something has definitely happened.
What engrafting means is that the marrow has attached itself to
his bones and his body is trying to produce his own. The doctors
did tell me today that even though he is doing so well that he still
is at risk for graft vs. host disease which can happen anytime within
the first year but that so far he is doing amazingly well.
Mark is feeling pretty good, but still very weak, tired, and eating
nothing by mouth. He is having a lot of phlegm (which really is
his cells sloughing off) that is causing him to throw up but is
not feeling nauseated. The 2 tablespoons of jello the other day
is all he has eaten since then. When you go through radiation
and chemo it is very typical for your taste to change and get a
metallic taste. The doctor is more worried about being able
to drink than anything else, and Mark is drinking now with the ability
to keep it down. That is key since he will be on A LOT of
meds when he comes home. Some of his meds will probably still
be put through his tube so he will most likely have his catheter
in when he goes home. You have to be very careful with it
too because it is a great risk for infection so we will have to
change his dressing on the catheter site daily. When Mark
comes home from the hospital, he has to have 24 hour care and still
has to go to the hospital daily for awhile. His visits to
the hospital will take around 4 to 5 hours. As far as his
physical appearance, I think he is still very handsome. His
coloring is getting better everyday! The eyes still have big
blood spots in both of them which happens very easily when your
platelet count is so low like his. Just rubbing them a little
can cause them to look like that. Mark has to be very careful
when blowing his nose also because if he got a bloody nose they
would have a hard time getting it to stop since his platelet count
is so low. So needless to say, Mark needs to be very careful
not to fall or get a cut. He has lost almost all of his hair...he
has such a beautiful head! Kylie got to go see him yesterday.
It was so wonderful to see them together, and Kylie did so good.
She was very loving on Daddy and thought the scrubbing up for 3
minutes tickled. Kenzie went up today and actually let me
scrub her up for 3 minutes which alone was amazing:) She also
did very well and loved on Daddy. It meant so much to Mark
to see the girls, and he thought they had both grown so much!
April 18, 2002
Today Mark is feeling very weak and
tired. He did not sleep well last night and has been throwing
up a lot during the past 24 hours. His white blood count continues
to be zero...this is what we wait for each day to see if there is
any change. The doctor assures us that he is not doing anything
out of the ordinary. When we report that Mark is doing quite well,
we mean that he is doing well for a transplant recipient, which
isn't terrific. His attitude continues to be positive and
while he is extremely tired his spirits are always high and he loves
hearing from all of you .
April 18, 2002 10:20 P.M. (12:20
CST)
Stacey is up at the hospital,
Mark has a fever of 102 and is still throwing up and he has been
too sick and weak to take phone calls this evening. The doctor
has ordered a blood culture...which will take around 24 hours for
the results. We are being told that this is not uncommon...however,
it really scares me after him doing so well this week...normal or
not!
April 19, 2002
Mark is feeling a little better this
afternoon. He continues to run a fever but this is not uncommon.
His WBC is now .3. The first results of the blood culture should
be back in the morning. Hopefully, Stacey can give a more
detailed update as she is at the hospital with Mark now. I
hope everyone has a wonderful evening and we should know more
tomorrow.
2:40 pm
Mark continues to run a fever
of 102, is very nauseated and extremely weak. He says that
just talking makes him nauseated.
April 20, 2002
Mark developed a rash all over his body yesterday. The
doctor said it is probably "graft vs. host" disease, to make sure
they had to do a skin biopsy. They took the sample from the
back of his right shoulder last night. They have told us that
a little bit of "graft vs. host" disease is good and the rash is
very common one. They have started him on a steroid to help
control the rash. Mark continues to run a fever between 101
and 102, and is feeling VERY weak and tired. He is also still
nauseated, throwing up, and now he has diarrhea too. Right
now, he is just feeling pretty lousy. Mark has been getting
platelets almost every day still due to his count being so low.
April 22, 2002
Mark started to feel better yesterday
afternoon but around 8:00 last night he went downhill again.
His fever had gone away yesterday too but is starting to creep up
again and his rash last night really started to itch so they gave
him a double dose of benedryl and put some benedryl cream on it
too. Eventually, it started to help with the itching.
He woke up not feeling well at all with nausea, vomiting, and weakness,
but his WBC count is up to 1 today! I just talked to him around
12:45, and he was feeling better. They gave him a double dose
of benedryl again which makes him very sleepy so he is napping now.
His Granny flew in today from Tulsa, OK and she got to see him.
I know he was really looking forward to that, and she will be here
until the 30th!
April 23, 2002
Today was another rough day for Mark.
He continues to be nauseated, running a fever, throwing up,
and diarrhea too. All of these are symptoms of "host vs. graft".
The skin biopsy that they did a day or so ago came back okay, the
preliminary blood cultures have shown to be okay, last night they
did a cat scan of his chest area and it showed nothing conclusive.
Tomorrow morning they will do a Colonoscopy,
because of the diarrhea, to check for the "host vs. graft".
Hopefully this too will come back okay...the doctor says that the
colon can be the most dangerous place to have the infection.
Mark's coloring also had a funny look to it today...he was more
red in spots and his overall skin color seemed to have a yellow
cast to it. He barely speaks as it tends to make him more
nauseated.
Mark loves to have his feet rubbed, so I did that for almost the
entire time I was with him today.
Stacey reads his messages to him at the end of each day as he has
been feeling so sick and weak that he has not been able to answer
any of the messages. Each morning I look to see if he has answered
any of the messages, for when he resumes doing that, I will know
that he is gaining a little.
He continues to have a good positive attitude...and assures me that
he is going to be just fine!
April 24, 2002 AM
I goofed when I said that the skin biopsy
came back okay...that is wrong I am being told, it DID come back
positive for "host vs. graft". Mark will have his Colin procedure
at 9:00 am and I'm rushing to be at the hospital when he has that
so I will update on that as soon as I get back.
April 24, 2002 PM
Mark looked good today, his coloring
was much better...and, even some of his sense of humor was back.
A biopsy was taken when they did the colonoscopy. The results will
show whether or not the "host vs. graft" has entered his colon.
As a precaution they began treatment for the disease as they
did not find any other reason for the diarrhea, which he continues
to have today. As part of the treatment Mark gets nothing
to eat or drink. He had been taken off the intravenous feeding the
day before yesterday but has not had an appetite...and, I am not
sure if they will put him back on the tube feeding or not. Over
all for the most part Mark seemed to be much better today than yesterday.
April 25, 2002
Today was a little better than yesterday.
Mark's biopsy came back negative but the diarrhea continues so the
doctor assumes that he does have the "host vs. graft" further up
in the colon and is continuing treatment. Mark is being fed
intravenously again and still can not drink anything, which is no
fun! Mark even felt good enough to leave everyone a message in the
guestbook.
April 26, 2002
Mark is feeling good again today.
Praise God! I have to tell you a little story...yesterday
Mark told me he had prayed Wednesday night that he just didn't know
how much more he could take of feeling so bad and asked God to please
make him feel better. Well the next day Mark felt better than
he has through this whole process. Wow...Thank you God!
What an answer to prayer...prayer is very powerful so keep them
coming. The doctors are letting Mark graduate to a clear liquid
diet today so they can see how he tolerates it. If he does
ok, they will keep advancing his diet. The diarrhea has slowed
down A LOT! The day before the colonoscopy when Mark had severe
diarrhea he had lost 12 pounds in one day...talk about being full
of a lot of poop:) They are assuming it is host vs. graft
so they treat it with steroids just like they did with his rash
but a higher dose. Unfortunately, a side effect of the steroid
is restlessness so he hasn't been getting a good nights sleep anymore.
He hasn't been running a fever anymore and isn't nauseated either.
Occasionally he still throws up when he gags on the phlegm in his
throat. Overall, he looks SO wonderful, and it is so encouraging
to see him looking and feeling better. Mark and I are going
for a walk tonight around the nurses station so here comes date
#2. Look out!
April 28, 2002 - 25 Days
after BMT
It has been three weeks since I have
seen Mark, and I am impressed at what I saw today. He looks good,
and says he feels good. His skin has cleared up tremendously. His
eyes, though still showing some blood spots, look nearly normal.
He is even showing some of his typical wry humor, evident when he
chastised Linda (in jest) for having fun in the sun instead of visiting
him in the hospital. I tried to capture what I saw by taking
some pictures of Mark walking through the hall, chatting with his
mom, and preparing to eat a hot dog. Linda plans to put some photos
on the web soon to show the progress.
His medical charts look better, too. His blood pressure is good.
His white count is rising slowly. His red cells have not started
to develop yet. The process is a slow one.
If he continues to improve at the rate he is going he may be able
to go home in a week or two. The doctors are starting to prepare
and wean him off the intravenous drugs in anticipation of a hospital
release. This is no small thing, since he is attached to so many
tubes feeding him a wide assortment of medications. Even when he
goes home he will still have to visit the hospital every day to
take doses of certain drugs that are not available in ingestible
form. Of course, they remain cautious, reminding Mark that many
things can happen, and that setbacks are possible, even probable.
All of us are hopeful, of course, that Mark will avoid the backslides.
He is doing well.
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