Hope you all had a very Happy Halloween...as Camryn said, "it was the best night ever..." and she was glad that it "made her smile!".
Sunday, November 1, 2009
happy halloween...
The excitement was building all day yesterday for the Halloween fun to begin...Camryn and Wyatt both were very excited to get going on our activites for the evening. We headed over to church to see Grandma for a bit and for the kids to show off their costumes. After church we headed to Tina's house for a small Halloween party, which was absolutely WONDERFUL! Camryn and Wyatt had a very fun filled evening...it was just perfect!
Hope you all had a very Happy Halloween...as Camryn said, "it was the best night ever..." and she was glad that it "made her smile!".
Hope you all had a very Happy Halloween...as Camryn said, "it was the best night ever..." and she was glad that it "made her smile!".
Thursday, October 29, 2009
really?...thankful
So today (Thursday) is one of those days that a parent of a child who has had cancer and a bone marrow transplant just wants to scream...
The day started out well...and then I got an email from a prayer chain group from a local church that my Aunt is a part of that a little three year old boy, who has been battling leukemia went home to Jesus this morning. My heart just aches, an ache unlike any other...news like this just stops me in my tracks, makes me just sad, frustrated and thankful all at once. I am thankful for the family who know the Lord and can rest in Him and He will hold them throughout the moments ahead. For the grace that He will lavish on them in the days, weeks, months ahead...
After I got off work I headed down to UCLA to pick up Camryn's cyclosporin. Grabbed some lunch on the go, then stopped by Jason's work to pick up Camryn's parking permit and off I went. Traffic wasn't too bad and I was hopeful that I would be home shortly...
Went to the pharmacy and was told that there was an insurance problem and that they would have to call and get it figured out. So between the pharmacy and Camryn's nurse practitioner they called and I waited...walked around outside the hospital, went by the gift shop, played with my cell phone...all the while a knot was in my stomach. I do so love the UCLA medical center, I love the precious doctors and nurses who have cared for my sweet girl and my sweet boy throughout this; but today I just was having a hard time being there. I guess it was a trigger of sorts and I was just hanging on by a thread. After awhile I headed back to the pharmacy and was told that my insurance wanted us to take the prescription to a *speciality* pharmacy and they would not cover it at the UCLA pharmacy. What?! I was beyond weary and just ready to cry...my daughter has to have this med. Thankfully we aren't completely out of it yet, but regardless I was just so tired. I took the presciption and said thank you to the very kind, sweet gentlemen who was helping me figure this out, he was as baffled by it as I was and still am.
By this time the afternoon was escaping quickly...I walked to my car and the tears were forming. My weary heart was just so tried...sometimes I just don't understand this journey. Sometimes I'm just ready to have a good cry and let it out...because this journey gets so very heavy on a person's heart.
As I drove home in tears...follow a path I drove over and over again for the months of arsenic treatment and then for the weeks Camryn was in the hospital the tears just flowed...
Camryn is doing really well...and we have some super wonderful days, but then there are days like today when the reality of cancer, leukemia and bone marrow transplant cannot be escaped.
It is now Friday...took a break from the post as I was just having a hard time finding the words...it seems that there are days when the realities are just so present and then days like today...
Today I have Camryn's meds in hand and all is well and figured out with that. So thankful for great doctors and nurses who make it possible to get a hold of them and figure this stuff out. I am forever blessed by them!
We've had a good day today...Camryn did not have school so she, Wyatt and my parents went on an adventure this morning that entailed feeding some local peacocks from the car. I promise that my kids are growing up with some of the greatest, grandest adventures thanks to my mom and dad...who daily watch them, I am forever grateful.
The anticipation of tomorrow night is upon our house...Camryn decided to be Alice in Wonderland and Wyatt decided to be Tyrone from The Backyardigans. So...the build up is great...they are super, super excited! As I've said before that Camryn has a way about her to live life to the fullest...she cherishes any social event she has and tomorrow night is one that has been circled on the calendar!
In other very exciting news...our niece Peighton Hope who many of you have been praying for is coming home from the NICU today! We are so thankful, excited, grateful, happy, oh the list could go on forever! What a gift she is...a long awaited gift!
Yesterday was hard...today was good. This is the ebb and flow of life, especially life as a parent and a child surviving cancer trusting the Lord to see us through the good, the bad, the ugly and everything in between.
And He does...
The day started out well...and then I got an email from a prayer chain group from a local church that my Aunt is a part of that a little three year old boy, who has been battling leukemia went home to Jesus this morning. My heart just aches, an ache unlike any other...news like this just stops me in my tracks, makes me just sad, frustrated and thankful all at once. I am thankful for the family who know the Lord and can rest in Him and He will hold them throughout the moments ahead. For the grace that He will lavish on them in the days, weeks, months ahead...
After I got off work I headed down to UCLA to pick up Camryn's cyclosporin. Grabbed some lunch on the go, then stopped by Jason's work to pick up Camryn's parking permit and off I went. Traffic wasn't too bad and I was hopeful that I would be home shortly...
Went to the pharmacy and was told that there was an insurance problem and that they would have to call and get it figured out. So between the pharmacy and Camryn's nurse practitioner they called and I waited...walked around outside the hospital, went by the gift shop, played with my cell phone...all the while a knot was in my stomach. I do so love the UCLA medical center, I love the precious doctors and nurses who have cared for my sweet girl and my sweet boy throughout this; but today I just was having a hard time being there. I guess it was a trigger of sorts and I was just hanging on by a thread. After awhile I headed back to the pharmacy and was told that my insurance wanted us to take the prescription to a *speciality* pharmacy and they would not cover it at the UCLA pharmacy. What?! I was beyond weary and just ready to cry...my daughter has to have this med. Thankfully we aren't completely out of it yet, but regardless I was just so tired. I took the presciption and said thank you to the very kind, sweet gentlemen who was helping me figure this out, he was as baffled by it as I was and still am.
By this time the afternoon was escaping quickly...I walked to my car and the tears were forming. My weary heart was just so tried...sometimes I just don't understand this journey. Sometimes I'm just ready to have a good cry and let it out...because this journey gets so very heavy on a person's heart.
As I drove home in tears...follow a path I drove over and over again for the months of arsenic treatment and then for the weeks Camryn was in the hospital the tears just flowed...
Camryn is doing really well...and we have some super wonderful days, but then there are days like today when the reality of cancer, leukemia and bone marrow transplant cannot be escaped.
It is now Friday...took a break from the post as I was just having a hard time finding the words...it seems that there are days when the realities are just so present and then days like today...
Today I have Camryn's meds in hand and all is well and figured out with that. So thankful for great doctors and nurses who make it possible to get a hold of them and figure this stuff out. I am forever blessed by them!
We've had a good day today...Camryn did not have school so she, Wyatt and my parents went on an adventure this morning that entailed feeding some local peacocks from the car. I promise that my kids are growing up with some of the greatest, grandest adventures thanks to my mom and dad...who daily watch them, I am forever grateful.
The anticipation of tomorrow night is upon our house...Camryn decided to be Alice in Wonderland and Wyatt decided to be Tyrone from The Backyardigans. So...the build up is great...they are super, super excited! As I've said before that Camryn has a way about her to live life to the fullest...she cherishes any social event she has and tomorrow night is one that has been circled on the calendar!
In other very exciting news...our niece Peighton Hope who many of you have been praying for is coming home from the NICU today! We are so thankful, excited, grateful, happy, oh the list could go on forever! What a gift she is...a long awaited gift!
Yesterday was hard...today was good. This is the ebb and flow of life, especially life as a parent and a child surviving cancer trusting the Lord to see us through the good, the bad, the ugly and everything in between.
And He does...
Wednesday, October 28, 2009
pumpkin carving...
Here's a few pics of our little pumpkins carving their little pumpkins...
Hope you all are enjoying the fun of fall!
Hope you all are enjoying the fun of fall!
Tuesday, October 27, 2009
day +145..."best possible place...
...to be." ~ Dr.M
If you have to be somewhere and really wherever you are isn't your choosing; then I guess it is good to be at the best place. As of right now Camryn really, truly is at the *best* possible place...
Camryn headed down to clinic today dressed in her fall attire, pumpkin shirt, complete with a candy corn hair clip...yep, she looked cute! Camryn and Jason got to clinic and from what I understand it was quite a chaotic day...lots of people there trying to get the H1N1 vaccine and many people were being turned away as the most critical were first in line.
Camryn saw Dr.M today and I am thankful...Dr.M just puts my heart at ease, he is truly one of the greatest blessings throughout this journey. Dr.M said that Camryn looked great, all was clear (ears, eyes, throat)...rash was not spreading and not getting worse, but still visible. Dr.M said that he wanted Camryn to get the H1N1 vaccine, prior her doctors had said there was not enough research to support the vaccine, especially for their hematology/oncology children; but now the research is in and it is highly recommended for a hem/oc child. He went on to say that he fully supports the research as well...as if Camryn's system were to encounter the H1N1 virus she would not have enough antibodies to fight it off. Therefore she got the vaccine and is doing fine so far. I will admit this cold/flu season has me worried, there just seems to be so much out there; but knowing Camryn is under the care of her doctors who fully understand and care about her immuno suppression makes me breath a bit easier.
Camryn's labs continue to look great...in fact they are fabulous! We never tire of nice high numbers, they are never a given, nor are they taken for granted. We love seeing Camryn's numbers on paper...just to smile and think she's doing well and for right now that is enough. Dr.M explained that Camryn's high labs coupled with the GVH she is experiencing is really putting her at the best possible place. In essence it is the GVH that will *cure* the leukemia...as Dr.M told Jason today. Inasmuch as the GVH drives me nuts, the steroids are making me crazy, the rash is not fun...we know that the GVH seems to hold the key. I really think if Camryn had high numbers without GVH her doctors would be getting worried...starting to wonder...relapse? The GVH is what kills any, all, and every leukemia cell or any other cell that does not belong in her body...so we'll take it. As we know this will not be forever...
Day +145...can you believe Camryn has been home for 120 days? Seems so unreal and yet so wonderful all rolled into one. We continually find ourselves in awe of the strength of our sweet girl, her determination, her understanding...and her spirit. Today when she left I had tears in my eyes watching Jason's truck pull out of the driveway...I wish this was not her reality, but it is and some days, okay a lot of days I hate it. But, Camryn continually goes about what she needs to, moment by moment and with a quiet strength that can only come from her Heavenly Father she pushes through. Jason said she was all talkative and chatty at clinic saying hi to everyone and just so much more herself. I'm beginning to think the steroids were pulling a number on her emotions too...so it's nice to have bits and pieces of her more consistently.
For everything that Camryn's been through and what it has meant for her and our family it's hard to really wrap our minds around it...we would love to see a new chapter beginning soon...we would love to have this chapter of leukemia, two transplants, weeks of hospital life, broken dreams, letting go, isolation behind us; but that is not to be...
Yet...for I believe and know that one day there will be a new chapter, even today is a new chapter. Maybe the Lord is really teaching me not to look at life as a series of chapters, events, seasons; but rather moments, days, minutes. I'm not sure we will ever have a non-cancer chapter in our families story, I don't think it possible for it to ever be gone...but I do know that there are days, moments, minutes when cancer does not define us and those days are becoming more in number.
Maybe we have a long way to go of doctors appointments, isolation, six medicines a day, shots, line changes, lab draws...but maybe the chapter never closes completely as we are changed...
Because the night comes every day and the dawn comes every day...so maybe our *chapter* is a new one daily. Because it is a new day....
Everything has changed and will change...we are not the same, nor will we ever be...
And maybe in the light of HIM that is the best possible place to be.
If you have to be somewhere and really wherever you are isn't your choosing; then I guess it is good to be at the best place. As of right now Camryn really, truly is at the *best* possible place...
Camryn headed down to clinic today dressed in her fall attire, pumpkin shirt, complete with a candy corn hair clip...yep, she looked cute! Camryn and Jason got to clinic and from what I understand it was quite a chaotic day...lots of people there trying to get the H1N1 vaccine and many people were being turned away as the most critical were first in line.
Camryn saw Dr.M today and I am thankful...Dr.M just puts my heart at ease, he is truly one of the greatest blessings throughout this journey. Dr.M said that Camryn looked great, all was clear (ears, eyes, throat)...rash was not spreading and not getting worse, but still visible. Dr.M said that he wanted Camryn to get the H1N1 vaccine, prior her doctors had said there was not enough research to support the vaccine, especially for their hematology/oncology children; but now the research is in and it is highly recommended for a hem/oc child. He went on to say that he fully supports the research as well...as if Camryn's system were to encounter the H1N1 virus she would not have enough antibodies to fight it off. Therefore she got the vaccine and is doing fine so far. I will admit this cold/flu season has me worried, there just seems to be so much out there; but knowing Camryn is under the care of her doctors who fully understand and care about her immuno suppression makes me breath a bit easier.
Camryn's labs continue to look great...in fact they are fabulous! We never tire of nice high numbers, they are never a given, nor are they taken for granted. We love seeing Camryn's numbers on paper...just to smile and think she's doing well and for right now that is enough. Dr.M explained that Camryn's high labs coupled with the GVH she is experiencing is really putting her at the best possible place. In essence it is the GVH that will *cure* the leukemia...as Dr.M told Jason today. Inasmuch as the GVH drives me nuts, the steroids are making me crazy, the rash is not fun...we know that the GVH seems to hold the key. I really think if Camryn had high numbers without GVH her doctors would be getting worried...starting to wonder...relapse? The GVH is what kills any, all, and every leukemia cell or any other cell that does not belong in her body...so we'll take it. As we know this will not be forever...
Day +145...can you believe Camryn has been home for 120 days? Seems so unreal and yet so wonderful all rolled into one. We continually find ourselves in awe of the strength of our sweet girl, her determination, her understanding...and her spirit. Today when she left I had tears in my eyes watching Jason's truck pull out of the driveway...I wish this was not her reality, but it is and some days, okay a lot of days I hate it. But, Camryn continually goes about what she needs to, moment by moment and with a quiet strength that can only come from her Heavenly Father she pushes through. Jason said she was all talkative and chatty at clinic saying hi to everyone and just so much more herself. I'm beginning to think the steroids were pulling a number on her emotions too...so it's nice to have bits and pieces of her more consistently.
For everything that Camryn's been through and what it has meant for her and our family it's hard to really wrap our minds around it...we would love to see a new chapter beginning soon...we would love to have this chapter of leukemia, two transplants, weeks of hospital life, broken dreams, letting go, isolation behind us; but that is not to be...
Yet...for I believe and know that one day there will be a new chapter, even today is a new chapter. Maybe the Lord is really teaching me not to look at life as a series of chapters, events, seasons; but rather moments, days, minutes. I'm not sure we will ever have a non-cancer chapter in our families story, I don't think it possible for it to ever be gone...but I do know that there are days, moments, minutes when cancer does not define us and those days are becoming more in number.
Maybe we have a long way to go of doctors appointments, isolation, six medicines a day, shots, line changes, lab draws...but maybe the chapter never closes completely as we are changed...
After night~ David Crowder Band
comes the light
dawn is here
dawn is here
it’s a new day
it’s a new day
everything will change
things will never be the same
we will never be the same
we will never be the same
we will never be the same
we will never be the same
Because the night comes every day and the dawn comes every day...so maybe our *chapter* is a new one daily. Because it is a new day....
Everything has changed and will change...we are not the same, nor will we ever be...
And maybe in the light of HIM that is the best possible place to be.
Monday, October 26, 2009
worth a thousand words...
Here's The Dynamic Duo on the 3 year anniversary of Camryn's first transplant...Camryn was two and a half and Wyatt was a month old. Now they are 5 and a half and 3...and still the greatest duo ever!
And here is our sweet girl with her clip in her hair...
This past weekend was a good one...one spent hanging out together and enjoying being together.
Camryn has been doing well and thankfully staying healthy, so thankful! She is thoroughly loving school and asks to do her homework as she enjoys it so much. We are so incredibly thankful that school has been such a positive experience and encouragement to Camryn. Yes, this is not what we had planned for her, but she is blossoming and doing fabulous! Ms.F constantly is leaving us notes about what a delight Camryn is and how much she enjoys their time together...my heart is so grateful. Camryn heads to clinic tomorrow so we are praying for nice labs and a good visit...being the *sick* season it's always nice to see the doctors for some reassurance that she is doing well.
Wyatt is doing great too! I am so happy to report that he is doing much better and is seemingly over his ear infections and sickness. We are so happy to have our little guy back as we had missed his personality and just the life he brings to our family. Plus, he is sleeping better...and that is a huge blessing for me and Jason! Wyatt continues to play with his trains and just be a crazy boy; but lately he is becoming a lot more interested in coloring. He is doing a good job and he tries to keep up with Camryn...it's cute watching Wyatt watch over Camryn as she does her homework and look out for her always.
Jason and I are doing well...we are both battling on and off again sickness and will be very thankful when it decides to be off again for good. Last night we had the opportunity to go to the U2 concert at the Rose Bowl...so fun! We bought the tickets in May and when we did we both just hoped that life would be in a position to go...and now the event has come and gone and life is moving along. We had a lot of fun with our friends M&C and just enjoying a night out together...along with 90,000+ other fans.
All in all life is going well...more and more a normal is taking shape and it's nice. We are looking forward to some fall festivities this week...pumpkin carving...costumes...candy and just thankful that we've almost made it through October and to day +150. Almost half way to day +300 Camryn next big benchmark...can you believe it's almost been 5 months since her transplant?
We can't and sometimes just looking at her face playing with Wyatt is worth a thousand words...
And here is our sweet girl with her clip in her hair...
This past weekend was a good one...one spent hanging out together and enjoying being together.
Camryn has been doing well and thankfully staying healthy, so thankful! She is thoroughly loving school and asks to do her homework as she enjoys it so much. We are so incredibly thankful that school has been such a positive experience and encouragement to Camryn. Yes, this is not what we had planned for her, but she is blossoming and doing fabulous! Ms.F constantly is leaving us notes about what a delight Camryn is and how much she enjoys their time together...my heart is so grateful. Camryn heads to clinic tomorrow so we are praying for nice labs and a good visit...being the *sick* season it's always nice to see the doctors for some reassurance that she is doing well.
Wyatt is doing great too! I am so happy to report that he is doing much better and is seemingly over his ear infections and sickness. We are so happy to have our little guy back as we had missed his personality and just the life he brings to our family. Plus, he is sleeping better...and that is a huge blessing for me and Jason! Wyatt continues to play with his trains and just be a crazy boy; but lately he is becoming a lot more interested in coloring. He is doing a good job and he tries to keep up with Camryn...it's cute watching Wyatt watch over Camryn as she does her homework and look out for her always.
Jason and I are doing well...we are both battling on and off again sickness and will be very thankful when it decides to be off again for good. Last night we had the opportunity to go to the U2 concert at the Rose Bowl...so fun! We bought the tickets in May and when we did we both just hoped that life would be in a position to go...and now the event has come and gone and life is moving along. We had a lot of fun with our friends M&C and just enjoying a night out together...along with 90,000+ other fans.
All in all life is going well...more and more a normal is taking shape and it's nice. We are looking forward to some fall festivities this week...pumpkin carving...costumes...candy and just thankful that we've almost made it through October and to day +150. Almost half way to day +300 Camryn next big benchmark...can you believe it's almost been 5 months since her transplant?
We can't and sometimes just looking at her face playing with Wyatt is worth a thousand words...
Friday, October 23, 2009
guess what?
Someone's hair in our house is long enough for a clip...can you guess?
Yep, Camryn's! We ordered some baby hair clips last weekend and they arrived yesterday and Camryn was so excited!
Bet you can guess how excited one little girl is!
I'll get some pictures tomorrow and post them...
Until then, just know there is one little girl who is thrilled!
Yep, Camryn's! We ordered some baby hair clips last weekend and they arrived yesterday and Camryn was so excited!
Bet you can guess how excited one little girl is!
I'll get some pictures tomorrow and post them...
Until then, just know there is one little girl who is thrilled!
Thursday, October 22, 2009
just had to share...
Yesterday Camryn had a home health nurse come draw her labs to save us a clinic visit this week. The results would be sent to her doctors at UCLA and they would contact us if anything was amiss with her counts.
The phone rang this morning and the caller ID said UCLA...my heart sank a bit. It's awfully early for them to be calling, I sure hope everything is okay.
Camryn's NP Berkley was on the other end and said that Camryn's labs look really good in fact her liver enzymes were way down! Praise the Lord!
We are so thrilled!!!
Completely thankful today...just thankful that Camryn keeps doing what she should and the better she does hopefully the steroids can be gone for good soon and we'll be down with the side-effects.
Just had to share...thank you all for praying for our sweet girl.
The phone rang this morning and the caller ID said UCLA...my heart sank a bit. It's awfully early for them to be calling, I sure hope everything is okay.
Camryn's NP Berkley was on the other end and said that Camryn's labs look really good in fact her liver enzymes were way down! Praise the Lord!
We are so thrilled!!!
Completely thankful today...just thankful that Camryn keeps doing what she should and the better she does hopefully the steroids can be gone for good soon and we'll be down with the side-effects.
Just had to share...thank you all for praying for our sweet girl.
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