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03 November 2007 9:44 PM
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On Halloween we found out our precious son, Charlie has
cancer. It has spread
through his abdomen already. He already had one surgery
Thursday. He's
back home now. We find out more on Tuesday. I don't
know how hard it will
be to get rid of, but I will know then.
Please
pray for Charlie. They are planning to put in a port
for chemotherapy later this week. I am absolutely
desperate to have him well again. He is only 15 years
old.
Mary
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07 November 2007 2:19 AM
We found out that there is a 99% chance
that Charlie's cancer is a mixed type of germ cell which
means that it is one of the easier to cure types of
cancer. Is that great or what? GOD IS SO GOOD! The
final pathology report was not yet in, but the doctor is
pretty sure of the type, based on his tumor markers and
other information she has. Charlie's cancer has spread
to a multitude of lymph nodes surrounding his left
kidney, which explains the pain he has in his side and
his back. There is also a spot on his adrenal gland.
His other organs appear cancer free.
I know it might seem so strange that I would be happy at
a time like this, but you have to understand that I
didn't know what we might be facing, and while the
prospect of chemo isn't exactly risk-free or easy to
face, it is a PIECE OF CAKE compared to having to hear a
doctor say I would be saying goodbye to my baby. And
yes, that big old strapping, six foot tall, fifteen year
old young man IS my baby. <G> I knew I would NEVER
accept "incurable". My only purpose today was to find
out just hard we had to dig in to win. I am glad to
say, the fight, at least for now, doesn't look like it
will be quite as difficult as it might have been.
We have a few days to get a bone scan done to see if the
cancer has spread to his bones, and a brain imaging
study done to be sure it isn't in his brain before we
start. Also the chemo can damage his hearing and lung
capacity, so must get audiology and PFT's done before
hand. The medi-port will be placed next week and the
chemo will start the next day. The chemo will be done
as an inpatient every three to four weeks, and he will
be in the hospital in Dallas for three to five days each
time. Estimated duration of chemo is three to six months
depending on the response.
If I lived to be a million years old I could never thank
each of you enough for praying for our son. I didn't
cry today before the visit, but as I sat in the exam
room and the doctor uttered the words "one of the easier
types to cure", tears began to roll down my cheeks.
Total tears of joy. I sit in my home tonight more
grateful for my family, my friends, and my God than I
have ever been before. Your continued prayers that
the cancer is not in his brain, nor his bones are most
appreciated. Also that his chemo will be effective, and
quickly over.
Thank you all again & God Bless you all,
Much Love,
~ Mary |
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10 November 2007 5:20 PM
Many thanks for the continued prayers and support for
Charlie. We have a full day of testing scheduled for
Monday in Dallas.
Bless you,
~ Mary |
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13 November 2007 2:17 PM
Charlie had his brain MRI and bone scan yesterday. I
do not yet have the results. I will post them when I
know. We received the chemo information and schedule.
It's three types of chemotherapy. Every twenty one days
he will be admitted to CMC in Dallas for five days to
receive it. He will receive four courses and then we
will consult a surgeon to see if he wants to surgically
excise all those lymph nodes around his kidneys. If
not, there will be two more rounds of chemo. Hair loss
will be total and is inevitable, likely occurring as
soon as two weeks after the first dose. I cried when
they told us, but he didn't. How tough can one boy be?
I just don't know. He is really remarkable.
Although I am stunned by his composure, I know there is
much more grief there than I am seeing, and someone from
the Lance Armstrong Foundation is going to come and talk
to him. He tires easily and somehow seems more frail
already, though I don't know why. I guess because he
isn't out trapping and hunting like he ordinarily does.
Hearing test was done yesterday as one type of the chemo
is known for potentially causing hearing loss. There is
a 5% to 20% chance he will lose some of his hearing, and
a smaller chance that he would lose it all. He only
mentioned that if that happened he wouldn't be able to
hear the animals coming through the woods.
There are other, much scarier potential effects from the
chemo, including death, but what is a mother to do? I
will have to sign the consent listing all the risks and
my heart is heavy just thinking of it.
Bless you,
~ Mary |
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14 November 2007 8:50
PM
We have reason once again to give thanks to the Lord...
Charlie's cancer has not spread to his bones or his
brain!! The surgery date for insertion of a medi-port
is pending, not sure if it will be Friday or Tuesday at
this point, but soon. We aren't looking forward to it,
but we are fully prepared to get started. We know God
will bring us through it all and we will be even closer
as a family when it's done. Our entire family thanks
each of you for your continued prayers and support. It
makes each day more pleasant and I do relay ALL the
messages I receive to Charlie. He is having a good day
today. :)
Bless you,
~ Mary |
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21 November 2007 10:01
PM
We left home at 3:30 a.m. Friday morning for Children's
Medical Center. Anyone who really knows Charlie knows
how crazy he is about animals. He has a pet
short-tailed opossum he is very partial to, and he has
wanted a fancy female to go with him for the longest
time. Chuck secretly purchased one by phone down in San
Antonio (you can't imagine how hard those things are to
find when you need one) and we had hoped to get her
picked up as a surprise for Charlie before he went into
the hospital. We thought she'd be the perfect
distraction for him. Unfortunately we were unable to
find the time to make the long drive down, and it didn't
look like it was going to happen. God intervenes
constantly on Charlie's behalf though, and due to His
grace, and the extreme generosity of our friend, Jason
Hightower, the perfect lady opossum was delivered to us
around midnight the night before surgery. I can't begin
to tell you how thrilled Charlie was to wake on the
morning of his surgery and find her. It was truly the
perfect thing to take his mind off of his problems and
we are so very grateful to Jason for taking the time and
effort to make it all possible.
Charlie's surgery to put in the Medi-port went well and
he didn't have the problems with the anaesthesia like he
did with the first surgery, which was a relief. (The
first time he had "minor" side-effects, per the doctors,
but Charlie was very uncomfortable for hours afterward.
He said he felt like his insides were roasting.) He did
have a lot more pain after this surgery than the first
one, but we were told that it is common for surgery
involving the chest to be more painful than an abdominal
surgery. The pain medicines helped him a lot and those
nurses did a great job of keeping him comfortable.
I hurt for him the first time he leaned forward to see
what that port looked like lying under his skin. (It's
low on his chest wall, over his ribs toward his left
side.) I knew how ugly he thought it was, but he didn't
complain. He did manage to talk about his new opossum a
little bit before dozing off again. After about three
hours in recovery, he was moved to his room on the tenth
floor. I was glad he was zonked out on pain medications
as the trip through those oncology halls the first time
was a very sobering experience. It really did feel like
a bad dream, like we just shouldn't be there, like some
terrible mistake had been made.
The hardest thing for me the first day was having the
same continuous thought run through my mind - this is
the day they begin to poison my child. Trust me, I know
it's the cancer they're after, but you have to
understand I'm the mom who had all the little yucky face
stickers on the household cleaners, safety locks on all
the cabinets and drawers, and honestly, I do think I
sliced my kids' grapes until they were three and Chuck
finally said, okay, they have teeth now, you can stop.
:P I'm just a safety nut and I've always been bound and
determined that if something were going to happen to my
children, it would be something I couldn't prevent.
And, like Clint's autism, this was again something I
couldn't prevent. But I did have to sign consent for
the chemo, and that was very hard emotionally. Charlie
also had to sign it and I know it was so hard for him,
too. His only question was to ask me what leukaemia
was. (One type of the chemo will rarely induce
leukaemia in a child.) I prefaced my answer with "well,
we aren't going to have to worry about that, God has
other plans for you". And I know He does. :)
The tenth floor is nice and his room had a fantastic
view of Dallas - it had huge windows all down one side
of the wall. The Parkland helipad was visible from the
window and I swear we were so high up you could almost
see the pilots smile at you. I'm not much on heights,
but Charlie watched the helicopters come and go, so I
was glad for that.
The first doses of chemo were infused the same night he
got his port, and Charlie did well. He wasn't cheerful
and happy by any means, but he was okay. We were all
relieved that there wasn't an allergic reaction to the
first doses of chemo. As bad as we hate for him to get
it, if he were allergic, the alternatives might not work
as well. For anyone interested, the three types of
chemo he is taking are Cisplatin, Bleomycin, and VP16.
He ate pretty well that night and looked good. We went
to sleep that night tired, but optimistic.
The next morning, Day 2, was shocking in comparison.
His color was bad, he felt extremely tired, his eyes
were expressionless, and he hardly talked at all. There
was no denying the chemo had taken effect. We had been
warned that it was a big powerful punch of it though,
and that he would be tired. Tired is an understatement.
Charlie said even opening his eyes took effort. I can't
imagine being so tired that lifting my eyelids would be
difficult, but that is just how it was. You could see
it in him. The nausea was a constant battle, and just
about the only thing that sounded good to him was
watermelon. Meals are not routinely delivered at that
hospital, you call to the kitchen for room service.
Whenever he wanted something we just dialled down and
they brought up what he wanted. I kept thinking how
much he would have loved that room service if he felt
like eating.
Day four was the very worst for depression, fatigue,
nausea, and frustration for Charlie. He hardly spoke at
all, and he was hardly speaking to begin with. About
once every three hours he would say "I want to go home",
and that was it. He felt so rotten he didn't want to
eat, watch movies or TV., so he basically just laid
there. A big stack of emails from his friends and
teachers arrived, and that was really nice. He felt so
bad he didn't read them all right then, but I told him
the names of who had written. It was nice for me to get
to read them, that's for sure. He did not want any
outside company at all.
Day five was a bit better for his energy and attitude,
thank goodness. We were discharged late in the
afternoon and he has felt stronger since we arrived back
home. He still tires very easily and has to stop and
rest, but he overall he is improved. We now have an
arsenal of medications, and the house is looking like a
regular pharmacy, but I think we are keeping the nausea
whipped down, which is great. Charlie could have
problems with nausea and vomiting the entire time
between treatments since some of the chemo causes late
effects, but this doesn't always happen, so we are very
hopeful that he won't have it so long as he continues on
all his medications.
He says he is beginning to lose some of his hair
already. I told him to name what he wanted to do with
that hair - Mohawk, spiked, dyed, whatever he wanted,
and we would do it. He said he wanted to dye it black,
so that is our plan for this afternoon - to dye it
black. My camera died the day before he went into the
hospital so I will borrow one and get pictures of him.
Definitely something for his scrapbook.
We remain completely humbled by the huge outpouring of
support from our friends, and the many, many people we
don't even know who take the time to ask God's mercy on
our child. And also those special individuals who have
reached out to Charlie through their special acts of
kindness - Jody, Judy, Gena, Kari, Jason, Lea, Dr. Kim,
Dr. Blair, Amanda, Ashley and many others. And our dear
family members whose words, gifts and visits encourage
Charlie - you are all priceless to us. Thank you all so
much, from the very bottom of our hearts. I'll send
another update in a few days to let everyone know how he
is doing. Charlie still isn't feeling like guests or
phone calls right now, but maybe soon.
Wishing you all a blessed
Thanksgiving holiday from our family to yours!
Bless you,
~ Mary |
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November 26, 2007 5:21
PM
I last wrote at a positive moment when Charlie was feeling pretty well. At
least in comparison to how he was doing on Friday and Saturday he was
feeling well. I'm learning just how different one day to the next can be
for him.
Friday and Saturday, we experienced new lows. We are all praying
that what he went through on those days will be as bad as it gets. He had
horrible abdominal pain, bloating, gas, and nausea. He was in the bed all
day, and his eyes were just flat and lifeless looking. It was
heartbreaking. His doctor added two more medications and they gradually
kicked in and began to help. Saturday night he went to bed still sick and
he woke up Sunday feeling absolutely AWESOME. It was a huge turnaround.
Our house almost felt normal for a few hours. It marked the first day since
his diagnosis that I haven't cried, too, so it was kind of a landmark day in
this whole saga.
Charlie felt incredibly better and was awake most of the
day. He was able to walk around the house, had an appetite and even ordered
up a Subway sandwich for his supper. He ate it ALL. We were all thrilled.
He enjoyed looking at his opossums and Oscars (fish) and even asked
about his outdoor animals and how they were doing, for the first time since
his chemo. Definitely a huge improvement. I think he tired himself out,
but I wasn't about to tell him to go take a nap. It was beyond wonderful.
He even teasingly tried to aggravate me a little bit and it was so good to
see a glimpse of our old Charlie again.
I can tell he has lost weight already. His clothes are starting to hang on
his lanky self. Being 6'1 and only 175 pounds to begin with, I suspect he
will be a lot bonier before it's over.
We are already planning to eat at
every restaurant he can think of when he is well again. Our first stop will
be Medieval Times which we pass on our way to the hospital each month. Hard
to beat the combination of food and entertainment that includes horses and
birds. :)
Our family has received many kind emails and we thank you for them all.
Many have included questions about his medications. Charlie is on a lot of
prescription medication and is being closely monitored and watched by his
oncologist, his pediatrician, and myself (I'm an RN). Please know that this
page is to update everyone on how Charlie is doing, and not a complete log
of his treatments and care. I wouldn't want anyone to think that when I
write that he is feeling so poorly that we are sitting idly by. Nothing
could be further from the truth. Also know that when I write it is just but
one moment's perspective in an entire day.
We have ups and downs every day,
but we are still rolling with the punches and keeping our faith strong and
our chins up. We know Charlie WILL beat this and he will have many
wonderful years, rehabilitating wildlife and doing whatever else his heart
leads him to do. :)
If anyone would like to send Charlie a card, it is: Charlie Bittner, 2866 CR
3270, Quitman, Texas 75783. I am sorry, but we are unable to have visitors
to our home during Charlie's chemotherapy. His immune system is depressed
and he is at risk for infection. We feel it is safest to just have no
guests rather than attempt to screen individually who comes to visit. And
Charlie is good with that. The thought of getting an infection really seems
to scare him more than anything else at this point.
We wish you all a very Merry, Christ-filled Christmas. We have our tree up
already and hope you do, too!
~ Mary
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This is Charlie
and his new puppy, Patty. Patty came from the
breeding program of
Foxlea Farms in TN. He is a registered
Norwich Terrier, and Charlie plans to do
earthdog trials with him when he gets well. I
think it's a great goal to shoot for so we are
really encouraging him.
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| Well, we are home
again after Charlie's second round of chemo at
Children's. It seemed to go a little faster this time, I
don't know exactly why. Our room had a big, pretty
window that perfectly showcased the gray concrete wall
outside, so this time we missed watching the
helicopters, but made up for it by spending more time
watching Animal Planet. Lucky for us, they had several
great snake programs on, and he actually watched them,
which helped pass the time.
Charlie doesn't talk a lot while
he is getting his chemo and he becomes very irritable if
he says something and you don't hear him the first time.
It takes a lot of effort for him to speak and you should
see me jumping around trying to get closer to him so
quickly when he says something. Not an easy feat if I'm
flat on my back on the couch/bed they have in the rooms!
Not that I mind, I just can't help but laugh at myself.
At 42 I'm not nearly as coordinated or quick as I once
was. :)
We had a few new experiences this time. First of all I
discovered that the hospital has a library with a
computer I can access. They have very limited hours, and
of course, there are only certain times I can leave
Charlie, but once he falls asleep, I can sometimes slip
out for a few minutes. Upon returning from the library
on day two of his stay, I immediately noticed his skin
had turned beet red. Even with the dim lights it was
very obvious. The nurses and doctors all whisked into
the room and long story short, it was a benign reaction
to the chemo. He's still flushed looking, but it is
gradually fading.
Two days later the nurse's aid discovered his heart rate
was 42 when she took his routine vital signs. Now that
certainly generated a lot more interest than the redness
had. He ended up wearing a cardiac monitor and although
his heart rate dipped as low as 37 later that night, the
doctors were okay with that. When I inquired as to what
parameters we should be comfortable with (I lay there
awake all night anxiously watching the number on the
monitor) the resident told me that if his heart rate
went to the twenties, he would order a 12 lead EKG. I
tried not to sound too terribly sarcastic when I replied
and agreed that yes, I felt it would certainly be
indicated at that point. I had a hard time understanding
why low forties was enough to indicate a heart monitor,
yet no intervention would be made until it was almost
half that rate. But I am not a doctor, and I should
clarify that I am very grateful for all the care he has
received. I am just a mom who was little tired by the
wee hours of day five and a lot more than just a little
irritable.
Later that morning, his day of discharge, his case was
discussed with a cardiologist who pronounced his heart
perfectly normal and said that he is just in good
physical condition and keeps a low heart rate. I am
thrilled to know it was only that. I was afraid
something in the chemo was causing his heart rate to
drop. Chuck came and picked us up from the hospital on
Saturday and we were happy to get back home. Charlie
even requested some Taco Bell on the way to the house.
That is definitely a sign of health. Mind you, he
couldn't eat much, but it's a positive sign to see him
at least wanting something.
On Monday and Tuesday the nausea was a bit harder on
him. The oral medications just aren't as good as the IV
ones. He did have some vomiting, but he is not a
complainer and he really toughed it out. On the first
night home I set up my foaling cot (what I lie on next
to the foaling stall when I'm waiting for a new baby to
arrive) next to the couch and we camped out in the
living room together. It feels comfortable being able to
just see him there whenever I want and I know he feels
the same about me. We did that after the first chemo
bout, too. I guess it is our transition home routine. At
a time when most teenage boys are growing apart from
their moms I really feel like I have been blessed to be
able to grow closer to him.
Wednesday brought tragedy when I went to feed Charlie's
pet armadillo who resides outside. Brooks is Charlie's
favorite pet. He raised him from a baby, and I just
cried when I saw his little body lying there. He had
died. I don't know why, but I swear, if CPR would have
done any good, I would have done it, germs and all. I
knew how much Charlie loved him. I couldn't even bring
myself tell him he had died. Pathetic, I know.
Thursday afternoon it came to a head when Charlie asked
me to bring Brooks out for him to see. I had to tell
him. He was just heartbroken. He put his head down into
his hands and I looked away with tears in my eyes. When
I looked back, I was shocked to see blood running down
both his forearms. I made some kind of incomprehensible
squeaking sound I think and Charlie looked up at me with
a confused look on his face. There was blood all over
his face, and literally puddles of it in the palms of
both of his hands. He had a horrible, and apparently
instantaneous nosebleed. I had only looked away for a
moment! I was actually relieved when I was able to
figure out what was going on. It was a very scary moment
there when I couldn't make sense of what was happening.
We finally got the bleeding stopped, and he laid down
for a few minutes.
A little later his oncologist
phoned, out of the blue (Divine intervention <smile>)
and when I relayed what had happened, she suggested
blood work. Long story short, his platelets are down to
25 today, and he will be back in Children's Hospital
tomorrow for platelet transfusions. The doctor felt that
they will continue to drop and rather than risk being in
the hospital on Christmas, that it would be best to do
it now. If his nose begins to bleed again tonight, we
will have to leave for Dallas at that time. But for now,
we will plan to go tomorrow morning.
I'm tired, and very behind on my Christmas shopping, but
there's still Friday, right? <grin>
Many thanks from the bottom of
my heart - all of our hearts - the wonderful people and
stallions (Alen's Belfast Bandit and Prince Moonbeam we
love you!!) who have sent cards, letters, treats,
financial assistance, and precious words of
encouragement. We go to bed tired each night, but
continue to wake hopeful and renewed. We know that is a
direct results of the many prayers being said on our
behalf.
~ Mary
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| Wednesday, February
27, 2008 4:40 PM I'm
tired beyond belief, but wanted to tell everyone about
our big day in Dallas. We got back home late yesterday,
it was a very long day, and I had a ton of stuff to do
when we got home last night (barn, grocery shopping) so
didn't write at that time.
Charlie will have to have a pretty intensive surgery to
remove what is left of the mass. It didn't get much
smaller. We were so praying that he wouldn't have to go
through this, but things don't always go the way we
think they should. I don't know the date of the surgery
yet. His immune system is too poor for them to do the
surgery at this time. We have to go see the surgeon
next week and I may have more of an idea then. Once the
mass near the kidney is removed and biopsied and the
spot on the adrenal gland is inspected and possibly
biopsied we will know if he has to have two more rounds
of chemo. It is all dependent on whether or not there
are any malignant cells left in it. The radiologist
also saw a spot on the pole of Charlie's left kidney
yesterday, which is somewhat concerning as it wasn't
ever mentioned before, but everything will be cleared up
as to what is in there good or bad at the time of the
surgery. Charlie was disappointed at facing surgery
again needless to say, but is remarkably chipper this
morning and busy wearing out his playstation right now.
That's good to see. :)
Well, I thank you all so much for caring and asking
about Charlie. I'm just a tearful blob today. I'm
hoping to run away to the Clinton Anderson clinic in
Waco tomorrow night and just have some Mary time to zone
out and think about horses for a while. I am an
attentive mother, but I could definitely use the
distraction and Chuck will be here with Charlie.
~ Mary |
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| March 4/2008
Today I found out that Charlie's
tumor markers which had previously gone to zero, have
come back. That is extremely disheartening, and very
scary. It is an indication that there is still
malignancy there after they thought they had killed it
all. They are talking of doing his surgery on Wednesday
(the day after tomorrow). I have to pack tonight in
case they call for me to leave for the hospital in the
morning. He is definitely going to get two more rounds
of chemo once he has had the surgery.
The doctor said she was still pretty sure she could cure
him. Since there isn't a 100% cure rate, I'm pretty
much terrified. "Pretty sure" isn't the wording you
want to hear about your child.
Please pray for Charlie and ask everyone else to also.
I was in a much more comfortable place before I heard
that there was still definitely malignancy there. I am
just so scared all over again. :( I really thought we
just about had it beat. Guess I was wrong.
I have not been online at all today and will not be the
next few days, so please don't think I'm ignoring if any
of you reply to me.
~ Mary |
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| March 15, 2008
Charlie and I just returned home
after a nine day stay at the hospital in Dallas to
remove a mass and biopsy his kidney. (Home never looked
so good...) He is making a fine recovery and we are
hoping that no further chemotherapy will be needed. He
is a great kid and has a wonderful outlook and we have
faith God has plans for a long and productive life for
him. Thank you for your prayers on his behalf. We
appreciate them so much!
~ Mary |
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Charlie and Blaze at the State Fair of Texas -
2007
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