(no subject)
Last weekend Andy and I went to see Black Snake Moan, I forget if I told y'all this or not. It was a good movie, but it made me really uncomfortable. There was lots of crying, and nervousness, and sadness. But it was a really good movie. Andy was upset that I didn't just ask him to leave since it made me so uncomfortable, but I had to see; you know what I'm talking about? It's about this slut with rape flashbacks who cheats on her man until Samuel L Jackson chains her up and sings her the blues. There's more to it than that, but that's what it was, and why it bothered me. It had an excellent soundtrack though, and I recommend it to everyone except Marcy, because I think you might be uncomfortable with it too.
Last Wednesday, February 28th, I took Tyler to MD Anderson for lab
tests, an x-ray and to have his G-tube looked at because it has been
leaking fluid since they placed it in him. When they saw his stomach and
the drainage -- Tyler was immediately scheduled for surgery - to replace
the tube with a bigger one so it would fill the hole in his stomach and
stop draining. While under anesthesia, Tyler had a little diarrhea and
the surgical team did not know it. Tyler and I realized it as soon as he
had completed recovery and I lifted him to put him in the wheelchair.
After coming out of surgery, Dr Huh decided he wanted to see Tyler
before we left so I wheeled Tyler to pediatrics and went to the car for
some clean shorts. That was at 4 PM. By 8:30, he had had 9 bouts of
diarrhea. He was dehydrated, his sodium count was too low, his new
G-tube was leaking, the x-ray taken earlier indicated lots of fluid on
Tyler's lungs, he had uncontrollable diarrhea and they discovered he had
developed bed sores on his lower back. Dr Huh decided to admit Tyler. He
said that each issue taken separately was not a problem, but the
combination needed hospital care.
Dianne came up and spent the night with Tyler and I got home around
midnight. By Thursday afternoon, when I returned Tyler was still
fighting the diarrhea, but it was slowing down. It was under control by
Thursday night and we got a decent night of sleep. They ordered a
special bed that uses air and water and sand to constantly move Tyler
and help his bed sores heal. All the nurses wanted to sit in it! Tyler
was leery at first, but once he got in it he loved it. Tyler's strength
by this time was completely gone. He is no longer able to get out of bed
for anything, including going to the bathroom. That bed had some
functions that made it real easy to clean him up afterwards, though.
On Friday, Dr Huh ordered a CT Scan, to see if the chemo had been having
any effect on the tumor. When the scan came back, he told us that the
cancer is spreading and is getting worse. It has spread into his pelvis
and is not responding to any treatments. He also said the fluid on
Tyler's lungs is getting much worse. Then he said he is out of options
for us. There is really not anything else they can do for Tyler. He
gives Tyler about 2 to 4 more months. Tyler had heard most of this news
before from the adult sarcoma unit. On December 12th, 2006, Dr Patel
told Tyler and us that Tyler's time was down to months and not years.
That's when we moved to pediatrics. Tyler has been prepared for this for
a long time. I told Dr Huh that one of Tyler's few fears in this life is
not being able to breathe well. If the fluid really starts causing him
serious discomfort, I want them to drain it. He said that while that is
an option, it also runs the risk of causing another pneumothorax. He
said that with the fluid on both lungs, it would be a pretty substantial
procedure, carrying many risks. If Tyler wants it done though, we will
have it done. I then asked if there were any experimental clinical
trials or anything available. He said Tyler is just too sick to qualify
for any of them. There are two reasons for this: 1) They may make Tyler
real sick and his body just cannot handle this treatment, and 2)
pharmaceutical companies don't want someone like Tyler ruining their
statistics, therefore they won't allow him the opportunity to take a
chance. I asked Dr Huh, if Tyler was his son, would he just give up now
or would he take him to Mayo, St Jude's or somewhere else. He said there
was a doctor in New York who he would consult, but he really thinks if
something were available, he would already know about it. He said there
are some low dose chemo's we could get, but they are really just to help
Tyler feel better, they won't give him any help long term. I told him to
write the prescription and I'd pick them up. What I really want is hope
-- if we are giving Tyler something, anything, then he still has hope
and hope is awfully powerful! I need hope!
After Dr Huh and his team left, Tyler and I hugged and cried -- later he
told me I hugged too tight and almost choked him! He held my hand that
afternoon and has held my hand several times since and is helping me
cope. I am beginning to believe this is much harder on Dianne, Brittney,
Keally and me than it is on Tyler. He has such a strong faith in God and
heaven, he knows that it's better to be there than here and time flies
so fast up there, he will see us again very soon. While I was loading
the car and sitting in the pharmacy, Dr Huh came and visited some more
with Tyler and Tyler told him he wanted to take the weekend off from the
chemotherapy -- maybe we could start that on Monday.
Meanwhile, at the pharmacy, insurance would not approve one chemo
because it apparently doesn't work on Rhabdomayosarcoma. The other chemo
only comes in one form -- a huge pill that I couldn't swallow -- I know
Tyler couldn't. So I asked the pharmacist if I could dissolve the pills
in water in give it to Tyler through his G-tube, he said, "No." I went
back to get Tyler and discuss our options and he told me he wanted to
skip the chemo's until Monday and maybe not do them at all. I talked to
Dr Huh and he agreed with Tyler, so I brought Tyler home. We told Dianne
Friday night after we got home and Tyler told Keally on Saturday.
Brittney came home Saturday and has been fantastic with him as always.
They've been best friends and have always had a great love for one
another. She is so good at bringing up good memories and we just laugh
out loud when she is here.
Of course, I am praying as always and racking my brain and trying to
come up with some alternative because I will not ever give up. Saturday
morning, Dr Zach Benson, who is one of my dearest friends came to the
house without knowing the latest information. In his car was a "sine
wave" machine. Purportedly, it can kill cancer cells with radio waves.
While I have fought every "snake oil" option that is not based on
medical science since day one, I am now open to this, but only because
Dr Benson recommends it! So far Tyler has had five treatments (he gets 2
per day, for 20 minutes each) and has not gotten very sick. He did throw
up a couple of times. We are also giving Tyler Goji juice, provided by
Dr Benson. Tyler is not getting better, but is not getting worse either,
which is a blessing for us. He is retaining fluids and is getting very
puffy. He did ask to skip the sine wave treatment tonight because he
thinks it has caused him not to feel so good. I think the fluid on his
lungs is causing more problems, but I agreed to skip tonight's
treatment.
I am still not open to a lot of strange options. Unless you personally
know a person (not read about them on the internet or in a sales
brochure) who medical science gave up on and they are perfectly healthy
today, I really don't want to hear about it. Dr Benson has been a fan of
Tyler's for years. He drafted him to play on his Babe Ruth baseball team
and asked me to help coach the team. His son Zachry has been a great
friend of Tyler's for years and was one of the first to shave his head
for Tyler. Last year, Doc Benson was the second person I told that Tyler
had been diagnosed with cancer. Tyler was third. I trust Dr Benson,
because I know beyond any shadow of a doubt that he only has Tyler's
life in mind. He is not selling us anything. Vicki Benson has been by to
pick up some stuff and help also. Zach and Vicki are two of the many
wonderful people that God has surrounded us with during this time. They
have blessed us several times in the past year. The sine wave machine
may not help at all, but I hope it does! At least it offers hope. We
have decided not to pick up the chemotherapies. Tyler needs to stop
getting poison in his body.
I still have every confidence that God can and every hope that He will
heal Tyler. I believe that Doc Benson's trip to my house was by Devine
appointment. I have never felt that God needed a certain faith healer to
lay hands on Tyler in order to heal him. I have prayed from day one that
God will use Tyler and his cancer as a tool to witness, hoping that
Tyler would have great stories to tell for years to come about how God
healed him. If Tyler is healed, it will only be because of God's grace.
If God does not choose to heal Tyler, that will in no way lessen my
faith in Him. His presence has been my hope everyday, and that hope does
not stop with Tyler's last breath. Because He lives, I will be with
Tyler forever. Our hope continues into the next life. At that point it
will no longer be hope, but joy that floods my soul. Tyler will spend
eternity with God and so will we. We will be together, forever. I am
quite okay with God giving Tyler 60 more years here, though. So if this
report in any way diminishes your faith in God, you need to realize that
God can still use you to share Tyler's story. Even without miraculous
healing, God has a plan to use Tyler's situation for His glory and you
may be a very large part of that plan. Ask God what He expects of you. I
have always maintained that God allows bad things to happen to good
people so the world can see the difference in how we respond. If you are
a Christian, you have a responsibility to respond accordingly!
One more request, please. We have been absolutely surrounded with love
and encouragement from family, church, community, friends near and far
and total strangers. I have never solicited anything other than prayer
from anyone. Because we have been so forthright and public with Tyler's
situation, many people have come to feel they know Tyler personally.
Tyler did not want me to share this latest info through the e-mail
because he does not want to be inundated with calls and visits from
people he is not close to. He is always exhausted. He has a handful of
close friends that he would love to see for short visits (by appointment
only) because he tires very easily. There are very few adults that he
would want to see, but there are some. When his friends come, they
giggle and laugh and watch TV. When most adults come they want to touch
him, tell him they are praying for him and generally look real sad.
Tyler wants to laugh and be happy. We are working on how to get the most
out of every day now. Tyler is sick, tired, and generally worn out, so
it won't be easy. But he has some ideas of how he wants to live the next
few weeks and months.
Dianne has taken a leave of absence from work so she can stay home and
care for Tyler and be with him. She is able to do this because a number
of BCISD employees have donated the maximum number of days to Dianne.
She will be paid for most of the days she will miss at work. Tomorrow is
my birthday and I will not be in the office, because for my birthday, I
want to be with Tyler all day long. Since my office is at home, I get to
be with Tyler a lot of the time, but that could end soon. We have
invited Pat Matthes and hospice to help us from this point forward. We
are not real keen on a lot of extra people in the house, but there are
some things that are too much for us. I will continue the e-mails
because I really appreciate you and all the prayers you offer up for
Tyler as well as us. The best way to contact us is probably via e-mail.
The phone has been ringing so much that I just don't even bother to
answer it anymore. Dianne tries to respond to everyone, but we really
have been quite busy and will be for a while. Tyler needs round the
clock care and we tag team very well, but there is just so much that has
to be done.
Thank you all so much for the e-mails, the encouragement and especially
the prayers! Please continue to pray for a miracle and for his swelling
to improve and his strength and energy to return. We receive strength
through your prayers! God has been our strength through this.
Be strong and take heart, all you who hope in the Lord -- Psalm 31:24.
God Bless You and Tyler,
We love you,
Terry Farrar
It bothers me that he can be so into god miraculously healing people and so against so called "snake oil" cures. I mean, what if one of those unproven medical cures was gods way of healing Tyler? So much of what he says angers me, and I don't feel it's right to be angry, because he's losing a child, and he knows it, and I think that's worse than all of a sudden losing him. Atleast then he wouldn't have to see him suffer. I don't know I don't know I don't know.
On a brighter note, spring break starts this afternoon. I'm really glad that I'll get the week off. GTG now.
Last Wednesday, February 28th, I took Tyler to MD Anderson for lab
tests, an x-ray and to have his G-tube looked at because it has been
leaking fluid since they placed it in him. When they saw his stomach and
the drainage -- Tyler was immediately scheduled for surgery - to replace
the tube with a bigger one so it would fill the hole in his stomach and
stop draining. While under anesthesia, Tyler had a little diarrhea and
the surgical team did not know it. Tyler and I realized it as soon as he
had completed recovery and I lifted him to put him in the wheelchair.
After coming out of surgery, Dr Huh decided he wanted to see Tyler
before we left so I wheeled Tyler to pediatrics and went to the car for
some clean shorts. That was at 4 PM. By 8:30, he had had 9 bouts of
diarrhea. He was dehydrated, his sodium count was too low, his new
G-tube was leaking, the x-ray taken earlier indicated lots of fluid on
Tyler's lungs, he had uncontrollable diarrhea and they discovered he had
developed bed sores on his lower back. Dr Huh decided to admit Tyler. He
said that each issue taken separately was not a problem, but the
combination needed hospital care.
Dianne came up and spent the night with Tyler and I got home around
midnight. By Thursday afternoon, when I returned Tyler was still
fighting the diarrhea, but it was slowing down. It was under control by
Thursday night and we got a decent night of sleep. They ordered a
special bed that uses air and water and sand to constantly move Tyler
and help his bed sores heal. All the nurses wanted to sit in it! Tyler
was leery at first, but once he got in it he loved it. Tyler's strength
by this time was completely gone. He is no longer able to get out of bed
for anything, including going to the bathroom. That bed had some
functions that made it real easy to clean him up afterwards, though.
On Friday, Dr Huh ordered a CT Scan, to see if the chemo had been having
any effect on the tumor. When the scan came back, he told us that the
cancer is spreading and is getting worse. It has spread into his pelvis
and is not responding to any treatments. He also said the fluid on
Tyler's lungs is getting much worse. Then he said he is out of options
for us. There is really not anything else they can do for Tyler. He
gives Tyler about 2 to 4 more months. Tyler had heard most of this news
before from the adult sarcoma unit. On December 12th, 2006, Dr Patel
told Tyler and us that Tyler's time was down to months and not years.
That's when we moved to pediatrics. Tyler has been prepared for this for
a long time. I told Dr Huh that one of Tyler's few fears in this life is
not being able to breathe well. If the fluid really starts causing him
serious discomfort, I want them to drain it. He said that while that is
an option, it also runs the risk of causing another pneumothorax. He
said that with the fluid on both lungs, it would be a pretty substantial
procedure, carrying many risks. If Tyler wants it done though, we will
have it done. I then asked if there were any experimental clinical
trials or anything available. He said Tyler is just too sick to qualify
for any of them. There are two reasons for this: 1) They may make Tyler
real sick and his body just cannot handle this treatment, and 2)
pharmaceutical companies don't want someone like Tyler ruining their
statistics, therefore they won't allow him the opportunity to take a
chance. I asked Dr Huh, if Tyler was his son, would he just give up now
or would he take him to Mayo, St Jude's or somewhere else. He said there
was a doctor in New York who he would consult, but he really thinks if
something were available, he would already know about it. He said there
are some low dose chemo's we could get, but they are really just to help
Tyler feel better, they won't give him any help long term. I told him to
write the prescription and I'd pick them up. What I really want is hope
-- if we are giving Tyler something, anything, then he still has hope
and hope is awfully powerful! I need hope!
After Dr Huh and his team left, Tyler and I hugged and cried -- later he
told me I hugged too tight and almost choked him! He held my hand that
afternoon and has held my hand several times since and is helping me
cope. I am beginning to believe this is much harder on Dianne, Brittney,
Keally and me than it is on Tyler. He has such a strong faith in God and
heaven, he knows that it's better to be there than here and time flies
so fast up there, he will see us again very soon. While I was loading
the car and sitting in the pharmacy, Dr Huh came and visited some more
with Tyler and Tyler told him he wanted to take the weekend off from the
chemotherapy -- maybe we could start that on Monday.
Meanwhile, at the pharmacy, insurance would not approve one chemo
because it apparently doesn't work on Rhabdomayosarcoma. The other chemo
only comes in one form -- a huge pill that I couldn't swallow -- I know
Tyler couldn't. So I asked the pharmacist if I could dissolve the pills
in water in give it to Tyler through his G-tube, he said, "No." I went
back to get Tyler and discuss our options and he told me he wanted to
skip the chemo's until Monday and maybe not do them at all. I talked to
Dr Huh and he agreed with Tyler, so I brought Tyler home. We told Dianne
Friday night after we got home and Tyler told Keally on Saturday.
Brittney came home Saturday and has been fantastic with him as always.
They've been best friends and have always had a great love for one
another. She is so good at bringing up good memories and we just laugh
out loud when she is here.
Of course, I am praying as always and racking my brain and trying to
come up with some alternative because I will not ever give up. Saturday
morning, Dr Zach Benson, who is one of my dearest friends came to the
house without knowing the latest information. In his car was a "sine
wave" machine. Purportedly, it can kill cancer cells with radio waves.
While I have fought every "snake oil" option that is not based on
medical science since day one, I am now open to this, but only because
Dr Benson recommends it! So far Tyler has had five treatments (he gets 2
per day, for 20 minutes each) and has not gotten very sick. He did throw
up a couple of times. We are also giving Tyler Goji juice, provided by
Dr Benson. Tyler is not getting better, but is not getting worse either,
which is a blessing for us. He is retaining fluids and is getting very
puffy. He did ask to skip the sine wave treatment tonight because he
thinks it has caused him not to feel so good. I think the fluid on his
lungs is causing more problems, but I agreed to skip tonight's
treatment.
I am still not open to a lot of strange options. Unless you personally
know a person (not read about them on the internet or in a sales
brochure) who medical science gave up on and they are perfectly healthy
today, I really don't want to hear about it. Dr Benson has been a fan of
Tyler's for years. He drafted him to play on his Babe Ruth baseball team
and asked me to help coach the team. His son Zachry has been a great
friend of Tyler's for years and was one of the first to shave his head
for Tyler. Last year, Doc Benson was the second person I told that Tyler
had been diagnosed with cancer. Tyler was third. I trust Dr Benson,
because I know beyond any shadow of a doubt that he only has Tyler's
life in mind. He is not selling us anything. Vicki Benson has been by to
pick up some stuff and help also. Zach and Vicki are two of the many
wonderful people that God has surrounded us with during this time. They
have blessed us several times in the past year. The sine wave machine
may not help at all, but I hope it does! At least it offers hope. We
have decided not to pick up the chemotherapies. Tyler needs to stop
getting poison in his body.
I still have every confidence that God can and every hope that He will
heal Tyler. I believe that Doc Benson's trip to my house was by Devine
appointment. I have never felt that God needed a certain faith healer to
lay hands on Tyler in order to heal him. I have prayed from day one that
God will use Tyler and his cancer as a tool to witness, hoping that
Tyler would have great stories to tell for years to come about how God
healed him. If Tyler is healed, it will only be because of God's grace.
If God does not choose to heal Tyler, that will in no way lessen my
faith in Him. His presence has been my hope everyday, and that hope does
not stop with Tyler's last breath. Because He lives, I will be with
Tyler forever. Our hope continues into the next life. At that point it
will no longer be hope, but joy that floods my soul. Tyler will spend
eternity with God and so will we. We will be together, forever. I am
quite okay with God giving Tyler 60 more years here, though. So if this
report in any way diminishes your faith in God, you need to realize that
God can still use you to share Tyler's story. Even without miraculous
healing, God has a plan to use Tyler's situation for His glory and you
may be a very large part of that plan. Ask God what He expects of you. I
have always maintained that God allows bad things to happen to good
people so the world can see the difference in how we respond. If you are
a Christian, you have a responsibility to respond accordingly!
One more request, please. We have been absolutely surrounded with love
and encouragement from family, church, community, friends near and far
and total strangers. I have never solicited anything other than prayer
from anyone. Because we have been so forthright and public with Tyler's
situation, many people have come to feel they know Tyler personally.
Tyler did not want me to share this latest info through the e-mail
because he does not want to be inundated with calls and visits from
people he is not close to. He is always exhausted. He has a handful of
close friends that he would love to see for short visits (by appointment
only) because he tires very easily. There are very few adults that he
would want to see, but there are some. When his friends come, they
giggle and laugh and watch TV. When most adults come they want to touch
him, tell him they are praying for him and generally look real sad.
Tyler wants to laugh and be happy. We are working on how to get the most
out of every day now. Tyler is sick, tired, and generally worn out, so
it won't be easy. But he has some ideas of how he wants to live the next
few weeks and months.
Dianne has taken a leave of absence from work so she can stay home and
care for Tyler and be with him. She is able to do this because a number
of BCISD employees have donated the maximum number of days to Dianne.
She will be paid for most of the days she will miss at work. Tomorrow is
my birthday and I will not be in the office, because for my birthday, I
want to be with Tyler all day long. Since my office is at home, I get to
be with Tyler a lot of the time, but that could end soon. We have
invited Pat Matthes and hospice to help us from this point forward. We
are not real keen on a lot of extra people in the house, but there are
some things that are too much for us. I will continue the e-mails
because I really appreciate you and all the prayers you offer up for
Tyler as well as us. The best way to contact us is probably via e-mail.
The phone has been ringing so much that I just don't even bother to
answer it anymore. Dianne tries to respond to everyone, but we really
have been quite busy and will be for a while. Tyler needs round the
clock care and we tag team very well, but there is just so much that has
to be done.
Thank you all so much for the e-mails, the encouragement and especially
the prayers! Please continue to pray for a miracle and for his swelling
to improve and his strength and energy to return. We receive strength
through your prayers! God has been our strength through this.
Be strong and take heart, all you who hope in the Lord -- Psalm 31:24.
God Bless You and Tyler,
We love you,
Terry Farrar
It bothers me that he can be so into god miraculously healing people and so against so called "snake oil" cures. I mean, what if one of those unproven medical cures was gods way of healing Tyler? So much of what he says angers me, and I don't feel it's right to be angry, because he's losing a child, and he knows it, and I think that's worse than all of a sudden losing him. Atleast then he wouldn't have to see him suffer. I don't know I don't know I don't know.
On a brighter note, spring break starts this afternoon. I'm really glad that I'll get the week off. GTG now.