**This was originally written in April 2007. The one-year anniversary of Keeghan's diagnosis was coming up and I felt the need to get this original part of the story added to the website.
Ok, I said a few weeks ago that I was going to do this and I just
haven't made myself follow through . . . but with the anniversary of
Keeghan's diagnosis coming up, I decided it needs to be done.
So, how did this all start? Funnily enough, it started with a broken nose. Sort of.
Keeghan
was playing tag at school on March 10, 2006 and stepped out in front of
another kid who ran head first into Keeghan's nose. I got a call from
the school nurse about it and, since school was going to be out soon, I
just signed him out and took him home. It never occurred to me to take
him to the hospital.
Later, when Mike got home and I was telling
him about it, he made a comment about how it was a good thing Keeghan's
nose wasn't broken. I immediately groaned and said, "I never thought
to look and see if his nose is crooked!" So Mike went to check him out
and sure enough, he was looking a little like a boxer after a losing
fight! So we called the hospital and they said to bring him in. After
about six hours in the ER and a couple of x-rays, we were told that it
probably was broken but that because he was so young, his nose was
still mostly cartilage and would likely straighten itself out.
Fast forward a few weeks . . .
Around
the beginning of April Keeghan started getting sent home from school
almost daily due to headaches and nausea. I took him to see his
doctor, Dr. DeLaTorre, and she prescribed allergy medicine and drew
labs. Keeghan had had problems before with allergies, so I wasn't
surprised. But because Keeghan had never had blood drawn and was
terrified of just the thought of it, Dr. DeLaTorre drew his
blood herself. She then told me to call her back in a week if he
didn't seem to be getting any better.
Mike and I thought that
maybe he was going through a growth spurt, because he had grown about
1/2" in the past month. We even measured him just to follow up in a
few days and see if he had grown.
A week went by and he still
wasn't making it through a day of school. In fact, most days he'd have
such bad headaches that I'd just keep him entirely. But by afternoon
he'd be fine and want to go out riding his skateboard! So I called the
doctor again. That was on Monday, April 17th. She asked me if I would
mind if she ordered an MRI to see if maybe the broken nose was what was
causing all of this.
Looking back, it seems funny that she
asked if I would mind. Do people really mind when a doctor wants to
order tests to find out what is wrong with their child?
Anyway,
I said that I didn't mind. The MRI department called me later that
afternoon and, amazingly, said that they had an appointment open on
Thursday, April 20th, at 7:00pm. It seemed a weird time for an
appointment, but I thought "Great! Mike can go with us."
Again,
I keep having to add these little side notes . . . at first Mike and
Mackenzie weren't going to go to the MRI with us. I really wanted them
there though. I didn't have a good reason as to why I wanted them
there. I just did. THANK GOODNESS!
On Thursday, before we went
to the hospital, we hit the convenience store on base and bought junk
food to eat while we watched a movie later when we got home. Then we
went to the MRI.
Keeghan had decided he didn't need to be
sedated for the test since he's never been claustrophobic. We agreed
that I would go into the test with him and that Mike and Mackenzie
would wait in the lobby. The test seemed to be going fine. Then the
techs that were running the machine came in and said that the
radiologist wanted to do part of the MRI with contrast, meaning Keeghan
needed an injection. The poor little guy fairly freaked. Before they
even came near him with the needle he was crying.
This is so
hard . . . just remembering this stuff . . . I'll never forget him
looking at me, sobbing, and saying, "Mama, please don't let them do
this to me." I actually almost said no to the contrast because
Keeghan's doctor had not said anything about him needing it. But then
I changed my mind and did my best to calm Keeghan down so they could do
it.
Once the injection was done and Keeghan had calmed down,
they put him back in the MRI machine. I don't know how long later it
was, but one of the techs came into the room and told me that the
radiologist wanted to talk to me. The tech told me that he would sit
in the room with Keeghan. I walked outside the room and this man
guides me to a line of chairs against a wall and we both sit down.
These were the first words out of his mouth:
"Ok Mrs. Barry,
we've already called the ER and let them know that Keeghan is coming,
and they have a room for him in the PICU."
He pronounced
PICU as 'pick-you' - I had no idea what he was talking about. I must
have had this completely lost look on my face because he looked at me
like I was an idiot and said:
"Mrs. Barry! Your son has a brain tumor."
I
stood up out of my chair . . . and I think I actually took a couple
steps away from this guy, like he was something evil . . . and I asked
where my husband was. The radiologist didn't know Mike was even there
with me, so I ran down a hallway to the waiting room but Mike and
Mackenzie weren't there. So I continued to run out the door to the
parking lot. Mike was standing outside by the car talking on his cell
phone. Maxx was in the car listening to music.
I can't remember
if I called him or if I just frantically waved. Whatever I did, it got
both of their attention because I remember Mike coming up to me and me
saying, "Keeghan has a brain tumor." He immediately asked where
Keeghan was and I told him he was still in the MRI. He then took off
running into the building. By that time, Mackenzie was standing in
front of me. She asked me what Keeghan had and I said again that he
had a brain tumor and then I tried to put my arms around her, but she
just backed away from me. I had to follow her and force her to let me
hold her. I don't think she cried though . . . she wouldn't talk to me
at all.
I grabbed my cell phone and called my
friend Tracey to see if she could come to the hospital to get Maxx.
Tracey wasn't home, but I talked to her husband. I told him what was
going on and I think he called Tracey (again, some of the details are
gone from my head!).
About that time Mike and Keeghan walked out
of the building behind me. Mike had obviously told Keeghan something
was wrong because he was crying. The next little bit is a blur for me
. . . I know we went back in the building and they made Keeghan ride in
a wheelchair to go to the ER. Mackenzie went to the waiting room I
think to wait for Tracey. I don't remember actually getting to the
little curtained-off area of the ER that they put us in. Thinking back
on it, it's like I was in a cloud. I just can't remember . . . it's
really weird. The next clear thing I remember was when a young female
airman came in to start an IV on Keeghan.
I have always teased
Keeghan about being handsome, calling him silly things like Hottie
McHottie, Ya Big Stud, etc. I do it mainly because he gets so
embarrassed and I love the way he turns all red and says, "MaMaaaaaa .
. . " I was trying to distract him when the girl was getting ready to
start his IV and keep him laughing, and somewhere in all of that I
called him a hottie. He laughed, and then this young airman says,
"She's right - you ARE a hottie." Holy cow, you want to talk about
embarrassed! Keeghan's face turned so red! I don't think he fussed at
all about getting his IV after that. He was too busy talking to this
girl!
After she left the room I really started teasing him about
flirting with older women. Up to that point, Keeghan had never shown
any interest in girls. Well, apparently, he HAD - just not in front of
his parents! Do you know that boy sat in the ER and, for the first
time EVER, told me about girls that he had crushes on? The first was a
girl in his second grade class! I was the room mother in that class!
I was in the classroom all the time, and yet he managed to keep his
crush on Katie a secret from me! He also told me about his current
crush, Marissa. It was hilarious! When I asked him why he never told
me all this stuff he said, "Because I've seen how you and Daddy tease
Mackenzie about all of her crushes and I didn't want you to do that to
me!"
I told you he was brilliant!
Tracey showed up to get
Mackenzie. Mike saw her first and I guess they both had a good cry.
He then came back to where Keeghan and I were and I went out to see
Tracey. Again, this is blurry . . . I just remember crying and asking
her to take care of my baby girl for me. She told me later about how
Mackenzie asked her, "Is my brother going to die?" Tracey - if you're
reading this - I still owe you so much for taking care of her that
first night. I can't imagine how hard it had to be to for her to ask
you that. You're amazing!
After Tracey and Maxx
left, Mike was able to join Keeghan and I. We were in the ER for
something like four hours I think, and us being us, we spent most of
that time being goofs. I don't know what it is about us, but even in
the worst of times, we can't stop being dorks. So at one point, there
was an old man on the other side of the curtain from us, and the man,
well, broke wind. Quite loudly. That was funny enough on its own, but
then Keeghan said (loudly), "DADDY!!!!! We're in a HOSPITAL!" He
apparently didn't realize it had come from the gentleman next door! I
think Mike and I were in tears laughing for quite a while after that!
We
finally got up to the PICU - which I had finally learned was the
Pediatric Intensive Care Unit - around midnight. Everything was still
such a shock for us. I couldn't figure out why a kid who had been
riding his skateboard just hours earlier needed to be in an intensive
care unit. They came in every 30 minutes all night long to do neuro
checks on him. We were all so exhausted, but nobody was getting much
sleep.
One of the neuro checks they did on Keeghan was to put
their hand on the bottom of his feet and then ask him to "press the gas
pedal", meaning push with his feet. It was about the bazillionth time
they came in to do that when Keeghan sat straight up in bed, leaned
over the side rail of his bed, and actually looked for the wheels to
the bed! I guess he was just so sleepy that he thought he was really
driving!
Mike and I spent the night on a couple of very
uncomfortable chairs, trying to sleep, but not being able to do much
more than stare at our boy and wonder what was next. I remember
staring at him sleeping and thinking, "I can't live without this boy.
Please don't take him from me." I also remember blindly walking and
crying in the dark empty hallways of Wilford Hall. I can still vividly
remember how creepy the basement there is at 4:00am!
The early
part of the next day was, yet again, a blur! It was a parade of
doctors in and out all morning. We met Dr. Harford, who would later be
Keeghan's oncologist when we got back from Houston. Mike's folks came
up from Corpus Christi the night before, so they were there with us.
About mid-morning Keeghan started crying and begging for his sister, so
I called Tracey. Maxx had actually gone to school that day. She
needed to be with her friends and be able to talk to them about what
was going on. But I had Tracey go get her and bring her to the
hospital. Once Mackenzie was with him, Keeghan was much better. He's
amazingly close to that sister of his. I was worried that she would
have a hard time dealing with the hospital, but she dropped in to full
nurturer mode when she got there. Nothing could keep her from him.
My memories of that day are in flashes . . .
.
. . standing outside Keeghan's room talking on Mike's cell phone and
when I hung up and turned back toward the room, I saw Dr. DeLaTorre
standing there. She walked up to me and gave me a big hug and we both
cried.
. . . Keeghan wanted to see his MRI. But then once he
did, for the first time really, he got scared and asked me to take him
back to his room.
. . . Mike coming back from seeing the MRI, sobbing, and wanting nothing more than to hold Keeghan.
. . . hearing someone say the words "possibly inoperable."
.
. . some doctor coming in, standing at the foot of Keeghan's bed and
just staring at him for what seemed like forever. He finally looked at
me and said, "You the mother?" I said yes, introduced Mike, and then
he turned and walked out. I later found out that he was the
neurosurgeon. I'm SO glad he wasn't the one to operate on Keeghan
because he had the bedside manner of a doorknob!
At some point,
someone told us that we were going to be flown to Houston to MD
Anderson Cancer Center. All night long we had heard them talking about
contacting different hospitals around the country, trying to find the
best place to send him. There was mention of Cedars Sinai, Johns
Hopkins, St. Judes . . . all I could think was, "Holy cow - this is
serious!"
I hadn't had a shower or a change of clothes since
the previous morning, so Mike went home, packed me a bag and brought it
back to me. I asked if there was anywhere that I could shower. Dr.
DeLaTorre took Maxx and I to one of the wards in the hospital - to this
day I have no idea which one! - and they let me use the shower in an
empty patient room. Maxx stayed with me the whole time.
Not
long after we got back to the PICU, there was an ambulance crew coming
in to get Keeghan. I didn't have any cash - Mike and his parents were
digging in their pockets to round up some money for me - it was
craziness. Then we were heading down to the ER entrance of the
hospital, where the ambulance waited. I hugged Mike and Maxx -
probably like I never wanted to let go - and then we were gone.
Keeghan talked with the ambulance crew on the way to the airport. He
told them about how he had never even had blood drawn until just a few
days ago, and now look at everything he'd had done!
Little did he know, eh?
At
the airport, we were loaded onto what I can only describe as the
smallest airplane I've ever seen in my life! There was room in the
cockpit for the pilot and co-pilot only, and it didn't look very
comfortable. In the back, there was a nurse and a tech sitting beside
Keeghan (who was on a gurney). At the foot of the gurney was just
enough room for me to squeeze in. I have no fear of flying, but I can
tell you I never - NEVER - want to ride in a plane that small again!
It took less than an hour to fly from San Antonio to Houston, but it
felt longer. In a plane that small, even the slightest change in air
pressure feels like major turbulence. I don't know how he managed to
do it, but Keeghan actually slept through the entire flight! It was
probably just nice to not have anyone waking him up for neuro checks!
There
was another ambulance waiting for us at Hobby Airport in Houston. This
time I had to ride in the front with the driver though - I didn't like
that much. But Keeghan did fine with it. We arrived at MD Anderson
and had no idea where we were supposed to go. Some woman was acting as
our "guide" and she took us to the Pediatric Ward. The nurses there
were less than friendly - the first one we saw said, "He doesn't belong
HERE." Eventually we found our way to the ICU and got Keeghan settled
into a bed. Now that the excitement of the air evac was over and he'd
had a little sleep, he was HUNGRY! So once he was admitted, we started
trying to figure out how to get a meal. It was at that point that Dr.
King, the wonderful attending physician in the ICU, came and got me so
that I could meet Dr. Weinberg and Dr. Wolf. So she took over helping
Keeghan get some food.
I went to the nurses station where Dr.
Weinberg talked with me about Keeghan's MRI. Again, I don't remember
the details of that conversation. I only remember that I told him I'd
heard someone in San Antonio say that the tumor might not be operable.
He said, "It is." Those were the greatest words I'd ever heard! I
also tried to give him a heads up as to what Keeghan is like (such as
telling him about how Keeghan had asked the doctors in San Antonio to
explain the risks vs. benefits of every different treatment option so
that he could make an informed decision on what treatment course he
wanted to go with). In other words, don't talk to him like he's a
ten-year-old, even though that's exactly what he is. He won't be happy
with you if you do!
Dr. Weinberg took me serious and always
explained things directly to Keeghan, rather than to Mike and I. I
can't tell you how much that one consideration made everything so much
better. Looking back over the past year, one of my biggest issues has
been with doctors and the way they talk to us and to Keeghan. Because
Dr. Weinberg was the biggest player in the first few weeks of Keeghan's
treatment, I love the fact that we genuinely liked him and the way he
dealt with all of us. He was even nice to Mackenzie! I've said it
before, but I have to say it again - we adore Dr. Weinberg!
Keeghan
and I got through that first night at MD Anderson by ourselves.
Keeghan, with the help of Dr. King, got his Asian Stir-Fry dinner - he
still remembers exactly what he ordered and how good it tasted!
Keeghan met Dr. Weinberg and Dr. Wolf - and really liked them. A good
start. I called Mike and told him that the tumor was operable - a huge
relief for all of us. When we finally got to go to bed that night, we
were exhausted but, for the first time in a little over 24 hours,
feeling less scared. I guess you could say we had our game faces on -
finally. We were ready to start fighting.
The next day was
Saturday, April 22nd. Keeghan was still pretty much asymptomatic, but
the tumor was in a location where it was blocking his cerebrospinal
fluid from circulating the way it was supposed to. It had been decided
that Keeghan's surgery would be on Tuesday, April 25th but he had been
on huge doses of steroids since he was first diagnosed. The steroids
reduced the amount of CS fluid so that it wasn't causing such bad
headaches. So the weekend was going to essentially be us in a holding
pattern. Mike had wanted to drive from San Antonio to Houston as soon
as Keeghan and I got on the plane to fly there, but I insisted that
they stay in San Antonio and get a good night's sleep before making
that drive. So they arrived in Houston on Saturday. Mike's sister
Donna - a.k.a. Aunt Baby - also arrived on Saturday. It felt good to
have them there. Keeghan was moved from the ICU to the Pediatric Ward,
which gave us a lot more freedom. We were then able to explore the
hospital, as well as take him down to the cafeteria to eat instead of
being stuck in the room.
On one of our random
outings around the hospital that weekend Keeghan said the funniest
thing. We were doing our normal act-like-dorks thing in an elevator
and Aunt Baby told Keeghan that he sure wasn't acting sick. Keeghan
looked at her and said, "I'm not sick. I just have a brain tumor."
There was a man on the elevator with all of us and he gave Keeghan the
oddest look. It was funny.
Mike's sister Lynda arrived on
Monday - the day before surgery. That night we all played bingo in the
PediDome - a big play room on the Pediatric Ward. There were so many
of us - Mike, Donna, Lynda, Maxx, Keeghan and me. Needless to say, we
won quite a few times!
It was a bit surreal though to be in that
room seeing all these kids that were obviously going through chemo. I
couldn't wrap my mind around the possibility that Keeghan would look
that way soon. The doctors had told us that they thought Keeghan's
tumor was a low-grade glioma, so we just weren't opening our minds to
any other possibility.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
April
25th - surgery day. What a day. Mike's folks arrived that day. Let
me tell you, if cheering sections could cure cancer, Keeghan would have
been cured on the spot! Mike and I went to the pre-surgery area with
Keeghan; we wanted to stay with him up until we absolutely couldn't go
any further.
Keeghan asked me to add something here - one of
the vivid memories for him of this day was the nurses running over
Mike's foot with Keeghan's bed as they wheeled him out of his room and
down to the OR. The things he remembers!
We were cracking jokes
- if any of you have ever seen the comedian Dane Cook, we were quoting
him quite a bit. I think we had Keeghan thoroughly embarrassed by the
time the nurses started prepping him. They gave him a medication
called Versed, which they said would relax him and also cause him to
not remember those last few moments before surgery. When they finally
had to take him away to surgery, he and I were both crying. Mike
probably was too . . . I don't remember. But I kept telling myself
that, because of the Versed, Keeghan wouldn't remember being taken away
from us. He says now that he does remember it "a little" but that
mostly he just remembers being scared. He also remembers seeing Dr.
Weinberg in the OR!
What I remember most about that moment was collapsing into Mike as soon as they took my baby away.
It
was a long day in the OR waiting room. But we had so many people there
supporting us that it made it much easier. Aunt Baby kept Maxx
occupied. I made a lot of phone calls to my family in California. We
were getting almost hourly updates on how Keeghan was doing. I'll
never forget that, during one of these "updates", the woman talking to
us said that Dr. Weinberg wanted her to ask how WE were doing! Mike
laughed and told her to tell him not to worry about us and just to
focus on Keeghan!
Finally Dr. Weinberg came to get us. I
honestly don't remember exactly what he said other than that Keeghan
had come through surgery just fine. He took Mike, Maxx and I to the
ICU to Keeghan's room. Mike and I were prepared for how he would look
- huge turban bandage, tons of tubes, etc. Poor Maxx wasn't though.
The OR nurses had wrapped Keeghan's stuffed dog, Spot, up exactly like
Keeghan - right down to the Foley catheter! Even seeing that didn't
prepare her though. She walked into the room, saw him in the bed all
bandaged up . . . tubes everywhere . . . and she dropped to her knees
on the floor and sobbed. It was horrible to see. But she didn't stay
there long. She was up and by his bedside a couple minutes later,
helping us talk to Keeghan. Nothing keeps that girl down for long!
The doctor wanted Keeghan to move his head, but he kept saying he
couldn't. Maxx was standing to Keeghan's right and she leaned toward
him and asked, "Was it scary?" Keeghan immediately turned his head to
look at her and, with a typical Keeghan-eye-roll and sarcastic voice,
said "Yeah!" After all that time of saying he couldn't move his head,
he sure managed to do it for his sister!
The next day - April
26th - was Mike and I's wedding anniversary. We spent pretty much all
day by Keeghan's side. The rest of the family would relieve us so we
could go eat, take showers, call family. But mostly we were there with
him. I don't know how we would have done it without all the family!
Keeghan was funny though - he knew it was our anniversary and insisted
that we go out on a date! So Grama and Grandad "babysat" while Mike
and I went out for dinner. We must have looked like the most scraggly
couple in the restaurant! But it was a nice couple hours - we did what
we always do when we get a night away from the kids . . . we talked
about the kids the whole time! About how amazing they were, and how
scary all of this was, and just how lucky we were to have them.
On
Thursday, two days after surgery, Keeghan got out of his bed for the
first time and into a special neuro chair. He was so proud of
himself! Then the doctors all came into the room and asked to speak to
Mike and I. They took us to some break room somewhere and told us that
the pathology of Keeghan's tumor had come back. Instead of being the
low-grade glioma that they had expected, it was Stage 3 cancer.
Malignant. Anaplastic Astrocytoma was the exact diagnosis.
My heart broke a little in that moment . . .
I
think Mike was the one that asked, "What now?" Dr. Weinberg said that
the best thing for Keeghan would be to go back in surgically and try to
get as much of the tumor out as possible. I can't remember how much he
had got out during the first surgery, but it wasn't near enough. I
asked, "When?"
"Tomorrow morning," he said.
We went back
to Keeghan's room to tell him. Mike and I were both in tears. Sobbing
actually. Keeghan started to cry when we told him, but then he pulled
a real Keeghan on us . . . he told all of us that we had to be strong
for each other and that he was going to make it through this. He said,
"I am going to beat this if I have to do it cell by cell." He kept
insisting that we all had to fight together.
Who
is this amazing kid? Seriously? He blew us all away. I don't think
there was a dry eye in the room - staff included. Keeghan just touches
people that way.
I know that I spent most of the rest of the
day in tears. I just couldn't stop. One of the doctors got me a
prescription for something to help me sleep. I never took it. I
couldn't stand the thought of not being 100% there for Keeghan. But I
did go back to the hotel - home base as it were - and spent some time
talking with Lynda and Donna. That helped so much. Also, somewhere in
that crazy day, Mike and Donna had talked to my brother, Brad, and made
arrangements for him to fly to Houston for the weekend to be there with
us during the second surgery.
April 28th - second surgery. I
never wanted to go through that feeling of having Keeghan rolled into
an OR - away from me - again. But there we were. There wasn't as much
joking as there was on the day of the first surgery. Things were
tense. I remember telling Dr. Weinberg to take his time and get as
much out as he could. Once Keeghan was in surgery, Mike and I walked
back to the hotel. Brad had flown in late the night before so I hadn't
seen him yet. I knocked on his door and when he opened it, he pulled
me into a big hug . . . I SO needed that. Not that I was lacking in
support. Mike's family was fabulous. But I needed someone that was
mine if that makes any sense. We stayed at the hotel for a short while
- I think I may have fit a shower in there somewhere . . . I don't know
- but then we headed back to the OR waiting room where the Barry's had
already taken up post. I don't think the atmosphere can ever be
anything but tense when you're in an OR waiting room. Especially at a
cancer hospital. But it was still definitely more tense that day than
it had been on the day of the first surgery.
Another little side
story needs to be told here . . . we were led to believe that Keeghan
would likely be in the hospital for weeks, possibly months, which would
probably have been true if we had decided to have him do his radiation
and chemo at MD Anderson. I was trying to think of ways to decorate
his hospital room to make it more like home. So I sent an email to
Keeghan's favorite author, Rick Riordan, who lived in San Antonio.
Keeghan is reading a series called Percy and the Olympians by Riordan.
I asked if I could buy a poster or t-shirt . . . anything really . . .
to put in Keeghan's room. I never got an email back from him, but in
all honesty, with the stress of finding out that Keeghan had to have a
second surgery, I had forgotten about sending the email.
While
we were in the OR waiting room during the second surgery, a doctor came
looking for us and asked if a gentleman had found us. I had no idea
what she was talking about. Then she told us about some man bringing
an autographed poster to Keeghan's room in the ICU. Instantly I looked
at Maxx and said, "No way! Maybe it was Rick Riordan." So this doctor
ran with us to an elevator and took us to the front entrance of the
hospital where we found Mr. Riordan waiting for a taxi. Maxx and I
spoke with him for a few minutes, explained the whole second surgery
story and thank him profusely for coming by. Apparently he had been in
Houston for a school appearance when he received my email. So he
brought Keeghan a poster of the cover of his new book! He also said
that he was going to be sending Keeghan an autographed copy of the book
and a t-shirt (which he later did).
When Keeghan got out of
surgery and the nurses were getting him all settled in, we were all
standing around the bed marveling over the fact that this author had
come to see Keeghan and left an autographed poster! Suddenly, clear as
a bell, no groggy voice or anything, Keeghan said, "Rick Riordan came
HERE??" Needless to say, that poster is still proudly displayed in
Keeghan's room!
Back to the story . . . this time when Keeghan
was finished in surgery, how he looked was not a shock. We just fell
back into the routine of caring for Keeghan. This time was harder for
Keeghan though. He didn't have any problems moving after the first
surgery. But after the second he had a definite deficit in his left
side. He couldn't move his left arm at first. Things started coming
back fairly quickly, enough that we knew it would come back. But he
required a lot of assistance during those first days. The good news
was that the post-surgery MRI showed that Dr. Weinberg had gotten the
majority of the tumor out. There was one small spot that he said he
couldn't get to, so we knew we'd have to keep an eye on that spot. I'm
the one that talked to Dr. Weinberg on the phone that night and the
thing that I remember most was that he sounded very happy with the MRI
results. That was what I needed to hear.
I don't remember if it
was that first night after surgery or if it was the next night . . .
one of them, anyway, Brad and I stayed with Keeghan at the hospital.
Again, talk about surreal . . . it was a great night sitting beside
Keeghan's bed talking with Brad. Here was my baby lying in a hospital
bed, having just had back-to-back brain surgeries . . . but Brad and I
talked about crazy stuff, like books we read as kids, music . . . just
"stuff." It was nice. We thought Keeghan was sound asleep too, but
for weeks after that night Keeghan would ask me weird questions about
the things Brad and I had talked about! So even though he appeared to
be asleep, he wasn't missing a word we were saying!
As always,
the Barry / Kelley dork humor reared its ugly head a few times during
those stressful days. Example: one of the first things Brad asked
Keeghan when he saw him was whether or not he got the Playboy Channel
on his hospital room television. That still cracks Keeghan up!
One
of Keeghan's favorite things to order up from the cafeteria was frozen
Italian ice. After surgery he was eating one and I casually made a
comment about eating slower or else he'd get a brain freeze.
Immediately I thought, "Oh, what a horrible thing to say to a kid who
just had brain surgery!" But Keeghan thought it was hilarious!
For
me, one of the greatest "sounds" I heard while in the hospital was
Keeghan crunching on Doritos. I don't know why that is such a fond
memory of mine - it wasn't like he had started chemo yet and couldn't
keep anything down. I think it was just because it was such a normal
Keeghan thing to do - munch out on chips - that the sound of it made me
smile.
Grandad worked with Keeghan and helped him learn how to
say ventriculostomy, which was the name for the drainage tube he had
coming out of his head for the first few days after surgery. He taught
him to say it so that he could ask the doctors to take it out! It was
very impressive!
He slowly regained strength on his left side. It was a big deal the day he was able to walk, albeit with assistance, around the ward!
On May 5 - two weeks after we arrived in Houston - Keeghan was discharged. We had decided to take him back to San Antonio, to the Air Force hospital, for his radiation and chemotherapy. The first night out of the hospital we stayed at the hotel in Houston with Mike's parents. Keeghan was finally able to see where it was that we went to whenever we left the hospital to go shower!
The next day we drove back to San Antonio. Maxx had left Houston after the first week we were there because she needed to go back to school. So Lynda dropped her off at Tracey's house on her way back to her own family. Tracey had been taking care of our cats for us. She'd also gone and bought a frame for Keeghan's bed and had moved it from upstairs on his bunk bed down to the dining room (because he couldn't handle the stairs yet, let alone climbing up the ladder of his bunk bed). She really was amazing! So the house was clean, and Keeghan's bed was all ready for him.
One of the strangest things that I found in the house when we got home was a white plastic grocery bag. It was just laying on the living room floor. In it was the candy we had planned on eating while watching a movie when we got home from Keeghan's MRI 15 days earlier! I think I actually cried when I found that . . . it really brought home to me how quickly life can change.
On May 9th, I started this website as a way to keep friends and family notified of Keeghan's progress. Little did I know it would turn into such an epic novel!