Hello all. What a busy week, and next week will be
busier. Trevor had to go in twice this week to get
blood and platelets, and then an extra time to get
that tube put back in. Next week we go in at least
Monday and Wednesday to the clinic, and then we will
go to Tucson on Tuesday to meet with the doctors down
there that will do the transplant. Pray that Trevor
makes the drive well. It's only 2 hours, but that's 4
total of sitting in his car seat, and it really hurts
his back and hips.
He has had two good days in a row. He has been
talkative, and as active as he can be while being bed
bound. He watching a lot of TV, but is doing so less
passively, and will get excited at certain parts of
shows. He also will look at books or play with cars
while watching the show, which is more normal for him.
His sense of humor the last couple of days has been
great. He is taking it in stride that he is having to
wear a diaper again. This morning while he was still
sleepy, I told him that I needed to change him because
I thought he had "stinky" in there. (Someday he will
just LOVE that I shared these stories with all of
you!) Without even opening his eyes he said in a very
annoyed voice, "Mom, it's just pee and I have toots is
all!" A few hours later when he needed to be changed
again, I told him that I'd be right back with
everything. He said, "OK Mom, I'll be right here!"
It was just the way he said it. He can't even sit up
by himself yet, so I pretty much figured that he'd be
still there when I got back. He was just teasing me.
He ate a bit more today, which isn't saying much. He
may have gotten to 250 calories by mouth, but I guess
every little bit will build towards him being able to
eat all his needs by mouth.
We started to put up a few Christmas things today. I
figured he would enjoy it. He is. We're putting
decorations in the back yard so that he can see them
from the living room, which is where he spends his
time. We have one of those couched that turns into a
bed, so it comes out very handy.
Thanks to everyone for all your support. Please be
praying for his strength to come back, for infection
to stay away, for his next round of chemo (in two
weeks), and for his appetite to return.

I know everyone is wanted to know how Trevor is doing,
but I have less time to write now that he's home. He
sure keeps us going! I'll try to write ever other day
or so. Be patient with me. You've been with us this
far, I'll keep you in-the-know as much as I can.
We had a bit of adventure yesterday morning. We woke
up to Trevor whining a little. When I went into his
room, he had thrown up a little. Not uncommon, no big
deal, right?? WRONG! The feeding tube that goes into
his nose and is supposed to be in his stomach, was
hanging out of his mouth! Talk about freaking me
out! And he was trying to put it out through his
month the rest of the way. I called the doctors
office and they told me what to do (We had to pull it
out through the nose. Icky, icky, gross, gross.)
Then after settling him down, and cleaning him up, we
had to take him to the clinic to get it put back in.
You can well imagine that didn't go over well. He
told me he didn't want his tube anymore. I told him
that he has to have it until he could eat enough. (He
can't eat much of anything, yesterday he said he
wanted McDonald's hamburger and french fries. He ate
5 fries, looked at the burger with absolute disgust,
and then pushed it aside. He did drink a whole carton
of chocolate milk though, so that's a start.) Anyway,
the nurse was about to start to put the tube back in,
and as you can imagine, he was screaming and crying.
Her hand must have gotten too close, because he
actually bit her pinky and drew blood. She of course
laughed it off, and told him that she'll bring it up
to him when he's older to embarrass him. Today has
been slightly better. Still no eating, but he's
starting to drink a bit. We have another day in the
clinic tomorrow.

It's been a fun and exhausting couple of days! Trevor
loves being home. The first thing that he wanted to
do on Sunday night was watch a movie on our bed. He
always likes to do that. When we put him in his bed,
he just looked around the room with a big grin on his
face. He noticed all his old stuff, as well as
anything that was different in the room. He stretched
out and just felt the space all around him. I'm sure
having his queen sized bed back felt wonderful after
all those days away. He just doesn't realize how long
it's really been. 7 weeks ago today, this whole thing
started. Seems like forever ago.
Yesterday, enjoyed a his time watching NOGGIN' (a
cartoon channel for any of you without kids) and
played a bit with cars. I think it was a little
frustrating for him to not be able to get up and play.
He is not able to walk or even stand yet. Too many
weeks in bed have made his hips stiff and some of his
leg muscles short. He will have physical therapy here
at the house starting soon. In the meantime, we have
a wheelchair and wagon to get him around.
He is still not really eating or drinking much on his
own. He just isn't hungry. All that time without
having to chew or swallow has taken its toll. He
tires of it fast. His taste isn't the same because of
the chemo. We hook him up to a feeding machine every
night, but even so, he has lost a little weight. They
gave us some higher calorie food today, so hopefully
that will help.
Today was so tiring! Trevor didn't sleep well last
night, and then he had his first outpatient doctors
appointment. He had to have platelets and an
ultrasound done on his hips. We were there for 6
hours! The good thing was that cancer-wise, he's
doing well. The chemo did its job for the time being.
They are very pleased with his progress. He did
start crying, though, as soon as he heard the doctors
voice. The doctor said that he has that effect on
people.
His dangers right now are infection and bleeding. He
basically has no immune system right now, so is prone
to anything. He is not bleeding right now, but his
clotting cells are not there, so a tiny little thing
could bleed for a long time. These are our
prayers...no infection, no bleeding, lots of good
sleep (for all of us), eating more on his own, and
strength in his legs.

HE'S HOME, HE'S HOME, HE'S HOME!!!

Well it's Saturday and we're still in the hospital.
Trevor's platelets are very, very low and he's having
nosebleeds. They will be giving him a bunch of blood
products today and hopefully we will go home tomorrow
morning. I hope, I hope, I hope!! Patience is
difficult, and I've kind of been in a fowl mood. If
we get to go home in the morning, we won't have to
come in for an appointment until Tuesday. Pray that
there won't be any reason to come in before that! We
won't know when the next time we will have to be
admitted, I guess he is expected to spike a fever and
then we'll probably be in for 10 days after that.
We'll see. We got a feeding pump to use at home, and
we learned how to use it last night. I also learned
how to give him his medications in the tube. The
nurses joked that I can come work here after this is
all over. It's amazing what I've learned.

Ok, everyone, now that I can think a bit clearer, I'll
explain whats happening. Trevor will probably be
going home either Friday or Saturday for a few days.
He will still have the feeding tube, which we will
learn to use so that we can run it at night and I can
put his medicines through it. The doctors just think
that unless he gets an infection (which he will at
sometime) there is really nothing more they can do for
now, that we can't do at home. He may only be home
for a few days, but it's better than nothing. I was
so shocked when they told me that they were even
thinking about it. It just shows that he is healthy
enough so that it ends this stay, and we will start
the "regular" cancer treatments of in and out of
offices and hospitals. It defiantly brings a whole
new meaning to Thanksgiving.
He has had quite a rough day today. He pulled out his
feeding tube (little stinker!) and it made him get
sick. So that on top of the chemo made for quite a
messy morning, if you know what I mean. He feels
pretty rotten. He's been sleeping pretty much all
day, so I guess he will probably be up all night.
Fun, fun. Maybe I'll get lucky, and he's just
catching up. If not, he can watch movies and I will
sleep! Happy Thanksgiving, all. God has given us so much!

OK, OK, Ok...My mind is going a mile a minute. I
found out today that Trevor MIGHT (emphasis on might)
go home on Friday!!! I know it may not happen, but
MAYBE!!! It's coming a bit sooner than we thought.
I'm both exhilarated and terrified all at the same
time. I was still thinking in terms of weeks. Pray
for it all! I can't believe it.

Hello all! Trevor had sort of a rough couple of
nights, so I'm exhausted! The chemo is making him
feel icky, and he is a bit anemic so he all around
doesn't feel good. Some good news though, they think
that they are going to be able to use the port
sometime in the next day or so. It is healing very
nicely, with just a little bruising around the area,
which is normal. That means that they will be able to
take the PICC line out of his arm, which is so great
because the thing is so annoying. He also took the
first step towards getting the feeding tube out of his
nose. Yesterday he showed them that he seems to be
swallowing a little bit of liquid, as well as a bite
of cracker. Today he will have a test done that will
show for sure if he's swallowing good. Pray that it
goes well, I want him to be able to have more than a
couple of ice chips.

Trevor had an EXCELLENT afternoon yesterday. He woke
up, as usual, in a grumpy mood. He didn't want to get
changed or anything. He had some nausea from the
chemo, but it wasn't too bad. We went for a ride in
the wagon all over the hospital. He liked the trains
and the cow statues. And when it got kind of noisy in
the hallway, he looked worried, but didn't cry or shut
his eyes. Shutting his eyes seems to be a protective
mechanism that he is doing. If he gets too
stimulated, he shuts them. Also, he has to have eye
drops every 4 hours, and hates it. So he keeps his
eyes shut a lot when a doctor or nurse is in the room.
When the doctor came in the room, Trevor shut his
eyes, and when he asked him to open them, Trevor just
squeezed them tighter! Dr. Williams just laughed and
said that he was glad that Trevor understood what he
said, even though he didn't obey.
Anyway, music therapy comes by almost every day. If
you know Trevor, you know that he absolutely loves
musical instruments, mostly the guitar because Uncle
Alex plays guitar and Uncle Alex is wonderful in
Trevor's eyes. :) Most days, he listens to the lady
sing but doesn't really participate. Well yesterday
she brought in an instrument that sort of looks like a
guitar, but it has a touch pad that makes all kinds of
noise. He really got interested in that, and when she
tried to trade it for a maraca, he grabbed it back
from her, held it like a guitar and kept playing it.
She went into the hall to bring him a guitar for him
to play. He saw it, grabbed the bed rail and tried to
sit up! It is the fastest and most purposeful
movement he has made for quite awhile. He took that
guitar from her and held in correctly, lifted his head
off the bed (and kept it mostly up for about 15
minutes.) and he played that guitar with her for a
long time. I wish I could explain the happiness on
his face. After awhile, he put the guitar down and
she gave him a drum. His instructions were to play
the drum fast when she sang fast, to play the drum
slow when she sang slow, and to stop when she stopped.
He did it all! I about cried. There were nurses
standing in the hallway watching him in amazement. He
started to get really tired and she sang a goodbye
song. He clapped his hands and waved goodbye at all
the correct times. Then about an hour later, he
finally let himself fall asleep. He was just so tired
from all of that. He was the talk of the whole
Oncology ward. They are all very proud of him. And
so are we!

Sorry the updates have not been as good this week, but
we were have problems with the email.
It's been a full week. Trevor continues to make
improvements. His liver biopsy went well, and he
didn't have any complications at all. We got the end
results this morning, and they are GREAT. The concern
had been that either there was damage to the liver, or
that there was a big bunch of leukemia cells in there.
It was neither. His liver actually has a bunch of
bone marrow cells in it! I don't fully understand it,
but here goes. At some point during either gestation
or as an infant, your liver makes bone marrow cells
before (or along with) your actually bone marrow.
When Trevor's bone marrow was wiped out (or almost
out) by the 1st dose of chemo, his liver decided to
take over the job. I guess this is a good thing.
Everyone around here seems to be very pleased. It
means that the liver is healthy, and should continue
to be so because there is not any more leukemia cells
there, than any where else. Again, I think that's
how I'm understanding it.
One thing that didn't get posted in our mess of email
problems, was that Trevor had a CT scan a couple of
days ago. It showed that there are spots on his
brain. At the time, they weren't able to really tell
us more than it probably showed that he had some brain
damage from when his oxygen was so low when he was on
the ventilator. They basically said that he could
have some "deficiencies" in his brain, but aren't able
to say what exactly that means. It does tell us why
he has had such a hard time coming back to us, and is
having to relearn everything. We still don't know
what that means, whether that means he will get all
the way back to "normal" or not. We'll see, but any
Trevor that we get is better than no Trevor at all.
What we did hear today is that they expect those spots
(or infarct ions as they call it) to shrink a bit in
the next CT scan. Praise God!!
All of these thing mean that he is healthy enough to
have chemo, and they started it last night. I never
thought that I would be happy for my child to have
chemo, but I am. For a bit, they didn't think he
would be able to take it, which meant letting the
cancer take over again. It's very good.
He has been able to eat a little bit of chocolate
pudding in the last couple of days. Not much, but
it's a start toward getting the feeding tube out and
being able to eat normally.
Our biggest prayer focus now is that the chemo goes
well, and he doesn't have any complications from it.
Also, he is still have some bleeding problems. The
port that they put in last week started really
bleeding yesterday and they can't use it for now.
They had to put another PICC line it, which is a
special IV in his arm, but it's not as nice as the
port would be. His poor little chest is so bruised
and swollen. Thanks for all the prayers and support.
LOVE YOU!!

Trevor had his liver biopsy this morning. That went
fine, and so far he's not having any complications.
We should know a few things about the results tomorrow
sometime. He has just been sleeping most of today.
We have HUGE praise to tell you all. Last night, (I
wasn't here) Brian was reading Trevor a story. He
started getting a bit restless, and Brian asked him if
he wanted him to read another book. Trevor said,
"NO!" and Brian and his Mom got all excited as asked
him if he wanted a movie. Trevor said, "YES!" Then
later on, Brian did bedtime prayers with him and he
said "amen" and then told Brian goodbye when he left.
His voice sounds very raspy, and pretty quiet, but it
was there!!!

Sorry for the delay in updates, it's been a busy
weekend. Trevor is doing pretty good. He has become
a bit more alert to what is going on around him. He
is not talking, but is crying appropriately. Last
night it was like a light bulb turned on, and he
realized where he was and he was overwhelmed with
emotion. He cried for quite a while, but it seemed
like he just needed to get it out. He got to go
outside with my sister this morning, but kept his eyes
closed most of the time. He seemed to be content just
listening and feeling the stuff around him. His lungs
are GREAT. The nurses and respiratory therapists are
very excited to not be hearing such noisy lungs, and
he is taking wonderful deep breaths. His liver is
still enlarged, and they wanted to do a biopsy this
morning. They wanted to do a special one that
minimizes bleeding, but discovered after all the
planning that they didn't have the correct equipment
for a child. They called all around the country and
couldn't find it. So they are going to have to do it
the "old fashion" way, and just use a needle through
the skin. There is a risk for bleeding, and
ultimately surgery to repair the bleeding if it
happens. We are just going to trust that there won't
be any bleeding, and we know that HIS hands have been
on Trevor through all of this. If all goes as planned
with the biopsy, Trevor will start his next round of
chemo Wednesday or Thursday.

I noticed there hasn't been an update on the website recently, sorry! I know a lot of people have been checking the site often, so I'm sure its a bummer to go a few days without an update.

Trevor is focusing a lot more quickly now with his eyes, and feeling objects that we give him with his hands, but he still hasn't said anything to us yet. He still seems very hoarse, even when he cries you can barely hear any
sound. I would say he seems a lot more aware of his surroundings but doesn't seem to be himself yet.

His medications are keeping him comfortable for the most part. He's been put on a dosage and timing schedule that has reduced his withdrawl symptoms dramatically. Now the only time he really completely disconnects into withdrawl is generally just a short time (perhaps a half hour or so) before the next dose.

His lungs seem to be doing very well, the doctors say they sound much more clear and he's only needed a little bit of oxygen when he falls in a very deep sleep. Even then his saturation numbers are still pretty good for a very sick kid (high 80s), but a little bit of oxygen blowing by his face helps him stay in a range they're more comfortable with (over 90). During the day, when he's awake, he's been maintaining a good level without oxygen, even when stressed out by diaper changes or other sorts of things that have to be done.

He's been sleeping fairly well through the night. Brian stayed with him last night and he slept for most of the night after falling asleep about 1am.

He is getting full nutrition through his feeding tube, we're very happy that he's at a level that will sustain him so that he doesn't require intravenous nutrition.

Trevor had a test on Saturday to check his bone marrow. The results so far are inconclusive, he seems to have normal cells in both his marrow and periphery, but the results of a genetic test are needed to determine for
certain whether he still has any pre-cancer cells or not. Regardless of the results, he'll begin his next course of chemotherapy very soon, probably Monday. All the cancer has to be eradicated or eventually it will come back.

The doctors are concerned about his liver - its not reducing in size as much as they would like. They think it may even have enlarged some since the end of his first course of chemo. They're trying to figure out if thats due to
cancer cells or some other process. We're praying that the liver is undamaged, because he can't afford that to be compromised and fail. If cancer cells are the cause then the chemo should help.

Thanks to everyone for your amazing love, kindness, and prayers - its really been helping us through this. Please be praying for the results of upcoming tests and Trevors liver, we still need Gods amazing healing!

Hey everyone, it's been a day full of information and
It's very hard to process it all. He will be going to
get a port put in tomorrow (Thursday) at about noon.
A port is put in by an actual surgery that basically
gives permanent (or basically permanent) access to
give meds and take blood. That way he won't have to
have IVs. It will sit under his skin so that when
it's not in use, all you will see is a bump in his
chest. At the same time as they are doing that, they
will also do another bone marrow tap to check for the
leukemia. His blood tests look good, but we do have a
big concern. His liver and spleen are starting to
enlarge again, especially the liver. They had
actually gone down quite a bit, but have gotten bigger
again. They really aren't exactly sure why. It may
be the leukemia. They are going to be watching it
carefully (ultrasound in the morning), and may have to
do a biopsy. We don't want that, because it can cause
bleeding and his clotting is not good. Please pray
for the surgery, as in any surgery, bleeding is a
problem, but especially for him. Pray for his liver
to be restored, because with a bad liver, the chemo
(which may start up again soon) can cause more
problems. Please pray for the detox, it's not fun and
it's almost harder to see him awake, but not aware
than it was for him to be asleep on the vent. It's
like it's him, but not him. I am finding it hard to
have patience though all of this.

Trevor had his first semi peaceful night since coming
off the ventilator. He is going through detox from
all of the drugs he's been on this past month. We
also found out yesterday that we're looking at about a
month until the detox is done. They have to do it in
a controlled manner, so it will take awhile. He still
can't talk, partly from the bruising in his throat and
partly because of the medications. He is focusing his
eyes a lot better, he's looking more at you than
through you. He basically has to relearn how to
control all of his muscles again. His coordination of
his arms and legs is getting better. It doesn't seem
like flailing, more purposeful movement. It's all
very hard to take, because I want him back to normal,
but I know it will take awhile. And there is always
the worry that something will be different in him.
Can you believe that this all started a month ago? 4
weeks ago today is when we first went into Urgent Care
thinking he had a bad flu or cold or something and was
dehydrated. Before that, there was really not much
warning. I have to say it's a little depressing. A
month used to seem like sort of a long time, but this
past one seems like it started both yesterday and
years ago, all at the same time.

Well, the oncology unit feels like a hotel room
compared to the ICU. It was almost bizarre not having
a nurse, respiratory therapist, or someone else coming
in every 15 minutes. It's amazing think that just
last week he was still considered critical, but
stable. After so many days of "baby steps" it seems
like the last few have been a leap over the Grand
Canyon. He oxygen is good on room air, meaning he has
no respiratory support at all. He still needs to
cough some of that stuff up, but that will clear in
time. His lungs have some scar tissue, and he is at
high risk for RSV, pneumonia, and asthma. But I'll
take it! Anything is better than the respirator. He
didn't really sleep last night, but that's to be
expected while he is going through the withdrawals.
He is so tired, yet can't stop moving, and it's
absolutely exhausting to watch. He still can't talk
because of all the trauma the vent tube did, but
again, that will heal. I'm not really sure he would
be really able to talk much anyway, because he is
still having the affects of all these drugs. He is a
walking ad for not doing drugs. This has got to be
miserable. The only comfort I get, is that they have
some other drugs that are making it a bit better. His
platelet counts are getting better, he only had to get
one bag last night, and will get another one this
morning. We are seeing a bit more of the Trevor
stubbornness. Last night he pulled his feeding tube
out! I guess it's pretty normal, but it sure
surprised us. They just put another on in. Overall,
more improvements. God is good, and many of you have
been His hands and hearts on earth. I have felt very
loved, in so many ways I can't even count it. Your
gifts, cards, emails, and phone calls have been
wonderful. I get such a boost of energy every time I
hear from one of you. It really helps me getting
through all this.

Carrie just phoned to let me know they have moved Trevor out of the ICU and back to the Oncology department. He is breathing on his own with no oxygen support at all. This is a very good thing and shows the doctors have a lot of confidence in his progress. The room is also larger and much more comfortable! the contact information has changed for the Hospital, so please check the column to the left for the new room number and phone number.

Hello all, it's been an exciting day. The tube is
out!! So far, so good with his respitory stuff. He
is semi-awake, but not really aware of what's going on
around him. He doesn't focus on anything, and he is
kind of wiggling around in the bed. He's been on all
that stuff for so long, and is still getting pain
meds. So it will take awhile for it all to clear from
his system. I'm hoping he can get clearer in the next
few days. I got to hold him a little bit while they
changed his sheets. He didn't snuggle as well as I
would have liked, but I think he felt a little
insecure being out of the bed for the first time in
almost a month. Please pray for continued healing,
and a clearing of his head. His eyes are very
bloodshot, but will get better.

Hello all. It has been a very exciting day. They
have turned down his vent 3 times today, and every
time he has responded well. There's a lot of mixed
views. The respiratory therapist says she thinks
he'll be off the vent TOMORROW!!! but the ICU doctor
says more like Sunday. This of course is if all the
tests stay the same or keep getting better. I'm
feeling both excited and nervous at the same time.
There's always the possibility that they remove the
tube, and he doesn't do well so they have to put it
back. I wouldn't want that to happen, so I'm going to
be as patient as I possibly can (it's HARD!) and leave
it up to the doctors. I know that God has been
guiding them through all of this, and He won't stop
now. Trevor was very cute today, he was yawning and
trying to stretch and then falling back to sleep. He
also is showing a little of his stubbornness by making
things difficult for his nurse. They often need to
suction his lungs a little, which makes him gag and
cough a little. Today when they tried to put the tube
down, he clamped down his mouth so they couldn't get
it down. After a little talking to and coaxing, he
relaxed and let them do it. I hope that the next entry
will be to say that he is off the ventilator, but only
God knows. Pray for a good night! ( and that we can sleep)

We had a very exhausting day yesterday. Trevor
started the day awake, fairly alert, and pretty calm.
He spent a few hours just looking around at us, and
not that he was comfortable exactly, but he wasn't
upset or struggling. After awhile he got tired, and
just like any kid, didn't want to fall asleep. He
would close his eyes and seem like he was totally
asleep, and then all of sudden have both eyes open and
both arms moving around. He spent almost 6 hours
taking little catnaps, and then squirming around and
crying a little. He looked like he was not
necessarily in pain, but not comfortable. It was
awful. On one side, I'm glad that he is strong enough
to sort of fight a little, but it's like doing to
much, to soon after the flu. The doctors and nurses
tried just about everything. It's a good thing for
him to move around, and breath himself (which he's
doing a lot of, with the vents help) but they don't
want him so awake he is fighting. The problem is,
he's kind of hooked on all the drugs. He's got a big
tolerance, and is actually going through withdrawals.
They don't want to up the meds anymore, since they do
want him to wake up some. What a balancing act. It
was so awful for me. There was just nothing I could
do to make him feel better. He finally fell asleep,
and stayed mostly asleep for awhile. It really is a
good thing, and they all say that this is normal, but
it's completely exhausting and terrible to see.
Some other good things...he's completely off the IV
nutrition and completely being fed with the formula.
They have been able to stop one of the antibiotics.
His chest xray is getting clearer. His liver and
spleen are starting to shrink. And this is the big
one...they say that if all keeps going in this
direction, he will be off the vent in a few days!!!!
I'm trying so hard not to get my hopes up, but that's
what I want so bad!! PRAY, PRAY, PRAY. I know that
we are in for more days like yesterday, they've told
us so, but I would rather hear him cry and maybe be
able to hold him, than this silent squirmy struggle he
is having. Thank you all for all of your support.
Every card and email is such a blessing and pick-me-up.

Carrie just called me with an update. Trevor has been awake a lot today, around 2 1/2 hours. Meaning his eyes were open and he was reacting to what was going on around him. Apparently he doesn't care for the vent or feeding tube much and they could see him playing with it with his tongue. Carrie and Brian both are spending a lot of energy to comfort him while he's awake.

The latest chest x-rays look better and they are moving him completely to tube feeding and stopping the intravenous nutrition. All and all things continue to progress and their is hope he will be off the vent 'soon'.

A fairly good day. The tube feeding is going well, so
they think in the next few days that they may take him
off the IV feeds and put him on tube feeds only. He
had no fever all day yesterday, until evening. Then
it when up and he was throwing up a little. They
think that it may be a reaction to a medication, but
they will give him some antihistamine and Tylenol to
keep it from happening again. He has been awake a
little today. He got his eyes open and everything.
He seems to be a bit confused and little worried, but
that is to be expected. The nurses want us to keep
telling him what's happening over and over. They have
started some steroids to help with his lungs. His
immune system is in the VERY early stages of coming
back, so in a few days he may be able to get off of
the antibiotics. Little steps. Patience is a virtue.

Hello all. Sorry I didn't get this out earlier. No
news is generally good news, but in Trevor's case it
means things have stayed about the same. They got the
feeding tube in the correct place, and so far so good
with the feeding. He threw up last night, but since
the food isn't going into his stomach and that's not
what came up, that was from other things. They think
if all goes good in the next couple of days, he will
get off the IV nutrition and just have the tube feeds.
HUGE PRAISE! As of 5:00, he has not had any fever
today! HOORAY!! The doctors have still said that
there hasn't been an infection, but they still played
around with the antibiotics just to be sure. Who
knows if the fever was caused by infection or just a
response his body was having from all the trauma he
has been under. Since all the paralyzing drugs are
turned off, he has been able to move around a little.
The nurses where changing him today, and he really
didn't like it. His face got all squished up, and he
even had a little tear, but he was still sedated
enough to not be able to open his eyes much, if any.
For me it's better to see him cry a little than to
just lay there and do nothing. He also wiggled his
arms and legs a bit. Small little steps, but they
seem to be in the right direction.

We had some good news about the CT scan. There's no
sign of infection. It's a little frustrating, though,
to not know what is causing the fever. The doctors
say that this happens all the time, though, and they
will just keep treating the fever. The scan did tell
us some things that we really knew, but it confirmed
it. His liver and spleen are quite enlarged, and he
needs to poop some more. :) They have had the
hardest time placing a feeding tube. It needs to be
placed past the stomach into the small intestine, but
after a number of tries by many different people, it
keeps looping up in his stomach. It seems as if even
is stomach is stubborn. If it's in the stomach, it
sort of works, but after a bit, the food backs up and
comes up is nose. ICKY! So here are our prayer
requests: For continued healing for his lungs,
spleen, and liver. For correct placement of the
feeding tube. And as funny as it sounds...for him to
poop. That would relieve so much pressure in his tummy.

Trevor is doing a little better today then yesterday.
He's still fighting the sedation, but they've found
something that helps at least a little bit. He still
has this persistent fever, and all the tests don't
seem to be finding out why. They are taking him for a
CT scan soon to see if they can spot something. It is
a major ordeal just to turn him to his side, I can't
imagine what it's going to be like to move him
upstairs, into the machine and everything. Good
thing, though, this is the first time in over two
weeks where they feel he is healthy enough to move.

Trevor had a bit of a rough day today. After being
sedated for so long, he is needing more and more of
the drug to stay sleepy. He got very agitated today,
for a long time. He was taking too many breaths, to a
point that he was almost hyperventilating. He's just
too aware of what is going on around him. In some
ways, seeing him move is very comforting, but to see
him fight and struggle is very hard. At one point the
nurse said that they had given him enough of the drug
to drop a horse, but he was still moving. They
finally got a new drug, and within a few minutes, he
was asleep. But after all of that, his oxygen
saturation was down to 82. So they took a chest xray
to make sure that there was not a problem. No huge
problem, but after yesterday being dehydrated, he
actually got too much fluid and it was starting make
his lungs "wet" or have a bit of fluid build up. I
guess it will a delicate balance of too much fluid or
not enough. Keep praying, we feel them all!

Trevor is still about the same as this morning, but
they have been battling a fever all day. It's only
about 102, but in a kid with no immune system, that is
not good. They have been putting ice packs on him to
help bring that down. Also, after so many days of him
having too much fluid in him, he is now peeing too
much so is dehydrated a little. They stopped all that
medicine that was making him pee, so they are hoping
that will help. He is still fighting the vent a lot,
even with all the sedation. They may have to add a
bit more but they seem to not want to totally paralyze
him again. Pray for the fever, as well as the
dehydration. Also, pray for wisdom for the doctors.
I'm trying not to get my hopes up, but I think that
Trevor is telling them that he wants off that
ventilator by all the fighting he's doing with it.
But then again, I've only had a crash course in all this.

Good morning everyone! (Although it's almost
afternoon) Trevor has had another good night. All
his numbers are normal or close to normal. They
turned off some of the paralyzing drug, so we have
seen a little bit of movement. Mostly in muscle
spasms in his feet, but he did move his eyebrows a lot
when I was talking to him. It's the first movement
I've seen from him in almost two weeks. They are
continuing to bring the ventilator settings down as
his lungs are getting stronger. I'm trying not to get
my hopes up, but I want him off that thing NOW! It
still may take awhile. They had to remove the PIC
line, which was the line they put into his arm that
went to into his heart. It got all clogged. They put
in a different line into an artery in his leg. He had
been getting a little bit of food into his stomach a
few days ago, but they stopped that because they
didn't know if it was being digested. But apparently
it was because he pooped this morning. Never thought
I'd be so excited about that, but he hasn't gone in
two weeks. Little victories are still great. I hope
that they will start the feeding again soon. He has
lost a lot of hair. What's left looks all fuzzy and
blond. I will get a picture and post it tonight. He
is such a popular little boy around here. Even people
who aren't his nurses or doctors are stopping by to
see him. He is a miracle in every sense of the word.
There were a couple of days that he should not have
made it through, or a couple of times the doctors
said, "We're going to try this, but it may not work."
and then it worked. God is so good, He has been
giving us the right doctor at the right time and
guiding them. All of your support as been amazing.
We are truly blessed. Love you!

Another pretty good night. I wanted to get this out
earlier, but I slept at the hospital, so I didn't get
around to it. His lungs are still healing, and there
is less air outside the lungs than there was. That
means that the places that were leaking the air are
healing. This ventilator seems to agree with him.
They have not turned the pressure down, but the oxygen
that he needs to sustain his own levels in down to
55%. They said when is is tolerating about 40%, they
will start to turn the pressure down. He does keep
trying to breath on his own, and they have to give him
an extra shot of paralyzing meds to keep him from
fighting it too much. I keep telling him that he
needs to rest and let the machine do it, but you know
how 4 year olds are. They've got to do everything
themselves. He does have a slight fever, which is a
big worry. It's about 101. He's getting more
antibiotics and Tylenol, so we have to pray that it
works. They don't really know where the infection is,
but he must have one somewhere. His hair is
starting to thin a little from the chemo. You can't
tell all that much just to look at it, but when I run
my hand through it, some comes out. It's kind of sad,
but it's a small price to pay for a healthy kid and it
will grow back eventually. Plus, I think that a
little bald head will be easier to keep clean in the
hospital! Right now, if they want to wash his hair,
they have to get a bunch of towels down so the bed
doesn't get soaked and they have move tubes and wires
around. Without the hair, all they have to use is a
wash cloth! :-)
I am in the process of finding out more about how you
could donate platelets (which is what is big need is,
he is going through 3-4 bags a day) I've had a few
people ask about it. I'll let you know when I know.

Everything looking good today. The vent switch is
working. As of this morning, they were only having to
use 70% oxygen to keep his blood oxygen level at 92,
which is AWESOME!! His carbon dioxide level is much
better, but still a little high. He had a little
fever last night, which was a big fear since he had no
immune system right now. They gave him a big shot of
antibiotics and some Tylenol (Which I always laugh
about, because it's just regular baby Tylenol, not
some special stuff. If that's not an advertisement
for it, I don't what is.) Right before 11pm last
night, he was back to normal and hasn't had another
fever. Thank you God! His lungs are continuing to
heal. Marissa, his night nurse last night, said that
every time she listened to him, it seemed to be
opening up a little bit. YEAH!
My dad spent the night with Trevor last night, and
around midnight the nurse gave him a note from Megan
Bowman. If you have ever done childcare at
Cornerstone, you know that her son Jake was the best
baby ever! He is now two. I don't know much, but he
had a head injury and was at Banner Desert. I'll try
to find out more, but add him to your prayers.

I'm sure Carrie will have an update for you latter today, but I wanted to let you know that Trevor is back on his stomach and is reacting well to the new machine. His carbon dioxide level has come down some and his oxygen level has stayed up after some initial fluctuations after the switch.

We switched to the regular vent today. I never
thought I'd be so excited about him being on a
ventilator. This is a step in the right direction.
No real change in numbers for now. We need to pray
for his lungs to get better. He has a very large
build up of carbon dioxide and needs to get rid of it
at the same time keeping the oxygen up.

No real change for now. The ICU doctor last night
voiced his lack of patience last night by saying, "I
just want to fix it! You would think that I would
learn by now, that I can't just fix it!" I have to
say that I feel the same way sometimes, but it's not
our timing but God's and Trevor's. We can be
patient. All the doctors and nurses really seem to
get attached to the patients, and have fallen in love
with Trevor. They say that they can't wait to see his
personality.
FYI - A few people have wondered who Jeremy is.
Jeremy is Brian's best friend, and is putting the
website together for us. Trevor calls him Uncle Jer.
We love him lots! (Yes Jer, you have to put that in
too!)

Trevor is so much better. He actually looks as if he is sleeping, but with lots of tubes and IV's. It is hard to believe he is the same boy. His counts are better. He is still on the oscillator respirator, but hopefully in the next few days they can wean him to the other one. They placed a feeding tube in yesterday, he has only been getting IV nutrients so
far. They started a few drops of formula at a time, and far all they can tell, he is digesting it well. I had a choice between vanilla and strawberry, and chose strawberry. He would want chocolate, but it's not like he can actually taste it.

Thank you for all your support. I love hearing from you all. Pray for continued healing in his lungs, his blood counts (his platelets are still very, very low) and pray that no infection will try to take hold.
This picture I have is was taken yesterday. He looks SO much better today, so I will try to get one and post it tonight or tomorrow. What's amazing is that I thought that he looked "normal" yesterday. It's
better today. The doctor that is on call today, hasn't seen him for 2 days, and was floored with the change.

Below is a picture of Trevor's room I took today. Their are a lot of machines delivering medications, others helping him breath, and others monitoring his vital sings. We are so blessed to live where all this technology is available.

Some ground was gained today. The ventilator has been dialed back slightly as well as the oxygen percentage. They also decided to suspend Chemo for a while to allow his body to concentrate on healing itself.

Trevor had another close call tonight. They had turned him on his tummy to help with his lungs. His lungs were bleeding, so it has something to do with how the gunk gets thick in the lungs so it can't get enough oxygen so turning frees that up. He did really well all day like that, but started coming down a little in the evening. They made the decision to turn him again and he did not do well. They had to bag him by hand for almost an hour, every time they tried to put him back on the vent, he dropped down some more. They finally decided that they could try a different type of ventilator. I really panicked because the last time they put him on that type, it didn't work at all. They hooked it up, and so far so good. With any ventilator, there is a lot of risk of lung rupturing. We need prayer for that, for bleeding , and he needs to pee all the poisons out. That is part of the problem, all the cancer cells are breaking down and releasing poison. His white blood cell count was 77000 the first day and as of today they are about 4000! The cancer is going down, so yeah!

I'm writing this at the airport and I'll post it once I find some internet. Trevor took a turn for the worse last night, but I don't have many details. He seems to be responding somewhat to being on his stomach now though. The doctors and nurses are doing all they can to help. I'm heading to Phoenix now so I can be with Brian and Carrie. Your continued prayers and support are greatly appreciated.

Hello everybody, and thanks for all your support. We
have been so blessed by it all. God has given us
wonderful friends. We appreciate all the gifts, but
please don't send plants, flowers or latex balloons.
They can't be in his room. I'm posting a few more
recent pictures. They look pretty bad, and believe
me, he looks worse in person, but someone said they
wanted to see how he is every step of the way. And
since you all can't come over (the nurses would kill
me!), it will give you a better idea of what Trevor is
up against. The first one was taken yesterday, before
he really started to swell up from all the medications
and extra fluid in his body. They use his stuffed
animals to prop up some things to make him more comfortable.

We got some good news today. He seems to have hit a
plateau finally. After 4 days of what seemed like a
downward spiral, we really needed that. They said
that it may still move up and down a little, but they
really feel that he will stay on the plateau for a
time (how much time, who knows?) and then he will
start to improve. They also said that his white count
has improved with the 2 rounds of chemo that he has
had.
They don't really have a guess how soon he will come
off the ventilator, but they do think he will be in
PICU for at least 7-10 days. Then we will be in the
Peds Oncology Unit again until he is well enough to go
home. Pray that we can move soon. Not only because
it would mean he is a little better, but because the
Oncology rooms are so much more comfortable!
We're in for the long haul. We don't expect him to be
home for about a month. Then there will be other time
periods in the hospital, mostly likely. I don't know
how we're going to pay for it all, but we'll figure it
out! God always provides.
They other thing the doctor said was that they expect
him to live, and if that changes then will tell us.
That is comforting to know that they aren't secretly
thinking that he's not going to make it.
I LOVE YOU ALL!

Trevor had a bit of a rough night last night. No big
changes either way. Our biggest worry right now is
his lungs. The doctor keeps using the words Pulmonary
Edema. His lungs are full of fluid which is making it
hard for the oxygen to penetrate his blood. At last
report, his pulse oxygen was 85, and it should be 95
or above. But it has been as low as 80. They have
put the oxygen on 100% and added nitrous oxide, which
is supposed to open up the air sacks of his lungs. I
believe nitrous oxide is "laughing gas" so I guess
even though he is sedated and paralyzed (by drugs) he
must be having a good time!
Trevor is surrounded by a wonderful staff of doctors,
nurses, and techs. They talk to us, hug us, and
reassure us. The ICU doctor sat in Trevor's room most
of the night instead of going to sleep so that he
could respond to anything right away. Since Trevor is
very drugged, he doesn't respond to anything, but
everyone still talks to him like he does. The nurse
last night cleaned him up a little, wiping his mouth,
nose, eyes and body down. She talked to him the whole
time to tell him what she was doing so that he
wouldn't be scared. They say that he is aware of what
is going on, but won't remember it long term.
THANKS YOU for all your support. Keep the emails
coming. Even though I can't respond to them all, it
really helps to read them. It is a wonderful
distraction. We love you all!

I know that many of you know me, but not my son. I
wanted to put a couple of pictures up for you to see.
I love pictures, and even in this time I have to take
them. The one of the 3 of us was taken last month at
a baseball game and then other one was taken
yesterday. He is on a ventilator now and has begun
chemo. THANK YOU, for all the support

I just spoke to Carrie's parents who are with Trevor now. Brian and Carrie are heading home for a quick trip to regroup themselves. The genetic test came back with a diagnosis of AML type leukemia. This is treated with Chemotherapy at first and he should be getting his first treatment this afternoon. Still not the best diagnosis, but slgtly better then JMML. Your continued prayers and support are appricated.

From Brian:

The treatment is called MRC 12, meaning that this treatment has already gone through 12 iterations