Have A Giant Living In My House
I am the proud mother of three wonderful sons and a wonderful daughter.
My third child, Mark, was diagnosed with a pituitary macroadenoma
(not microadenoma, it was too big, approximately 5 cm.) in June
2000. He was 16.
He had been growing, and went through an awkward stage which I
described as bursting into the room when he entered. I noticed he
was tired and when he lay down on the floor, well he took up a lot
of space. I am guilty of calling him lazy, but on several occasions
I thought maybe the heat or some other change in the weather was
affecting him. He started not feeling well on Sunday and not going
to church. A lot of people would not be alarmed,
but I knew it was not because he didn't want to go. Later, he enjoyed
reminding the pastor that the pastor had told Mark, "It's all
in your head." Finally, one Sunday, he complained of pain in
his eye and I noticed it was drooping. My mother had had Bell's
Palsy, so I thought maybe that could be happening. Monday morning
I made an appointment for Wednesday.
His eye seemed to temporarily improve.
On Tuesday, he was sitting on the grass with his brother and they
moved away so I could have a private conversation with their sister.
Then, when they came back, my youngest son said, "Oh Mark,
I'm sorry! I'm sorry!" I looked over and Mark appeared to be
unconscious in the grass. I asked what happened and Stephen said
that he had accidentally kicked him in the head. It was actually
more of a nudge.
Mark has been involved in drama, so I thought he was playing around.
Later, he said to me, "Mom, I know it was an accident, but
Stephen kicked me in the head and I think I was out. He should at
least say he's sorry." Well, obviously he was out, because
Stephen had apologized. The next day, I related all this to the
doctor. Mark had a CT scan and we found out about the mass. When
the doctor came in to tell us, Mark and I knew something was up.
We exchanged glances. It must have been very difficult for the doctor.
I was in the process of a rather nasty divorce, and my father had
died within the last two weeks. My daughter was in the hospital
for depression. On Thursday, Mark had an MRI. We didn't know what
it was. Mark never cried and never seemed depressed. He said two
things to me over the weekend while waiting for the appointment.
The first was, "Well, if I die, I know where I am going,"
and the second was, "If I am going to die, I'd like to know
about how much time I have left." As a Mom, I didn't want to
deal with the "d" word. He was light years ahead of where
Monday, Mark, his father, and I went to a neurosurgeon. At this
point Mark was about 6'2", 180 lbs. His father is 5'8".
I am 5'4". However, I had a grandfather who was 6', 200 lbs,
and Mark was kind of a chunky kid unlike his leaner brothers. He
wasn't heavy. He carried his weight well, but he has broad shoulders.
We were told that he needed surgery, radiation (which would probably
be pretty simple but that ended up not being the case) and we could
probably expect him to live to 50. So, although the thought of brain
surgery is pretty scary, we knew Mark would be in expert hands,
and that he would most likely come out okay.
Mark had gigantism, because the tumor had squashed the pituitary
and puberty was delayed. Now, he has passed that and is currently
getting an injection of testosterone every 2 weeks. He was using
gel, but really didn't like it, and stopped using it, so the injection
is better for him. So, now he has acromegaly. He had two surgeries
in July and August of 2000 with Dr. Edward Laws at the University
of Virginia Medical Center in Charlottesville, VA. Dr. Laws is respected
world-wide. The first was removal through the nose (transphenoidal)
and the second was through the left side of the skull--craniotomy.
Dr. Laws said that he couldn't get as much of the tumor as he would
have liked without doing permanent damage.
It was also a harder consistancy than he expected. Before surgery,
Mark had lost 75% field of vision in his right eye. This was the
eye that was not drooping. After surgery, it was almost 100% restored,
but he was still complaining about his vision. It was only by examination
before radiation that we knew how well he had recovered.
When he was recovering from his craniotomy, Mark was put in intensive
care for awhile. They didn't have a room for him on the wing, so
they kept him there a little longer than he would have liked. They
did not want him to room with one patient who was noisy. Mark understood
this. He told me once how someone had to escort him to the bathroom,
but they enjoyed it because the other patients in intensive care
complained so much. My next visit, which was probably later the
same day, Mark was extremely negative. This was uncharacteristic.
I know I am a very proud Mom, but I was a little concerned. I told
myself, "Give him a break, he just went through brain surgery."
When he came back from going to the bathroom, he was
complaining about not having a room and still being in Intensive
Care. He knew why and they had a good reason for this. I mentioned
gently to him that he was being extremely negative. He said, "Am
I? Maybe I'm reacting to the medicine." I went out to dinner
and came back to check on him. He was asleep, so the lights were
very low, but his face was so red, I could see
it in the dark! Indeed, he had reacted to the medicine, but they
were able to straighten that out. After this second surgery he told
me, "Mom, I know that whatever I face in life, the Lord will
be with me through it."
By looking at photos, we figure the tumor was about 4 years old
before we discovered it. Mark had not complained of a lot of headaches.
After surgery, I had Mark speak at a school where I worked. He had
to close one eye or he would see double. He looked funny. He looked
like the actor who played Eyegore in Young Frankenstein. You could
see where all the staples
had been because his hair had not grown back yet. He had several
groups of inner city kids hanging on his every word. He spoke to
kindergarten to eighth graders. If they had made fun of him, he
would have been okay. But they didn't, and some of their questions
were amazing. It was great for them and for Mark. Another time,
teachers signed up for a visit from him.
We brought a tape from the Discovery channel about giants. Mark
did a question and answer with each group. This was before his radiation.
I brought some of his MRIs to show students the tumor.
When it was time to schedule the radiation, it was not the walk
in the park I expected. Because the tumor was so large, and not
much was able to be removed, conventional radiation was recommended.
However, I had heard so often,"You don't want that because
of blindness and brain damage," that I was very upset. Once
again Mark, his father and I went to an appointment to discuss options
with a radiologist. I was so upset even to be there that
I wasn't saying a word, but I did listen. The doctor said that conventional
was not that dangerous and we could have him in school after treatment
which would take five weeks locally. Mark went to school part time
at this point, and I was supervising some of his studies at home.
I worked as a substitute teacher. No one was commenting. So the
doctor continued and said what would have the least risk to Mark
was Proton radiation at Massachusetts
General Hospital. I was still unhappy with conventional radiation,
so we went for a consultation with Dr. Jay Loeffler at Mass Gen.
He basically said they couldn't turn us down and we scheduled to
go during the summer. At the time, it was still based in Harvard,
but now the cyclotron is across from Mass General's main entrance.
In the literature I did find about proton radiation, most acromegaly
patients get one day. Mark got 30 or 31 days. That was because his
tumor was so large. He didn't have a very large bald spot, and his
hair grew in curly. It's not so curly now, and his hair is as thick
as ever. He has
seen Dr. Loeffler twice for follow up visits and everyone is pleased
that the tumor is shrinking. While we were at Mass Gen, I found
out through the internet that there was an open study on acromegaly
at the National Institutes of Health (the largest research hospital
in the world). So
within a week of returning home, we went to the NIH where Mark was
an outpatient for 4 days. He was invited to talk to a group of military
doctors on rotation at the NIH.
Several months after radiation, Mark started not feeling well. He
was often sent home from school and I ended up withdrawing him in
May 2002. He started passing out. At first we thought this was a
fluke, but before we went for our annual visit to the NIH in August,
he was passing out sometimes 7 or 8 times a day. But when he was
asked to speak to the military
doctors, he wasn't told that it would be about 15 minutes. He thought
it would be
about two hours! He loves talking to people.
I remember the passing out had barely started when we had the
first check up with Dr. Loeffler in February 2002. Dr. Loeffler
was very happy about the tumor shrinking, but Mark had been feeling
so poorly, that I was preparing myself for some kind of bad news.
By the second check up in February 2003, it was suggested that Mark
might have sleep apnea or
narcolepsy. This is in the process of being investigated. At the
moment, he is doing really well, but there has never been an explanation.
At one point, the radiation was suggested, but Dr. Loeffler said
the radiation would not have this kind of effect.
Last August, Mark was an inpatient from Sunday to Friday at the
NIH. They did the 24hr. EEG, had a heart monitor and did a lot of
other tests. He passed out during his MRI. He would pass out standing
up, laying down or sitting down. It was not seizures. Outside the
NIH, I was told that the radiation would take up to 10 years to
bring his growth hormone down to 0. At the NIH, I was told based
on his IGF-1, he probably had ten years to live. This was quite
a shock to me, since my expectation had been that he would live
to 50, and that is still quite a way in the future. This doctor
did not know my whole context of what other doctors had said. I
appreciate knowing the information. All the doctors seemed to agree
that Mark would be a good candidate for the medicine in the clinical
study coming up pegvisomat. Mark's blood work showed his IGF-1 was
not high enough to get into the clinical study. I couldn't understand
if he supposedly had 10 years to live based on his IGF-1, how he
possibly could not have a high enough number. Our endocrinologist,
Jonathan Anolik, was listed as a "Top Doc" in Philadelphia
magazine. He deserves that. All of the doctors we have worked with
have been superb. Dr. Anolik got special permission for Mark to
enter the clinical study. Then they closed the study. Finally, they
let him in because they had given him special permission before
they closed the study. Recently, Dr. Anolik called about other matters
and I asked when Mark was going to take pegvisomat. Dr. Anolik said
that his IGF-1 was in the norma
l range and he didn't need it. Mark and I believe this is the result
of answered prayer. When he started the process for pegvisomat,
he was considered refractory, which meant his other medicines were
not effective in lowering his IGF-1. No one has really attempted
to explain otherwise to us. Even if they do, we know what we believe.
Being a Christian means not just that you believe Jesus Christ
died for your sins and rose again and some day you will go to heaven,
it means trusting Him day by day in your life. He died for our sins,
and trusting Him means eternal life starts now and continues into
the next life. Mark shows me this every day. He is not perfect,
and our family is far from perfect.
His brothers have grown in compassion because of this time of having
to look out for Mark. One doctor at the NIH questioned if Mark had
control of the passing out because he wasn't bruised and didn't
break any bones. I was working a lot at that time, so Mark's brothers
took care of him. I said that his brothers were very diligent. He
didn't accept that, so I said, well the angels are watching over
him. He REALLY didn't like that. As a Mom, although this hasn't
been real easy, Mark and the rest of us consider his tumor a blessing
because we have learned so much from it. When I get discouraged,
I look at him and think I really don't have anything to complain
about. He is an example to me. I think it has also affected the
way we look at life in the sense that we want to enjoy simple pleasures
of being together. We kid around a lot. We laugh. We tell each other
that we love each other. Sometimes we have a family hug "sandwich"
initiated by Mark.
The issues for Mark are at the moment, his bilirubin is high.
Not long ago, his pupils looked yellow to me and even his skin.
We've had a lot of rain, but we've managed to get him out and walking,
which was a real difficulty when he was passing out more frequently.
The other effect of radiation and probably the tumor as well, are
his teeth are terrible. He has impacted
wisdom teeth, his other teeth are losing root canals and soft. Since
he was passing out, no one would agree to dental surgery, but now
the doctors have given me a go to get it for him. His gallbladder
is "sludgy". He does not have gallstones. Dr. Anolik told
me that sandostatin (which the NIH said helps shrink the tumor as
well) could have affected this, but Mark hasn't
had sandostatin since January due to the study. He has purple lines
from prednisone, which he takes in a different form now. He is presently
6'7", almost 300lbs. He is starting to lose weight. He thinks
that since his IGF-1 is down, that he is not as hungry as he was.
He is a very picky eater, and does not eat hardly any fruit or vegetables.
However, he takes
supplements and drinks fruit juice. We are looking forward to dealing
with these issues and going on a family vacation before going to
the NIH again in August. Mark will turn 20 in September.