The eve of day +300...can you believe it? I can't, simply I cannot wrap my mind around the fact that we are less than 12 hours away from the last benchmark before a year. One whole year...
I know that really I should be thrilled an honestly I am, but today has just been one of those days...just a day when I wonder, really wonder what the heck is going on and what am I doing?
I guess on one hand that is to be expected, I am a teacher and there is one day of school left until the very coveted Easter vacation, Spring Break! Yes, the anticipation is great and well my 8th grade students are every bit ready to be done...like NOW! And I can't blame them one bit because so am I.
Today at lunch with my fellow teachers I was kidding around that I have made it this far in the school year...I've hit 4th quarter! And yet honestly in my heart there is a huge amount of anxiety mixed in. Last year I did not finish...the year before I did...the year before that I didn't start and only finished...and the year before that I did not finish. So over the course of the past four years my success at finishing a year of work has been less than stellar. And I know why that is, but I find that maybe just maybe if I can finish a year that means that the worst is behind us.
I know that is silly, really I do; because the bottom could fall out at any moment.
I am ready for life to find me again...and yet I know that right now currently I am living, so I guess life is here. But, moments come when I want it all back...those pre-leukemia days. I know that's not to be, but today...today is one of those days when I would like that life back.
Feeling a bit like I'm just in a holding pattern of life...that "when this happens or this happens" then I will be living again...
Guess that's why the Lord and I are walking this together...I would love to know how to marry the two. How to live right now in this circumstance...and believe and hope that one day it will all be restored, renewed and redeemed.
Today is just a day when I am hopeful that my Lord meets me to remind me that all is not lost...
Wednesday, March 31, 2010
Tuesday, March 30, 2010
clinic...
Tuesdays equal clinic...
Today was no different. Camryn went and again it was a super quick trip, so happy about that! Most everything was the same as last week; Camryn's rash is starting to fade which is a good sign. Her labs came back great...are you sitting down??? Camryn's ANC is at 3000?! We hardly can believe it!
Overall, Camryn is doing "great" to quote Dr.A.
We'll take that forever we'll take that!
Today was no different. Camryn went and again it was a super quick trip, so happy about that! Most everything was the same as last week; Camryn's rash is starting to fade which is a good sign. Her labs came back great...are you sitting down??? Camryn's ANC is at 3000?! We hardly can believe it!
Overall, Camryn is doing "great" to quote Dr.A.
We'll take that forever we'll take that!
Monday, March 29, 2010
mini-vacation, get-away...for good
In honor of our 8th anniversary and my 35th birthday, Jason surprised me a few months ago with a trip to San Francisco booked for this past weekend...it was awesome! I will admit that I love the city by the bay, in fact I love all cities by bays...I love the water, sea sounds and just the atmosphere. It's refreshing to me...
We left on Friday right after work and got up to San Francisco in time to take a walk around Union Square and take in a bit of the city. On Saturday we had decided to spend the day walking and enjoying Union Square and the sights in and around there...what fun we had. Lots of shopping, lots of walking, lots of people watching and lots of time spent together; it was amazing. Jason and I have walked an incredible journey the past four years and it is amazing to just be and be away from all of it for awhile and literally catch our breath.
Saturday night Jason surprised me with tickets to Wicked...we have seen it once before in LA, but I was thrilled to see it again. Oh my goodness it was fantastic and just wonderful. I find it so odd sometimes that my PE teacher hubby enjoys musicals...well, Wicked...he enjoys Wicked. The show was breath-taking and just as grand as the first time...in fact I enjoyed it the second time because I already knew the story so this time I could just enjoy all of it!
On Sunday we headed down to Fisherman's Wharf and the water...I loved it. We walked around, ate amazingly great food, saw lots of sights and again enjoyed time just us. As the day was winding down both of us were getting anxious to head home...honestly, we missed our two little bests just so much. We finally headed home after an hour delay while sitting on the plane on the runaway...yep, it was stellar. Have I told you I hate to fly and am a tad claustrophobic? Yes, I was about at my wits end, literally. We finally landed and we couldn't get home fast enough...but, the Flyaway was being slow and it was packed with the whole men's volleyball team from CSUN. Those of you that know me well know that I love me some men's volleyball, but maybe not the coach and one player talking so incredibly loudly on the bus all the way home. Yeah, I wanted to add my two cents of volleyball wisdom, but opted not too. :)
We finally made it home to two sleepy heads who tried so hard to stay awake to see us...guess they missed us too! Many thanks to my parents who watched the kids...and more so for navigating Camryn's medicines and doing it wonderfully! Thanks Mom and Dad!
Jason and I needed a break...really we needed some time that did not revolve around medicines, shots, line changes. The air was lighter and honestly I felt as though we would be okay. This journey is long, so very long and at times I feel as though it will swallow us alive and after some time away I don't feel the same. I know that there will always be ups and downs, but I believe that sometimes perspective is everything.
As I was sitting in Union Square watching countless people walk by I wondered what their story was...would they ever guess what mine is? I hardly know...but, one thing I do we have been changed. The things we appreciate are greater, we value things differently...yes, a few moments away was nice, but not just for a "break". But for a chance to reflect and remember on all that the Lord has brought us through...and say "thank you".
My favorite song from Wicked...a deep seeded meaning as I reflected on our journey, yes even in the midst of an amazing show...
We left on Friday right after work and got up to San Francisco in time to take a walk around Union Square and take in a bit of the city. On Saturday we had decided to spend the day walking and enjoying Union Square and the sights in and around there...what fun we had. Lots of shopping, lots of walking, lots of people watching and lots of time spent together; it was amazing. Jason and I have walked an incredible journey the past four years and it is amazing to just be and be away from all of it for awhile and literally catch our breath.
Saturday night Jason surprised me with tickets to Wicked...we have seen it once before in LA, but I was thrilled to see it again. Oh my goodness it was fantastic and just wonderful. I find it so odd sometimes that my PE teacher hubby enjoys musicals...well, Wicked...he enjoys Wicked. The show was breath-taking and just as grand as the first time...in fact I enjoyed it the second time because I already knew the story so this time I could just enjoy all of it!
On Sunday we headed down to Fisherman's Wharf and the water...I loved it. We walked around, ate amazingly great food, saw lots of sights and again enjoyed time just us. As the day was winding down both of us were getting anxious to head home...honestly, we missed our two little bests just so much. We finally headed home after an hour delay while sitting on the plane on the runaway...yep, it was stellar. Have I told you I hate to fly and am a tad claustrophobic? Yes, I was about at my wits end, literally. We finally landed and we couldn't get home fast enough...but, the Flyaway was being slow and it was packed with the whole men's volleyball team from CSUN. Those of you that know me well know that I love me some men's volleyball, but maybe not the coach and one player talking so incredibly loudly on the bus all the way home. Yeah, I wanted to add my two cents of volleyball wisdom, but opted not too. :)
We finally made it home to two sleepy heads who tried so hard to stay awake to see us...guess they missed us too! Many thanks to my parents who watched the kids...and more so for navigating Camryn's medicines and doing it wonderfully! Thanks Mom and Dad!
Jason and I needed a break...really we needed some time that did not revolve around medicines, shots, line changes. The air was lighter and honestly I felt as though we would be okay. This journey is long, so very long and at times I feel as though it will swallow us alive and after some time away I don't feel the same. I know that there will always be ups and downs, but I believe that sometimes perspective is everything.
As I was sitting in Union Square watching countless people walk by I wondered what their story was...would they ever guess what mine is? I hardly know...but, one thing I do we have been changed. The things we appreciate are greater, we value things differently...yes, a few moments away was nice, but not just for a "break". But for a chance to reflect and remember on all that the Lord has brought us through...and say "thank you".
My favorite song from Wicked...a deep seeded meaning as I reflected on our journey, yes even in the midst of an amazing show...
For Good
I'm limited
Just look at me - I'm limited
And just look at you
You can do all I couldn't do, Glinda
So now it's up to you
For both of us - now it's up to you...
I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you
Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better?
But because I knew you
I have been changed for good
It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend...
Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I've been changed for the better?
But because I knew you
Because I knew you
I have been changed for good
And just to clear the air
I ask forgiveness
For the thing I've done you blame me for
But then, I guess we know
There's blame to share
And none of it seems to matter anymore
Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a bird in the wood
Who can say if I've been
Changed for the better?
I do believe I have been
Changed for the better
And because I knew you...
Because I knew you...
Because I knew you...
I have been changed for good.
~ Wicked
Wednesday, March 24, 2010
gvh, medicines and mouthwash...
Camryn headed to clinic yesterday for quite possibly the shortest clinic visit ever...she and her Daddy were on their way home by 9:00! We were very happy for the quick visit, especially since we were just there on Friday and that visit was long. Guess we never quite truly enjoy our once a month status, because in the world of childhood cancer most everything little thing means something one way or another...
The gvh rash is still there and again it was confirmed that it is in fact gvh as opposed to some other random issue. Camryn also has gvh in her mouth and eyes...who knew gvh could creep up in your eyes?? I obviously missed that. Dr.A was pleased that Camryn is showing signs of gvh as it signals that things are still fighting and working in her system. I will admit that this is a hard balance for me...knowing in the long run it is a good thing, but hating so much the realities of it now. Camryn's prograf level was taken and it was determined that she needed to be dropped down, so now it's back to one pill in the morning and at night; which lately Camryn is doing very well. Oh she hates it, but she has become a pro at swallowing her pill...we are so very proud of her! But, now added to the routines is a mouthwash to help ward off any fungal infections in Camryn's mouth...always something.
Camryn's lab results came back and she is doing great in all other areas...so a little gvh and that's it, really. Her white count is up from Friday which is very welcomed...her ANC on Friday was 600 and those of you who are familiar with cancer numbers that puts her at a 100 points away from being neutropenic which is not a great thing. Anyways, her level yesterday was up to 1200...yay! Only a 100 points lower than the bottom end of normal...so that was a HUGE encouragement to us.
I won't lie...we have been a bit discouraged around here. This journey feels like one step forward and then two back and so on...you never quite feel that you have arrive to the place of freedom. Our morning and nightly routines are just full of "cancer, leukemia" junk...and you know I know that really it is all for Camryn's betterment, I do. We are just tired and none more so than Camryn...she's so over all of this. The first time around we didn't have this constant roller coaster of medications, doctors visits, lab draws and such...by this time during the first time around Camryn's line had been out almost two months. So it is hard...
Although I know from the very moment of Camryn's relapse and the very first moment of talking with Dr.M that this journey would be entirely different. A child does not relapse on their own...therefore, this time things have to be different. If they were not then that would be cause for alarm...this time, well I think this time is more normal. I feel like we are in such a catch 22 emotionally...we have Camryn's first transplant etched in our minds and hearts and we know where that led to a relapse. And now we have this time...and we do not know what's next. We are hoping and believing that Camryn is well on her way to recovery...oh we hold to that truth mightily! But, there are moments of heaviness, weariness for the burden seems all too heavy, especially a second time around...
The gvh rash is still there and again it was confirmed that it is in fact gvh as opposed to some other random issue. Camryn also has gvh in her mouth and eyes...who knew gvh could creep up in your eyes?? I obviously missed that. Dr.A was pleased that Camryn is showing signs of gvh as it signals that things are still fighting and working in her system. I will admit that this is a hard balance for me...knowing in the long run it is a good thing, but hating so much the realities of it now. Camryn's prograf level was taken and it was determined that she needed to be dropped down, so now it's back to one pill in the morning and at night; which lately Camryn is doing very well. Oh she hates it, but she has become a pro at swallowing her pill...we are so very proud of her! But, now added to the routines is a mouthwash to help ward off any fungal infections in Camryn's mouth...always something.
Camryn's lab results came back and she is doing great in all other areas...so a little gvh and that's it, really. Her white count is up from Friday which is very welcomed...her ANC on Friday was 600 and those of you who are familiar with cancer numbers that puts her at a 100 points away from being neutropenic which is not a great thing. Anyways, her level yesterday was up to 1200...yay! Only a 100 points lower than the bottom end of normal...so that was a HUGE encouragement to us.
I won't lie...we have been a bit discouraged around here. This journey feels like one step forward and then two back and so on...you never quite feel that you have arrive to the place of freedom. Our morning and nightly routines are just full of "cancer, leukemia" junk...and you know I know that really it is all for Camryn's betterment, I do. We are just tired and none more so than Camryn...she's so over all of this. The first time around we didn't have this constant roller coaster of medications, doctors visits, lab draws and such...by this time during the first time around Camryn's line had been out almost two months. So it is hard...
Although I know from the very moment of Camryn's relapse and the very first moment of talking with Dr.M that this journey would be entirely different. A child does not relapse on their own...therefore, this time things have to be different. If they were not then that would be cause for alarm...this time, well I think this time is more normal. I feel like we are in such a catch 22 emotionally...we have Camryn's first transplant etched in our minds and hearts and we know where that led to a relapse. And now we have this time...and we do not know what's next. We are hoping and believing that Camryn is well on her way to recovery...oh we hold to that truth mightily! But, there are moments of heaviness, weariness for the burden seems all too heavy, especially a second time around...
"The most difficult ingredient of suffering is often time. A short, sharp pain is easily endured, but when a sorrow drags on its long and weary way year after monotonous year, returning day after day with the same dull routine of hopeless agony, the heart loses its strength. Without the grace of God, the heart is sure to sink into dismal despair." ~ L.B. Cowman
Monday, March 22, 2010
day +290...birthday
Ten days away from Day +300, Camryn's last benchmark before a year post-transplant...and all I can say is WOW!
Camryn continues to battle her GVH rash and will be heading to clinic tomorrow to again have the rash checked out. Her doctors will also be looking at her levels of prograf (her new medicine) in her system...fingers crossed that hopefully soon the rash will subside and we can move past it. In my opinion the hardest part of the rash outside of the itchiness is that Camryn's skin becomes so incredibly sensitive that her dressing for her central line just "eats" her skin alive.
Prayers for Camryn would be much appreciated...she broke down in tears tonight because she's the only one with the rash and she is just so tired of all of this.
On a positive note taking the pills has gone much better! Yay!
Today is also my thirty-fifth birthday...thankful to be able to spend the day with my kids and Jason. Really thankful for another birthday spent with my bests, those are moments not taken for granted. Hopeful for a hope filled year ahead...hopeful for a healthy year ahead...
Cannot believe how quickly time seems to past...and yet wishing that maybe it could move a bit faster. Guess that's the great irony of life?
Praying the He continues to hold us through these days ahead...as we journey to 300 and then a year...and as we grow old. :)
Camryn continues to battle her GVH rash and will be heading to clinic tomorrow to again have the rash checked out. Her doctors will also be looking at her levels of prograf (her new medicine) in her system...fingers crossed that hopefully soon the rash will subside and we can move past it. In my opinion the hardest part of the rash outside of the itchiness is that Camryn's skin becomes so incredibly sensitive that her dressing for her central line just "eats" her skin alive.
Prayers for Camryn would be much appreciated...she broke down in tears tonight because she's the only one with the rash and she is just so tired of all of this.
On a positive note taking the pills has gone much better! Yay!
Today is also my thirty-fifth birthday...thankful to be able to spend the day with my kids and Jason. Really thankful for another birthday spent with my bests, those are moments not taken for granted. Hopeful for a hope filled year ahead...hopeful for a healthy year ahead...
Cannot believe how quickly time seems to past...and yet wishing that maybe it could move a bit faster. Guess that's the great irony of life?
Praying the He continues to hold us through these days ahead...as we journey to 300 and then a year...and as we grow old. :)
Sunday, March 21, 2010
the weekend...
On Thursday morning Camryn was having some serious itchy moments and it was becoming obvious that something was up. We called and Camryn's doctors wanted to see Camryn on Friday just to check out the itchiness and if it is a flare up of GVH. So on Friday morning Camryn and I headed down to clinic and if I am honest it was about the most crowded I have seen it in a long time. Lots of children seeing doctors, in the procedure cent38er and receiving chemo infusions. We had arrived later than usual as I took the day off so we didn't need to rush down in order for me to make it to work, but by being later we had quite a wait. Guess we learned our lesson.
Camryn saw Dr.F (who has worked with the peds kids at UCLA for 38 years) so it goes without saying that Dr.F has seen it all. Knowing how crowded clinic was and knowing that Camryn's issues were not seriously pressing as they could have been, it was a welcomed visit from Dr.F. Dr.F took one look at Camryn's newly developing red rash and confirmed that it was in fact GVH as well as some GVH in her mouth and eyes. When Camryn was taken off of cyclosporin we knew that this flare up of GVH was likely...we were hoping it would not come as in some ways it sets Camryn back a bit, but it is here. Thankfully Dr.F was not too alarmed by Camryn's rash and did not make any changes to her meds at this point. We will continue to treat the symptoms of the rash, itchiness as best we can and hope that the new medicine Camryn started last Tuesday will kick in soon.
The new medicine is a pill...we've had a few hard nights here trying to "teach" Camryn how to take a pill. All of Camryn's meds at this point have been in liquid, well minus her ATRA pill she took back when she was 21 months old and we coaxed her with applesauce. Now the magic coaxing...jello. Unfortunately Camryn has to take 2 pills in the morning and night so that's a lot for a newbie at taking pills. Thankfully she is doing MUCH better and the fight has lessened quite a bit as we knew it would. Camryn hates all that she has to do, literally she hates it; but she does it. She continues to fight and complain, but I really cannot blame her...really, I am grateful she has done as well as she has.
So Camryn heads to clinic on Tuesday to get checked out again and get a level on her new med and hopefully we will start seeing the GVH lessen and some relief come to a very itchy girl...
Friday night Jason threw me a 35th birthday party with my family and close friends...I will admit turning 35 is quite shocking to me, not that I can avoid it. The party was absolutely wonderful...I had such fun chatting with my friends and hanging out with my family. It was nice to feel connected to the world again and just feel apart of something. As I've said before loneliness is a rough one for me...we have had to isolate so much that Friday night felt so great. Many thanks to my hubby for the wonderful evening...what fun we had!
Saturday I headed to the mall for some birthday shopping fun with my mom...it was wonderful! I really enjoy spending time with my mom, she's wonderful. We enjoyed being together and it felt like days when my mom would come out to visit me at APU when I was in college and take me shopping for my birthday, it was fun.
That evening Jason and I headed to a wedding of one of our youth group kids who was also one of my students. D&N's wedding was beautiful and just wonderful to see two people who did it right...it was a blessing to share in their day and know that the Lord does have a plan for our lives. Many blessings to D&N as they begin their married life together. While we were at the wedding Camryn and Wyatt got to spend time with Uncle Robby and Auntie Dede and their cousins Riley and Peighton. What fun they had...Camryn and Wyatt adore the Mikels family and they LOVE spending time with them. Many thanks to Rob and Devon for watching Camryn and Wyatt and for loving them so.
Today has been a catch up day of sorts...just getting the house cleaned up and picked up. We put out our Easter decorations and enjoyed the day. Camryn and Wyatt enjoyed just being home and hanging out together...they are quite a pair. It was a nice time to be home and enjoy the blessings of the day...
We are getting ready for Camryn's room make-over and her birthday party...and we are excited for our spring breaks coming up. Have I told you I love this time of year?!
Enjoying the change of seasons...praying the GVH stays under control and we can enter into spring, with hope!
Camryn saw Dr.F (who has worked with the peds kids at UCLA for 38 years) so it goes without saying that Dr.F has seen it all. Knowing how crowded clinic was and knowing that Camryn's issues were not seriously pressing as they could have been, it was a welcomed visit from Dr.F. Dr.F took one look at Camryn's newly developing red rash and confirmed that it was in fact GVH as well as some GVH in her mouth and eyes. When Camryn was taken off of cyclosporin we knew that this flare up of GVH was likely...we were hoping it would not come as in some ways it sets Camryn back a bit, but it is here. Thankfully Dr.F was not too alarmed by Camryn's rash and did not make any changes to her meds at this point. We will continue to treat the symptoms of the rash, itchiness as best we can and hope that the new medicine Camryn started last Tuesday will kick in soon.
The new medicine is a pill...we've had a few hard nights here trying to "teach" Camryn how to take a pill. All of Camryn's meds at this point have been in liquid, well minus her ATRA pill she took back when she was 21 months old and we coaxed her with applesauce. Now the magic coaxing...jello. Unfortunately Camryn has to take 2 pills in the morning and night so that's a lot for a newbie at taking pills. Thankfully she is doing MUCH better and the fight has lessened quite a bit as we knew it would. Camryn hates all that she has to do, literally she hates it; but she does it. She continues to fight and complain, but I really cannot blame her...really, I am grateful she has done as well as she has.
So Camryn heads to clinic on Tuesday to get checked out again and get a level on her new med and hopefully we will start seeing the GVH lessen and some relief come to a very itchy girl...
Friday night Jason threw me a 35th birthday party with my family and close friends...I will admit turning 35 is quite shocking to me, not that I can avoid it. The party was absolutely wonderful...I had such fun chatting with my friends and hanging out with my family. It was nice to feel connected to the world again and just feel apart of something. As I've said before loneliness is a rough one for me...we have had to isolate so much that Friday night felt so great. Many thanks to my hubby for the wonderful evening...what fun we had!
Saturday I headed to the mall for some birthday shopping fun with my mom...it was wonderful! I really enjoy spending time with my mom, she's wonderful. We enjoyed being together and it felt like days when my mom would come out to visit me at APU when I was in college and take me shopping for my birthday, it was fun.
That evening Jason and I headed to a wedding of one of our youth group kids who was also one of my students. D&N's wedding was beautiful and just wonderful to see two people who did it right...it was a blessing to share in their day and know that the Lord does have a plan for our lives. Many blessings to D&N as they begin their married life together. While we were at the wedding Camryn and Wyatt got to spend time with Uncle Robby and Auntie Dede and their cousins Riley and Peighton. What fun they had...Camryn and Wyatt adore the Mikels family and they LOVE spending time with them. Many thanks to Rob and Devon for watching Camryn and Wyatt and for loving them so.
Today has been a catch up day of sorts...just getting the house cleaned up and picked up. We put out our Easter decorations and enjoyed the day. Camryn and Wyatt enjoyed just being home and hanging out together...they are quite a pair. It was a nice time to be home and enjoy the blessings of the day...
We are getting ready for Camryn's room make-over and her birthday party...and we are excited for our spring breaks coming up. Have I told you I love this time of year?!
Enjoying the change of seasons...praying the GVH stays under control and we can enter into spring, with hope!
Tuesday, March 16, 2010
pricelessly sentimental...
Look what picked up yesterday...
Isn't it beautiful? Tears filled my eyes when I first saw that precious little handprint, and they still do. Oh that priceless little hand...what a story is written all over it, what a tapestry that has been weaved throughout this little hand's days of life. I am sentimental...I am now trying to find just the right place to hang this precious, priceless, irreplaceable momento of Camryn's kindergarten year.
I also came home to find these beautiful flowers on our dining table yesterday for my anniversary...
Beautiful. I love them, I love looking at them as I type this and realizing that they celebrate eight years of marriage. I love visual reminders...I'm a sucker for all things sentimental.
I have mentioned it before, but I love this season. I love Easter! Every year I find myself just more and more enjoying the enormity of the season and the great reason for it. Like I said I love to be sentimental, I love looking back, I love history, I love old things...I really do like the past. For it is from the past that I gain strength to live today.
I do not have any more grandparents living on earth, oh they are living it up in heaven; but they are not here. I have momentoes of them in my kitchen...I have reminders of them in on my dresser...I have their fingerprints on my hands...as their hand prints are all over my life and I am grateful. I often think of the glories of heaven and the beauty they are experiencing; and find myself thankful that the Lord provided the way. The way for us to look back, but more importantly a way for us to look ahead with hope.
Hope...
Isn't it beautiful? Tears filled my eyes when I first saw that precious little handprint, and they still do. Oh that priceless little hand...what a story is written all over it, what a tapestry that has been weaved throughout this little hand's days of life. I am sentimental...I am now trying to find just the right place to hang this precious, priceless, irreplaceable momento of Camryn's kindergarten year.
I also came home to find these beautiful flowers on our dining table yesterday for my anniversary...
Beautiful. I love them, I love looking at them as I type this and realizing that they celebrate eight years of marriage. I love visual reminders...I'm a sucker for all things sentimental.
I have mentioned it before, but I love this season. I love Easter! Every year I find myself just more and more enjoying the enormity of the season and the great reason for it. Like I said I love to be sentimental, I love looking back, I love history, I love old things...I really do like the past. For it is from the past that I gain strength to live today.
I do not have any more grandparents living on earth, oh they are living it up in heaven; but they are not here. I have momentoes of them in my kitchen...I have reminders of them in on my dresser...I have their fingerprints on my hands...as their hand prints are all over my life and I am grateful. I often think of the glories of heaven and the beauty they are experiencing; and find myself thankful that the Lord provided the way. The way for us to look back, but more importantly a way for us to look ahead with hope.
Hope...
Monday, March 15, 2010
eight years...
Time flies when you're having fun and really it flies whether you're not. Literally, i cannot believe Jason and I have been married eight years...
8 years.
So many things have transpired, so many ups and so many downs, so many blessings and so many heartaches; and yet through it all we remain us. A better us, a strong us, a simpler us, a real us...
I know eight years isn't huge when I compare that with my parent's almost 53 years...but, it'll do. Because these past eight years have been ours, for better for worse...through it all.
Hopeful for another great year...no matter what it brings, because I know Jason will be by my side and I will be by his.
Love you Jay!
8 years.
So many things have transpired, so many ups and so many downs, so many blessings and so many heartaches; and yet through it all we remain us. A better us, a strong us, a simpler us, a real us...
I know eight years isn't huge when I compare that with my parent's almost 53 years...but, it'll do. Because these past eight years have been ours, for better for worse...through it all.
Hopeful for another great year...no matter what it brings, because I know Jason will be by my side and I will be by his.
Love you Jay!
Wednesday, March 10, 2010
update & pictures...
Yesterday Camryn headed down to clinic and saw her usual group of friends. Camryn was super excited to show off her missing front tooth and made sure she showed everyone. She was also very pleased that she is now 44 inches tall which is something she has been aiming towards for quite awhile. And as of now Camryn has lost 16 pounds from her highest steroid weight...sometimes I cannot fathom where those 16 pounds were on her tiny frame. All in all it is so nice to see our girl back looking so much more herself.
Camryn got to see Dr.A and he said that she was looking great; in fact Jason said that many people offered a variety of adjectives: super, great, fantastic and fabulous just to name a few. What a blessing! Her doctors decided to run some extensive blood tests to see how Camryn's B cells and T cells (immune system) is coming along. Honestly these tests are normally run closer to a year post-transplant so we will be so excited if they come back great, if not it really is not a big deal. Although if they come back well that would mean some of Camryn's medicines would be discontinued and well that is always something we look forward to. Far as Camryn's blood clot and lovenox shots she will have another echocardigram later in the spring and hopefully at that point the clot will be much smaller or completely gone altogther. No word on Camryn's central line, but after a year of having it I think Camryn's come to just consider it normal. All in all Cam's appointment went super well and she does not have to go back until April...incredibly thankful!
Camryn's regular blood draw numbers look good...in fact we have not seen her white count this high in well a very long time. And her ANC is at 1900...been quite awhile since it has been that high. Her hemoglobin and platelets are high and strong too. We NEVER tire of a good lab sheet, never. We are thankful that at about nine and a half months post-transplant Camryn is doing well, doing what the doctors want her to be doing and most importantly Camryn is continuing to get better and better.
So for now we will continue the course and enjoy the coming of a new season and the freshness it brings...
Nothing like a bed time reading of "Alice in Wonderland" by flashlight to make a kid smile...this pretty much sums Camryn and Wyatt up. They love to be together, they thoroughly enjoy each other's company. Oh sure they have their moments...but best friends they are to the fullest...
And without further ado...
Little Miss Camryn missing her front tooth. Yes, I got the camera out immediately to document this childhood moment...and I have to say I cherish this face. This face tells a story unlike any other...from this face I know and believe that the Lord is not finished yet...and I cannot get enough of this little precious face.
And then there is The Dynamic Duo...
There are not enough words to convey what these two mean to me...I find myself daily wondering what I did so right to get to be their mommy. Yes, of course the road has been really difficult; but I would not change who they are and who they are becoming. I am so thankful that the Lord saw it fit to give us Camryn and Wyatt...it is a priceless thing to live in the midst of a miracle. And it is an amazing thing to watch a relationship develop from before Wyatt was born when Camryn would sit and just hug my pregnant belly to now as a 5 year old and a 3 year old. Precious...
This past weekend we did a little gardening...planted some flowers and made a little place of "hope".
Camryn got to see Dr.A and he said that she was looking great; in fact Jason said that many people offered a variety of adjectives: super, great, fantastic and fabulous just to name a few. What a blessing! Her doctors decided to run some extensive blood tests to see how Camryn's B cells and T cells (immune system) is coming along. Honestly these tests are normally run closer to a year post-transplant so we will be so excited if they come back great, if not it really is not a big deal. Although if they come back well that would mean some of Camryn's medicines would be discontinued and well that is always something we look forward to. Far as Camryn's blood clot and lovenox shots she will have another echocardigram later in the spring and hopefully at that point the clot will be much smaller or completely gone altogther. No word on Camryn's central line, but after a year of having it I think Camryn's come to just consider it normal. All in all Cam's appointment went super well and she does not have to go back until April...incredibly thankful!
Camryn's regular blood draw numbers look good...in fact we have not seen her white count this high in well a very long time. And her ANC is at 1900...been quite awhile since it has been that high. Her hemoglobin and platelets are high and strong too. We NEVER tire of a good lab sheet, never. We are thankful that at about nine and a half months post-transplant Camryn is doing well, doing what the doctors want her to be doing and most importantly Camryn is continuing to get better and better.
So for now we will continue the course and enjoy the coming of a new season and the freshness it brings...
Nothing like a bed time reading of "Alice in Wonderland" by flashlight to make a kid smile...this pretty much sums Camryn and Wyatt up. They love to be together, they thoroughly enjoy each other's company. Oh sure they have their moments...but best friends they are to the fullest...
And without further ado...
Little Miss Camryn missing her front tooth. Yes, I got the camera out immediately to document this childhood moment...and I have to say I cherish this face. This face tells a story unlike any other...from this face I know and believe that the Lord is not finished yet...and I cannot get enough of this little precious face.
And then there is The Dynamic Duo...
There are not enough words to convey what these two mean to me...I find myself daily wondering what I did so right to get to be their mommy. Yes, of course the road has been really difficult; but I would not change who they are and who they are becoming. I am so thankful that the Lord saw it fit to give us Camryn and Wyatt...it is a priceless thing to live in the midst of a miracle. And it is an amazing thing to watch a relationship develop from before Wyatt was born when Camryn would sit and just hug my pregnant belly to now as a 5 year old and a 3 year old. Precious...
This past weekend we did a little gardening...planted some flowers and made a little place of "hope".
"Learn from yesterday, live for today, hope for tomorrow" ~ Albert Einstein
Monday, March 8, 2010
all i want for christmas...
You know that song "All I want for Christmas is my two teeth..."? Well, we are changing it up around here and it is now...
"All I want when I turn six is my first missing front tooth..."
I have pictures to post, but unfortunately blogger is not uploading them. So I guess you will have to take my word for it that Little Miss Camryn has the cutest toothless grin ever!
And Mr Wyatt was way into seeing her tooth once it was out...yep, a boy on every level.
So it is another moment of childhood that we have encountered and it is wonderful...simply, wonderful!
And really all I want for Christmas is many, many more wonderful childhood memories with our kids!
"All I want when I turn six is my first missing front tooth..."
I have pictures to post, but unfortunately blogger is not uploading them. So I guess you will have to take my word for it that Little Miss Camryn has the cutest toothless grin ever!
And Mr Wyatt was way into seeing her tooth once it was out...yep, a boy on every level.
So it is another moment of childhood that we have encountered and it is wonderful...simply, wonderful!
And really all I want for Christmas is many, many more wonderful childhood memories with our kids!
Sunday, March 7, 2010
overwhelmed...
Sometimes I feel like we are moving at a rapid pace and then sometimes it feels like time is passing as slow as it possibly can...it's a weird dynamic throughout this journey. While trying to capture as much normal as we can in the midst of completely non-normal circumstances we continue to take it day by day and moment by moment.
This morning was very hard, I won't lie. Jason headed to church and I am glad he did, one of us needs to stay connected there and he seems to be the one that handles being there better than I do now. As I stayed home with Camryn and Wyatt I just felt this nagging feeling that this is not the way it should be, we should be there together as a family. Instead we are trying to make the best of our situation and trying to be a part of the world we once were. The kids were playing and thoroughly enjoying the fun of the morning, I was fighting tears with every breath. Just felt so isolated and so lonely...I know it will not be this way forever. Really, I do. But, for right now Sunday mornings seem to remind me very vividly of all that is different, changed and lost for the moment because of leukemia.
I began to clean the kitchen and began a long conversation with the Lord, had my playlist of favorite worship songs going and found myself at His feet. There were tears, smiles and lots of moments when I felt held, covered by his love. These are the moments in this journey through leukemia, cancer, isolation that most people never see. The moments trying to reconcile the life that was with the life that is.
Sometimes I deal with it well and sometimes it is just hard.
After Jason got home we began to do some errands and the focus shifted. We are working on a little room make over for Camryn's birthday present. For her birthday she asked for some new bedding and we decided to do a few things. We are really excited about it! So that is the focus shift...a bit of newness in our world. There are many reminders in Camryn's room of the past four years, which is a great thing; but in some ways we are excited to begin a new chapter. Camryn is going to be six years old and in so many ways this is the first birthday that I did not plan. Every birthday until five was a right of passage if you will...but now it is like a whole new moment. I honestly never really let myself dream bigger than five and now she is almost six...
And I am a bit overwhelmed by it all...
There are moments throughout the journey when the path is crystal clear and moments when the path is very unclear, but throughout the Lord has held us. He knows the moments of this morning and He is here now.
I am thankful, incredibly thankful for where we are...I guess it is just the memories of where we were that trip me up. I wish for it to be simple, but sometimes it's not. I am learning to live again in these moments...learning to battle feeling overwhelmed.
Trusting that the Lord will be here in the midst as He has time and time again...
This morning was very hard, I won't lie. Jason headed to church and I am glad he did, one of us needs to stay connected there and he seems to be the one that handles being there better than I do now. As I stayed home with Camryn and Wyatt I just felt this nagging feeling that this is not the way it should be, we should be there together as a family. Instead we are trying to make the best of our situation and trying to be a part of the world we once were. The kids were playing and thoroughly enjoying the fun of the morning, I was fighting tears with every breath. Just felt so isolated and so lonely...I know it will not be this way forever. Really, I do. But, for right now Sunday mornings seem to remind me very vividly of all that is different, changed and lost for the moment because of leukemia.
I began to clean the kitchen and began a long conversation with the Lord, had my playlist of favorite worship songs going and found myself at His feet. There were tears, smiles and lots of moments when I felt held, covered by his love. These are the moments in this journey through leukemia, cancer, isolation that most people never see. The moments trying to reconcile the life that was with the life that is.
Sometimes I deal with it well and sometimes it is just hard.
After Jason got home we began to do some errands and the focus shifted. We are working on a little room make over for Camryn's birthday present. For her birthday she asked for some new bedding and we decided to do a few things. We are really excited about it! So that is the focus shift...a bit of newness in our world. There are many reminders in Camryn's room of the past four years, which is a great thing; but in some ways we are excited to begin a new chapter. Camryn is going to be six years old and in so many ways this is the first birthday that I did not plan. Every birthday until five was a right of passage if you will...but now it is like a whole new moment. I honestly never really let myself dream bigger than five and now she is almost six...
And I am a bit overwhelmed by it all...
There are moments throughout the journey when the path is crystal clear and moments when the path is very unclear, but throughout the Lord has held us. He knows the moments of this morning and He is here now.
I am thankful, incredibly thankful for where we are...I guess it is just the memories of where we were that trip me up. I wish for it to be simple, but sometimes it's not. I am learning to live again in these moments...learning to battle feeling overwhelmed.
Trusting that the Lord will be here in the midst as He has time and time again...
Friday, March 5, 2010
two little lives...
Two years ago today two little lives became part of ours and our world is forever changed...
Happy Birthday Blake Lucas and Ethan Derek.
We are so incredibly thankful to have you as our nephews and cousins. You have touched our lives in ways that words cannot express, you have taught us much. I am forever thankful for the time you graced this earth and the moments that you forever touch. I am pretty sure that your little fingerprints are all over our family, your family and the the families of all your other aunties and uncles...simply sweet boys you continue to do much.
Thank you for allowing us to love you...wish you were here so that we could love on you and hug on you, but we anticipate the day when we can and we will not have to let go. Oh for that day...
We love your family...thankful to walk this journey with them, loving your sweet daddy and mommy and your precious sisters.
Happy Birthday in heaven sweet boys...bet it is the best celebration ever! Wish we were there...
Until then....
We love you six Mikels...believing, waiting and hoping with you.
Happy Birthday Blake Lucas and Ethan Derek.
We are so incredibly thankful to have you as our nephews and cousins. You have touched our lives in ways that words cannot express, you have taught us much. I am forever thankful for the time you graced this earth and the moments that you forever touch. I am pretty sure that your little fingerprints are all over our family, your family and the the families of all your other aunties and uncles...simply sweet boys you continue to do much.
Thank you for allowing us to love you...wish you were here so that we could love on you and hug on you, but we anticipate the day when we can and we will not have to let go. Oh for that day...
We love your family...thankful to walk this journey with them, loving your sweet daddy and mommy and your precious sisters.
Happy Birthday in heaven sweet boys...bet it is the best celebration ever! Wish we were there...
Until then....
We love you six Mikels...believing, waiting and hoping with you.
Thursday, March 4, 2010
nine months...
Nine months have passed since Wyatt gave Camryn his "juice". To say that we are thankful for today would be an understatment...we are beyond thankful. Camryn continues to do well, so far this week off of cyclosporin is going well. This evening she enjoyed the longer daylight and played and played with Wyatt outside. Our hearts just savor the moments of fun and the smiles...oh the smiles!
These past nine months have not been completely easy, but we are still standing, still growing and still here. Learning that the best is truly yet to be...maybe not here, maybe not now, but someday...
Trying to grasp that this is journey is not in vain...that through the Lord's love and grace He will redeem this all. The journey is His, these past 9 months of taking each day as it comes and believing that no matter what comes tomorrow He is unchanging.
We give the glory of these past 9 months to our Savior and we thank Him greatly for the two little miracles living in our midst. We are humbled by the journey...we thank our Lord for reminding us that He will have the final word. He will take these days and make them new...
Thanks Lord...for these 9 months.
These past nine months have not been completely easy, but we are still standing, still growing and still here. Learning that the best is truly yet to be...maybe not here, maybe not now, but someday...
Trying to grasp that this is journey is not in vain...that through the Lord's love and grace He will redeem this all. The journey is His, these past 9 months of taking each day as it comes and believing that no matter what comes tomorrow He is unchanging.
We give the glory of these past 9 months to our Savior and we thank Him greatly for the two little miracles living in our midst. We are humbled by the journey...we thank our Lord for reminding us that He will have the final word. He will take these days and make them new...
Thanks Lord...for these 9 months.
Wednesday, March 3, 2010
healing handprints...
There is a tradition that I absolutely love and it's been around oh I don't know how long. The tradition...handprints.
Around Christmas every year the kindergarten students make their handprints for their parents as a gift. Hanging in my mom's house are the handprints my sister and I made oh in 1963 and 1980...and I love them. I am a sentimentalist and I love those precious bits of memory of my kids so I have looked forward to these priceless handprints.
Since Camryn is not "officially" a student at VCS there was no handprint this year. I was sad, because in some way it represented another missing moment. Missing moments are quite honestly one of the hardest parts of Camryn's journey. The list of things that she is missing out on just is frustrating and honestly it brings tears to Camryn. We know it's not forever but try telling that to an almost six-year-old? The past four years have been forever...
As I was telling Jason about the missing handprint he said I should contact Mrs.L at the Big Village and see if I could make one of my own. Sometimes my husband really is brillant; because he sees the simplicity! :) I did...and Mrs.L is her true fashion offered to make a date with Camryn to make her handprint. Today was the day...
Here is the cutest girl in the world...yep, doesn't she look great! All dolled up to go see Mrs.L and whatever else she might find at the Big Village. As we were walking to Mrs.L's room guess who we ran into...Cousin James! Oh my goodness if you could have seen the smile on Camryn's face, it was priceless! We headed into see Mrs.L to make the handprint. Camryn had an amazing time...checking out the many things, ant hills, books, crafts, books and just chatting away with Mrs.L.
All the while this little guy was checking things out too...he was especially fond of the fact that the sinks, soap and paper towels were on his level! It was hilarious! He had a great time seeing Mrs.L and Cousin James too. As we finished up with Mrs.L we headed out for an adventure around the campus. Quite honestly Camryn was fighting tears...she just was missing SO much. She was going over and over all the friends she was missing and all the things she wished for. So to get her mind on something else we had an adventure. We ended up by the gym and the kids ran around and played for awhile, it was great.
Although this little face wasn't too happy with life as he wanted a Gatorade and he wanted it now! Yes, I love my strong-willed, stubborn son...even in moments when this little face comes.
While the kids were running around I was chatting with some former students and friends, it was great to see them. As the students caught me up on their lives and the various colleges and such they were planning on going to I just smiled. These were students I had when Camryn got sick the first time and it was so neat to see them now these four years later. As I stood talking to these kids a thought popped in my head...your world is not as small as it feels.
Because right now our world seems, feels and is really small...but in some unlike ways today brought some healing.
Healing...
While watching Camryn and Wyatt run and listening as my former students were amazed at their lives I remembered that much has been gained. We as a family have grown in ways that are unexplainable. We have watched our little girl fight, survive and believe and she still does every single day. It is not easy being a five-year-old with the affects of leukemia...there are things that Camryn has to do that are simply not fair. And in no way can I make it fair...
But we can believe that all of these things will be redeemed. Our world is small, but this world is not all there is...there is more to this life. The Lord was speaking to my heart through a group of students and I am thankful.
In about two weeks we will get a handprint one of significance, because in the day it was made a bit of healing came to our hearts...
Around Christmas every year the kindergarten students make their handprints for their parents as a gift. Hanging in my mom's house are the handprints my sister and I made oh in 1963 and 1980...and I love them. I am a sentimentalist and I love those precious bits of memory of my kids so I have looked forward to these priceless handprints.
Since Camryn is not "officially" a student at VCS there was no handprint this year. I was sad, because in some way it represented another missing moment. Missing moments are quite honestly one of the hardest parts of Camryn's journey. The list of things that she is missing out on just is frustrating and honestly it brings tears to Camryn. We know it's not forever but try telling that to an almost six-year-old? The past four years have been forever...
As I was telling Jason about the missing handprint he said I should contact Mrs.L at the Big Village and see if I could make one of my own. Sometimes my husband really is brillant; because he sees the simplicity! :) I did...and Mrs.L is her true fashion offered to make a date with Camryn to make her handprint. Today was the day...
Here is the cutest girl in the world...yep, doesn't she look great! All dolled up to go see Mrs.L and whatever else she might find at the Big Village. As we were walking to Mrs.L's room guess who we ran into...Cousin James! Oh my goodness if you could have seen the smile on Camryn's face, it was priceless! We headed into see Mrs.L to make the handprint. Camryn had an amazing time...checking out the many things, ant hills, books, crafts, books and just chatting away with Mrs.L.
All the while this little guy was checking things out too...he was especially fond of the fact that the sinks, soap and paper towels were on his level! It was hilarious! He had a great time seeing Mrs.L and Cousin James too. As we finished up with Mrs.L we headed out for an adventure around the campus. Quite honestly Camryn was fighting tears...she just was missing SO much. She was going over and over all the friends she was missing and all the things she wished for. So to get her mind on something else we had an adventure. We ended up by the gym and the kids ran around and played for awhile, it was great.
Although this little face wasn't too happy with life as he wanted a Gatorade and he wanted it now! Yes, I love my strong-willed, stubborn son...even in moments when this little face comes.
While the kids were running around I was chatting with some former students and friends, it was great to see them. As the students caught me up on their lives and the various colleges and such they were planning on going to I just smiled. These were students I had when Camryn got sick the first time and it was so neat to see them now these four years later. As I stood talking to these kids a thought popped in my head...your world is not as small as it feels.
Because right now our world seems, feels and is really small...but in some unlike ways today brought some healing.
Healing...
While watching Camryn and Wyatt run and listening as my former students were amazed at their lives I remembered that much has been gained. We as a family have grown in ways that are unexplainable. We have watched our little girl fight, survive and believe and she still does every single day. It is not easy being a five-year-old with the affects of leukemia...there are things that Camryn has to do that are simply not fair. And in no way can I make it fair...
But we can believe that all of these things will be redeemed. Our world is small, but this world is not all there is...there is more to this life. The Lord was speaking to my heart through a group of students and I am thankful.
In about two weeks we will get a handprint one of significance, because in the day it was made a bit of healing came to our hearts...
Monday, March 1, 2010
march...
Can I get a drumroll please?!
As of today the beginning of a fresh, new month Camryn is off of her cyclosporin! Yes, you read that right she is off of her anti-rejection meds!
We are so excited, but none more than Camryn. You see cyclosporin is one nasty medicine, it is made with castor oil...it's disguising! But, she took it this morning and will not be taking it anymore!
Of course with the coming off of the medicine there is always a chance that GVH (graft vs. host disease) will raise it's ugly head. Back in early September Camryn encountered GVH and did well, but then it meant steroids and well you know where that took us. So we are hopeful that by coming off her anti-rejection meds that her body does well...that the GVH stays at bay and that our little girl will continue to grow strong!
Happy news to start a new month...YAY!
As of today the beginning of a fresh, new month Camryn is off of her cyclosporin! Yes, you read that right she is off of her anti-rejection meds!
We are so excited, but none more than Camryn. You see cyclosporin is one nasty medicine, it is made with castor oil...it's disguising! But, she took it this morning and will not be taking it anymore!
Of course with the coming off of the medicine there is always a chance that GVH (graft vs. host disease) will raise it's ugly head. Back in early September Camryn encountered GVH and did well, but then it meant steroids and well you know where that took us. So we are hopeful that by coming off her anti-rejection meds that her body does well...that the GVH stays at bay and that our little girl will continue to grow strong!
Happy news to start a new month...YAY!
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