As I write we are hanging out in the ER with Camryn. At six o'clock this morning she woke up with a fever...which is no good. We called the doctors and headed down to UCLA.
Camryn is admitted, but we are waiting for a room upstairs...hopefully it won't be too long. Camryn is doing well, she is sleeping now while meds are running. We are so proud of her...she does so well I cannot believe it.
We will keep you posted...we are hoping after some IV meds she'll be lots better! And we'll be home soon.
Please pray for Camryn...and Wyatt too. He cried as we left this morning knowing all to well that Cam may have to stay.
Wednesday, November 18, 2009
Saturday, November 14, 2009
membership...
Last night I realized that we have a lifetime membership to a group we would have never chosen, but cannot imagine our lives without...childhood cancer.
Jason and I went on a date night last night to hear Dr.A's band play in Santa Monica. We had heard some of Dr.A's music while we were in the hospital, so it was quite fun to get the invite and go. Many thanks to T and Ali for watching the kids for us...we certainly appreciate it!
As people were beginning to arrive it became obvious that there was a common thread throughout the people being introduced by Dr.A...parents of children with cancer. We were all sitting together, chatting with each other, recognizing faces and also enjoying the company of some of the nurses too. Jason and I truly enjoyed our evening, but many thoughts ran through my head that to any one outside the *group* we all looked like a group of work friends or something like that. No one would ever guess that we are a unique group, some whose children are doing well and some whose little ones are enjoying the fullness of heaven. It was good to be there...good to realize that we as a family are not alone, yes no one in our immediate friendship circle has a child with cancer. But, there is a world of connection at UCLA that I am thankful for.
This was never a road we would have chosen to travel, none of the parents would ever choose this...but as I sat smiling and laughing with nurses who mean the world to me and listening to a doctor sing who has done more than most I was content. Yes, I would trade a lot to not be living this reality...I would love to go back in time to and erase the dreaded word leukemia and cancer from our lives. But that is not to be.
So, we are learning to live where we are and realize that we are not alone...there are many of us walking through our daily lives, believing and hoping for our children. And there are many who are learning to live without their children....my heart aches for them in ways that words cannot describe...today three years ago a beautiful young woman just a few doors down from Camryn lost her fight. And today my heart is heavy for her mom, her family and the lives she touched...I never officially had the pleasure of meeting her, but C touched my life in a way that I am forever grateful for and her mother too.
You see it is a group, a club and our membership is marked by tears, fears, joys, hopes and so much more...we wear no badges, or signs; but we are a larger group then most know. For it is now walking close to four years in this group that my heart is larger, caring more deeply and much more aware of a group of people and children fighting, believing and hoping.
And the membership lasts a lifetime...
Jason and I went on a date night last night to hear Dr.A's band play in Santa Monica. We had heard some of Dr.A's music while we were in the hospital, so it was quite fun to get the invite and go. Many thanks to T and Ali for watching the kids for us...we certainly appreciate it!
As people were beginning to arrive it became obvious that there was a common thread throughout the people being introduced by Dr.A...parents of children with cancer. We were all sitting together, chatting with each other, recognizing faces and also enjoying the company of some of the nurses too. Jason and I truly enjoyed our evening, but many thoughts ran through my head that to any one outside the *group* we all looked like a group of work friends or something like that. No one would ever guess that we are a unique group, some whose children are doing well and some whose little ones are enjoying the fullness of heaven. It was good to be there...good to realize that we as a family are not alone, yes no one in our immediate friendship circle has a child with cancer. But, there is a world of connection at UCLA that I am thankful for.
This was never a road we would have chosen to travel, none of the parents would ever choose this...but as I sat smiling and laughing with nurses who mean the world to me and listening to a doctor sing who has done more than most I was content. Yes, I would trade a lot to not be living this reality...I would love to go back in time to and erase the dreaded word leukemia and cancer from our lives. But that is not to be.
So, we are learning to live where we are and realize that we are not alone...there are many of us walking through our daily lives, believing and hoping for our children. And there are many who are learning to live without their children....my heart aches for them in ways that words cannot describe...today three years ago a beautiful young woman just a few doors down from Camryn lost her fight. And today my heart is heavy for her mom, her family and the lives she touched...I never officially had the pleasure of meeting her, but C touched my life in a way that I am forever grateful for and her mother too.
You see it is a group, a club and our membership is marked by tears, fears, joys, hopes and so much more...we wear no badges, or signs; but we are a larger group then most know. For it is now walking close to four years in this group that my heart is larger, caring more deeply and much more aware of a group of people and children fighting, believing and hoping.
And the membership lasts a lifetime...
Tuesday, November 10, 2009
by now...
You faithful blog readers know what Tuesdays are...and if you are really on top of things you know that today was Camryn's clinic appointment. :)
Yep, Camryn headed out bright and early with her Daddy this morning...honestly this girl is just the greatest, most amazing kid ever. Really, I think she is. She bounced out of bed, no tears, no fight...just I'm going to see the doctors today and when I get home then I have school and then I'm going to Grandma's house for dinner. Honestly, this girl is a planner through and through, wonder where she gets that? :)
As I said good-bye to Camryn and Jason again my heart just stops for a quick second. Ever heard that Kenny Chesney song "There goes my life?"...sometimes it's really as if I'm watching a little piece of heart drive away each time. As I turned around to head in the house there stood another part of my heart...my precious boy, Wyatt. Yes, over and over this morning as I prepared for my day I was thanking the Lord for these two blessings packaged in a really great, amazing, miraculous story. I feel a sense of awe and wonder when I think of my two kids...perhaps the most perfect, greatest gifts I have ever been given. And always I'm reminded that I hold them loosely, because they are the Lord's before they are ever mine.
I got to work and went about preparing for the day...I was a bit anxious because I was going to try an activity with my classes and I hoped they would participate well and it would work. But, more than that anxious to hear those words I long to hear every other Tuesday..."She's doing great!" As I was finishing up things in my classroom my phone rang and on the other end a darling little voice announcing..."No more steroids at night!" Can you believe it? At clinic Dr.A decided to discontinue her nightly dose of steroids and begin the wean of her morning dose. On Friday we lower her morning dose and then again next week and hopefully, fingers crossed Camryn will be completely steroid free soon. Most likely her doctors will keep her on a low every other day dose for a while just to keep the GVH in check. And you know I'm okay with that, because even throughout the weaning process so far we are seeing a slight decrease in the side-effects of the steroids.
Camryn's doctors continue to confirm that she is doing great, looks great and really is doing fabulous for being five months post-transplant. They are pleased that her GVH is under control and yet present. That her liver enzymes are well within control. That her body is responding well to cyclosporin. Overall, that Camryn is doing all the things she should be at this point...and doing them well. We got her labs this afternoon and again we are grateful for great numbers...honestly these labs are just such a boost for us. Her numbers are strong...and not really wavering which is fabulous! And to think Camryn has held these numbers without a transfusion post-transplant...Good Job Wyatt's marrow!
Once Camryn got home from clinic she had a quick lunch and then Ms. F came for school today. Camryn was super excited to have a doctors appointment and school all in one day...a busy little bee we have. I was lucky enough to make it home to observe and listen to Camryn and Ms. F interacting "doing" school as Camryn calls it. What a joy! Camryn absolutely loves school...she loves it! In fact the other day Jason and the kids dropped me off at Village for an open house and Camryn responded that she is in kindergarten, not kindergarten at Village; but sort of. And you know what? She didn't complain, or even comment that she wished it were different...she has settled into her normal, and it fits her and she is blossoming in ways that neither Jason or I expected!
Sometimes I really think that by now I should not be surprised by the variety of things that the Lord continues to bless our lives with...that by now I should be more confident, more assured, more...well, more content. I guess after this journey, a pro-longed one at that maybe I should have learned how to be all those things and more...and truth is I've grown a lot and yet there is so much more to learn and grow through...
By now...we have waited, and days we waited well and days we have waited poorly...and thankfully we are given grace to begin again and again.
Yep, Camryn headed out bright and early with her Daddy this morning...honestly this girl is just the greatest, most amazing kid ever. Really, I think she is. She bounced out of bed, no tears, no fight...just I'm going to see the doctors today and when I get home then I have school and then I'm going to Grandma's house for dinner. Honestly, this girl is a planner through and through, wonder where she gets that? :)
As I said good-bye to Camryn and Jason again my heart just stops for a quick second. Ever heard that Kenny Chesney song "There goes my life?"...sometimes it's really as if I'm watching a little piece of heart drive away each time. As I turned around to head in the house there stood another part of my heart...my precious boy, Wyatt. Yes, over and over this morning as I prepared for my day I was thanking the Lord for these two blessings packaged in a really great, amazing, miraculous story. I feel a sense of awe and wonder when I think of my two kids...perhaps the most perfect, greatest gifts I have ever been given. And always I'm reminded that I hold them loosely, because they are the Lord's before they are ever mine.
I got to work and went about preparing for the day...I was a bit anxious because I was going to try an activity with my classes and I hoped they would participate well and it would work. But, more than that anxious to hear those words I long to hear every other Tuesday..."She's doing great!" As I was finishing up things in my classroom my phone rang and on the other end a darling little voice announcing..."No more steroids at night!" Can you believe it? At clinic Dr.A decided to discontinue her nightly dose of steroids and begin the wean of her morning dose. On Friday we lower her morning dose and then again next week and hopefully, fingers crossed Camryn will be completely steroid free soon. Most likely her doctors will keep her on a low every other day dose for a while just to keep the GVH in check. And you know I'm okay with that, because even throughout the weaning process so far we are seeing a slight decrease in the side-effects of the steroids.
Camryn's doctors continue to confirm that she is doing great, looks great and really is doing fabulous for being five months post-transplant. They are pleased that her GVH is under control and yet present. That her liver enzymes are well within control. That her body is responding well to cyclosporin. Overall, that Camryn is doing all the things she should be at this point...and doing them well. We got her labs this afternoon and again we are grateful for great numbers...honestly these labs are just such a boost for us. Her numbers are strong...and not really wavering which is fabulous! And to think Camryn has held these numbers without a transfusion post-transplant...Good Job Wyatt's marrow!
Once Camryn got home from clinic she had a quick lunch and then Ms. F came for school today. Camryn was super excited to have a doctors appointment and school all in one day...a busy little bee we have. I was lucky enough to make it home to observe and listen to Camryn and Ms. F interacting "doing" school as Camryn calls it. What a joy! Camryn absolutely loves school...she loves it! In fact the other day Jason and the kids dropped me off at Village for an open house and Camryn responded that she is in kindergarten, not kindergarten at Village; but sort of. And you know what? She didn't complain, or even comment that she wished it were different...she has settled into her normal, and it fits her and she is blossoming in ways that neither Jason or I expected!
Sometimes I really think that by now I should not be surprised by the variety of things that the Lord continues to bless our lives with...that by now I should be more confident, more assured, more...well, more content. I guess after this journey, a pro-longed one at that maybe I should have learned how to be all those things and more...and truth is I've grown a lot and yet there is so much more to learn and grow through...
How do we get to the morning, to the sunshine, to the joy? There is only one way. By waiting for it. We can't hurry the dawn, no matter how anxiously we pace the floor or how impatiently we watch the clock. And so the question is not do we wait or not wait, because waiting is all we can do. The question is, HOW will we wait? Will we wait well...or will we wait poorly?~Ken Gire
By now...we have waited, and days we waited well and days we have waited poorly...and thankfully we are given grace to begin again and again.
Monday, November 9, 2009
seasons...
Yesterday we headed out to my sister's house to celebrate my niece's 15th birthday...we had a wonderful day! Camryn and Wyatt absolutely love my sister and her family and thoroughly enjoys time spent with them. They had fun walking outside, watching the little cottontail bunnies, feeding the crows...and just enjoying a little bit of country living.
As we were swinging on the porch swing looking out over the valley I noticed the trees changing color and the beauty of the autumn sky...I was struck by the seasons.
Last time we were at my sister's it was the heat of summer, so hot that you really could not enjoy time spent outside as you would practically melt. And now, it's beautiful...
Seasons...
This time last year Camryn was beginning to show signs of sickness coming on...we had made various trips to the ER and clinic and it was clear that her body was battling something. Little did we know then that the something was leukemia. A year has come and gone and with that the seasons...
I never tire of the analogy of our walk with the Lord being like seasons...because it really is. There are moments of pure delight, fun, carefree spirit and just a zest for all that comes. There are moments of preparing, for the storm clouds seem to be forming, a chill is in the air knowing what lies ahead. Then the time of cold, lonely, feeling long, dark...but, yet knowing it will not, cannot last forever...because then comes renewal, a chance to begin again. Yes our Savior walks with us throughout these seasons...as we walk with Him. I love the walk, I love the journey...I have grown and yet, I still am.
He is no where near finished with me yet...there are still days I want to scream at the sky, wanting answers, wanting reasons. There are days when the load light it's almost as if, it is not there at all. Then the moments come when I can almost sense we could be starting again...
Every evening sky, an invitation
To trace the patterned stars
And early in July, a celebration
For freedom that is ours
And I notice You
In children’s games
In those who watch them from the shade
Every drop of sun is full of fun and wonder
You are summer
And even when the trees have just surrendered
To the harvest time
Forfeiting their leaves in late September
And sending us inside
Still I notice You when change begins
And I am braced for colder winds
I will offer thanks for what has been and was to come
You are autumn
And everything in time and under heaven
Finally falls asleep
Wrapped in blankets white, all creation
Shivers underneath
And still I notice you
When branches crack
And in my breath on frosted glass
Even now in death, You open doors for life to enter
You are winter
And everything that’s new has bravely surfaced
Teaching us to breathe
What was frozen through is newly purposed
Turning all things green
So it is with You
And how You make me new
With every season’s change
And so it will be
As You are re-creating me
Summer, autumn, winter, spring
~ Nichole Nordeman
Through it all...maybe He is re-creating us, our family. Teaching us that He will carry us through every season...
As we were swinging on the porch swing looking out over the valley I noticed the trees changing color and the beauty of the autumn sky...I was struck by the seasons.
Last time we were at my sister's it was the heat of summer, so hot that you really could not enjoy time spent outside as you would practically melt. And now, it's beautiful...
Seasons...
This time last year Camryn was beginning to show signs of sickness coming on...we had made various trips to the ER and clinic and it was clear that her body was battling something. Little did we know then that the something was leukemia. A year has come and gone and with that the seasons...
I never tire of the analogy of our walk with the Lord being like seasons...because it really is. There are moments of pure delight, fun, carefree spirit and just a zest for all that comes. There are moments of preparing, for the storm clouds seem to be forming, a chill is in the air knowing what lies ahead. Then the time of cold, lonely, feeling long, dark...but, yet knowing it will not, cannot last forever...because then comes renewal, a chance to begin again. Yes our Savior walks with us throughout these seasons...as we walk with Him. I love the walk, I love the journey...I have grown and yet, I still am.
He is no where near finished with me yet...there are still days I want to scream at the sky, wanting answers, wanting reasons. There are days when the load light it's almost as if, it is not there at all. Then the moments come when I can almost sense we could be starting again...
Every evening sky, an invitation
To trace the patterned stars
And early in July, a celebration
For freedom that is ours
And I notice You
In children’s games
In those who watch them from the shade
Every drop of sun is full of fun and wonder
You are summer
And even when the trees have just surrendered
To the harvest time
Forfeiting their leaves in late September
And sending us inside
Still I notice You when change begins
And I am braced for colder winds
I will offer thanks for what has been and was to come
You are autumn
And everything in time and under heaven
Finally falls asleep
Wrapped in blankets white, all creation
Shivers underneath
And still I notice you
When branches crack
And in my breath on frosted glass
Even now in death, You open doors for life to enter
You are winter
And everything that’s new has bravely surfaced
Teaching us to breathe
What was frozen through is newly purposed
Turning all things green
So it is with You
And how You make me new
With every season’s change
And so it will be
As You are re-creating me
Summer, autumn, winter, spring
~ Nichole Nordeman
Through it all...maybe He is re-creating us, our family. Teaching us that He will carry us through every season...
Friday, November 6, 2009
super cool...
Every other Wednesday Camryn has a home health nurse come and draw her labs; this saves us a trip to UCLA so we are very thankful. The home nurse is super sweet and Camryn has taking a liking to her so drawing her labs is a quick and easy process.
Later that evening I emailed Camryn's NP to ask if I should call tomorrow and check on any med changes, as I was secretly hoping maybe, just maybe lower steroids??? Can't hurt to hope and check in, right? Camryn's NP emailed me back and said that we were really on top of things as Camryn's labs had just came through the fax...she would call in a bit once they took a look at them. Well, they called and...
Camryn's labs look...FABULOUS!!!
All her levels are holding nice and strong, her NP talked me through the usual suspects of hemoglobin, hematocrit, platelets, white cell count and ANC; all of which were great. Then she talked through Camryn's liver tests...they are coming way down...super great, super wonderful!!! She would call the doctors and see if they wanted to adjust meds at all and then they would get in touch with us.
We waited not too long and Dr.A called and explained that we were to LOWER the steroids...woohoo! Like I've said before Camryn is on a very slow wean, but any lowering means that we are getting there...the day without steroids. So Camryn is on 3mls in the morning and 1.5mls at night and if nothing changes then tomorrow it is 3mls in the morning and 1 at night! Honestly, I cannot wait until the steroids are done and the side-effects start to dwindle...so hopeful!
Camryn is way excited too, she totally noticed that her syringe had less "pink medicine" than it normally does, yeah not much gets by her.
It's super cool...Camryn is doing well and everyday we are one step further from transplant and just given one more day.
Later that evening I emailed Camryn's NP to ask if I should call tomorrow and check on any med changes, as I was secretly hoping maybe, just maybe lower steroids??? Can't hurt to hope and check in, right? Camryn's NP emailed me back and said that we were really on top of things as Camryn's labs had just came through the fax...she would call in a bit once they took a look at them. Well, they called and...
Camryn's labs look...FABULOUS!!!
All her levels are holding nice and strong, her NP talked me through the usual suspects of hemoglobin, hematocrit, platelets, white cell count and ANC; all of which were great. Then she talked through Camryn's liver tests...they are coming way down...super great, super wonderful!!! She would call the doctors and see if they wanted to adjust meds at all and then they would get in touch with us.
We waited not too long and Dr.A called and explained that we were to LOWER the steroids...woohoo! Like I've said before Camryn is on a very slow wean, but any lowering means that we are getting there...the day without steroids. So Camryn is on 3mls in the morning and 1.5mls at night and if nothing changes then tomorrow it is 3mls in the morning and 1 at night! Honestly, I cannot wait until the steroids are done and the side-effects start to dwindle...so hopeful!
Camryn is way excited too, she totally noticed that her syringe had less "pink medicine" than it normally does, yeah not much gets by her.
It's super cool...Camryn is doing well and everyday we are one step further from transplant and just given one more day.
Wednesday, November 4, 2009
five...
Five months ago Wyatt gave Camryn his bone marrow...
Amazing.
Crazy.
Hard.
Blessed.
Impossible.
Tear-filled.
Hopeful.
Thankful.
Forgettable.
Memorable.
The list really could go on and on forever the range of emotions that can be found on any given day throughout these past five months. Sometimes I cannot wrap my mind around all that has happened in the past five months and yet time seems to just stand still as well.
Five months ago we really, honestly did not know where transplant would take Camryn...our family. We were told to expect a much harder road and in ways it has been much harder and in ways it has been exactly the same. And yet five months is a significant amount of time to watch Camryn's marrow begin again...
The first time around maybe we were naive, no we were. We had no idea of what all this really meant...and now we do. Five months and doing well...five months and no fevers! Five months and some GVH mixed with high, strong numbers. Five months of taking each day as it comes...
There are fabulous days, good days, blah days and really hard days...but thankfully throughout each day there is a little survivor and a little donor who five months ago fought hard again...
Praying that the outcome of this transplant far outweighs the first one...praying that Wyatt's marrow and Camryn's GVH just wreck havoc on any and all leukemia cells that might rear there ugly head. Someone asked me "When are you out of the woods? When can you stop worrying about leukemia?" The answer quite simply is we are never out of the woods, in fact we live in the woods so to speak and leukemia, cancer will always be an ugly word...
But, for the past five months we lived without it...and my hope of all hopes is that Camryn never has to live with it again!
Grateful for five...hopeful for many, many more.
Amazing.
Crazy.
Hard.
Blessed.
Impossible.
Tear-filled.
Hopeful.
Thankful.
Forgettable.
Memorable.
The list really could go on and on forever the range of emotions that can be found on any given day throughout these past five months. Sometimes I cannot wrap my mind around all that has happened in the past five months and yet time seems to just stand still as well.
Five months ago we really, honestly did not know where transplant would take Camryn...our family. We were told to expect a much harder road and in ways it has been much harder and in ways it has been exactly the same. And yet five months is a significant amount of time to watch Camryn's marrow begin again...
The first time around maybe we were naive, no we were. We had no idea of what all this really meant...and now we do. Five months and doing well...five months and no fevers! Five months and some GVH mixed with high, strong numbers. Five months of taking each day as it comes...
There are fabulous days, good days, blah days and really hard days...but thankfully throughout each day there is a little survivor and a little donor who five months ago fought hard again...
Praying that the outcome of this transplant far outweighs the first one...praying that Wyatt's marrow and Camryn's GVH just wreck havoc on any and all leukemia cells that might rear there ugly head. Someone asked me "When are you out of the woods? When can you stop worrying about leukemia?" The answer quite simply is we are never out of the woods, in fact we live in the woods so to speak and leukemia, cancer will always be an ugly word...
But, for the past five months we lived without it...and my hope of all hopes is that Camryn never has to live with it again!
Grateful for five...hopeful for many, many more.
Monday, November 2, 2009
day +151...
Camryn has made it to the half way mark to her next big benchmark day +300...and Wednesday marks 5 months since her transplant!
WOW! Time is moving rather quickly...
The other night while changing Camryn's line she asked how long she had her line...we counted it up together and it is 8 months. She had her first line for only 8 months...and now we'll have this one longer. It is amazing to think how far Camryn has come in the past 9 months and really more importantly the past 5 months.
The other day I went back and read through a bit of my journal from her first transplant and I was drawn to an entry about my baby boy Wyatt who was about 6 weeks old...I cried as I read the words trying to explain to Wyatt why I was not holding him all day long. Why I had to leave my brand new baby with his grandmas? I felt a guilt unlike any other...and the tears just flowed freely as I read. Because in October of 2006 the future seemed so unknown...
And now at the beginning of November 2009 the future really isn't much clear. But what is...
Camryn is 5 and a half...Wyatt is 3...
We've come a long way since November of 2006...We've come a long way since February of 2009...We've come a long way since June of 2009...
A 151 days to be exact.
But who's counting?
WOW! Time is moving rather quickly...
The other night while changing Camryn's line she asked how long she had her line...we counted it up together and it is 8 months. She had her first line for only 8 months...and now we'll have this one longer. It is amazing to think how far Camryn has come in the past 9 months and really more importantly the past 5 months.
The other day I went back and read through a bit of my journal from her first transplant and I was drawn to an entry about my baby boy Wyatt who was about 6 weeks old...I cried as I read the words trying to explain to Wyatt why I was not holding him all day long. Why I had to leave my brand new baby with his grandmas? I felt a guilt unlike any other...and the tears just flowed freely as I read. Because in October of 2006 the future seemed so unknown...
And now at the beginning of November 2009 the future really isn't much clear. But what is...
Camryn is 5 and a half...Wyatt is 3...
We've come a long way since November of 2006...We've come a long way since February of 2009...We've come a long way since June of 2009...
A 151 days to be exact.
But who's counting?
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