It's been one complete month that Camryn has been home, it's been a month of great praise, anxiousness, worry, celebration and about every other emotion. We love having Camryn home, we love being home as a family...after you've spent 5 weeks apart, 4 weeks together is just a gift. We are grateful, thankful...
Today was one of the best days we've had...Jason and Wyatt ran down to UCLA to pick up Camryn's meds...me and Camryn went over to help do a little odds and ends for Uncle T's wedding. Camryn had a blast...she has been in isolation so long, so to get to see her Grandma, Aunt Becky and Cousin Erin was wonderful. We are so very thankful for today...it was probably on of Camryn's most enjoyable days to date. We had a very fun time together and I'm very thankful for Grandma Mikels including Camryn in the fun, thanks!
We've been struggling to know what to do with Camryn and today was just wonderful so it made for some smiles! We are so very thankful for her uplifted spirits...it was great to see.
Far as Camryn's blood cultures...haven't heard anything. And around here no news is good news...it's been over 48 hours and so we are breathing a bit easier around here. Thankful...so very thankful.
A month...a cherished month and so thankful that we will work towards another month...and another one.
Thank you for praying for us and with us...it's a long journey a very long journey...so thank you. Thank you for walking with us through prayer each day...we are so thankful!
Thursday, July 30, 2009
Wednesday, July 29, 2009
no news yet...
Haven't heard from Camryn's doctors about the blood cultures yesterday...so no news equals good news around here. No need to panic at least not yet...
So today we had a nice day...Jason helped out his Mom get things ready for his brother's wedding and I ran a few errands with my niece who is in town staying with my parents.
The kids decided the wanted to hang out at Grandma's tonight with Kenna so Jason and I got a spur of the moment date...we went to a movie and dinner, it was wonderful. Seriously we have not seen a movie in forever...felt nice to just do what some married folks do. Although can't say we'll do it often as movie ticket prices are insane!
We wait until tomorrow to hear the results of Camryn's cultures...I'll admit it's hard to wait on anything for Cam. Guess the stakes are just so high...feels like everything is full of meaning and what ifs. It's not an easy place to be when everything little thing has to be taken into account...there's really no wait and see how it goes. Sometimes I just wonder what it's like to not have a million worries...
Today I started a Bible study on the Psalms (thanks Kelly)...it focuses on the Psalms of Ascent. The Psalms that lead us into worship...the Psalms, songs sung as the people journeyed to the temple. As I read today it struck me...the Psalms are a collection of songs of the range of emotions that we deal with all that time...
Human...broken...praising...longing for the Lord to redeem us.
And He will.
So today we had a nice day...Jason helped out his Mom get things ready for his brother's wedding and I ran a few errands with my niece who is in town staying with my parents.
The kids decided the wanted to hang out at Grandma's tonight with Kenna so Jason and I got a spur of the moment date...we went to a movie and dinner, it was wonderful. Seriously we have not seen a movie in forever...felt nice to just do what some married folks do. Although can't say we'll do it often as movie ticket prices are insane!
We wait until tomorrow to hear the results of Camryn's cultures...I'll admit it's hard to wait on anything for Cam. Guess the stakes are just so high...feels like everything is full of meaning and what ifs. It's not an easy place to be when everything little thing has to be taken into account...there's really no wait and see how it goes. Sometimes I just wonder what it's like to not have a million worries...
Today I started a Bible study on the Psalms (thanks Kelly)...it focuses on the Psalms of Ascent. The Psalms that lead us into worship...the Psalms, songs sung as the people journeyed to the temple. As I read today it struck me...the Psalms are a collection of songs of the range of emotions that we deal with all that time...
Human...broken...praising...longing for the Lord to redeem us.
And He will.
Tuesday, July 28, 2009
"oh man, bedtime..."
Kids say the darnedest things...and they say the sweetest things too.
Tonight when we announced that it was bedtime we heard, "Oh man, bedtime!" coming from Wyatt's room. He has quite a sense of humor and he says the funniest things...honestly, I wish I had a running tape recorder of his Wyattisms.
Camryn came and cuddled on the couch with me and said, "I'll always be your little girl right?"...she can make my eyes tear up faster than anything. Guess that's what kids do...cause your heart to feel things you never knew you could.
Today Camryn and I headed down to clinic bright and early, I felt to bad waking her up from her deep slumber; but we've found the earlier we get to clinic the better. We can move in and out much more quickly and still have much of the day left. We got down to clinic and found our usual friends and moved through relatively quickly. Camryn went over to see Charlotte to get her labs drawn, yes this is her routine and Camryn loves her routines. We went back over to clinic and then waited to see the doctors. As we waited Dr.A just popped in to say hi as he said that he'll let Dr.M see us today...so as we chatted he asked how Camryn was doing. I told him well, but lately she is complaining of being cold at times...he didn't really think that was a good thing. As we talked Dr.M said hi and Dr.A mentioned it to him...Dr.M didn't like the sound of it either. So, Dr.M ordered blood cultures of both lumen's of Camryn's line and also a peripheral draw and a urine sample...
We continued to talk with Dr.M who we haven't seen in a few weeks as we talked it became evident that Camryn was not having nearly enough GVH to satisfy Dr.M. We want to see more...more would indicate graft vs. host and graft vs. leukemia which is what we want. So today Camryn's cyclosporin was discontinued...no more oily, gross medicine. We are to watch Camryn closely and if we see too much GVH than what we have been told is okay then we call asap. They would then just treat it with steroids sparingly. I was a bit surprised, but I know that this time around the doctors are being very careful and aggressive with Camryn's transplant to do everything they can to never get here again.
I appreciate their care...truly, it is a gift.
Dr.M also said that he would like to move Camryn to every other week appointments after next week. He said for a Day +54 transplant patient she is doing really well...incredibly well. At times it is just amazing to really consider that we are here again. But we are.
As we finished up with Dr.M we went to have Camryn's cultures drawn...9 bottles later the cultures were done and Camryn did GREAT! So proud of her. We wait 24 hours, but more like 48 hours to hear if anything shows up. I don't think the doctors were overly concerned, but wanted to play it safe...fine with me. So we wait and trust...
Camryn's regular labs look great...so that is wonderful!
The rest of the day has gone well...at first I was very upset about Camryn's appointment. I just hate being nervous, anxious and all of that...it's just draining. I was tired...
But as I watched Camryn enjoy life chatting with my sister, nephew and niece who came to visit her today she was full of life...and you know that's enough for today. I cannot chose the path for Camryn, I wish I could. But her and Wyatt both just embraced life today and were a great reminder to their mommy to do the same.
Trust Him...He holds Camryn and Wyatt better than I can.
And for now I will cherish the moments of their funny, sweet, cherished sayings and trust the rest to Him.
But that is easier said than done...so I'm trying day by day, moment by moment to hold them loosely knowing that each day is a gift, because none of them were ever promised.
So at Day +54 we'll be thankful...and yes, it's bedtime!
Tonight when we announced that it was bedtime we heard, "Oh man, bedtime!" coming from Wyatt's room. He has quite a sense of humor and he says the funniest things...honestly, I wish I had a running tape recorder of his Wyattisms.
Camryn came and cuddled on the couch with me and said, "I'll always be your little girl right?"...she can make my eyes tear up faster than anything. Guess that's what kids do...cause your heart to feel things you never knew you could.
Today Camryn and I headed down to clinic bright and early, I felt to bad waking her up from her deep slumber; but we've found the earlier we get to clinic the better. We can move in and out much more quickly and still have much of the day left. We got down to clinic and found our usual friends and moved through relatively quickly. Camryn went over to see Charlotte to get her labs drawn, yes this is her routine and Camryn loves her routines. We went back over to clinic and then waited to see the doctors. As we waited Dr.A just popped in to say hi as he said that he'll let Dr.M see us today...so as we chatted he asked how Camryn was doing. I told him well, but lately she is complaining of being cold at times...he didn't really think that was a good thing. As we talked Dr.M said hi and Dr.A mentioned it to him...Dr.M didn't like the sound of it either. So, Dr.M ordered blood cultures of both lumen's of Camryn's line and also a peripheral draw and a urine sample...
We continued to talk with Dr.M who we haven't seen in a few weeks as we talked it became evident that Camryn was not having nearly enough GVH to satisfy Dr.M. We want to see more...more would indicate graft vs. host and graft vs. leukemia which is what we want. So today Camryn's cyclosporin was discontinued...no more oily, gross medicine. We are to watch Camryn closely and if we see too much GVH than what we have been told is okay then we call asap. They would then just treat it with steroids sparingly. I was a bit surprised, but I know that this time around the doctors are being very careful and aggressive with Camryn's transplant to do everything they can to never get here again.
I appreciate their care...truly, it is a gift.
Dr.M also said that he would like to move Camryn to every other week appointments after next week. He said for a Day +54 transplant patient she is doing really well...incredibly well. At times it is just amazing to really consider that we are here again. But we are.
As we finished up with Dr.M we went to have Camryn's cultures drawn...9 bottles later the cultures were done and Camryn did GREAT! So proud of her. We wait 24 hours, but more like 48 hours to hear if anything shows up. I don't think the doctors were overly concerned, but wanted to play it safe...fine with me. So we wait and trust...
Camryn's regular labs look great...so that is wonderful!
The rest of the day has gone well...at first I was very upset about Camryn's appointment. I just hate being nervous, anxious and all of that...it's just draining. I was tired...
But as I watched Camryn enjoy life chatting with my sister, nephew and niece who came to visit her today she was full of life...and you know that's enough for today. I cannot chose the path for Camryn, I wish I could. But her and Wyatt both just embraced life today and were a great reminder to their mommy to do the same.
Trust Him...He holds Camryn and Wyatt better than I can.
And for now I will cherish the moments of their funny, sweet, cherished sayings and trust the rest to Him.
But that is easier said than done...so I'm trying day by day, moment by moment to hold them loosely knowing that each day is a gift, because none of them were ever promised.
So at Day +54 we'll be thankful...and yes, it's bedtime!
Monday, July 27, 2009
driveway rock concert
So the other night we had a rock concert in our driveway...it was quite a show. Seriously these Mikels kids know how to rock...
Enjoy!
Camryn can rock with the best of them...she's rocking the guitar and proud of it!
Being silly with Daddy...oh how I love these three!
Oh the rock star we've got in Wyatt...he LOVES to rock out on the guitar. Plus, he's rockin' his new hair cut! Isn't he cute?
Maybe Wyatt is taking lessons from Mommy's fave...yes, this is as close as I got to Mr. Keith Urban. Love it!
Hope you are enjoying your summer nights as much as two little Mikels kids.
Enjoy!
Camryn can rock with the best of them...she's rocking the guitar and proud of it!
Being silly with Daddy...oh how I love these three!
Oh the rock star we've got in Wyatt...he LOVES to rock out on the guitar. Plus, he's rockin' his new hair cut! Isn't he cute?
Maybe Wyatt is taking lessons from Mommy's fave...yes, this is as close as I got to Mr. Keith Urban. Love it!
Hope you are enjoying your summer nights as much as two little Mikels kids.
Sunday, July 26, 2009
sweetest thing ever...
Tonight as I heard little footsteps coming into the living room I saw Wyatt with Jason...
Jason said that Wyatt had something to tell me...so with the cutest little smile on his face, Wyatt says, "I ask Jesus to come in my heart." I won't lie...tears came. Oh how the heaviness and weariness of our journey just melted away with the innocence of our little boy. I hugged him and just loved on him...
Guess that's really all that matters...a heart that's HIS.
Jesus loves me this I know...oh how simple, sweet and true!
Jason said that Wyatt had something to tell me...so with the cutest little smile on his face, Wyatt says, "I ask Jesus to come in my heart." I won't lie...tears came. Oh how the heaviness and weariness of our journey just melted away with the innocence of our little boy. I hugged him and just loved on him...
Guess that's really all that matters...a heart that's HIS.
Jesus loves me this I know...oh how simple, sweet and true!
different this time around...
Everyday Jason and I realize how different it is going through transplant with a five-year-old instead of a two-year-old...sometimes I just can't believe how different it is. Camryn is so aware of it all...she knows so much more.
I would be lying if I said that it was all great...we are learning how to deal with Camryn's life now. She is sad...pretty much we've come to lay it at our Father's feet knowing that HE loves her more than we do and HE is holding her throughout this journey. It is hard to see Cam sad...it is hard to know what to say. Jason and I were talking trying to figure out how best to encourage Camryn and yet be realistic. There are things that she simply cannot do and yet she wants to. Like Jason said Camryn understands fairness and to her this is not fair...
And it isn't.
Yet, learning that lesson at five is rough...especially in such a huge way. As parents we teach our children that they can't always win, that sometimes this just don't work out fairly...but, how do you explain to Camryn that having leukemia and having her life become so different is fair? You don't...but, honestly I don't have the words that make it understandable for her.
We are really trying to figure out some things and I thank you for continuing to pray for Camryn...this is a long road.
For now her brother is a huge friend to her...she LOVES him and he LOVES her. He provides a companion, a buddy, a friend...and we are thankful. But like most kids she is longing for others...her friends from church, her cousins, making new friends. It's hard to see her want to be social, but she can't be.
Hang in there Cam...we know that for right now this is so difficult for you. And honestly we hate it, but we are thankful that you are thriving and one day, hopefully soon you'll get out into the world again and live the life you long for. We are sorry sweet girl...We love you so!
I would be lying if I said that it was all great...we are learning how to deal with Camryn's life now. She is sad...pretty much we've come to lay it at our Father's feet knowing that HE loves her more than we do and HE is holding her throughout this journey. It is hard to see Cam sad...it is hard to know what to say. Jason and I were talking trying to figure out how best to encourage Camryn and yet be realistic. There are things that she simply cannot do and yet she wants to. Like Jason said Camryn understands fairness and to her this is not fair...
And it isn't.
Yet, learning that lesson at five is rough...especially in such a huge way. As parents we teach our children that they can't always win, that sometimes this just don't work out fairly...but, how do you explain to Camryn that having leukemia and having her life become so different is fair? You don't...but, honestly I don't have the words that make it understandable for her.
We are really trying to figure out some things and I thank you for continuing to pray for Camryn...this is a long road.
For now her brother is a huge friend to her...she LOVES him and he LOVES her. He provides a companion, a buddy, a friend...and we are thankful. But like most kids she is longing for others...her friends from church, her cousins, making new friends. It's hard to see her want to be social, but she can't be.
Hang in there Cam...we know that for right now this is so difficult for you. And honestly we hate it, but we are thankful that you are thriving and one day, hopefully soon you'll get out into the world again and live the life you long for. We are sorry sweet girl...We love you so!
Saturday, July 25, 2009
best view ever...
From my front porch...Jason, Camryn, Wyatt and me enjoying a summer evening. As I sat there I was reminded what it is about summer I love...yes, time off of work is a big plus, but really I love the evenings. The long hours of daylight...the cool breeze that picks up while dusk comes...ah, the beauty of it.
While Camryn was in the hospital our yard, house took a beating...it was not thrashed, but really it wasn't looked after either. Our neighbor Jack kindly mowed our yard for us, but beyond that our yard was left to do what nature does best...either grow like weeds, literally or die from lack of water. So, tonight while the kids rode their bikes and just played like crazy in the front yard I tended to my rose bushes. I clipped the dead roses and did a little weeding, okay a lot of weeding...but it was wonderful. Wonderful to hear the giggles and the pretend play...precious to hear Camryn and Wyatt call either other "friend" while they played. Jason and I tidyed up things and just enjoyed the evening too...it was nice to see smiles on faces and just enjoy what I think is best about summer.
Things here are going well...Camryn is doing great physically, but I think emotionally she is struggling which leads her to just want to lay on the couch not do much. She is struggling with missing her friends...she told me tonight that she was sad about not seeing her friends, going anywhere, doing anything. In a way I think she is a bit bored...she is trying her best to enjoy being home and she is enjoying it. But, like most kids there comes a point when they want to go and do...and right now Camryn just can't. It's hard to know exactly how to keep her occupied...and we are trying to make being home as fun as we can.
Just another way that isolation affects pretty much every area of our lives...
We are trying to be thankful for each moment and day...not get too caught up in what we can and can't do. But, right now Camryn is really discouraged...we are praying that the Lord would lead us to know how best to encourage Camryn and help her through this part of the journey.
And yet the best view ever is her little face sitting with Wy enjoying life for what it is right here, right now...
Can't ask for much more than that.
While Camryn was in the hospital our yard, house took a beating...it was not thrashed, but really it wasn't looked after either. Our neighbor Jack kindly mowed our yard for us, but beyond that our yard was left to do what nature does best...either grow like weeds, literally or die from lack of water. So, tonight while the kids rode their bikes and just played like crazy in the front yard I tended to my rose bushes. I clipped the dead roses and did a little weeding, okay a lot of weeding...but it was wonderful. Wonderful to hear the giggles and the pretend play...precious to hear Camryn and Wyatt call either other "friend" while they played. Jason and I tidyed up things and just enjoyed the evening too...it was nice to see smiles on faces and just enjoy what I think is best about summer.
Things here are going well...Camryn is doing great physically, but I think emotionally she is struggling which leads her to just want to lay on the couch not do much. She is struggling with missing her friends...she told me tonight that she was sad about not seeing her friends, going anywhere, doing anything. In a way I think she is a bit bored...she is trying her best to enjoy being home and she is enjoying it. But, like most kids there comes a point when they want to go and do...and right now Camryn just can't. It's hard to know exactly how to keep her occupied...and we are trying to make being home as fun as we can.
Just another way that isolation affects pretty much every area of our lives...
We are trying to be thankful for each moment and day...not get too caught up in what we can and can't do. But, right now Camryn is really discouraged...we are praying that the Lord would lead us to know how best to encourage Camryn and help her through this part of the journey.
And yet the best view ever is her little face sitting with Wy enjoying life for what it is right here, right now...
Can't ask for much more than that.
Thursday, July 23, 2009
little by little
Yesterday was a pretty good day...
Camryn and Wyatt spent lots of time playing and just being silly. They are both quite into music lately and many hours are spent listening to various songs and putting on mini-concerts. Wyatt has taken a liking to playing Camryn's guitar, it's hilarious. Honestly, I just sit and laugh at their antics...fun stuff.
In the evening we drove out to visit our nephew Joshua who is at college working this summer...we had a lovely time. Although I forget that Camryn's system runs a bit cooler on blood thinners and forget that the evening cool down gets to her. So she was wrapped in a sweatshirt and enjoyed seeing Josh. It was nice to get out a bit to just hang out and be somewhat normal.
Today we ran some errands which included picking up Camryn's meds at UCLA...we've gone back and forth through pharmacy issues since the beginning of everything with Cam; so now we're trying out UCLA's pharmacy. At least I know they *should* carry everything Camryn is on...at least I hope so. We also ran up to the third floor to say hello and good-bye to our dear friend Kristen. Kristen has been our nurse practitioner since the very beginning...Jason, Camryn and I first met Kristen in July of 2006. Three years together walking this journey...I can say that Kristen has been an encouragement through some of our darkest days. We went to say good-bye as she will no longer be our nurse practitioner, we'll still see Kristen as she is at UCLA...but it won't be the same. Thanks Kristen...
And little by little our new normal is taking shape. Jason and I have begun to really talk through our homeschooling adventure that awaits for Camryn. I have to call the lady at UCLA who coordinates all of this at the beginning on August...I am really intrigued to see what it entails. To be honest, I'm a little overwhelmed with this new adventure...we are talking through where to step up "school" in our house...schedules and just beginning to get our feet wet in this adventure that really neither one of us is really prepared for.
We are doing some home improvements to make use of our time at home...I won't lie it's nice to really feel like we are doing something with our isolated life. It feels good to not just let the days pass us by...although some days that is just perfect. We have a laziness to our days right now which is nice, it gives us time to settle in to life again.
Camryn has taken up scrap booking...she was given some scrapbook sets and I had pictures printed to decorate her hospital room, so it makes for a good combination. She is loving it...she's quite creative and she enjoys the papers, stickers, pens and most of all the pictures. It is fun to see her really interested in something...I'd love to see it continue. Guess that means time to get more pictures printed.
Wyatt is doing fabulous...he is loving having Camryn home to play with him. He is 100% potty trained and it's hilarious his commentary on going potty. Wy is growing up in so many ways...can't get over all his words and funny little sayings. Plus, his personality is just blossoming more and more. He is really into baseball and LOVES playing with his Daddy...quite a pair those 2 are.
And little by little life is taking shape...all be it ever so slowly.
As we walked down the hall of the third floor I couldn't help but think it's been 7 weeks since Cam's transplant...7 weeks. Our lives are moving along, Camryn continues to do well.
Please continue to pray for Camryn as there is still a lot that she is dealing with. The loss of her hair was a very significant loss for her, it should start coming back in the next few months...but, it's a slow process. She is also fully aware of what she can and cannot do...what she can and cannot eat, and sometimes all of that is hard for her. Please pray that as we go through out the summer and prepare her for school only very differently than she was planning for that the Lord walks with her.
Thank you to those of you who are praying for our sister-in-law Devon who is 22 weeks pregnant with a sweet baby girl...Devon is in the hospital currently on magnesium and it is an hourly battle for her physically, mentally and emotionally. Please continue to pray for her, baby girl, Rob and Riley that the Lord lavishes His comfort, peace and grace on them throughout this journey.
And if I can bring one more request. This one is for a sweet baby girl who I have mentioned before who is fighting leukemia with all she's got. She is at UCLA and is fighting for remission in order to get to transplant...she is a sweet baby girl 4 months old. Please pray that the chemotherapy can get her to remission...that her pain can be managed...for grace for her Mommy and Daddy.
May each of you have a peaceful evening...good-night.
Camryn and Wyatt spent lots of time playing and just being silly. They are both quite into music lately and many hours are spent listening to various songs and putting on mini-concerts. Wyatt has taken a liking to playing Camryn's guitar, it's hilarious. Honestly, I just sit and laugh at their antics...fun stuff.
In the evening we drove out to visit our nephew Joshua who is at college working this summer...we had a lovely time. Although I forget that Camryn's system runs a bit cooler on blood thinners and forget that the evening cool down gets to her. So she was wrapped in a sweatshirt and enjoyed seeing Josh. It was nice to get out a bit to just hang out and be somewhat normal.
Today we ran some errands which included picking up Camryn's meds at UCLA...we've gone back and forth through pharmacy issues since the beginning of everything with Cam; so now we're trying out UCLA's pharmacy. At least I know they *should* carry everything Camryn is on...at least I hope so. We also ran up to the third floor to say hello and good-bye to our dear friend Kristen. Kristen has been our nurse practitioner since the very beginning...Jason, Camryn and I first met Kristen in July of 2006. Three years together walking this journey...I can say that Kristen has been an encouragement through some of our darkest days. We went to say good-bye as she will no longer be our nurse practitioner, we'll still see Kristen as she is at UCLA...but it won't be the same. Thanks Kristen...
And little by little our new normal is taking shape. Jason and I have begun to really talk through our homeschooling adventure that awaits for Camryn. I have to call the lady at UCLA who coordinates all of this at the beginning on August...I am really intrigued to see what it entails. To be honest, I'm a little overwhelmed with this new adventure...we are talking through where to step up "school" in our house...schedules and just beginning to get our feet wet in this adventure that really neither one of us is really prepared for.
We are doing some home improvements to make use of our time at home...I won't lie it's nice to really feel like we are doing something with our isolated life. It feels good to not just let the days pass us by...although some days that is just perfect. We have a laziness to our days right now which is nice, it gives us time to settle in to life again.
Camryn has taken up scrap booking...she was given some scrapbook sets and I had pictures printed to decorate her hospital room, so it makes for a good combination. She is loving it...she's quite creative and she enjoys the papers, stickers, pens and most of all the pictures. It is fun to see her really interested in something...I'd love to see it continue. Guess that means time to get more pictures printed.
Wyatt is doing fabulous...he is loving having Camryn home to play with him. He is 100% potty trained and it's hilarious his commentary on going potty. Wy is growing up in so many ways...can't get over all his words and funny little sayings. Plus, his personality is just blossoming more and more. He is really into baseball and LOVES playing with his Daddy...quite a pair those 2 are.
And little by little life is taking shape...all be it ever so slowly.
As we walked down the hall of the third floor I couldn't help but think it's been 7 weeks since Cam's transplant...7 weeks. Our lives are moving along, Camryn continues to do well.
Please continue to pray for Camryn as there is still a lot that she is dealing with. The loss of her hair was a very significant loss for her, it should start coming back in the next few months...but, it's a slow process. She is also fully aware of what she can and cannot do...what she can and cannot eat, and sometimes all of that is hard for her. Please pray that as we go through out the summer and prepare her for school only very differently than she was planning for that the Lord walks with her.
Thank you to those of you who are praying for our sister-in-law Devon who is 22 weeks pregnant with a sweet baby girl...Devon is in the hospital currently on magnesium and it is an hourly battle for her physically, mentally and emotionally. Please continue to pray for her, baby girl, Rob and Riley that the Lord lavishes His comfort, peace and grace on them throughout this journey.
And if I can bring one more request. This one is for a sweet baby girl who I have mentioned before who is fighting leukemia with all she's got. She is at UCLA and is fighting for remission in order to get to transplant...she is a sweet baby girl 4 months old. Please pray that the chemotherapy can get her to remission...that her pain can be managed...for grace for her Mommy and Daddy.
May each of you have a peaceful evening...good-night.
Tuesday, July 21, 2009
day +47..."playing with fire"
Last week at clinic Dr.A said that "we are sort of playing with fire", he was referring to the fire of GVH (graft vs. host disease) and the playing? Adjusting Camryn's cyclosporin levels to bring some fire, to fan it a bit...but not let it get out of control like a raging wildfire. One of our countless activities throughout the day is looking for fire...you might remember that this fire comes in forms of rashes, itchy rashes and redness. As Camryn's cyclosporin is lowered we should see more signs, well...this week we had not seen much.
So today at clinic we gave the updates to Dr.K and talked about what meds we needed refills for and so on. Dr.K was pleased with Camryn, "she looks great!". We went over to the procedure area to see Nurse Charlotte as that pretty much is the only person Camryn wants to draw her blood...honestly, Nurse Charlotte means the world to Camryn. She brings comfort and stability. After that we headed over to clinic just to wait to see the rest of the doctors. Dr.G came in to see Camryn and was so amazed at how well she looked. Dr.G was the attending doctor on the day of Camryn's transplant so it was fun for her to see Camryn again. We were packing up to get ready to leave as we waited for our prescriptions and Dr.A walked in. Camryn has a unique relationship with Dr.A, she loves to tease and play shy with him...it's cute. Dr.A took a look at all the usual places for GVH; palms of hands, soles of feet and ears...and he wanted more redness. So he lowered her dose again...honestly it's so weird how much GVH Camryn had early on and now we are lowering meds to get more. Interesting this whole process.
We went back by to say good-bye to our procedure friends and got Camryn's labs...they look fantastic! All Camryn's levels are doing really well...nice and steady with increases. Her ANC is now up to 1600! So the doctors weren't lying when they said "it will come...". We cherish these great lab sheets, they are treasures to us. It's odd how we can read them so well and can anticipate where Camryn is by reading numbers.
Jason and I were talking about how different things are this time...our hearts are a bit more guarded. We aren't on pins and needles every time we head to clinic. We have found a level of comfort and know that we can ask questions, we can call, we are not rookies to this. Camryn is doing really well, but there is a daily struggle to let her go...to trust her to the Lord's hands over and over again. I think during recovery last time we were so worried that anything we did would cause the other shoe to drop, the bottom to fall out. And you know...nothing we did or didn't do did that.
This is something I've been really wrestling, contemplating, chewing on these past couple days...there is nothing we can do to prevent the bottom falling out again. We live in a broken, messed up world and there are so many things just not right. And I struggle with how to live within the mess sometimes...I want the Lord to assure me all will be okay, that Camryn will be cancer free forever; but that is impossible. I don't think He works that way...will Camryn be cancer free? I hope so, I pray to that end; but I realize that the outcomes are His not mine.
I am called to be His vessel no matter the journey, no matter where this road takes me...does the idea of Camryn's cancer coming back scare me? Absolutely, rips my heart in two to even consider it. Do I live in fear of it? Honestly, yes...and this is something that the Lord and I are working through. The idea of fear...
I have always feared fire...seriously I am terrified of it. I hate lighting matches, I always have. And you know I guess in a way "playing with fire" is exactly what I'm doing...
I am having to face my fear head on. I am having to release some things that I hold so dear. I am having to play if you will, learn to enjoy the days ahead without clenched fists. But, rather with open hands...letting go.
This afternoon a dear friend Kelly came by to hang out...as Kelly and I chatted about life and who God is and what He is up to I was struck by something. That He is so much bigger...that what I believe to be true about who He is hasn't changed. Yes, we have walked through a valley with Camryn, but I know there is a mountain top. And I know that on the mountain top I will see...
See His goodness...
See His grace...
See Him...
I am learning to "play with fire" in order to better see my Savior. It's not easy and some days it is just pain hard...but moment by moment...
His grace is sufficient for me.
So today at clinic we gave the updates to Dr.K and talked about what meds we needed refills for and so on. Dr.K was pleased with Camryn, "she looks great!". We went over to the procedure area to see Nurse Charlotte as that pretty much is the only person Camryn wants to draw her blood...honestly, Nurse Charlotte means the world to Camryn. She brings comfort and stability. After that we headed over to clinic just to wait to see the rest of the doctors. Dr.G came in to see Camryn and was so amazed at how well she looked. Dr.G was the attending doctor on the day of Camryn's transplant so it was fun for her to see Camryn again. We were packing up to get ready to leave as we waited for our prescriptions and Dr.A walked in. Camryn has a unique relationship with Dr.A, she loves to tease and play shy with him...it's cute. Dr.A took a look at all the usual places for GVH; palms of hands, soles of feet and ears...and he wanted more redness. So he lowered her dose again...honestly it's so weird how much GVH Camryn had early on and now we are lowering meds to get more. Interesting this whole process.
We went back by to say good-bye to our procedure friends and got Camryn's labs...they look fantastic! All Camryn's levels are doing really well...nice and steady with increases. Her ANC is now up to 1600! So the doctors weren't lying when they said "it will come...". We cherish these great lab sheets, they are treasures to us. It's odd how we can read them so well and can anticipate where Camryn is by reading numbers.
Jason and I were talking about how different things are this time...our hearts are a bit more guarded. We aren't on pins and needles every time we head to clinic. We have found a level of comfort and know that we can ask questions, we can call, we are not rookies to this. Camryn is doing really well, but there is a daily struggle to let her go...to trust her to the Lord's hands over and over again. I think during recovery last time we were so worried that anything we did would cause the other shoe to drop, the bottom to fall out. And you know...nothing we did or didn't do did that.
This is something I've been really wrestling, contemplating, chewing on these past couple days...there is nothing we can do to prevent the bottom falling out again. We live in a broken, messed up world and there are so many things just not right. And I struggle with how to live within the mess sometimes...I want the Lord to assure me all will be okay, that Camryn will be cancer free forever; but that is impossible. I don't think He works that way...will Camryn be cancer free? I hope so, I pray to that end; but I realize that the outcomes are His not mine.
I am called to be His vessel no matter the journey, no matter where this road takes me...does the idea of Camryn's cancer coming back scare me? Absolutely, rips my heart in two to even consider it. Do I live in fear of it? Honestly, yes...and this is something that the Lord and I are working through. The idea of fear...
I have always feared fire...seriously I am terrified of it. I hate lighting matches, I always have. And you know I guess in a way "playing with fire" is exactly what I'm doing...
I am having to face my fear head on. I am having to release some things that I hold so dear. I am having to play if you will, learn to enjoy the days ahead without clenched fists. But, rather with open hands...letting go.
This afternoon a dear friend Kelly came by to hang out...as Kelly and I chatted about life and who God is and what He is up to I was struck by something. That He is so much bigger...that what I believe to be true about who He is hasn't changed. Yes, we have walked through a valley with Camryn, but I know there is a mountain top. And I know that on the mountain top I will see...
See His goodness...
See His grace...
See Him...
I am learning to "play with fire" in order to better see my Savior. It's not easy and some days it is just pain hard...but moment by moment...
His grace is sufficient for me.
Monday, July 20, 2009
weekend wrap-up
We enjoyed a nice weekend around the Mikels house...
Friday night Camryn invited my mom over to watch the D.isney Channel special that she had been anticipating since her days in the hospital. So with bowls of popcorn and chocolate chip cookies we settled in for a fun evening of "movie" viewing. Camryn cracks me up she is getting more and more interested in schedules, dates and calendars. Guess she is a bit like her mommy and likes to have a plan for the days ahead. Lots of fun watching together...
Saturday we spent the morning sleeping in and then Jason and I ran a few errands. It is hard not loading the kids up to run our errands all together, I miss it. But for now we either run errands separately or alone...it's okay but I do miss shopping with my little girl, my shopping buddy. Saturday evening we went over to Jason's parents house to hang out. We had a lot of fun playing on the patio, playing baseball...but I think the kids had the most fun reading books with Papa. They brought him book after book and he happily obliged them and read every one. It was quite fun. The other big event coming in the Mikels household is Jason's little brother's wedding which is 2 weeks away...so lots of wedding talk is about. What a fun day it will be.
Sunday we spent the morning doing odds and ends around the house. During the afternoon I went over to visit my sis-in-law Devon as she is in the hospital. We had a nice visit together...thank you for your prayers. Please continue to pray for her, Rob, our sweet niece Riley and sweet baby girl...it's a day by day journey. I thank you for praying, these next few weeks are very critical as baby girl grows and reaches 24 weeks. Thanks for your prayers!
Sunday night Jason and I headed out to the Keith Urban concert...we bought the tickets in February before life changed dramatically and were hopeful we'd get to go; but if not oh well. Well, we got to go and it was so great. Jason and I haven't been on a date out in a long time so it was nice to go to dinner and the concert. What a great show...you may not like country music, but it was an awesome show. And in fact...Keith comes and sings in the crowd and he was 2 rows away from us...yep, could've touch him if I were one of those crazed fans that "freak out" and kiss celebrities. :)
Hope you all had a nice weekend...and a nice week ahead.
Friday night Camryn invited my mom over to watch the D.isney Channel special that she had been anticipating since her days in the hospital. So with bowls of popcorn and chocolate chip cookies we settled in for a fun evening of "movie" viewing. Camryn cracks me up she is getting more and more interested in schedules, dates and calendars. Guess she is a bit like her mommy and likes to have a plan for the days ahead. Lots of fun watching together...
Saturday we spent the morning sleeping in and then Jason and I ran a few errands. It is hard not loading the kids up to run our errands all together, I miss it. But for now we either run errands separately or alone...it's okay but I do miss shopping with my little girl, my shopping buddy. Saturday evening we went over to Jason's parents house to hang out. We had a lot of fun playing on the patio, playing baseball...but I think the kids had the most fun reading books with Papa. They brought him book after book and he happily obliged them and read every one. It was quite fun. The other big event coming in the Mikels household is Jason's little brother's wedding which is 2 weeks away...so lots of wedding talk is about. What a fun day it will be.
Sunday we spent the morning doing odds and ends around the house. During the afternoon I went over to visit my sis-in-law Devon as she is in the hospital. We had a nice visit together...thank you for your prayers. Please continue to pray for her, Rob, our sweet niece Riley and sweet baby girl...it's a day by day journey. I thank you for praying, these next few weeks are very critical as baby girl grows and reaches 24 weeks. Thanks for your prayers!
Sunday night Jason and I headed out to the Keith Urban concert...we bought the tickets in February before life changed dramatically and were hopeful we'd get to go; but if not oh well. Well, we got to go and it was so great. Jason and I haven't been on a date out in a long time so it was nice to go to dinner and the concert. What a great show...you may not like country music, but it was an awesome show. And in fact...Keith comes and sings in the crowd and he was 2 rows away from us...yep, could've touch him if I were one of those crazed fans that "freak out" and kiss celebrities. :)
Hope you all had a nice weekend...and a nice week ahead.
Saturday, July 18, 2009
prayer request
I would like to ask you all to pray...
For my sister-in-law Devon and her sweet little baby girl as Devon was admitted to the hospital last night and most likely will be there until she delivers. And we are praying that it will be MANY more weeks until we meet our sweet little niece. This will be a long fight and I ask you to pray along with me for strength, health and peace.
We know and believe that HE is holding them closely as HE holds our family...please pray for Rob (Jason's brother) as he cares for Devon and their little girl Riley, pray for Riley whose world is going to be shuffled around a little bit, much like another 2 year old I know all to well and it's hard. Please pray that HE would be ever so close to them...every moment, each step, each day.
Thank you friends...
For my sister-in-law Devon and her sweet little baby girl as Devon was admitted to the hospital last night and most likely will be there until she delivers. And we are praying that it will be MANY more weeks until we meet our sweet little niece. This will be a long fight and I ask you to pray along with me for strength, health and peace.
We know and believe that HE is holding them closely as HE holds our family...please pray for Rob (Jason's brother) as he cares for Devon and their little girl Riley, pray for Riley whose world is going to be shuffled around a little bit, much like another 2 year old I know all to well and it's hard. Please pray that HE would be ever so close to them...every moment, each step, each day.
Thank you friends...
Friday, July 17, 2009
special thanks
There is a group of people who daily go about selfless tasks with such grace they certainly deserve a thank you...actually many thanks. We as a family are indebted to them for their countless acts of service not only to Camryn, but to us as a family as well. It goes without saying that our journey through the past months would have been much more difficult without these people.
Who are these people you ask? The heroes of UCLA who on any given day encouraged, cared, loved us and took care of our precious girl and us along the way. They certainly go about their days without much fanfare...no they do their jobs, but they do it so well. They are not just doctors, nurses and care partners; no they are so much more...they are family to us. You cannot spend the hours, days and weeks together and not become close...you develop bonds over fighting a disease, hoping for recovery. Yes, you fight together, cry together and celebrate the victories together.
Here are a few pictures of some of the heroes at UCLA...
Of course these are not all the heroes at UCLA...there are many, many more. So over the course of our visits to clinic and back to the 3rd floor we will get pictures with other of our heroes.
To all of you at UCLA...
From the bottom of our hearts we thank you for all you have done for us and do for us. Each of you gave to our family in ways that are precious to us, you gave of yourself and that is a priceless gift. Thank you for talking with us, encouraging us and helping us believe that Camryn will get through. We cannot say thank you enough...you are a precious group to us.
We love you!
~ the mikels family
Who are these people you ask? The heroes of UCLA who on any given day encouraged, cared, loved us and took care of our precious girl and us along the way. They certainly go about their days without much fanfare...no they do their jobs, but they do it so well. They are not just doctors, nurses and care partners; no they are so much more...they are family to us. You cannot spend the hours, days and weeks together and not become close...you develop bonds over fighting a disease, hoping for recovery. Yes, you fight together, cry together and celebrate the victories together.
Here are a few pictures of some of the heroes at UCLA...
Of course these are not all the heroes at UCLA...there are many, many more. So over the course of our visits to clinic and back to the 3rd floor we will get pictures with other of our heroes.
To all of you at UCLA...
From the bottom of our hearts we thank you for all you have done for us and do for us. Each of you gave to our family in ways that are precious to us, you gave of yourself and that is a priceless gift. Thank you for talking with us, encouraging us and helping us believe that Camryn will get through. We cannot say thank you enough...you are a precious group to us.
We love you!
~ the mikels family
Wednesday, July 15, 2009
home...
Our plumbing is fixed! Yay...we are home. It is so nice to be home and able to take care of things here. We are incredibly thankful for my parents and their generosity for housing us for the past five days. But, I won't lie it is fantastic to be home.
The kids have done really well being away from home, but both of them are thrilled to be home in their own beds...there is just something about home. After hospital stays one doesn't take home lightly, yes we are home.
So thankful for my Hubby and all his work to get everything fixed...such a blessing!
The kids have done really well being away from home, but both of them are thrilled to be home in their own beds...there is just something about home. After hospital stays one doesn't take home lightly, yes we are home.
So thankful for my Hubby and all his work to get everything fixed...such a blessing!
Tuesday, July 14, 2009
day +40...a good report
40...can you believe we are forty days post transplant? Hard to believe and yet so amazing!
Camryn and I headed out bright and early for clinic today, hopeful it would be a quick trip as her levels were great last Friday. We got to clinic in record time and found our usual spot in the procedure area. Nurse Charlotte took Camryn's labs and we waited. While we waiting Dr.K came to see Camryn and said that she looked really good...although Camryn was being quite a stinker not cooperating for the exam. She did have her killer grin on her face and was just loving giving the doctors a hard time. We talked with Kristen for a bit which was so nice and then Dr.A came. Camryn continued her teasing some more and Dr.A swept her up in his arms and just loved on her. Too sweet. He did his exam and it was determined that Camryn looked wonderful...no real changes, just waiting for labs to come back. As we waited we got to talk with a mommy friend and her little guy who had a transplant a little bit before Camryn, it was nice to see them and as always it is super nice to see like transplant kids doing so well! Camryn's labs came back and they were fabulous! Her ANC is up to 1100 and all other levels look great...surprisingly her platelets are up to 117,000. YAY!
So we headed home and thanked the Lord for a great visit...these are not taken for granted as we know all to well how quickly things can change. We are grateful for today...
We headed over to Jason's parents house for a visit as the plumbers are working at our house. (they should be done tomorrow...yay!) We visited with Jason's grandparents and enjoyed the day together...such a great thing to have our kids spend time with their great-grandparents, truly a treasure.
After while the kids and I headed back to my parents house and are enjoying the evening there. The kids are taking baths and laughing all the while just savoring life. It's wonderful to see them just smile...today I'm very grateful for those smiles.
I did get out to the mall alone for a little bit...it was very nice. I was hunting for headbands for the my nieces and Camryn to wear in my brother-in-law's wedding. I was successful, but truly I enjoyed just a few minutes alone time...it was quiet and my thoughts were clear. I ran by to see my mom-in-law with the headbands and luck for me I got to see my super cute niece Riley today...what a treat! That was a highlight for me.
Thankful for today...knowing that each one is a gift.
Just simply thankful...
Camryn and I headed out bright and early for clinic today, hopeful it would be a quick trip as her levels were great last Friday. We got to clinic in record time and found our usual spot in the procedure area. Nurse Charlotte took Camryn's labs and we waited. While we waiting Dr.K came to see Camryn and said that she looked really good...although Camryn was being quite a stinker not cooperating for the exam. She did have her killer grin on her face and was just loving giving the doctors a hard time. We talked with Kristen for a bit which was so nice and then Dr.A came. Camryn continued her teasing some more and Dr.A swept her up in his arms and just loved on her. Too sweet. He did his exam and it was determined that Camryn looked wonderful...no real changes, just waiting for labs to come back. As we waited we got to talk with a mommy friend and her little guy who had a transplant a little bit before Camryn, it was nice to see them and as always it is super nice to see like transplant kids doing so well! Camryn's labs came back and they were fabulous! Her ANC is up to 1100 and all other levels look great...surprisingly her platelets are up to 117,000. YAY!
So we headed home and thanked the Lord for a great visit...these are not taken for granted as we know all to well how quickly things can change. We are grateful for today...
We headed over to Jason's parents house for a visit as the plumbers are working at our house. (they should be done tomorrow...yay!) We visited with Jason's grandparents and enjoyed the day together...such a great thing to have our kids spend time with their great-grandparents, truly a treasure.
After while the kids and I headed back to my parents house and are enjoying the evening there. The kids are taking baths and laughing all the while just savoring life. It's wonderful to see them just smile...today I'm very grateful for those smiles.
I did get out to the mall alone for a little bit...it was very nice. I was hunting for headbands for the my nieces and Camryn to wear in my brother-in-law's wedding. I was successful, but truly I enjoyed just a few minutes alone time...it was quiet and my thoughts were clear. I ran by to see my mom-in-law with the headbands and luck for me I got to see my super cute niece Riley today...what a treat! That was a highlight for me.
Thankful for today...knowing that each one is a gift.
Just simply thankful...
Monday, July 13, 2009
day +39...the going ons
The big going on this weekend I'm happy to say is that Wyatt is potty trained...he is in his big boy underwear all day long and hasn't had an accident yet. He's quite funny and just a crack up with this commentary on going potty. But, we are so proud of our big boy...no more diapers! We are so excited...although it does mean to a degree that we officially have left the baby department at our house. As I said to Jason as we walked by the baby section in Tar.get today...guess we don't frequent that section anymore. Weird, but exciting to start another season with our little/big ones.
This past weekend was a little crazy and the start of this week is following that lead. Our house is still under repair as we are getting our plumbing problem taken care of...we are hopeful that maybe tomorrow night we'll be back at home. We'll see. Nothing in the home repair area is ever quick or easy, so we'll wait and see.
Camryn and Wyatt have enjoyed being at Papa and Grandma Wilson's house, but they are getting quite antsy to be home. Such little homebodies they are...they miss their rooms, beds, toys, things. It's especially hard for Camryn as she was just starting to really settle in at home and now to be uprooted again is rough on her. Things affect her much more deeply now, so she is very anxious to get home! But, we are very thankful for having a home to crash in for a few days.
On Saturday me and the kids headed over to Grandpa & Grandma Mikels' house to visit with Jason's grandparents who are visiting from Illinois. We so look forward to them coming and visiting us, and this year we were very thrilled that Camryn is home and able to visit with them. Grandpa & Grandma Blake are probably two of Camryn's biggest supporters, they keep a countdown calendar of what day she is at and call Jason's mom weekly for their update. Camryn loved visiting with them so much she even at one point told me to go into the other room so she could be with G&G by herself. She chatted, played and just enjoyed their company. Wyatt had fun too, although Wy really didn't remember them too well it didn't take long for him to warm up. In no time Wyatt was on the floor with Grandpa building a train track and playing trains...and then he was helping Grandpa sweep the back patio. What a lovely day we had enjoying family.
Sunday was a lazy day of just hanging out...nothing much to do as we just tried to stay indoors and keep cool. In the evening we went outside for a little evening fun...summer evenings are my favorite, it was a beautiful night.
All in all we've had a nice weekend and hopeful for a nice week. Tomorrow Camryn and I will head to clinic for a level check and see our favorite doctors and nurses. Hoping her strong levels are continuing!
***********
On another note I'd like to share a prayer request with you for a little baby girl who in now fighting a leukemia relapse. We met this family through blog world, but I did get a wonderful opportunity to meet them face to face. Please pray for their little one as she undergoes an intense round of chemo to get her to remission and then transplant. Obviously they are very close to our hearts as they are walking a road no one ever should.
Thank you our faithful prayer friends, we appreciate the countless acts of love you have shown us. Thanks for your encouragement as we walk this road...
Here's looking forward to many more day +'s!
This past weekend was a little crazy and the start of this week is following that lead. Our house is still under repair as we are getting our plumbing problem taken care of...we are hopeful that maybe tomorrow night we'll be back at home. We'll see. Nothing in the home repair area is ever quick or easy, so we'll wait and see.
Camryn and Wyatt have enjoyed being at Papa and Grandma Wilson's house, but they are getting quite antsy to be home. Such little homebodies they are...they miss their rooms, beds, toys, things. It's especially hard for Camryn as she was just starting to really settle in at home and now to be uprooted again is rough on her. Things affect her much more deeply now, so she is very anxious to get home! But, we are very thankful for having a home to crash in for a few days.
On Saturday me and the kids headed over to Grandpa & Grandma Mikels' house to visit with Jason's grandparents who are visiting from Illinois. We so look forward to them coming and visiting us, and this year we were very thrilled that Camryn is home and able to visit with them. Grandpa & Grandma Blake are probably two of Camryn's biggest supporters, they keep a countdown calendar of what day she is at and call Jason's mom weekly for their update. Camryn loved visiting with them so much she even at one point told me to go into the other room so she could be with G&G by herself. She chatted, played and just enjoyed their company. Wyatt had fun too, although Wy really didn't remember them too well it didn't take long for him to warm up. In no time Wyatt was on the floor with Grandpa building a train track and playing trains...and then he was helping Grandpa sweep the back patio. What a lovely day we had enjoying family.
Sunday was a lazy day of just hanging out...nothing much to do as we just tried to stay indoors and keep cool. In the evening we went outside for a little evening fun...summer evenings are my favorite, it was a beautiful night.
All in all we've had a nice weekend and hopeful for a nice week. Tomorrow Camryn and I will head to clinic for a level check and see our favorite doctors and nurses. Hoping her strong levels are continuing!
***********
On another note I'd like to share a prayer request with you for a little baby girl who in now fighting a leukemia relapse. We met this family through blog world, but I did get a wonderful opportunity to meet them face to face. Please pray for their little one as she undergoes an intense round of chemo to get her to remission and then transplant. Obviously they are very close to our hearts as they are walking a road no one ever should.
Thank you our faithful prayer friends, we appreciate the countless acts of love you have shown us. Thanks for your encouragement as we walk this road...
Here's looking forward to many more day +'s!
Saturday, July 11, 2009
all is well
Probably be taking a bit of a break from updates because we are staying at my parent's house as we have to have some plumbing work done on our house. Can't have lil miss around all that stuff.
My parent's don't have internet...so we'll be in a dead zone so to speak. But, all is well.
In fact I thought I would let you in on the positive news in light of the bad (plumbing) news yesterday. Camryn and I headed down to UCLA just for labs yesterday, all went well and last night we found out her results. Camryn's labs look great...her ANC is at 1000!!!! Yep, we were thrilled. Her hemoglobin and platelets are holding great, kidney and liver functions look great too. To quote the doctor, "She looks great on paper."
All is well...we're doing well. Hanging in there day by day!
My parent's don't have internet...so we'll be in a dead zone so to speak. But, all is well.
In fact I thought I would let you in on the positive news in light of the bad (plumbing) news yesterday. Camryn and I headed down to UCLA just for labs yesterday, all went well and last night we found out her results. Camryn's labs look great...her ANC is at 1000!!!! Yep, we were thrilled. Her hemoglobin and platelets are holding great, kidney and liver functions look great too. To quote the doctor, "She looks great on paper."
All is well...we're doing well. Hanging in there day by day!
Thursday, July 9, 2009
*sigh*
I started writing this post hours ago...and just couldn't seem to find the *right* words...
People in my life are hurting...and really there's not much I can do about it and it makes me hurt. In so many ways I wish I could run in and save the day, but I don't have a cape handy...and really deep down I know I can't.
My daughter hurts...sure her cancer hurts her...her shots hurt her, but there is a hurt that runs deeper. Camryn misses life. Tonight when we talked about what we were up to tomorrow her eyes filled with tears when I said we have to run down to the doctors "real quick". Yeah, there is no "real quick" in Cam's vocabulary. She cried...she doesn't want to go. But, she will and she will continue to; because that's what Camryn does. She's tired of life being dictated by medical issues...she wants to run and play. She wants to go to Grandma's house and see her cousins without having to work out the details...she wants normal back.
Friends hurt...too many people who I know are having to battle through things that quite frankly they shouldn't have too. They have been dealt hands that just leave me hurting for them...and I wish I could do more than I can.
So I sighed deeply tonight...sometimes it just feels heavy, because it is.
As I sit here...I find myself finding comfort in the familiar. In the things I know to be true...
That the Lord is the same today as He was yesterday and He will be tomorrow. He wins...even in this broken world...He wins. He holds us, He carries us and He is all that we need Him to be.
But sometimes it's not always that simple...because life gets messy and people hurt.
And because it's not simple...Jesus came into the muck and mire of this world to give us hope for more than this.
As the Switchfoot lyrics say...
People in my life are hurting...and really there's not much I can do about it and it makes me hurt. In so many ways I wish I could run in and save the day, but I don't have a cape handy...and really deep down I know I can't.
My daughter hurts...sure her cancer hurts her...her shots hurt her, but there is a hurt that runs deeper. Camryn misses life. Tonight when we talked about what we were up to tomorrow her eyes filled with tears when I said we have to run down to the doctors "real quick". Yeah, there is no "real quick" in Cam's vocabulary. She cried...she doesn't want to go. But, she will and she will continue to; because that's what Camryn does. She's tired of life being dictated by medical issues...she wants to run and play. She wants to go to Grandma's house and see her cousins without having to work out the details...she wants normal back.
Friends hurt...too many people who I know are having to battle through things that quite frankly they shouldn't have too. They have been dealt hands that just leave me hurting for them...and I wish I could do more than I can.
So I sighed deeply tonight...sometimes it just feels heavy, because it is.
As I sit here...I find myself finding comfort in the familiar. In the things I know to be true...
That the Lord is the same today as He was yesterday and He will be tomorrow. He wins...even in this broken world...He wins. He holds us, He carries us and He is all that we need Him to be.
But sometimes it's not always that simple...because life gets messy and people hurt.
And because it's not simple...Jesus came into the muck and mire of this world to give us hope for more than this.
As the Switchfoot lyrics say...
We were meant to live for so much more
Tuesday, July 7, 2009
losses and gains
Tuesdays...
Jason and I had decided for the summer to take turns taking Camryn to clinic so that one of us can stay home and enjoy time with Wyatt...plus, it's just a nice break to change it up a bit.
Jason and Camryn headed out to clinic early this morning...we had thought this would be a longer day as to our knowledge Camryn was scheduled to have IVIG (immunoglobulins...antibodies) and that takes a few hours. After talking with Dr.M we found out that Camryn is not going to be getting IVIG and the reason she had been getting IVIG was due to a slight cold she had going into transplant and after. So that was welcomed news as it would be a quick clinic visit *hopefully*. Dr.M is very pleased with Camryn's progress and is hopeful she'll continue. Camryn's labs were not back yet and if she needed blood or platelets that would mean a transfusion. Jason and Camryn waited a bit and when her labs came back they looked...fabulous!
Camryn's white count is up to 1.62 and her ANC is at 600...hemoglobin at 9.5...platelets at 80,000. All great numbers for a transplant patient at day +32. Jason and Cam ran over to the pharmacy to pick up her Lovenox and then some other supplies. All in all it was a great trip.
While Jason was with Camryn, Wyatt and I headed out bright and early for a couple errands and then home to spend the morning with Auntie Dede. Wy and I enjoyed our time chatting very much...and as an added bonus Camryn got home in time to see Dede too and boy was she excited. Cam chatted with Dede on the couch and got as close as she possibly could...it was darling! So thankful Dede and Robby visited, but we sure missed Riley...can't wait until Camryn's cleared to enjoy time with her cousins as she misses them.
The rest of the day was pretty low key...Dr.A called to report on Camryn's cyclosporin level and they dropped her dose. And asked if it was possible for us to bring Camryn in on Friday *just* for labs...of course...we are to the point when we follow doctors request/orders. Then Dr.M called and dropped Camryn's dose even more as they want Camryn's level to be within theraputic range and currently it is too high. Not a huge problem, but too much can be hard on the kidneys and doesn't allow for any GVH. Well, we want her kidneys to stay healthy and we want *some* GVH so a lower dose is great with us.
Pretty much things are going well...
Medically speaking Camryn's doing well and at the heart of things we couldn't ask for more, but isolation is hard. There really is no way to sugar coat it, it's rough having your life change so drastically and having things just not be the same. And you know I'm not sure we want the sameness back. Or rather if we just want to feel like we are moving on...past cancer.
But reality is that cancer moves with us...it doesn't have the spotlight, but it's there. The aftermath is there. We live very simple lives now...and really that's proably a good thing. We are more sensitive to the world around us...we want to help, we need to help, we desire to do something with life. Isolation is hard...so many relationships take a beating throughout isolation. You find that the circles you once moved in are much smaller than before. You find that you have much more in common with people in your cancer world...or even your broken world than you once did. You find yourself wondering what will be when you return? Will it be the same? And yet you know...it won't. Because you've done this before.
So instead of focusing on the isolation and the losses...you try with all your might to focus on the gains. And really it's as simple as life. We've gained life...each day given is a gift and we cherish it. Things aren't always neat and tidy and that's okay. Our relationship with the Lord ebbs and flows and that's okay. The Lord is shaping, molding, changing us into the people He longs for us to be. He is our gain...We are gaining more of Him.
And gaining more takes time...we find that in our relationship we are learning more and more of Him. He is God so there is lots to be learned...He is big and we are small...He is crazy about us and we are learning to be crazy about Him. To live life full...full of Him. And some days are easier than others.
It's just that way...
As I was watching Sportscenter last night with my husband, and if you know me well you know that it wasn't painful as Sportscenter is one of my favorite shows. I know...crazy. Anyways, Sportscenter is doing their yearly special on My Wish in partnership with the Make A Wish Foundation...well, it brought me to tears. They are do...but last night the young man was just amazing. And as I sat crying the narrator was telling the story and he said..."he lost one year of his life. a year never to be regained". How true...
We will never regain this year...there will be losses along the way, there already have been. But, the gains...at some point the gains have to outweigh...
If they don't it would drown you...overwhelm you...and cause you to throw in the towel...
But getting to that point takes time...
Jason and I had decided for the summer to take turns taking Camryn to clinic so that one of us can stay home and enjoy time with Wyatt...plus, it's just a nice break to change it up a bit.
Jason and Camryn headed out to clinic early this morning...we had thought this would be a longer day as to our knowledge Camryn was scheduled to have IVIG (immunoglobulins...antibodies) and that takes a few hours. After talking with Dr.M we found out that Camryn is not going to be getting IVIG and the reason she had been getting IVIG was due to a slight cold she had going into transplant and after. So that was welcomed news as it would be a quick clinic visit *hopefully*. Dr.M is very pleased with Camryn's progress and is hopeful she'll continue. Camryn's labs were not back yet and if she needed blood or platelets that would mean a transfusion. Jason and Camryn waited a bit and when her labs came back they looked...fabulous!
Camryn's white count is up to 1.62 and her ANC is at 600...hemoglobin at 9.5...platelets at 80,000. All great numbers for a transplant patient at day +32. Jason and Cam ran over to the pharmacy to pick up her Lovenox and then some other supplies. All in all it was a great trip.
While Jason was with Camryn, Wyatt and I headed out bright and early for a couple errands and then home to spend the morning with Auntie Dede. Wy and I enjoyed our time chatting very much...and as an added bonus Camryn got home in time to see Dede too and boy was she excited. Cam chatted with Dede on the couch and got as close as she possibly could...it was darling! So thankful Dede and Robby visited, but we sure missed Riley...can't wait until Camryn's cleared to enjoy time with her cousins as she misses them.
The rest of the day was pretty low key...Dr.A called to report on Camryn's cyclosporin level and they dropped her dose. And asked if it was possible for us to bring Camryn in on Friday *just* for labs...of course...we are to the point when we follow doctors request/orders. Then Dr.M called and dropped Camryn's dose even more as they want Camryn's level to be within theraputic range and currently it is too high. Not a huge problem, but too much can be hard on the kidneys and doesn't allow for any GVH. Well, we want her kidneys to stay healthy and we want *some* GVH so a lower dose is great with us.
Pretty much things are going well...
Medically speaking Camryn's doing well and at the heart of things we couldn't ask for more, but isolation is hard. There really is no way to sugar coat it, it's rough having your life change so drastically and having things just not be the same. And you know I'm not sure we want the sameness back. Or rather if we just want to feel like we are moving on...past cancer.
But reality is that cancer moves with us...it doesn't have the spotlight, but it's there. The aftermath is there. We live very simple lives now...and really that's proably a good thing. We are more sensitive to the world around us...we want to help, we need to help, we desire to do something with life. Isolation is hard...so many relationships take a beating throughout isolation. You find that the circles you once moved in are much smaller than before. You find that you have much more in common with people in your cancer world...or even your broken world than you once did. You find yourself wondering what will be when you return? Will it be the same? And yet you know...it won't. Because you've done this before.
So instead of focusing on the isolation and the losses...you try with all your might to focus on the gains. And really it's as simple as life. We've gained life...each day given is a gift and we cherish it. Things aren't always neat and tidy and that's okay. Our relationship with the Lord ebbs and flows and that's okay. The Lord is shaping, molding, changing us into the people He longs for us to be. He is our gain...We are gaining more of Him.
And gaining more takes time...we find that in our relationship we are learning more and more of Him. He is God so there is lots to be learned...He is big and we are small...He is crazy about us and we are learning to be crazy about Him. To live life full...full of Him. And some days are easier than others.
It's just that way...
As I was watching Sportscenter last night with my husband, and if you know me well you know that it wasn't painful as Sportscenter is one of my favorite shows. I know...crazy. Anyways, Sportscenter is doing their yearly special on My Wish in partnership with the Make A Wish Foundation...well, it brought me to tears. They are do...but last night the young man was just amazing. And as I sat crying the narrator was telling the story and he said..."he lost one year of his life. a year never to be regained". How true...
We will never regain this year...there will be losses along the way, there already have been. But, the gains...at some point the gains have to outweigh...
If they don't it would drown you...overwhelm you...and cause you to throw in the towel...
But getting to that point takes time...
So we do not lose heart. Even though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight momentary affliction is preparing us for an eternal weight of glory beyond all measure, because we look not at what can be seen but at what cannot be seen; for what can be seen is temporary, but what cannot be seen is eternal. ~ 2 Cor. 16 - 18
Monday, July 6, 2009
day +31...one week home
How sweet it is, one week home...really it doesn't get any better. After five weeks in...how sweet it is.
Our week has been wonderful...Camryn has been doing really well taking her meds, shots and the other odds and ends. She really is surprising us with her appetite, she's eating a lot! It's wonderful. Camryn is sleeping well too...she's comfortable and her body is resting. Tomorrow is clinic so we'll see how her levels are doing...but, from the outside she's looking really good to me.
Wyatt continues to do well with potty training, he really is amazing us with how well he's doing. He is telling us when he has to go and he is excited to accomplish going potty. Oh he is a crack up with his commentary on the going ons, but it's so Wyatt...he's hilarious.
We are doing odds and ends around the house, cleaning out closets, organizing...making good use of our "isolation". I won't lie it is hard to live in isolation...but, it's a small price to pay. If this is what it takes for Camryn to recover and live then so be it. It is hard, but not nearly as hard as the battle waged in Cam's body. So we'll be thankful...grateful for what is given, another day.
Here's a few pics of our week home...
Painting birdhouses...such fun! We had a lot of fun, Camryn and Wyatt love to paint. Camryn lasted a bit longer than Wyatt...but now we have beautiful birdhouses on our front porch!
4th of July fireworks...fun times hanging out in Daddy's truck! Seriously, this was so much fun...Camryn and Wyatt had a blast! We were very thankful to be able to enjoy a little holiday fun, even in isolation.
Baking Cookies...fun times. Guess we should tell Wy the frosting goes on the cookies not in his mouth! Can you tell Cam had fun? Yep, another fun day!
Hopeful for another great week...home.
Our week has been wonderful...Camryn has been doing really well taking her meds, shots and the other odds and ends. She really is surprising us with her appetite, she's eating a lot! It's wonderful. Camryn is sleeping well too...she's comfortable and her body is resting. Tomorrow is clinic so we'll see how her levels are doing...but, from the outside she's looking really good to me.
Wyatt continues to do well with potty training, he really is amazing us with how well he's doing. He is telling us when he has to go and he is excited to accomplish going potty. Oh he is a crack up with his commentary on the going ons, but it's so Wyatt...he's hilarious.
We are doing odds and ends around the house, cleaning out closets, organizing...making good use of our "isolation". I won't lie it is hard to live in isolation...but, it's a small price to pay. If this is what it takes for Camryn to recover and live then so be it. It is hard, but not nearly as hard as the battle waged in Cam's body. So we'll be thankful...grateful for what is given, another day.
Here's a few pics of our week home...
Painting birdhouses...such fun! We had a lot of fun, Camryn and Wyatt love to paint. Camryn lasted a bit longer than Wyatt...but now we have beautiful birdhouses on our front porch!
4th of July fireworks...fun times hanging out in Daddy's truck! Seriously, this was so much fun...Camryn and Wyatt had a blast! We were very thankful to be able to enjoy a little holiday fun, even in isolation.
Baking Cookies...fun times. Guess we should tell Wy the frosting goes on the cookies not in his mouth! Can you tell Cam had fun? Yep, another fun day!
Hopeful for another great week...home.
Sunday, July 5, 2009
cold turkey
So today we took the plunge...
Potty training Wyatt.
We had thought we'd work on potty training this summer sometime...and today we woke up and just took the plunge.
Wyatt will be three in September and he talks about going potty and showed some interest, but with our crazy life the past few months we haven't been able to be consistent. Now with being home this summer we've got time to be consistent.
And today he did really well...by the end of the day he was coming to get me to take him potty. We'll see how the next few days go...but we're doing well today.
So it's cold turkey...no more diapers today...
We'll see how it goes tomorrow.
Potty training Wyatt.
We had thought we'd work on potty training this summer sometime...and today we woke up and just took the plunge.
Wyatt will be three in September and he talks about going potty and showed some interest, but with our crazy life the past few months we haven't been able to be consistent. Now with being home this summer we've got time to be consistent.
And today he did really well...by the end of the day he was coming to get me to take him potty. We'll see how the next few days go...but we're doing well today.
So it's cold turkey...no more diapers today...
We'll see how it goes tomorrow.
Saturday, July 4, 2009
4th of July...
Freedom has its life in the hearts, the actions, the spirit of men and so it must be daily earned and refreshed - else like a flower cut from its life-giving roots, it will wither and die. ~Dwight D. Eisenhower
Happy 4th of July...Happy Independence Day!
Hope you and yours enjoyed the traditions, festivities and all that makes this holiday feel like the official start of summer. The pool parties, the BBQs, the parks, the fireworks...yes all of it, hope you had a marvelous day!
This year our 4th of July was a little different than years past...we spent today home hanging out. I must admit it didn't feel like a traditional 4th of July, but it was good. Because when I stopped to consider the alternative, hospital life...I was just thankful we were home. Sure we didn't hit the pool, we didn't spend it with our friends...but we are thankful to be home to just enjoy the day.
My parents came over to watch the Dodger game and enjoy some dinner, it was a nice time although the Dodgers didn't win. Hopefully tomorrow! After naps and once evening was coming we did our nightly routines early to go watch some fireworks. We were trying to figure out where to go since Camryn can't be around large crowds...so thanks to a tip from my friend C we headed over to a local spot to watch some fireworks. We decided to take our truck and sit in the bed wrapped up in blankets with pillows. We had the best time! (pics to come soon)
Honestly the kids were hilarious, just loving the outing. And you know it wasn't what the 4th of July has always been, but it was perfect...couldn't ask for more.
Because as we sat in the bed of the truck oowwing and aawwing over the fireworks I looked at a little girl who absolutely was loving every second of life. And you know that's all that matters...
I am very thankful for the 4th of July...yes, I get very nostalgic this time of year considering the sacrifices many have made to give me the freedoms I have. The history teacher in me comes out as I ponder freedom...
Hope you each have a wonderful holiday weekend!
Thursday, July 2, 2009
four weeks ago...
Was probably one of the toughest yet joyous days of our life...
I am finding it hard to believe that Camryn's transplant was four weeks ago, I honestly did not in a million years think we'd be home at this point. But I am so very thankful we are...very thankful.
Our little donor Wyatt is doing well...you'd never know that he went through the surgery he did four weeks ago. He seems to be back on track in every way...he did a great job during the four weeks taking his iron to replenish this blood. And now he is done...nothing remaining from his day of donating. Well, except for the two little scars on his hip bones...yes, he'll always carry those.
Wyatt is loving having his big sis, best friend home...he has missed her so. He doesn't quite understand why Camryn can't do certain things...why she can't eat tomatoes on her tacos...why they can't take a bath together...why Camryn can't go to Target. But in spite of that he is just adoring her...loving her with so much love it's amazing. Every morning when he wakes up he anxiously awaits to see Camryn, it's almost as if he doesn't quite believe she is really here.
Tonight Camryn & Wyatt went on an adventure to Minnesota. Jason and I just laughed at Minnesota?! Really, didn't know that it was a prime location for adventures, but listening to them in Wyatt's Thomas tent just giggling and chatting was too cute. Yes, the dynamic duo are fully enjoying their time together.
And I am savoring it...
While Camryn is too. She said to me that it felt good to be home...almost like a dream. Tonight I asked her what the best part of the week was so far? And going home topped the list. She is enjoying just being...although it's hard to escape realities when the meds have to be taken, mouth care done, and shot given...but she does it. And quite frankly she does it about as well as any five year old would.
Four weeks ago Camryn was given another chance...another "birth"day if you will...and Wyatt gave.
Forever 6.4.09...a gift beyond compare.
I am finding it hard to believe that Camryn's transplant was four weeks ago, I honestly did not in a million years think we'd be home at this point. But I am so very thankful we are...very thankful.
Our little donor Wyatt is doing well...you'd never know that he went through the surgery he did four weeks ago. He seems to be back on track in every way...he did a great job during the four weeks taking his iron to replenish this blood. And now he is done...nothing remaining from his day of donating. Well, except for the two little scars on his hip bones...yes, he'll always carry those.
Wyatt is loving having his big sis, best friend home...he has missed her so. He doesn't quite understand why Camryn can't do certain things...why she can't eat tomatoes on her tacos...why they can't take a bath together...why Camryn can't go to Target. But in spite of that he is just adoring her...loving her with so much love it's amazing. Every morning when he wakes up he anxiously awaits to see Camryn, it's almost as if he doesn't quite believe she is really here.
Tonight Camryn & Wyatt went on an adventure to Minnesota. Jason and I just laughed at Minnesota?! Really, didn't know that it was a prime location for adventures, but listening to them in Wyatt's Thomas tent just giggling and chatting was too cute. Yes, the dynamic duo are fully enjoying their time together.
And I am savoring it...
While Camryn is too. She said to me that it felt good to be home...almost like a dream. Tonight I asked her what the best part of the week was so far? And going home topped the list. She is enjoying just being...although it's hard to escape realities when the meds have to be taken, mouth care done, and shot given...but she does it. And quite frankly she does it about as well as any five year old would.
Four weeks ago Camryn was given another chance...another "birth"day if you will...and Wyatt gave.
Forever 6.4.09...a gift beyond compare.
Wednesday, July 1, 2009
july
My personal goal for coming home was July...I really didn't think it was all that realistic, but I'm the type of person who needs goals. I really like to have benchmarks, makes me feel like we are getting somewhere.
When Camryn was admitted on May 25th, I personally chose July...and I had hoped July 4th we'd be home to celebrate as a family.
Well, today is July 1st and we are home. Today we spend our first day home without having to go to clinic...Camryn was thrilled. My sister, niece and nephews came by to see Camryn and Wyatt and it was wonderful. Camryn and Wyatt completely enjoyed their day...playing games, hanging out, just being together.
I'll admit if feels a bit surreal to look at our calendar and see wide open days, days spent together. We are enjoying sleeping in and just lounging around...it's wonderful.
Simply...it's July and we are thankful! Two months of summer...together!
When Camryn was admitted on May 25th, I personally chose July...and I had hoped July 4th we'd be home to celebrate as a family.
Well, today is July 1st and we are home. Today we spend our first day home without having to go to clinic...Camryn was thrilled. My sister, niece and nephews came by to see Camryn and Wyatt and it was wonderful. Camryn and Wyatt completely enjoyed their day...playing games, hanging out, just being together.
I'll admit if feels a bit surreal to look at our calendar and see wide open days, days spent together. We are enjoying sleeping in and just lounging around...it's wonderful.
Simply...it's July and we are thankful! Two months of summer...together!
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