Support Group
01/05/09 09:12
It was great
having all the "kids" in town for the holidays.
The
truth is they're not really kids any
more!
Standing on the far left is Kyle. Holding Kaitlin is Evan, who was in town from Gainesville, where he goes to school and works with a super interesting ministry called Christians Concerned for the Community. Ian, the big fella on the right, was in town from Lynchburg, Virginia, where he is finishing up a Criminal Justice degree at Liberty University. Kaitlin is here in town with us, attending Daytona State College.
Evan headed back to Gainesville last night, and Ian's heading back to Virginia in a few days.
It really was the best Christmas together I could remember. It sure is a gift to have these kids, and they have been a real help and support for each other through everything.
Standing on the far left is Kyle. Holding Kaitlin is Evan, who was in town from Gainesville, where he goes to school and works with a super interesting ministry called Christians Concerned for the Community. Ian, the big fella on the right, was in town from Lynchburg, Virginia, where he is finishing up a Criminal Justice degree at Liberty University. Kaitlin is here in town with us, attending Daytona State College.
Evan headed back to Gainesville last night, and Ian's heading back to Virginia in a few days.
It really was the best Christmas together I could remember. It sure is a gift to have these kids, and they have been a real help and support for each other through everything.
/
Strange End to #11....
12/31/08 09:39
Looks like Kyle's through this one...he might be
through with Number 11. He seemed pretty good last
night.
An interesting thing happened yesterday. Reminds you of how strange "providence" can be.
On Monday, a doctor at Halifax Hospital saw Kyle and set him up with the chemotherapy. The doctor had an assistant, a young man who was acting as an intern, helping the doctor. Kyle met the young man, shook his hand, and then the intern helped the doctor with the appointment. It all seemed pretty normal.
Then yesterday, Tuesday, the calls from the hospital came flooding into the house. Kyle needed to get back to Halifax. It was discovered that the intern, the young man who was there with the doctor, had chickenpox. The intern had followed the doctor all morning and had met and interacted
with a lot of chemo patients on the floor. The
Daytona area has been dealing with a weird outbreak of
chickenpox this fall, with over 50 cases of it reported
at Spruce Creek High School alone.
Chickenpox is highly contagious (remember when your kids passed it amoung themselves!), and for a kid, it's little more than an inconvenience. However for someone with a suppressed autoimmune system (read: chemo patient), getting chickenpox can be bad. Real bad. In some cases, it can be fatal.
Kyle had to go back to the hospital and was being interviewed by a nurse about his exposure to chickenpox. However, when Kyle reported to her that he had a mild bout with shingles (a form of chickenpox) earlier on in his chemotherapy treatment, she put down her pen, smiled and told him he would be fine. This mild round of shingles would act like a flu shot....receiving a mild dose of the disease, where his body had already successfully fought off the Varicella Zoster Virus. In other words, him getting the shingles earlier on helped save him from the chickenpox this time.
We're thankful about Kyle but can't help but be concerned for the other patients at the ROC on Monday exposed to chickenpox. Kyle has remained stronger and more resilient than most of the chemo patients at Halifax....but statistically chickenpox (or shingles) can be fatal in 15% of patients with seriously compromised auto-immune systems. We hope that none of the patients got the disease from their exposure to it on Monday.
A strange end to an already strange year.
An interesting thing happened yesterday. Reminds you of how strange "providence" can be.
On Monday, a doctor at Halifax Hospital saw Kyle and set him up with the chemotherapy. The doctor had an assistant, a young man who was acting as an intern, helping the doctor. Kyle met the young man, shook his hand, and then the intern helped the doctor with the appointment. It all seemed pretty normal.
Then yesterday, Tuesday, the calls from the hospital came flooding into the house. Kyle needed to get back to Halifax. It was discovered that the intern, the young man who was there with the doctor, had chickenpox. The intern had followed the doctor all morning and had met and interacted
Chickenpox is highly contagious (remember when your kids passed it amoung themselves!), and for a kid, it's little more than an inconvenience. However for someone with a suppressed autoimmune system (read: chemo patient), getting chickenpox can be bad. Real bad. In some cases, it can be fatal.
Kyle had to go back to the hospital and was being interviewed by a nurse about his exposure to chickenpox. However, when Kyle reported to her that he had a mild bout with shingles (a form of chickenpox) earlier on in his chemotherapy treatment, she put down her pen, smiled and told him he would be fine. This mild round of shingles would act like a flu shot....receiving a mild dose of the disease, where his body had already successfully fought off the Varicella Zoster Virus. In other words, him getting the shingles earlier on helped save him from the chickenpox this time.
We're thankful about Kyle but can't help but be concerned for the other patients at the ROC on Monday exposed to chickenpox. Kyle has remained stronger and more resilient than most of the chemo patients at Halifax....but statistically chickenpox (or shingles) can be fatal in 15% of patients with seriously compromised auto-immune systems. We hope that none of the patients got the disease from their exposure to it on Monday.
A strange end to an already strange year.
Sleeping
12/30/08 11:51
I don't think he felt great, but Kyle did finally go to
sleep pretty late last night and slept through the
night. We count it a victory to make it through the
night of each of these chemo-Mondays.
I have become a little hesitant to render a verdict too early whether or not this is going to be a good "round" or not. Just have to wait and see....but is sure is a "plus" to have him sleep through as much of it as he can.
Later today he goes back to the hospital for an injection Neulasta.
Whew, when we get through this one.....only one more.
I have become a little hesitant to render a verdict too early whether or not this is going to be a good "round" or not. Just have to wait and see....but is sure is a "plus" to have him sleep through as much of it as he can.
Later today he goes back to the hospital for an injection Neulasta.
Whew, when we get through this one.....only one more.
Number 11: Back to Halifax
12/29/08 08:49
Pictured here is Halifax Hospital, where Kyle and Sharon are today.
A lot of stuff has happened for us, and to us, in this big old rambling building. Its where all the kids (Ian, Evan, Kaitlin, Kyle) were born. It was where I (Pat) was born, too. We went there when Evan almost lost his finger in an accident. I went there 40 years ago when I got hit by a car. When I was young, my brother Mike was treated there at Halifax for malignant melanoma. My mom was in and out there, what seemed like tons of times, late last year. Its a place full of memories, most of them of tough times.
Even thinking optimistically, today will be another.
For Kyle, today, its the 11th round of ABVD chemotherapy. We have learned that we can expect one thing.....that we can't expect is to know how it will go.
Your thoughts and prayers today would be very much appreciated......
Christmas
12/26/08 17:41
All Is Calm....
12/24/08 08:37
It's Christmas Eve.
Tonight is Christmas Eve at our house, which is a traditional get-together for us and Sharon's side of the family. It's one of those things
For a lot of reasons, this sure seems like a "special" Christmas, of appreciating people, and all that God provides. The Christmas narrative, rightly understood, is really the "good news" the angels announced....Emmanuel, "God with us". Its overwhelming, really, when you understand this isn't a myth or a children's bedtime story, but an epic, a true tale of light & darkness, life & death, good & evil, and of hopelessness and hope. We're all living in the midst of this immense story. If we can embrace that, it sure makes Christmas a lot different.
*********
We didn't send out Christmas cards, but if we did, they would go to the very people that are reading this. So we do want to take the time to really thank you for caring enough about us to follow our story, and we hope you know how much we appreciate you.
Winter Solstice
12/22/08 08:37
Yesterday was the winter solstice for 2008...the
shortest day of the year. From now on, till mid June,
the sun will come up a little earlier, and it will set
a little later, each day.
Because of the Gulf Stream, the waters in the Atlantic here in Central Florida are still relatively warm. Even after receiving chemotherapy on Monday, by Friday Kyle was out surfing (pictured here at Ponce Inlet). He is dealing with a lot of fatigue, but we think his remaining active has helped him recover round after round.
There is something strangely thereaputic, too, in immersing yourself (literally) in God's creation. Back in Genesis 1, God gathered together the waters and called it the sea, and "saw that it was good". Our friend Ramay calls the ocean "God's Green Wave Pool", and it's a great mental image.
What an incredible blessing is it to both know God's grace, and enjoy the world He has created.
A Stranger here,
Strange things doth meet, strange Glory see,
Strange Treasures lodg'd in this fair World appear,
Strange all and New to me:
But that they mine should be who Nothing was,
That Strangest is of all; yet brought to pass.
-- Thomas Traherne 1636-1674
Because of the Gulf Stream, the waters in the Atlantic here in Central Florida are still relatively warm. Even after receiving chemotherapy on Monday, by Friday Kyle was out surfing (pictured here at Ponce Inlet). He is dealing with a lot of fatigue, but we think his remaining active has helped him recover round after round.
There is something strangely thereaputic, too, in immersing yourself (literally) in God's creation. Back in Genesis 1, God gathered together the waters and called it the sea, and "saw that it was good". Our friend Ramay calls the ocean "God's Green Wave Pool", and it's a great mental image.
What an incredible blessing is it to both know God's grace, and enjoy the world He has created.
A Stranger here,
Strange things doth meet, strange Glory see,
Strange Treasures lodg'd in this fair World appear,
Strange all and New to me:
But that they mine should be who Nothing was,
That Strangest is of all; yet brought to pass.
-- Thomas Traherne 1636-1674
10 Down......
12/19/08 09:54
Okay, it looks like this one is over.
It actually was pretty much "over" a day or so ago, with Kyle fairly well snapped back. The only residual effect, he said, was sort of a fatigue, and not a lot of physical stamina. But I am sure all this is to be expected. When Sharon tells me stories of her interactions with the others in the chemo department (reminding her of Solzhentisyn's book "Cancer Ward") and how
sad and hopeless the majority of the "stories"
are on the 2nd Floor there at the Regional Oncology
Center, it makes us especially thankful for the success
and progress we've seen in the chemotherapy so far.
This whole deal could be worse; for most people there
at the ROC it is worse.
So now, for Kyle there's no more chemo till after Christmas. Number #11 is the Monday after Christmas, and after that.....one more.
We know that the radiation is going to have its own "issues", but we'll deal with that then. Right now, the end of the chemotherapy is at least in sight.
It actually was pretty much "over" a day or so ago, with Kyle fairly well snapped back. The only residual effect, he said, was sort of a fatigue, and not a lot of physical stamina. But I am sure all this is to be expected. When Sharon tells me stories of her interactions with the others in the chemo department (reminding her of Solzhentisyn's book "Cancer Ward") and how
So now, for Kyle there's no more chemo till after Christmas. Number #11 is the Monday after Christmas, and after that.....one more.
We know that the radiation is going to have its own "issues", but we'll deal with that then. Right now, the end of the chemotherapy is at least in sight.
Still Good...
12/18/08 09:49
Well, Good Again, Actually....
12/16/08 16:48
Last night Kyle was pretty slammed with the whole chemo experience, but today....today's a different day for sure.
Last night we were thinking he would sink back into the chemo fog for a few days, but today, it's not the case. Kyle feels a lot better, drove himself to the hospital for his Neulasta, and is out surfing this afternoon. Yes, its a roller coaster....last night he looked like the loser of a UFC title fight, and now today the kid is out surfing. We're all acting a little schizophrenic about it, I'm sure.
So, maybe we're already passed the "not so good" stage of last night. If so, we're stoked.
If he's through it, then its just two more to go!
Not So Good
12/16/08 09:02
We were probably lulled into thinking that the
remainder of the chemos would be like the last
few...not so bad, or at least as bad as the first
bunch. Yesterday, though, was a bit of a throwback to
the earlier ones. Not terrible, but not so good either.
When I came home from work, Kyle was "out of it", laid out on the fireplace hearth. He had been sick earlier, and he would get sick and kinda stuperous throughout the evening. The chemo drugs were doing a number on him again, like the earlier rounds.
Finally late in the evening he finally fell into a deep sleep and made it through the night.
(Funny, late at night while he was in a really deep comatose sleep, I could hear him gently humming some song. I didn't recognize what song it was, but it was interesting to see Kyle so deeply "out" still quietly humming a tune)
*****
We want to both hold onto the promise that ultimately "all is well", while at the same time having to sadly watch our kids lose the child-like innocence about this world being a "safe place". The world, they're finding, isn't particularly safe at all.
There's two pictures we're holding onto.
One is God's family as pictured in the book of Revelation, at the end of the Bible: joyous and happy...."all is well!" It ended and it turned out okay! We were in good hands after all!
And yet another picture is seen in the middle of the gospels: Jesus standing at the tomb of Lazarus, standing there and unashamedly weeping for his cousin. He knew how it was ultimately going to turn out, and yet......
*******************
It's probably okay to be a little sad about all this.
When I came home from work, Kyle was "out of it", laid out on the fireplace hearth. He had been sick earlier, and he would get sick and kinda stuperous throughout the evening. The chemo drugs were doing a number on him again, like the earlier rounds.
Finally late in the evening he finally fell into a deep sleep and made it through the night.
(Funny, late at night while he was in a really deep comatose sleep, I could hear him gently humming some song. I didn't recognize what song it was, but it was interesting to see Kyle so deeply "out" still quietly humming a tune)
*****
We want to both hold onto the promise that ultimately "all is well", while at the same time having to sadly watch our kids lose the child-like innocence about this world being a "safe place". The world, they're finding, isn't particularly safe at all.
There's two pictures we're holding onto.
One is God's family as pictured in the book of Revelation, at the end of the Bible: joyous and happy...."all is well!" It ended and it turned out okay! We were in good hands after all!
And yet another picture is seen in the middle of the gospels: Jesus standing at the tomb of Lazarus, standing there and unashamedly weeping for his cousin. He knew how it was ultimately going to turn out, and yet......
*******************
It's probably okay to be a little sad about all this.
Sailing Into Number 10.
12/15/08 08:26
In a few minutes, Sharon and Kyle will leave for the Regional Oncology Center. Chemotherapy #10.
We're in the double-digits...five-sixth of the way done....three more to go. There's all sort of mathematical ways to do the calculations.
These Monday mornings are always a little weird, with no way knowing what to expect. Like when the early explorers used to sail out from Spain or Portugal, not knowing if the sea would be relatively calm, or they would run into the dreaded huracán. When the people on the dock would would send them off with a "Vaya con Dios", it was a legitimate sentiment..."boys, we hope God gets you there".
We run into a lot of people who are praying for Kyle, with this "Vaya con Dios" fervor. And we feel like God has responded.
If you have have ever driven down A1A, the highway that runs along the ocean between Ormond-By-The-Sea and Flagler Beach, you'll notice an interesting phenomena. It's one of the few places on Florida's east coast where this highway runs along just behind
What's happening is the eastern breezes that blow in off the ocean hit the dune line and create a powerful updraft. Even though it's invisible, it creates the lift to keep the birds sailing aloft, on course, and moving forward.
Your prayers for Kyle are like this.....though invisible, God responds to them, keeping us aloft, on course, and moving forward.
In a few months, this time will pass, and all our thoughts, prayers and concerns can be directed elsewhere. But for today, December 15th, thanks for thinking and praying for Kyle through #10. A few more, and this phase will be over.
The Mail Room
12/12/08 09:06
It seems like it was a good week for the kids.
Kaitlin had school, finishing up her fall semester at Daytona State College (used-to-be community college, now a 4 year school). Both she and Kyle worked a lot for their Aunt Nicki, in
a make-shift mail room, for a publishing company
she owns. There's enough flexibility there to work
around school and medical issues. Its great work, and
it gives them an opportunity to make money to help with
Christmas, pay for gas, etc. And it is a little fun
watching Kaitlin and Kyle work together.
Their cousins, the Spaceks, are in town for their grandfather's funeral. Although its a sad occasion, it is a good opportunity to see some extended family for the weekend.
We're coming around the corner, with #10 scheduled for Monday. Double-digits, at last. But that's a few days away....we don't want to get ahead of ourselves.
We do think its because of your prayers and God's grace that we have these weeks of relative calm and normalcy. We really don't take your thoughts and prayers lightly.
Kaitlin had school, finishing up her fall semester at Daytona State College (used-to-be community college, now a 4 year school). Both she and Kyle worked a lot for their Aunt Nicki, in
Their cousins, the Spaceks, are in town for their grandfather's funeral. Although its a sad occasion, it is a good opportunity to see some extended family for the weekend.
We're coming around the corner, with #10 scheduled for Monday. Double-digits, at last. But that's a few days away....we don't want to get ahead of ourselves.
We do think its because of your prayers and God's grace that we have these weeks of relative calm and normalcy. We really don't take your thoughts and prayers lightly.
Off Week
12/08/08 08:43
Ultimate Frisbee.
12/03/08 10:17
Well, I don't want to make more of this than it is, but
likewise I don't want to fail to appreciate another
small miracle when I see one.
Last night, a little more than 24 hrs. about receiving a full dose of ABVD chemotherapy, Kyle spent the evening playing "Ultimate Frisbee". No, the amazing thing isn't that people still play Frisbee (like 50 years after it was invented)....the amazing thing is that Kyle wasn't flat on his back, or worse.
The first rounds of chemotherapy were different. Way different. And far more "typical", from what we understood.
Usually on the second night after chemo, he was what was called. "somnolent" : sleeping, half-sleeping, bumping around, aggressive, or mumbling semi-coherently or not at all. And we were told that the chemo symptoms could get progressively worse. Like I've said before, there's a tremendous drop-out rate from chemotherapy; some people just can't go the distance. It can be brutal, and some people die trying.
So, with that said, Kyle playing Frisbee on the second night is, at the very least, a huge blessing from the Lord, and quite possibly a minor miracle.
That's what we're chalking it up to.
Last night, a little more than 24 hrs. about receiving a full dose of ABVD chemotherapy, Kyle spent the evening playing "Ultimate Frisbee". No, the amazing thing isn't that people still play Frisbee (like 50 years after it was invented)....the amazing thing is that Kyle wasn't flat on his back, or worse.
The first rounds of chemotherapy were different. Way different. And far more "typical", from what we understood.
Usually on the second night after chemo, he was what was called. "somnolent" : sleeping, half-sleeping, bumping around, aggressive, or mumbling semi-coherently or not at all. And we were told that the chemo symptoms could get progressively worse. Like I've said before, there's a tremendous drop-out rate from chemotherapy; some people just can't go the distance. It can be brutal, and some people die trying.
So, with that said, Kyle playing Frisbee on the second night is, at the very least, a huge blessing from the Lord, and quite possibly a minor miracle.
That's what we're chalking it up to.
So Far, So Good..
12/02/08 17:55
He was pretty funny, though; after getting sick, he quickly laughed and tried to calculate the dollar value of the medicines he just lost in the bathroom (side note: when these pills run between $30 to $60 apiece, it is an interesting game!). You kinda need a sense of humor to help get through some of this stuff.
So he got through it, and slept through the night and well into the morning.
In fact, today for the first time, he drove himself back to the ROC for his day-after shot of Neulasta. Normally he'd have Sharon drive him, but he felt good enough to do it....the day after getting the full-on chemo blast. We have got to be thankful for his feeling this well.
I can't really speak for Kyle, but if this is as bad as it gets for #9, this would be good.
Then only three more to go.
Round #9...and Thanksgiving.
12/01/08 08:49
It's Monday. It's the beginning of December (and
Sharon's birthday). And this morning, Kyle and Sharon
are on their way to the ROC....again.
This all began in the middle of the summer, and now its December. It's been a long haul, and I am sure Kyle is getting weary of the journey. He asked me last night to pray that this round, Round #9, goes the way that Number #7 and #8 went....with their tolerable reactions to the chemotherapy. I told him I would. And if any of you reading this are praying types, please do the same. We sure would appreciate it. I don't blame Kyle for being concerned, walking into another one.
What a contrast. We got back from the mountains of North Georgia yesterday afternoon, after a great Thanksgiving with Sharon's family. (The only regret I have is that I missed a pretty rare opportunity to be with all of my side of the family, who were in town).
Our time in Georgia was time of resting, hanging out, talking, eating, encouraging, playing music. It really was, in every sense of the word, a time of thanksgiving.
It was a time of being 450 miles...no, a million miles....away from Remicade and ABVD chemotherapy, away from the Regional Oncology Center, away from the Halifax Infusion Center, away from Neulasta and Zantax and steroids and sleeping pills. It was the smell and taste of turkey and stuffing instead of bitter, wicked chemicals.
I was thinking that this picture is like something I read recently in the book of Revelation. The whole book ends with a time of eating and celebrating and singing, of being together with people and a family that cares for you...and a time of putting the pains and fears of the past a million miles away. Every tear, it says, will be wiped away.
I don't think all that in Revelation is a metaphor for anything. I think we get passing glimpses of the "hope we have before us" in times like this Thanksgiving. And we were super thankful for this glimpse.
But for now, for today.......its Round #9.
This all began in the middle of the summer, and now its December. It's been a long haul, and I am sure Kyle is getting weary of the journey. He asked me last night to pray that this round, Round #9, goes the way that Number #7 and #8 went....with their tolerable reactions to the chemotherapy. I told him I would. And if any of you reading this are praying types, please do the same. We sure would appreciate it. I don't blame Kyle for being concerned, walking into another one.
What a contrast. We got back from the mountains of North Georgia yesterday afternoon, after a great Thanksgiving with Sharon's family. (The only regret I have is that I missed a pretty rare opportunity to be with all of my side of the family, who were in town).
Our time in Georgia was time of resting, hanging out, talking, eating, encouraging, playing music. It really was, in every sense of the word, a time of thanksgiving.
It was a time of being 450 miles...no, a million miles....away from Remicade and ABVD chemotherapy, away from the Regional Oncology Center, away from the Halifax Infusion Center, away from Neulasta and Zantax and steroids and sleeping pills. It was the smell and taste of turkey and stuffing instead of bitter, wicked chemicals.
I was thinking that this picture is like something I read recently in the book of Revelation. The whole book ends with a time of eating and celebrating and singing, of being together with people and a family that cares for you...and a time of putting the pains and fears of the past a million miles away. Every tear, it says, will be wiped away.
I don't think all that in Revelation is a metaphor for anything. I think we get passing glimpses of the "hope we have before us" in times like this Thanksgiving. And we were super thankful for this glimpse.
But for now, for today.......its Round #9.
All Is Well
11/25/08 09:04
The cabin is a place is filled with memories, warm fires, good food. It's full of cousins, grandparents, aunts and uncles. It reminds me that we really do have a lot to be thankful for, and really, in the long run, "all is well".
Thanksgiving shouldn't simply be the name of a national holiday, it really is the way I would like our family to live. It's the way I want to live. How can we do that? By recognizing this: whether in sickness or in health, whether the economy is on the brink of a meltdown or not......nothing that ultimately matters is at risk. All is well.
Charles Spurgeon once said:
"All is well if it be in God's hands.
Let us, therefore, distinctly recognize God in our comforts,
in their coming to us when we are unworthy of them,
in their coming in the form in which we most require them,
and in their coming at the time when we are most in need of them."
(p.s. there is an incredible orchestral piece written by Michael W. Smith on this thought that "All Is Well". Listen to it here): 07 All Is Well 2
Thankful. Really thankful.
11/24/08 08:47
What is it about music?
You would have to admit there is something different....something special about music. There is some way that music touches the human spirit that occurs through no other means. I certainly believed this, even when I was a little kid. I believe that music was one of God's creations.....by that, I really do mean a creative act of God....that does effect a person's spirit, whether they're willing to attribute it to God or not.
When you read through the Psalms, particularly, it seems like its assumed that people would sing when they were speaking to, or about, God. C.S. Lewis once described the ideal church as being "a cheerful society, full of singing and rejoicing".
Our family had the opportunity to be part of such a "society" this weekend. In particular, Kyle and Sharon and I had the privilege of being part of the worship team, playing instruments and singing and worshiping with hundreds of our friends. There's nothing like this for setting your heart and mind right about what is important....what is permanent.....what really counts.
What a perfect way to start off the week.
Taking Pictures, Piling Stones
11/20/08 08:25
We
really have taken a lot of photographs through all of
this.
Pictures of Kaitlin in the emergency room....
of the Remicade infusions....
in the chemo lab.....
of our little Kyle, now bald.
There's a part of me that believes that will be important to remember all of this, and remember it well.
There's an odd story in the Old Testament. It's in the book of Joshua.
See, after 40 years, the Israelites were finally, finally crossing the Jordan River into the "promised land". Moses was dead. At the very end of the trip, God miraculously stops the flow of the river (which was at flood stage) so all the people could get across. A pretty dramatic end to an epic journey.
And then the leader, Joshua, does something really interesting. He tells the people to send a representative of each of the 12 tribes into the riverbed, and each pick up a huge stone and bring it to the shoreline. Then Joshua makes a huge pile out of these stones, creating what was a big memorial. When he was asked what was up, he essentially said this:
"When your kids ask about this pile of stones, you need to tell them the story of what God has done. You need to remember exactly what happened here".
They needed to remember the whips and the rapes and the slavery in Egypt.
The needed to remember the millions buried in the sands of the desert.
They needed to remember the cloud-by-day, and the fire-by-night of God's presence.
The needed to remember the Tabernacle, the shoes that didn't wear out, the snakes.
The needed to remember the manna, the quails, the water flowing from rocks. God's care and provision.
They needed to remember the parting of the Red Sea, and now, the parting of the flooded Jordan River.
They needed to remember it all.
If God's provision means anything, it means you have to hold it all, the good and the bad. You have to remember.
I want us to remember the chemo lab, the tears, remember Kaitlin's sickness, Kyle's hair loss.
I want to remember the day I told Sharon that Kyle had cancer.
I want to remember seeing the firey images of the PET scans.
I want to remember the port and catheter into Kyle's heart.
I want to remember how the Lord both directly and indirectly (through many of you reading this) provided and cared for us.
I want to remember the miracles and fears and prayers and answers along the way.
I want to remember back to this time, when the Lord got us across our little Jordan.....one way or the other.
I think this is important. Really important.
There's another cool "stone" story, a little further on in the Old Testament. The Israelites had now been in the promised land for quite a while, they had really gone through a time of failure and testing. But the people decided to repent and start trusting God again, so the prophet Samuel set up another memorial stone, to help them remember what had happened, how they had gotten to where they were. Samuel named this stone (oddly enough) "Ebenezer". Yeah, pretty weird name. But the word is Hebrew, and it means "Thus far the Lord has helped us".
"Thus far the Lord has helped us".
It's good to remember.
Pictures of Kaitlin in the emergency room....
of the Remicade infusions....
in the chemo lab.....
of our little Kyle, now bald.
There's a part of me that believes that will be important to remember all of this, and remember it well.
There's an odd story in the Old Testament. It's in the book of Joshua.
See, after 40 years, the Israelites were finally, finally crossing the Jordan River into the "promised land". Moses was dead. At the very end of the trip, God miraculously stops the flow of the river (which was at flood stage) so all the people could get across. A pretty dramatic end to an epic journey.
And then the leader, Joshua, does something really interesting. He tells the people to send a representative of each of the 12 tribes into the riverbed, and each pick up a huge stone and bring it to the shoreline. Then Joshua makes a huge pile out of these stones, creating what was a big memorial. When he was asked what was up, he essentially said this:
"When your kids ask about this pile of stones, you need to tell them the story of what God has done. You need to remember exactly what happened here".
They needed to remember the whips and the rapes and the slavery in Egypt.
The needed to remember the millions buried in the sands of the desert.
They needed to remember the cloud-by-day, and the fire-by-night of God's presence.
The needed to remember the Tabernacle, the shoes that didn't wear out, the snakes.
The needed to remember the manna, the quails, the water flowing from rocks. God's care and provision.
They needed to remember the parting of the Red Sea, and now, the parting of the flooded Jordan River.
They needed to remember it all.
If God's provision means anything, it means you have to hold it all, the good and the bad. You have to remember.
I want us to remember the chemo lab, the tears, remember Kaitlin's sickness, Kyle's hair loss.
I want to remember the day I told Sharon that Kyle had cancer.
I want to remember seeing the firey images of the PET scans.
I want to remember the port and catheter into Kyle's heart.
I want to remember how the Lord both directly and indirectly (through many of you reading this) provided and cared for us.
I want to remember the miracles and fears and prayers and answers along the way.
I want to remember back to this time, when the Lord got us across our little Jordan.....one way or the other.
I think this is important. Really important.
There's another cool "stone" story, a little further on in the Old Testament. The Israelites had now been in the promised land for quite a while, they had really gone through a time of failure and testing. But the people decided to repent and start trusting God again, so the prophet Samuel set up another memorial stone, to help them remember what had happened, how they had gotten to where they were. Samuel named this stone (oddly enough) "Ebenezer". Yeah, pretty weird name. But the word is Hebrew, and it means "Thus far the Lord has helped us".
"Thus far the Lord has helped us".
It's good to remember.
Back to Everyday Life
11/17/08 10:59
This is Monday, the beginning of one of Kyle's "off weeks". Hoping and praying for a week of "normal living"!
Have been communicating today with University of Florida/Shands in Jacksonville, and Kyle is supposed to start the set-up for receiving radiation therapy in early January. I think (not sure, yet) this is the beginning of the computer "mapping" of Kyle's torso, where they establish where to deliver the doses of radiation. It's very involved. Unlike chemotherapy, which seems so old-school and strangely primitive, this photon/proton radiation deal is very futuristic, like something from The Matrix.
Man, I am not complaining. We' re thankful to the Lord that Kyle is able to get treated at Shands, and continue to be amazed and thankful to God that United Heathcare is picking up the tab......$160,000.00. Not a typo....this is what it would have been. And like you, our savings have been devastated with the current stock market (anyone interested in buying some nice Templeton mutual funds?), so this level of thankfulness for God's provision is all the greater in light of the current economic times.
I really don't know what we would have done.
Road Trip: Lynchburg
11/14/08 15:08
Well,
Kyle was feeling a little
better....and....
Kaitlin had been brewing an idea about driving to Lynchburg, Virginia to see her brother Ian (and her old roommates) for the weekend, and Evan thought he would join in.
At the last minute Kyle thought he would be okay enough to go, so.....off they went early this morning. They made it there around noon today (Friday).
Kyle's stomach is still burning, and the doctor is phoning in another prescription to the pharmacy in Lynchburg. Hope it helps.
We thought it would be worth it, to try. The "safe thing" would have been to encourage Kyle to stick around town...but....
Road trips are really neat, and this was a unique opportunity for the three other kids to go visit their big brother at Liberty University. If Kyle's stomach fires cool down, this would be a great get-away from the house and from chemo and from Daytona for a few days.
So they're in Virginia.
Kaitlin had been brewing an idea about driving to Lynchburg, Virginia to see her brother Ian (and her old roommates) for the weekend, and Evan thought he would join in.
At the last minute Kyle thought he would be okay enough to go, so.....off they went early this morning. They made it there around noon today (Friday).
Kyle's stomach is still burning, and the doctor is phoning in another prescription to the pharmacy in Lynchburg. Hope it helps.
We thought it would be worth it, to try. The "safe thing" would have been to encourage Kyle to stick around town...but....
Road trips are really neat, and this was a unique opportunity for the three other kids to go visit their big brother at Liberty University. If Kyle's stomach fires cool down, this would be a great get-away from the house and from chemo and from Daytona for a few days.
So they're in Virginia.
Thursday
11/13/08 13:05
The main residual effect with Kyle appears to be some hard-core stomach acid issues, brought about by the chemo. We were told this was a possibility from the oncologist.....chemicals doing weird things to the stomach.
Industrial strength Zantac doesn't faze it. So Kyle just has to ride it out over the next day or so.......
Like I said, "it could be worse"........way worse. And, although I know its still no fun for Kyle, its not worse, and I'm thankful.
Four more to go.
Could Be Worse....
11/11/08 10:54
Kyle
came home from the ROC yesterday after getting chemo'd
("chemo'd"....that is
a
verb, right?) and until later last night, seemed to
feel pretty good.
Finally he did get sick late in the evening, but after awhile it passed. He had been sleeping for nearly 11 hours when I came to work this morning. Good to seem him sleep. The evening could have been far worse.
Sharon was there at the Oncology Center yesterday for almost 8 hours....getting there with Kyle, wading through paperwork and tests, sitting through the chemo process, and then waiting (while Kyle left with Kyra) to arrange the next appointment. What a long grueling day.
What I think makes it more so is that the waiting room is filled with stories, most of them very sad stories.
One man talked with Kyle and Sharon; he too was going through chemotherapy, but had been sick....really sick....for the previous 32 days without relief. He had lost over 30 pounds. He didn't have any neighbors or friends or family in Florida that could or would help him; he was fighting this entirely on his own.
Another young mother talked with Sharon; the woman had a young child at home. The doctors had caught the mother's breast cancer far too late. They were going to allow her 4 palliative treatements, and then stop....there was really nothing else they could do. She was dying, and the doctors knew it and she knew it, and there was not a whole lot anyone could do about it.
We don't like seeing Kyle sick, and if he were far worse off, we still would be trusting in God's providence in all that. But, for now, we're not being asked to endure more than we can handle.
Finally he did get sick late in the evening, but after awhile it passed. He had been sleeping for nearly 11 hours when I came to work this morning. Good to seem him sleep. The evening could have been far worse.
Sharon was there at the Oncology Center yesterday for almost 8 hours....getting there with Kyle, wading through paperwork and tests, sitting through the chemo process, and then waiting (while Kyle left with Kyra) to arrange the next appointment. What a long grueling day.
What I think makes it more so is that the waiting room is filled with stories, most of them very sad stories.
One man talked with Kyle and Sharon; he too was going through chemotherapy, but had been sick....really sick....for the previous 32 days without relief. He had lost over 30 pounds. He didn't have any neighbors or friends or family in Florida that could or would help him; he was fighting this entirely on his own.
Another young mother talked with Sharon; the woman had a young child at home. The doctors had caught the mother's breast cancer far too late. They were going to allow her 4 palliative treatements, and then stop....there was really nothing else they could do. She was dying, and the doctors knew it and she knew it, and there was not a whole lot anyone could do about it.
We don't like seeing Kyle sick, and if he were far worse off, we still would be trusting in God's providence in all that. But, for now, we're not being asked to endure more than we can handle.
Number 8
11/10/08 08:20
"Life is like a box of chocolates. You never know what you're gonna get" - Forrest Gump
We've come to understand one thing after after watching Kyle go through 7 previous rounds of ABVD chemotherapy: we don't know what to expect, for sure.
Previous rounds have included:
Some with sleepiness....and some with sleeplessness;
Some with hunger & thirst.....and some with near-dehydration;
Some with walking around in the sunshine.....and also some with laying around for days in a darkened room.
So today starts Number 8, and we know now that there's no way to forecast how he's going to fare through this one. We have prayed that this one, Number 8, would be like the last one, with a minimum of physical symptoms. Also we prayed that steroids would not have the personality-altering effect they often have. But in any case, today starts a several-day journey into the unknown.
It's fitting, though, to stop and be thankful for the many, many great days we do have. Here's a short video we took last Friday, of Kyle surfing at Sunglow Pier (he's easy to spot now in the line-up). On his off weeks, Kyle remains strong and healthy. The waves, the sun, pelicans, the breeze off the ocean.....reminds you of the blessings of God's good creation, and of God's goodness that we should never take for granted.
Hair Today...
11/06/08 16:53
As you know, hair loss is pretty common for chemo patients....the reason being is that the chemicals target any fast-growing cells. Both cancer cells...and hair cells....grow more quickly that the rest of the cells in your body.
Even when Evan was done, Kyle was still a little scruffy, so last night Kyle went ahead and took the little scruffs off once and for all. He'll probably look this way till late January. Its a little surprising to see at first, but he actually looks pretty good like this. Looks a lot like Pastor Dennis at our church. Thankfully Kyle's got a nice shaped head (well, Dennis does, too, come to think of it).
Relative Calm
11/05/08 09:25
Well, last night our country did elect a new president.
Wow, who even knows what all the end result of that
might be.
As far as our family, this has been a week of relative calm. Kyle and Kaitlin both working this week (for their Aunt Nicki,
mainly).
Sharon got treated on Monday by Dr. Crouch and is
feeling better. Yesterday, Kyle went surfing yesterday
with his friend Adam Kirk. Kaitlin continues to feel
good, and is doing well in school (gave a presentation
last week to the class about "Why Your Next PC Should
Be A Mac"!).
Evan was home last weekend from Gainesville, and took an electric razor to Kyle's head. Kyle's got the Michael Jordan look going now.
Ian continues to power his way through school at Liberty. He had hoped to be able to finish up down here, at Daytona State College or University of Central Florida, but it looks like that's not going to work out.
Like all the rest of you, all our life savings are in mutual funds, which (thanks to the stock market) are all in the proverbial tank.
But you know, still all in all, life is pretty good! We're still here, the kids are doing great, and this a week we can relax and enjoy life.
As far as our family, this has been a week of relative calm. Kyle and Kaitlin both working this week (for their Aunt Nicki,
Evan was home last weekend from Gainesville, and took an electric razor to Kyle's head. Kyle's got the Michael Jordan look going now.
Ian continues to power his way through school at Liberty. He had hoped to be able to finish up down here, at Daytona State College or University of Central Florida, but it looks like that's not going to work out.
Like all the rest of you, all our life savings are in mutual funds, which (thanks to the stock market) are all in the proverbial tank.
But you know, still all in all, life is pretty good! We're still here, the kids are doing great, and this a week we can relax and enjoy life.
If It's Not One Thing...
11/03/08 12:33
Sharon got sick last night...cold/flu symptoms, and a
fever.
Normally
this wouldn't be newsworthy, but if it would have
been
strep
(Sharon thought it might have been), it would mean we'd
have to do something with her and Kyle. With his
suppressed immune system, he's not supposed to be
around sick people, and as of this morning, she
definitely qualified!
Anyway we went to the doctor this morning. Dr. Crouch gave Sharon a couple of shots (antibiotics), and said he thought she'd be okay. So, we're all moving on ahead.
Anyway we went to the doctor this morning. Dr. Crouch gave Sharon a couple of shots (antibiotics), and said he thought she'd be okay. So, we're all moving on ahead.
Week's End
10/31/08 10:51
Drinking Deadly Things
10/29/08 09:14
Matthew 9:35 - They shall take up serpents; and if they drink any deadly thing, it shall not hurt them; they shall lay hands on the sick and they shall recover.......
I know this whole thing sounds tremendously Pentacostal-ly....but if you have a better explanation for this, go
They distribute ABVD chemotherapthy based on body weight (that's one of the reasons they weigh Kyle each time), and Kyle got the full-meal-deal of it Monday afternoon....the full chemo "bomb". The exact same dose of the exact same chemicals as the previous 6 rounds.
He got a little sick at the chemo center, but after that, walked out the doors of the ROC into what seems like three days of perfect physical health. No sickness, no abnormal sleeping, enjoying normal eating....it almost seems impossible, a person intaking so many chemicals and feeling physically fine. From a medical standpoint, this is really hard to explain away.
In any case, we're attributing this one to answered prayer...so, once again, thank you, Lord.
Total Surprise
10/28/08 08:54
Last
night was a total surprise....it shouldn't have been,
but it was.
Normally when I get home on these every-other-Monday-nights, I step into a house in the midst of some sort of drama. "He's sick"...."gotta run out and get this prescription filled"....."the chemo is affecting his emotions". Many Monday nights I haven't seen Kyle at all, and would only expect to see him again sometime Tuesday or maybe even Wednesday when he "resurfaced".
Not
last night.
When I came home, there was laughter and joking, sitting outside in the cold breeze and talking with Kyle, Kaitlin, Kyra, and Sharon. It was so different it was surreal. Everything seemed normal! (note: the picture on the left of Kaitlin, Kyle and Kyra was taken last night)
I was surprised....I know people getting sick from a 10cc injection for their flu shot; Kyle had a milk-jug full of poison dripped into his bloodstream a few hours earlier.
I am ashamed to say I was surprised. I claim to be a person with at least a shred of faith, and dear friends like you all had specifically prayed for a night like this, and it happened.
So, thanks be to God for a happy night of laughter, and a sunset, and the breeze. Of talk about surfing, talk about chili, talk about the future. It was the night that would have typically been the nightmarish evening of Kyle's "descent into the maelstrom"......but not last night.
Normally when I get home on these every-other-Monday-nights, I step into a house in the midst of some sort of drama. "He's sick"...."gotta run out and get this prescription filled"....."the chemo is affecting his emotions". Many Monday nights I haven't seen Kyle at all, and would only expect to see him again sometime Tuesday or maybe even Wednesday when he "resurfaced".
When I came home, there was laughter and joking, sitting outside in the cold breeze and talking with Kyle, Kaitlin, Kyra, and Sharon. It was so different it was surreal. Everything seemed normal! (note: the picture on the left of Kaitlin, Kyle and Kyra was taken last night)
I was surprised....I know people getting sick from a 10cc injection for their flu shot; Kyle had a milk-jug full of poison dripped into his bloodstream a few hours earlier.
I am ashamed to say I was surprised. I claim to be a person with at least a shred of faith, and dear friends like you all had specifically prayed for a night like this, and it happened.
So, thanks be to God for a happy night of laughter, and a sunset, and the breeze. Of talk about surfing, talk about chili, talk about the future. It was the night that would have typically been the nightmarish evening of Kyle's "descent into the maelstrom"......but not last night.
Number 7
10/27/08 08:54
It's
"that" Monday. Again.
In a few minutes Sharon and Kyle will be loading up and driving to the "Herbert D. Kerman Regional Oncology Center", where Kyle will receive his seventh round of ABVD chemotherapy.
We
super appreciate all the notes and emails that Kyle,
and we, have received. We
know that we all need to keep going, keep pushing
through this. I
think for Kyle, and everyone else, instead of becoming
more routine, it is taking more effort and focus to do
this.
There's an interesting verse in the Psalms, Psalm 42:7, where the songwriter says to God: "deep calls to deep in the roar of your waterfalls; all your waves and breakers have swept (or "rolled") over me." The author evidentially knew the ocean well, and likened his situation to getting drilled by huge, smashing waves.
In this month's "Water Magazine" (a surfing publication), legendary South African surfer Shaun Tompson was asked what was his biggest fear in surfing. He said: "caught under three". Although that sounds a little cryptic, all surfers would understand: if you get pushed under...way under...by a huge wave, you can be stuck so deep underwater that you can't surface, and second and third waves would just keep pushing and pushing and pushing you under. Being held down too long in the roiling, dark turmoil underwater is a fearsome thing.
Yesterday after church, Pastor Larry, his wife Connie, Ramay, Kyra and Sharon and I had a chance to pray with Kyle. We prayed for strength and endurance, and that this round, Number #7, wouldn't push him far down.
In a few minutes Sharon and Kyle will be loading up and driving to the "Herbert D. Kerman Regional Oncology Center", where Kyle will receive his seventh round of ABVD chemotherapy.
There's an interesting verse in the Psalms, Psalm 42:7, where the songwriter says to God: "deep calls to deep in the roar of your waterfalls; all your waves and breakers have swept (or "rolled") over me." The author evidentially knew the ocean well, and likened his situation to getting drilled by huge, smashing waves.
In this month's "Water Magazine" (a surfing publication), legendary South African surfer Shaun Tompson was asked what was his biggest fear in surfing. He said: "caught under three". Although that sounds a little cryptic, all surfers would understand: if you get pushed under...way under...by a huge wave, you can be stuck so deep underwater that you can't surface, and second and third waves would just keep pushing and pushing and pushing you under. Being held down too long in the roiling, dark turmoil underwater is a fearsome thing.
Yesterday after church, Pastor Larry, his wife Connie, Ramay, Kyra and Sharon and I had a chance to pray with Kyle. We prayed for strength and endurance, and that this round, Number #7, wouldn't push him far down.
Unwinding
10/24/08 09:25
"I
feel... thin.
Sort of stretched, like... butter scraped over too much
bread." -Bilbo
Baggins
We're back now, but Sharon and I took a few days off and went to St. Augustine for a time of reading, thinking, relaxing, talking. It was really, really great to step away for a couple of days.
Sometimes you don't know how tightly you'd been wound until you get a chance to unwind.
Kaitlin and Kyle did a great job while we were gone. Although they're the ones who are sick, they were wonderfully supportive for us to go away a bit.
All this really is a team effort.
We're back now, but Sharon and I took a few days off and went to St. Augustine for a time of reading, thinking, relaxing, talking. It was really, really great to step away for a couple of days.
Sometimes you don't know how tightly you'd been wound until you get a chance to unwind.
Kaitlin and Kyle did a great job while we were gone. Although they're the ones who are sick, they were wonderfully supportive for us to go away a bit.
All this really is a team effort.
Half-Full Glass
10/20/08 08:46
I know we can look at things either optimistically....or "not so much".
I also am aware that I speak as someone who's not going through any sickness. But even as a parent, I do think we have lots of
What a great weekend. Went surfing with Kyle, and Ramay & Simon on Saturday morning. Clear blue water, fun little waves. Sunday was a great day at church, with a message of hope and promise. Lunch of taco salad with the Lewis's. At night, a mild nor'easter was blowing, and we sat outside with Kaitlin and Ben, watching Kyle and Kyra carve a pumpkin. Yeah, life is good.
A lot of chemo patients are sick the whole time....six months of unmitigated nausea, unrelenting fatigue, depression. A lot of people simply quit chemotherapy, thinking the cure is worse than the disease. Yes, the whole experience for Kyle in particular, and all the family in general, is a roller coaster.....but I am thankful that even through all this, there are days upon days of happy, joyful living that can be loved and appreciated.
And this weekend were some of those kinds of days.
Picture Frame
10/17/08 11:23
This is the picture (yeah, they're sitting on a fake alligator....we're Floridians!), but more importantly, this is the verse on the frame... words that can be trusted in faith:
""For
I know the plans I have for you", declares the Lord,
"plans to prosper
you and not to harm you, plans to give you
hope..........
..........and a future..."
Jeremiah 29:11
Almost Running Out of Gas......
10/16/08 10:37
Whew, a close one.
Ever run way low on gas, so much so that you feel your engine sputtering and running out of fuel? People can do that too......
Up through last night, Kyle had eaten (and drunk) so little, we (and Dr. Sorathia) were concerned. Chemo patients often suffer dehydration. Dr. Sorathia said that Kyle would need an IV infusion this morning (Thursday). We were to arrive at Halifax Hospital at 0900 hrs for an IV for Kyle, along with an injection of Decadron, the anti-nausea drug that was skipped on Monday.
We were actually going to ask that they forego the Decadron...to introduce this steroid on a Thursday would mean that Kyle would be feeling weird for many more days. If necessary, they could have Kyle keep going, fighting the nausea using some other drug.
Well, lo and behold, when Kyle wakes up this morning, he's clear-headed (as the ER people say, "Alert and Oriented x3") and feeling well....drinks two glasses of milk, and has a good breakfast. He's back.
We did go to the hospital but reported to the ROC nurses that Kyle was now eating and drinking and feeling okay, and they said that he could go home. He was eating and running on his own energy......
So....it looks like he's done with Round #6. No more IV's, no more steroids for this round.
Thank you, Lord.
Even Youths Grow Tired And Weary....
10/15/08 08:52
Within the next day or so, he should be "through" this, the 6th round out of 12. When he clears this one, Kyle's halfway through chemotherapy. Not sure if this is a encouraging thought to him or not; it might be a "yay, I'm halfway through!!" or it might be "I'm only halfway through??". I am sure being tired and wrung out could affect his perspective.
When he comes out of it, I'll have to ask him.
Bad Chemistry
10/14/08 08:43
Man, what a odd thing chemotherapy is....sometimes it seems like a high-school