A mind of a five year old is a very powerful thing. This is what we have learned over the course of the past three days.
Let me catch you up...
On Friday morning Camryn really didn't eat much breakfast which was not surprising as now with her steroid lowered; her appetite is much smaller. I gave her her 8:00 medicine as she calls her cyclosporin and about 30 minutes later she threw up. I was frustrated with myself as hindsight I knew that she had not eaten enough. We tried to get her to eat a bit more but, that was not happening. The battle was on.
Over the course of Friday, Saturday and Sunday we had moments of no problem eating and meds to horrible moments of tears, throwing up and just refusal of taking meds altogether. Yes, it was a horrible three days. Both Jason and I were racking our brains to figure out if it was truly Camryn being sick with a stomch bug or her mind. I will admit there were moments when I could swear it was her mind...and then moments when it seemed to be that she was sick. Either way by Sunday night it had gotten to the point where she was going to miss meds and there was no making them up at this point.
We made the call...the dreaded call really.
Dr.A called us back. Jason talked with him about her personality, her demeanor, her fever or lack thereof...thankfully, we did not have to rush Camryn down to the ER and were able to make an appointment at clinic today. I cannot tell you how thankful I was when we could sleep in our own beds and go to clinic today. Dr.A said we needed labs and they wanted to take a look and make sure that maybe her GVH had not gotten any worse and maybe moved into her GI system.
Jason and Camryn headed down this morning and I won't lie I was incredibly nervous.
At this point I will admit that whenever Camryn hits one of these bumps the fears, worries and frustration reign supreme. It is hard for me to stay level headed, my mind goes to that place of absolute worst...relapse. That all of these little things is a sign of something much worse. I cried many tears, I admitted to Jason some of the greatest fears I have with Camryn...I screamed at my Lord wanting so desperately to understand *why*. Quite honestly I did not have a pretty three days...
At clinic today Dr.A and Berkley saw Camryn and it was determined that she was fine. Her labs looked good, she looked good...she did get some IV fluids for dehydration for throwing up. They hung out in our all too familiar procedure center with nurses we love so much. Dr.A determined to prescribe Camryn a nausea patch; she wore one in the hospital throughout radiation and chemo. It worked great then...so he was hopeful that maybe that would help her get over her fears and eat and take her meds again.
After they finished up at procedure they went to the pharmacy in the big hospital (as Camryn calls it) to pick up the patches. While waiting they ran into on of our most favorite doctors Dr.K (she has been with us since Feb of 2006) so she knows Camryn well. Dr.K asked Jason why there were there he explained what was going on with Camryn and true to Dr.K style she sat down, put her arm around Camryn and spoke to her so sweetly. Telling her that the patch worked sort of like magic to keep you from throwing up...she was awesome. Doctors like Dr.K are so unique and special, we thank the Lord for her.
Jason called me to let me know and my heart smiled, but the fears don't just leave. I got home and Camryn was a little better, still not a 100% herself. We got her to eat a little bit of lunch and take some meds...she did ok. A little later she took more meds and did well. Ate some dinner and took the 8:00 medicine and did super! She's much more herself...playing, laughing, singing; just being herself.
This journey is a very powerful thing...life has changed dramatically. In a heartbeat it seems things could change and it is hard to live in that all the time. Never quite trusting the ground you are walking on, fearing the bottom falling out. I know I should live in the realities of the Lord's plan and I am. But some days He and I have heavy conversations of reality...of being real. Because this is real...
We are parents to a little girl that has a much longer list of issues than most and I know we are not alone. I know that the Lord is carrying us through...but that doesn't always mean it is pretty and neatly tied up in a bow. It gets messy, it gets ugly and yet it gets beautiful because of Him.
I read a quote yesterday that said something to the effect that "God is in the mix with us." And He is. He knows that struggles of my heart to make sense of all of this, to try to live in these realities that I find myself. To be a solid, steady place for Camryn and Wyatt too. To be real with this...
Because cancer is a powerful thing...but Praise Be To Jesus that He has overcome! Maybe not here and right now, but when the story ends He wins and that is a powerful thing.
Even in the moments when defeat sets in.
Monday, November 30, 2009
Friday, November 27, 2009
many thanks...
The very fact that a man is thankful implies someone to be thankful to. ~ John Baillie
My friend in Tennessee posted that yesterday morning and I thought it was so great I borrowed it...
Thanksgiving seems to be something that we should be doing daily...moment by moment, expressing our thanks for the many things that the Lord has blessed our lives with. And maybe saying thank you for the many things that He has spared us from. But, it is amazing to have a day set aside to "thank" Him, to spend time with family, to celebrate, to be content and yes of course eat.
Yesterday we spent time with my parents at there house, my mom loves to cook and Thanksgiving meals are some of her finest. Now I will admit (and I get much grief for this) I do not like turkey, therefore, the food of thanksgiving has never been the draw for me. When I was younger it was time spent with my family, cousins, aunts and uncles, grandparents...yes, that was what Thanksgiving meant to me. And you know...I am beginning to see in my children a love for the holiday for the very reasons I love it and that is just so cool.
In the afternoon we headed out to Jason's sister's house to celebrate with the Mikels side. Boy did the kids enjoy it. They loved seeing their cousins so much...honestly I think we spent a majority of our evening just watching the kids enjoy one another. They Mikels kids are quite a bunch and really I am so thankful that Camryn and Wyatt have the cousins they do. What an amazing blessing it is to watch them grow up with their cousins local, amazing friendships they will share.
Now, it is the day after Thanksgiving and we are enjoying ourselves. The Christmas tree is up thanks to Camryn's prodding and Wyatt was right there with her prodding us on. The house now is very festive and it's fun. More and more watching the kids enjoy the holidays I realize what a gift they are...
I think to sum it up the best I will quote Camryn's "turkey of thanks"...
* My mom and dad
* My little brother
* My teacher
* Food
* My papas and grandmas
* Jesus for making me better
Doesn't get much better than that, does it?
My friend in Tennessee posted that yesterday morning and I thought it was so great I borrowed it...
Thanksgiving seems to be something that we should be doing daily...moment by moment, expressing our thanks for the many things that the Lord has blessed our lives with. And maybe saying thank you for the many things that He has spared us from. But, it is amazing to have a day set aside to "thank" Him, to spend time with family, to celebrate, to be content and yes of course eat.
Yesterday we spent time with my parents at there house, my mom loves to cook and Thanksgiving meals are some of her finest. Now I will admit (and I get much grief for this) I do not like turkey, therefore, the food of thanksgiving has never been the draw for me. When I was younger it was time spent with my family, cousins, aunts and uncles, grandparents...yes, that was what Thanksgiving meant to me. And you know...I am beginning to see in my children a love for the holiday for the very reasons I love it and that is just so cool.
In the afternoon we headed out to Jason's sister's house to celebrate with the Mikels side. Boy did the kids enjoy it. They loved seeing their cousins so much...honestly I think we spent a majority of our evening just watching the kids enjoy one another. They Mikels kids are quite a bunch and really I am so thankful that Camryn and Wyatt have the cousins they do. What an amazing blessing it is to watch them grow up with their cousins local, amazing friendships they will share.
Now, it is the day after Thanksgiving and we are enjoying ourselves. The Christmas tree is up thanks to Camryn's prodding and Wyatt was right there with her prodding us on. The house now is very festive and it's fun. More and more watching the kids enjoy the holidays I realize what a gift they are...
I think to sum it up the best I will quote Camryn's "turkey of thanks"...
* My mom and dad
* My little brother
* My teacher
* Food
* My papas and grandmas
* Jesus for making me better
Doesn't get much better than that, does it?
Tuesday, November 24, 2009
when the tears fall...
Honestly last week hit me like a load of bricks on Sunday...I've struggled to know exactly how to put my thoughts into words exactly, and I guess sometimes I feel that I've found it and other times that the words are escaping me. Either way a ton of bricks fell and little by little I am digging my way out.
I guess it comes with the territory, but being back in the all too familiar brings back a flood of memories that are just heavy for one's heart. I have heard that smell is a strong sensory emotion and I cannot deny that. Every time we find ourselves back on the Hemoc floor the mere smell of the soap for Camryn's baths can bring me to tears. I vividly remember bathing her during her first transplant her little body; two and a half years old. So little to have to be enduring all of this. And I can vividly remember bathing her at five years old, her hair starting to fall out and thinking she is too little to have to be enduring all of this...
You see anytime we walk the hallway, anytime we pull into the parking lot, anytime we drive over the hill; simply anytime we deal with Camryn's hospital life the memories flood in and my heart sometimes just is overwhelmed.
And even in the midst of the tears I have a hard time understanding...I really do not like all of this. I wish that when Camryn got a fever I could treat it like most parents do, give her some Tylenol and wait it out. I long for a time when Camryn was like most kids I know, when she did not have these realities to live with. Yes, Camryn lives within these realities well, quite honestly I wonder just how in the world she does it. I wonder if she is just blessed with a spirit that can understand things that even I don't. I wonder if maybe the Lord just walks her through life in ways that leave me speechless...
This morning was one of those moments...
Camryn headed to clinic and even though I knew she did not want to go; did not want to be down there again after all she was just there for three days last week...she went without a fight, without a fuss and did what she does best, walked through the moment with grace. Jason headed down with Camryn as I had already missed three days of work last week and we are trying out best to even out of days missed. As they left I just felt a bit of my heart ache that this is her life...and so badly I wish this wasn't so. I wish she did not have to *deal* with all she has too...seems so unfair to me.
A little while later my phone rang and it was Jason with Camryn chatting loudly in the background...her steroids were lowered again!!! She was so excited, plus she was passing along hellos to me from the nurses and doctors she saw today. Yep, she did great at clinic and got to see her *favorites and friends*. Dr.M was pleased to see Camryn and felt that she was doing very well, he was happy that she seems to have knocked the fever, but still has a little bug left over (a cough and a watery eye). Jason asked about going to the Hemoc Christmas Party next week and Dr.M said we could make a cameo appearance for a quick bit and then leave...so we will. We will be able to say hello to everyone and hopefully see a few friends and then head home early, which lately is the way it is.
Camryn is continually doing well...GVH rash is still there ever so slightly, but not spreading or getting worse. The GVH is welcomed, as Dr.K told Camryn today, "GVH is the key for curing the leukemia." And that is a hope we are clinging to ever so tightly.
The holiday season seems to bring tears more readily than others...maybe because last year at this time we were out in the world for the first time at Christmas and it felt so good to somewhat put leukemia behind us. And now a year later we are fully immersed in the leukemia world again...funny how things change so dramatically in a year or even a day around here.
Because the tears fall...
~ Newsboys
I almost wish that the tears would not come so often...and yet when they do they seem to provide some healing. The Lord is faithful and true even in the midst of the moments that I do not understand...
And I know there will continue to be moments throughout our journey when the only response is tears...and many times those tears are happy and thankful tears and sometimes they are confused, grasping and searching tears.
When the tears fall, I am thankful He is there to wipe them...
I guess it comes with the territory, but being back in the all too familiar brings back a flood of memories that are just heavy for one's heart. I have heard that smell is a strong sensory emotion and I cannot deny that. Every time we find ourselves back on the Hemoc floor the mere smell of the soap for Camryn's baths can bring me to tears. I vividly remember bathing her during her first transplant her little body; two and a half years old. So little to have to be enduring all of this. And I can vividly remember bathing her at five years old, her hair starting to fall out and thinking she is too little to have to be enduring all of this...
You see anytime we walk the hallway, anytime we pull into the parking lot, anytime we drive over the hill; simply anytime we deal with Camryn's hospital life the memories flood in and my heart sometimes just is overwhelmed.
And even in the midst of the tears I have a hard time understanding...I really do not like all of this. I wish that when Camryn got a fever I could treat it like most parents do, give her some Tylenol and wait it out. I long for a time when Camryn was like most kids I know, when she did not have these realities to live with. Yes, Camryn lives within these realities well, quite honestly I wonder just how in the world she does it. I wonder if she is just blessed with a spirit that can understand things that even I don't. I wonder if maybe the Lord just walks her through life in ways that leave me speechless...
This morning was one of those moments...
Camryn headed to clinic and even though I knew she did not want to go; did not want to be down there again after all she was just there for three days last week...she went without a fight, without a fuss and did what she does best, walked through the moment with grace. Jason headed down with Camryn as I had already missed three days of work last week and we are trying out best to even out of days missed. As they left I just felt a bit of my heart ache that this is her life...and so badly I wish this wasn't so. I wish she did not have to *deal* with all she has too...seems so unfair to me.
A little while later my phone rang and it was Jason with Camryn chatting loudly in the background...her steroids were lowered again!!! She was so excited, plus she was passing along hellos to me from the nurses and doctors she saw today. Yep, she did great at clinic and got to see her *favorites and friends*. Dr.M was pleased to see Camryn and felt that she was doing very well, he was happy that she seems to have knocked the fever, but still has a little bug left over (a cough and a watery eye). Jason asked about going to the Hemoc Christmas Party next week and Dr.M said we could make a cameo appearance for a quick bit and then leave...so we will. We will be able to say hello to everyone and hopefully see a few friends and then head home early, which lately is the way it is.
Camryn is continually doing well...GVH rash is still there ever so slightly, but not spreading or getting worse. The GVH is welcomed, as Dr.K told Camryn today, "GVH is the key for curing the leukemia." And that is a hope we are clinging to ever so tightly.
The holiday season seems to bring tears more readily than others...maybe because last year at this time we were out in the world for the first time at Christmas and it felt so good to somewhat put leukemia behind us. And now a year later we are fully immersed in the leukemia world again...funny how things change so dramatically in a year or even a day around here.
Because the tears fall...
I've had questions, without answers
I've known sorrow, I have known pain
but there's one thing, that I'll cling to
You are faithful, Jesus You're true
when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart
in the lone hour of my sorrow
through the darkest night of my soul
You surround me and sustain me
my defender, forevermore
when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart
and I will praise You, I will praise You
when the tears fall, still I will sing to You
and I will praise You, Jesus praise You
through the suffering still I will sing
when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart
oh yes, You are good to me
You've always been good to me
so trustworthy
when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart
and I will praise You, and I will praise You
when the tears fall, still I will sing to You
(I will sing to You) I will praise You,
Jesus praise You through the suffering
still I will sing
how faithful and true
sustain me through and through
You are hope and truth
You're my spring of living water
You're my spring of living water
in the lone hour of my sorrow
who springs never fail
be faithful and true
like...
like a spring it never fails
you're my spring never fails
~ Newsboys
I almost wish that the tears would not come so often...and yet when they do they seem to provide some healing. The Lord is faithful and true even in the midst of the moments that I do not understand...
And I know there will continue to be moments throughout our journey when the only response is tears...and many times those tears are happy and thankful tears and sometimes they are confused, grasping and searching tears.
When the tears fall, I am thankful He is there to wipe them...
Sunday, November 22, 2009
weekend happenings...
After spending three days at the hospital this week we were looking forward to our weekend together...the little blessings really mean the most. And being home together is quite possibly one of the greatest blessings. We are thankful to have us all home...none more than Wyatt I think. Poor little guy really had a hard time the days that Camryn and I were gone; breaks my heart that these are his realities too. Thankful that there were lots of hours spend playing this weekend...lots of smiles and lots of hugs.
Saturday was spent with Jason and I running to the grocery store while the kids hung out with my parents...Camryn had missed going to Grandma's house so it was nice to for them to spend some time there. Jason and I enjoyed our few moments shopping, it was nice to catch up after our three day whirlwind of hospital life. We chatted, laughed and talked through some holiday thoughts. The afternoon was spent watching college football and just hanging out...whew, what a much needed breather. It was a wonderful Saturday...so thankful!
Sunday...I must admit that Sundays are very hard days for me lately, I think it just makes the realities of isolated life that much more pronounced. Throughout the week isolated life is there, but it doesn't seem to be so glaring, but Sundays; well, there is no escaping it. I really miss our Sunday life...church, friends, social outings and such, I miss that. So lately Sundays have been hard; but I know it's bound to happen...especially after three days of being thrown back into the hospital world.
But today we cleaned the house...and now I'm enjoying it immensely! We also wanted to get things cleaned in preparation for Christmas decorating soon. As you might know we have Little Miss Holiday Spirit in our home so as soon as Thanksgiving is over...she's ready to bust out Christmas! So that's on the list for Friday and Saturday...
Hope you all had a wonderful weekend...and enjoy your Thanksgiving week!
Saturday was spent with Jason and I running to the grocery store while the kids hung out with my parents...Camryn had missed going to Grandma's house so it was nice to for them to spend some time there. Jason and I enjoyed our few moments shopping, it was nice to catch up after our three day whirlwind of hospital life. We chatted, laughed and talked through some holiday thoughts. The afternoon was spent watching college football and just hanging out...whew, what a much needed breather. It was a wonderful Saturday...so thankful!
Sunday...I must admit that Sundays are very hard days for me lately, I think it just makes the realities of isolated life that much more pronounced. Throughout the week isolated life is there, but it doesn't seem to be so glaring, but Sundays; well, there is no escaping it. I really miss our Sunday life...church, friends, social outings and such, I miss that. So lately Sundays have been hard; but I know it's bound to happen...especially after three days of being thrown back into the hospital world.
But today we cleaned the house...and now I'm enjoying it immensely! We also wanted to get things cleaned in preparation for Christmas decorating soon. As you might know we have Little Miss Holiday Spirit in our home so as soon as Thanksgiving is over...she's ready to bust out Christmas! So that's on the list for Friday and Saturday...
Hope you all had a wonderful weekend...and enjoy your Thanksgiving week!
Friday, November 20, 2009
home...
How sweet it is to be posting this from the comforts of our home. Camryn got her release orders today so home sweet home it is for us hopefully for long time!
The doctors came in this morning with news that so far Camryn's cultures were still negative. They would call that lab at 10:00am to confirm negative results as that would mark 48hours...so we waited. Luckily Camryn slept in until 9:30; because once she heard the possibility of 10:00 she was impatient as can be. As we waited it became clear that the doctors would discharge us if the cultures had remained negative...and as of 7:00 they were negative and it was hard to think that in 3 hours something would show up, but stranger things have happened.
As Camryn and I waited she played on the laptop and I read watching the clock move ever so slowly...finally Dr.C came in and announced, "going home!". Camryn got the biggest grin on her face, she was thrilled. I quickly called my dad to come get us, as keeping a car at UCLA at the rate of parking just seems a bit insane. After I made the call I started packing up the few things we had there. Camryn's nurse came in with discharge papers and I signed off, thankfully we did not have to wait for meds and such because Camryn has a full round of prescriptions at home. Her nurse was great helping us gather any supplies we needed for line changes and such...it was great.
My dad made great time and at 12:15 my phone rang and he was waiting for us. We said our good-byes and walked down an all too familiar hallway to the door that leads to the outside world. Camryn was thrilled to be *out* and when she saw my dad she was just happy as can be.
Home...
Camryn and Wyatt have been going strong all afternoon and quite honestly you would never know that she just spent 2 days in the hospital. Even at this moment they are playing hard and going strong! Boy do they miss each other and make up for the days apart a 100%.
We are thankful to be home...so incredibly thankful! So thankful that it seems that it was only a common cold and nothing more serious than that. We know that any fever will lead us back there, so we are praying that no more fevers are in our future for awhile.
Camryn did great throughout it all, but truly she knows better than most that there truly is no place like home.
The doctors came in this morning with news that so far Camryn's cultures were still negative. They would call that lab at 10:00am to confirm negative results as that would mark 48hours...so we waited. Luckily Camryn slept in until 9:30; because once she heard the possibility of 10:00 she was impatient as can be. As we waited it became clear that the doctors would discharge us if the cultures had remained negative...and as of 7:00 they were negative and it was hard to think that in 3 hours something would show up, but stranger things have happened.
As Camryn and I waited she played on the laptop and I read watching the clock move ever so slowly...finally Dr.C came in and announced, "going home!". Camryn got the biggest grin on her face, she was thrilled. I quickly called my dad to come get us, as keeping a car at UCLA at the rate of parking just seems a bit insane. After I made the call I started packing up the few things we had there. Camryn's nurse came in with discharge papers and I signed off, thankfully we did not have to wait for meds and such because Camryn has a full round of prescriptions at home. Her nurse was great helping us gather any supplies we needed for line changes and such...it was great.
My dad made great time and at 12:15 my phone rang and he was waiting for us. We said our good-byes and walked down an all too familiar hallway to the door that leads to the outside world. Camryn was thrilled to be *out* and when she saw my dad she was just happy as can be.
Home...
Camryn and Wyatt have been going strong all afternoon and quite honestly you would never know that she just spent 2 days in the hospital. Even at this moment they are playing hard and going strong! Boy do they miss each other and make up for the days apart a 100%.
We are thankful to be home...so incredibly thankful! So thankful that it seems that it was only a common cold and nothing more serious than that. We know that any fever will lead us back there, so we are praying that no more fevers are in our future for awhile.
Camryn did great throughout it all, but truly she knows better than most that there truly is no place like home.
Thursday, November 19, 2009
realizing this is what it is...
Today has been a good day for Camryn, she's been her normal self and it has been so great. She is enjoying being amongst friends, yes her doctors and nurses are her friends...she hates being away from home, but she does enjoy seeing her familiar friends again. I won't lie, I do too.
A weird thing happens when you spend over 3 years with people who care deeply and take such sweet care of your little girl...they become a community to which you owe much. I do not like living hospital life, but I do like what hospital life has given me...it's a weird balance, a weird reality.
Camryn's cultures continue to be negative, yay! Her nasal wash also came back negative on all the respiratory tests: seasonal flu, swine flu and RSV...so thankful. She is doing well with the IV antibiotics and as the nurses say Camryn is on the "big guns"...the broad sweeping, powerful drugs to knock out anything and everything Camryn could possibly have. As of right now Camryn has been fever free since yesterday morning at 10am...so almost 36 hours, only 12 more to go and we'll hit 48 the magic number.
Tomorrow we should hear the official word to get discharged...hopefully! Thank you for your thoughts and prayers...we are so thankful for them.
Throughout this hospital stay I've noticed something about myself...settling on that this is what it is. As much as I want to have this not be our life, it is. As much as I would love to never be here again, I cannot escape that this could be a very real possibility. As I was talking to Dr.A today he mentioned that right now where Camryn is at and her being a relapsed transplant patient they are going to be extra cautious and careful...and I get that, really I do.
There is much peace found when you realize that this is what it is...the Lord will meet us here no matter what. He is here...always. I know I can fight this with everything I have, but really what is the point. Our lives are different than most, but there is a comfort to be found on a lone hallway at UCLA...a group of doctors, nurses, parents and kids who fight what it is with everything they've got.
Yes, these are the true heroes...and what it is, is a precious one sleeping in her bed tonight.
Love you Camryn Lee...so proud of you.
A weird thing happens when you spend over 3 years with people who care deeply and take such sweet care of your little girl...they become a community to which you owe much. I do not like living hospital life, but I do like what hospital life has given me...it's a weird balance, a weird reality.
Camryn's cultures continue to be negative, yay! Her nasal wash also came back negative on all the respiratory tests: seasonal flu, swine flu and RSV...so thankful. She is doing well with the IV antibiotics and as the nurses say Camryn is on the "big guns"...the broad sweeping, powerful drugs to knock out anything and everything Camryn could possibly have. As of right now Camryn has been fever free since yesterday morning at 10am...so almost 36 hours, only 12 more to go and we'll hit 48 the magic number.
Tomorrow we should hear the official word to get discharged...hopefully! Thank you for your thoughts and prayers...we are so thankful for them.
Throughout this hospital stay I've noticed something about myself...settling on that this is what it is. As much as I want to have this not be our life, it is. As much as I would love to never be here again, I cannot escape that this could be a very real possibility. As I was talking to Dr.A today he mentioned that right now where Camryn is at and her being a relapsed transplant patient they are going to be extra cautious and careful...and I get that, really I do.
There is much peace found when you realize that this is what it is...the Lord will meet us here no matter what. He is here...always. I know I can fight this with everything I have, but really what is the point. Our lives are different than most, but there is a comfort to be found on a lone hallway at UCLA...a group of doctors, nurses, parents and kids who fight what it is with everything they've got.
Yes, these are the true heroes...and what it is, is a precious one sleeping in her bed tonight.
Love you Camryn Lee...so proud of you.
mercies are new...
A new day is upon us and thankfully Camryn had a fever free night. Praising the Lord! She slept super well and got some much needed rest...thankfully she does not have too many interruptions throughout the night.
Right now we are just hanging out, the doctors should be rounding soon and we will get an update on the cultures and such. Right now Camryn is doing well, no fevers so that is a huge blessing...she does have a little cough and a little runny nose, but otherwise she's doing well.
In a few minutes we'll do her bath and get some clean clothes and wait for Grandma Mikels to come...so thankful our parents are close and willing to come give Camryn some company, she enjoys it.
We are doing alright, I had a hard night just feeling like this is a cycle we will never escape and it's overwhelming at times. I really wish at some point a reprieve would come, but for now this is what our life is. Never too far out of the fray it seems...
But, as I opened the blinds today I was reminded that His mercies are new every morning...
And for today that is enough.
Right now we are just hanging out, the doctors should be rounding soon and we will get an update on the cultures and such. Right now Camryn is doing well, no fevers so that is a huge blessing...she does have a little cough and a little runny nose, but otherwise she's doing well.
In a few minutes we'll do her bath and get some clean clothes and wait for Grandma Mikels to come...so thankful our parents are close and willing to come give Camryn some company, she enjoys it.
We are doing alright, I had a hard night just feeling like this is a cycle we will never escape and it's overwhelming at times. I really wish at some point a reprieve would come, but for now this is what our life is. Never too far out of the fray it seems...
But, as I opened the blinds today I was reminded that His mercies are new every morning...
And for today that is enough.
Wednesday, November 18, 2009
never too far away...
Today was one of those days when the realities of Camryn's life surface and there isn't much you can do about it. As I posted earlier Camryn woke up with a fever...101.5. Not too high; but high enough to warrant a call to the Peds Hemoc doctor on call. Jason and I both knew that with that call inevitably meant a trip down to UCLA. As we were driving down Dr.W called and said that Dr.A had said to go straight to the ER to be admitted...we had been hopeful that this visit would just be a clinic visit, but once we heard ER we knew...admitted.
So at 9:00am we arrived at the ER and thankfully it wasn't too crowded with lots of flu like symptoms...and because of Camryn's history they move and they move fast in the ER. We got a little room in the ER off in a corner, away from the general population. Our care in the ER was good, super nice nurses and we especially appreciated how quickly things were moving.
Of course once we got settled in it didn't take long for Camryn's team of doctors to find her...Dr.A, Berkley and Dr.E came in and it was so nice to see their faces and know that Camryn was on their radar. Blood cultures were taken, a chest x-ray, urine cultures...and the waiting begins. According to the doctors it takes 24 hours to get a preliminary reading off the cultures and 48 hours to get a more definite reading.
So we waited in the ER for a bed to open upstairs...at 6:00pm we headed upstairs and thankfully now we are settled in our room. A few familiar faces have stopped by to see Camryn and she has enjoyed that. I like that we are now with Camryn's team and I find a huge amount of comfort there.
Camryn has been fever free since 10am this morning and really she is doing super well...hanging in there. Hopefully 48 hours of antibiotics will do the trick and this will be a minor bump in the road.
All day today I just felt as if these realities are never too far away...there is no where we can run, hide or even go to escape them. They are...and it is so hard. In one moment our lives were thrown into our hospital routine...quickly making calls, submitting sub plans and all of those things. I guess there are times I feel like we are moving well in one direction and then here it comes...realities that are all too familiar.
Well, I better go...got a date to watch the new Tinkerbell movie with a really cute little girl who has endured more than most.
Please continue to pray...48 hours!
So at 9:00am we arrived at the ER and thankfully it wasn't too crowded with lots of flu like symptoms...and because of Camryn's history they move and they move fast in the ER. We got a little room in the ER off in a corner, away from the general population. Our care in the ER was good, super nice nurses and we especially appreciated how quickly things were moving.
Of course once we got settled in it didn't take long for Camryn's team of doctors to find her...Dr.A, Berkley and Dr.E came in and it was so nice to see their faces and know that Camryn was on their radar. Blood cultures were taken, a chest x-ray, urine cultures...and the waiting begins. According to the doctors it takes 24 hours to get a preliminary reading off the cultures and 48 hours to get a more definite reading.
So we waited in the ER for a bed to open upstairs...at 6:00pm we headed upstairs and thankfully now we are settled in our room. A few familiar faces have stopped by to see Camryn and she has enjoyed that. I like that we are now with Camryn's team and I find a huge amount of comfort there.
Camryn has been fever free since 10am this morning and really she is doing super well...hanging in there. Hopefully 48 hours of antibiotics will do the trick and this will be a minor bump in the road.
All day today I just felt as if these realities are never too far away...there is no where we can run, hide or even go to escape them. They are...and it is so hard. In one moment our lives were thrown into our hospital routine...quickly making calls, submitting sub plans and all of those things. I guess there are times I feel like we are moving well in one direction and then here it comes...realities that are all too familiar.
Well, I better go...got a date to watch the new Tinkerbell movie with a really cute little girl who has endured more than most.
Please continue to pray...48 hours!
fever...er...waiting
As I write we are hanging out in the ER with Camryn. At six o'clock this morning she woke up with a fever...which is no good. We called the doctors and headed down to UCLA.
Camryn is admitted, but we are waiting for a room upstairs...hopefully it won't be too long. Camryn is doing well, she is sleeping now while meds are running. We are so proud of her...she does so well I cannot believe it.
We will keep you posted...we are hoping after some IV meds she'll be lots better! And we'll be home soon.
Please pray for Camryn...and Wyatt too. He cried as we left this morning knowing all to well that Cam may have to stay.
Camryn is admitted, but we are waiting for a room upstairs...hopefully it won't be too long. Camryn is doing well, she is sleeping now while meds are running. We are so proud of her...she does so well I cannot believe it.
We will keep you posted...we are hoping after some IV meds she'll be lots better! And we'll be home soon.
Please pray for Camryn...and Wyatt too. He cried as we left this morning knowing all to well that Cam may have to stay.
Saturday, November 14, 2009
membership...
Last night I realized that we have a lifetime membership to a group we would have never chosen, but cannot imagine our lives without...childhood cancer.
Jason and I went on a date night last night to hear Dr.A's band play in Santa Monica. We had heard some of Dr.A's music while we were in the hospital, so it was quite fun to get the invite and go. Many thanks to T and Ali for watching the kids for us...we certainly appreciate it!
As people were beginning to arrive it became obvious that there was a common thread throughout the people being introduced by Dr.A...parents of children with cancer. We were all sitting together, chatting with each other, recognizing faces and also enjoying the company of some of the nurses too. Jason and I truly enjoyed our evening, but many thoughts ran through my head that to any one outside the *group* we all looked like a group of work friends or something like that. No one would ever guess that we are a unique group, some whose children are doing well and some whose little ones are enjoying the fullness of heaven. It was good to be there...good to realize that we as a family are not alone, yes no one in our immediate friendship circle has a child with cancer. But, there is a world of connection at UCLA that I am thankful for.
This was never a road we would have chosen to travel, none of the parents would ever choose this...but as I sat smiling and laughing with nurses who mean the world to me and listening to a doctor sing who has done more than most I was content. Yes, I would trade a lot to not be living this reality...I would love to go back in time to and erase the dreaded word leukemia and cancer from our lives. But that is not to be.
So, we are learning to live where we are and realize that we are not alone...there are many of us walking through our daily lives, believing and hoping for our children. And there are many who are learning to live without their children....my heart aches for them in ways that words cannot describe...today three years ago a beautiful young woman just a few doors down from Camryn lost her fight. And today my heart is heavy for her mom, her family and the lives she touched...I never officially had the pleasure of meeting her, but C touched my life in a way that I am forever grateful for and her mother too.
You see it is a group, a club and our membership is marked by tears, fears, joys, hopes and so much more...we wear no badges, or signs; but we are a larger group then most know. For it is now walking close to four years in this group that my heart is larger, caring more deeply and much more aware of a group of people and children fighting, believing and hoping.
And the membership lasts a lifetime...
Jason and I went on a date night last night to hear Dr.A's band play in Santa Monica. We had heard some of Dr.A's music while we were in the hospital, so it was quite fun to get the invite and go. Many thanks to T and Ali for watching the kids for us...we certainly appreciate it!
As people were beginning to arrive it became obvious that there was a common thread throughout the people being introduced by Dr.A...parents of children with cancer. We were all sitting together, chatting with each other, recognizing faces and also enjoying the company of some of the nurses too. Jason and I truly enjoyed our evening, but many thoughts ran through my head that to any one outside the *group* we all looked like a group of work friends or something like that. No one would ever guess that we are a unique group, some whose children are doing well and some whose little ones are enjoying the fullness of heaven. It was good to be there...good to realize that we as a family are not alone, yes no one in our immediate friendship circle has a child with cancer. But, there is a world of connection at UCLA that I am thankful for.
This was never a road we would have chosen to travel, none of the parents would ever choose this...but as I sat smiling and laughing with nurses who mean the world to me and listening to a doctor sing who has done more than most I was content. Yes, I would trade a lot to not be living this reality...I would love to go back in time to and erase the dreaded word leukemia and cancer from our lives. But that is not to be.
So, we are learning to live where we are and realize that we are not alone...there are many of us walking through our daily lives, believing and hoping for our children. And there are many who are learning to live without their children....my heart aches for them in ways that words cannot describe...today three years ago a beautiful young woman just a few doors down from Camryn lost her fight. And today my heart is heavy for her mom, her family and the lives she touched...I never officially had the pleasure of meeting her, but C touched my life in a way that I am forever grateful for and her mother too.
You see it is a group, a club and our membership is marked by tears, fears, joys, hopes and so much more...we wear no badges, or signs; but we are a larger group then most know. For it is now walking close to four years in this group that my heart is larger, caring more deeply and much more aware of a group of people and children fighting, believing and hoping.
And the membership lasts a lifetime...
Tuesday, November 10, 2009
by now...
You faithful blog readers know what Tuesdays are...and if you are really on top of things you know that today was Camryn's clinic appointment. :)
Yep, Camryn headed out bright and early with her Daddy this morning...honestly this girl is just the greatest, most amazing kid ever. Really, I think she is. She bounced out of bed, no tears, no fight...just I'm going to see the doctors today and when I get home then I have school and then I'm going to Grandma's house for dinner. Honestly, this girl is a planner through and through, wonder where she gets that? :)
As I said good-bye to Camryn and Jason again my heart just stops for a quick second. Ever heard that Kenny Chesney song "There goes my life?"...sometimes it's really as if I'm watching a little piece of heart drive away each time. As I turned around to head in the house there stood another part of my heart...my precious boy, Wyatt. Yes, over and over this morning as I prepared for my day I was thanking the Lord for these two blessings packaged in a really great, amazing, miraculous story. I feel a sense of awe and wonder when I think of my two kids...perhaps the most perfect, greatest gifts I have ever been given. And always I'm reminded that I hold them loosely, because they are the Lord's before they are ever mine.
I got to work and went about preparing for the day...I was a bit anxious because I was going to try an activity with my classes and I hoped they would participate well and it would work. But, more than that anxious to hear those words I long to hear every other Tuesday..."She's doing great!" As I was finishing up things in my classroom my phone rang and on the other end a darling little voice announcing..."No more steroids at night!" Can you believe it? At clinic Dr.A decided to discontinue her nightly dose of steroids and begin the wean of her morning dose. On Friday we lower her morning dose and then again next week and hopefully, fingers crossed Camryn will be completely steroid free soon. Most likely her doctors will keep her on a low every other day dose for a while just to keep the GVH in check. And you know I'm okay with that, because even throughout the weaning process so far we are seeing a slight decrease in the side-effects of the steroids.
Camryn's doctors continue to confirm that she is doing great, looks great and really is doing fabulous for being five months post-transplant. They are pleased that her GVH is under control and yet present. That her liver enzymes are well within control. That her body is responding well to cyclosporin. Overall, that Camryn is doing all the things she should be at this point...and doing them well. We got her labs this afternoon and again we are grateful for great numbers...honestly these labs are just such a boost for us. Her numbers are strong...and not really wavering which is fabulous! And to think Camryn has held these numbers without a transfusion post-transplant...Good Job Wyatt's marrow!
Once Camryn got home from clinic she had a quick lunch and then Ms. F came for school today. Camryn was super excited to have a doctors appointment and school all in one day...a busy little bee we have. I was lucky enough to make it home to observe and listen to Camryn and Ms. F interacting "doing" school as Camryn calls it. What a joy! Camryn absolutely loves school...she loves it! In fact the other day Jason and the kids dropped me off at Village for an open house and Camryn responded that she is in kindergarten, not kindergarten at Village; but sort of. And you know what? She didn't complain, or even comment that she wished it were different...she has settled into her normal, and it fits her and she is blossoming in ways that neither Jason or I expected!
Sometimes I really think that by now I should not be surprised by the variety of things that the Lord continues to bless our lives with...that by now I should be more confident, more assured, more...well, more content. I guess after this journey, a pro-longed one at that maybe I should have learned how to be all those things and more...and truth is I've grown a lot and yet there is so much more to learn and grow through...
By now...we have waited, and days we waited well and days we have waited poorly...and thankfully we are given grace to begin again and again.
Yep, Camryn headed out bright and early with her Daddy this morning...honestly this girl is just the greatest, most amazing kid ever. Really, I think she is. She bounced out of bed, no tears, no fight...just I'm going to see the doctors today and when I get home then I have school and then I'm going to Grandma's house for dinner. Honestly, this girl is a planner through and through, wonder where she gets that? :)
As I said good-bye to Camryn and Jason again my heart just stops for a quick second. Ever heard that Kenny Chesney song "There goes my life?"...sometimes it's really as if I'm watching a little piece of heart drive away each time. As I turned around to head in the house there stood another part of my heart...my precious boy, Wyatt. Yes, over and over this morning as I prepared for my day I was thanking the Lord for these two blessings packaged in a really great, amazing, miraculous story. I feel a sense of awe and wonder when I think of my two kids...perhaps the most perfect, greatest gifts I have ever been given. And always I'm reminded that I hold them loosely, because they are the Lord's before they are ever mine.
I got to work and went about preparing for the day...I was a bit anxious because I was going to try an activity with my classes and I hoped they would participate well and it would work. But, more than that anxious to hear those words I long to hear every other Tuesday..."She's doing great!" As I was finishing up things in my classroom my phone rang and on the other end a darling little voice announcing..."No more steroids at night!" Can you believe it? At clinic Dr.A decided to discontinue her nightly dose of steroids and begin the wean of her morning dose. On Friday we lower her morning dose and then again next week and hopefully, fingers crossed Camryn will be completely steroid free soon. Most likely her doctors will keep her on a low every other day dose for a while just to keep the GVH in check. And you know I'm okay with that, because even throughout the weaning process so far we are seeing a slight decrease in the side-effects of the steroids.
Camryn's doctors continue to confirm that she is doing great, looks great and really is doing fabulous for being five months post-transplant. They are pleased that her GVH is under control and yet present. That her liver enzymes are well within control. That her body is responding well to cyclosporin. Overall, that Camryn is doing all the things she should be at this point...and doing them well. We got her labs this afternoon and again we are grateful for great numbers...honestly these labs are just such a boost for us. Her numbers are strong...and not really wavering which is fabulous! And to think Camryn has held these numbers without a transfusion post-transplant...Good Job Wyatt's marrow!
Once Camryn got home from clinic she had a quick lunch and then Ms. F came for school today. Camryn was super excited to have a doctors appointment and school all in one day...a busy little bee we have. I was lucky enough to make it home to observe and listen to Camryn and Ms. F interacting "doing" school as Camryn calls it. What a joy! Camryn absolutely loves school...she loves it! In fact the other day Jason and the kids dropped me off at Village for an open house and Camryn responded that she is in kindergarten, not kindergarten at Village; but sort of. And you know what? She didn't complain, or even comment that she wished it were different...she has settled into her normal, and it fits her and she is blossoming in ways that neither Jason or I expected!
Sometimes I really think that by now I should not be surprised by the variety of things that the Lord continues to bless our lives with...that by now I should be more confident, more assured, more...well, more content. I guess after this journey, a pro-longed one at that maybe I should have learned how to be all those things and more...and truth is I've grown a lot and yet there is so much more to learn and grow through...
How do we get to the morning, to the sunshine, to the joy? There is only one way. By waiting for it. We can't hurry the dawn, no matter how anxiously we pace the floor or how impatiently we watch the clock. And so the question is not do we wait or not wait, because waiting is all we can do. The question is, HOW will we wait? Will we wait well...or will we wait poorly?~Ken Gire
By now...we have waited, and days we waited well and days we have waited poorly...and thankfully we are given grace to begin again and again.
Monday, November 9, 2009
seasons...
Yesterday we headed out to my sister's house to celebrate my niece's 15th birthday...we had a wonderful day! Camryn and Wyatt absolutely love my sister and her family and thoroughly enjoys time spent with them. They had fun walking outside, watching the little cottontail bunnies, feeding the crows...and just enjoying a little bit of country living.
As we were swinging on the porch swing looking out over the valley I noticed the trees changing color and the beauty of the autumn sky...I was struck by the seasons.
Last time we were at my sister's it was the heat of summer, so hot that you really could not enjoy time spent outside as you would practically melt. And now, it's beautiful...
Seasons...
This time last year Camryn was beginning to show signs of sickness coming on...we had made various trips to the ER and clinic and it was clear that her body was battling something. Little did we know then that the something was leukemia. A year has come and gone and with that the seasons...
I never tire of the analogy of our walk with the Lord being like seasons...because it really is. There are moments of pure delight, fun, carefree spirit and just a zest for all that comes. There are moments of preparing, for the storm clouds seem to be forming, a chill is in the air knowing what lies ahead. Then the time of cold, lonely, feeling long, dark...but, yet knowing it will not, cannot last forever...because then comes renewal, a chance to begin again. Yes our Savior walks with us throughout these seasons...as we walk with Him. I love the walk, I love the journey...I have grown and yet, I still am.
He is no where near finished with me yet...there are still days I want to scream at the sky, wanting answers, wanting reasons. There are days when the load light it's almost as if, it is not there at all. Then the moments come when I can almost sense we could be starting again...
Every evening sky, an invitation
To trace the patterned stars
And early in July, a celebration
For freedom that is ours
And I notice You
In children’s games
In those who watch them from the shade
Every drop of sun is full of fun and wonder
You are summer
And even when the trees have just surrendered
To the harvest time
Forfeiting their leaves in late September
And sending us inside
Still I notice You when change begins
And I am braced for colder winds
I will offer thanks for what has been and was to come
You are autumn
And everything in time and under heaven
Finally falls asleep
Wrapped in blankets white, all creation
Shivers underneath
And still I notice you
When branches crack
And in my breath on frosted glass
Even now in death, You open doors for life to enter
You are winter
And everything that’s new has bravely surfaced
Teaching us to breathe
What was frozen through is newly purposed
Turning all things green
So it is with You
And how You make me new
With every season’s change
And so it will be
As You are re-creating me
Summer, autumn, winter, spring
~ Nichole Nordeman
Through it all...maybe He is re-creating us, our family. Teaching us that He will carry us through every season...
As we were swinging on the porch swing looking out over the valley I noticed the trees changing color and the beauty of the autumn sky...I was struck by the seasons.
Last time we were at my sister's it was the heat of summer, so hot that you really could not enjoy time spent outside as you would practically melt. And now, it's beautiful...
Seasons...
This time last year Camryn was beginning to show signs of sickness coming on...we had made various trips to the ER and clinic and it was clear that her body was battling something. Little did we know then that the something was leukemia. A year has come and gone and with that the seasons...
I never tire of the analogy of our walk with the Lord being like seasons...because it really is. There are moments of pure delight, fun, carefree spirit and just a zest for all that comes. There are moments of preparing, for the storm clouds seem to be forming, a chill is in the air knowing what lies ahead. Then the time of cold, lonely, feeling long, dark...but, yet knowing it will not, cannot last forever...because then comes renewal, a chance to begin again. Yes our Savior walks with us throughout these seasons...as we walk with Him. I love the walk, I love the journey...I have grown and yet, I still am.
He is no where near finished with me yet...there are still days I want to scream at the sky, wanting answers, wanting reasons. There are days when the load light it's almost as if, it is not there at all. Then the moments come when I can almost sense we could be starting again...
Every evening sky, an invitation
To trace the patterned stars
And early in July, a celebration
For freedom that is ours
And I notice You
In children’s games
In those who watch them from the shade
Every drop of sun is full of fun and wonder
You are summer
And even when the trees have just surrendered
To the harvest time
Forfeiting their leaves in late September
And sending us inside
Still I notice You when change begins
And I am braced for colder winds
I will offer thanks for what has been and was to come
You are autumn
And everything in time and under heaven
Finally falls asleep
Wrapped in blankets white, all creation
Shivers underneath
And still I notice you
When branches crack
And in my breath on frosted glass
Even now in death, You open doors for life to enter
You are winter
And everything that’s new has bravely surfaced
Teaching us to breathe
What was frozen through is newly purposed
Turning all things green
So it is with You
And how You make me new
With every season’s change
And so it will be
As You are re-creating me
Summer, autumn, winter, spring
~ Nichole Nordeman
Through it all...maybe He is re-creating us, our family. Teaching us that He will carry us through every season...
Friday, November 6, 2009
super cool...
Every other Wednesday Camryn has a home health nurse come and draw her labs; this saves us a trip to UCLA so we are very thankful. The home nurse is super sweet and Camryn has taking a liking to her so drawing her labs is a quick and easy process.
Later that evening I emailed Camryn's NP to ask if I should call tomorrow and check on any med changes, as I was secretly hoping maybe, just maybe lower steroids??? Can't hurt to hope and check in, right? Camryn's NP emailed me back and said that we were really on top of things as Camryn's labs had just came through the fax...she would call in a bit once they took a look at them. Well, they called and...
Camryn's labs look...FABULOUS!!!
All her levels are holding nice and strong, her NP talked me through the usual suspects of hemoglobin, hematocrit, platelets, white cell count and ANC; all of which were great. Then she talked through Camryn's liver tests...they are coming way down...super great, super wonderful!!! She would call the doctors and see if they wanted to adjust meds at all and then they would get in touch with us.
We waited not too long and Dr.A called and explained that we were to LOWER the steroids...woohoo! Like I've said before Camryn is on a very slow wean, but any lowering means that we are getting there...the day without steroids. So Camryn is on 3mls in the morning and 1.5mls at night and if nothing changes then tomorrow it is 3mls in the morning and 1 at night! Honestly, I cannot wait until the steroids are done and the side-effects start to dwindle...so hopeful!
Camryn is way excited too, she totally noticed that her syringe had less "pink medicine" than it normally does, yeah not much gets by her.
It's super cool...Camryn is doing well and everyday we are one step further from transplant and just given one more day.
Later that evening I emailed Camryn's NP to ask if I should call tomorrow and check on any med changes, as I was secretly hoping maybe, just maybe lower steroids??? Can't hurt to hope and check in, right? Camryn's NP emailed me back and said that we were really on top of things as Camryn's labs had just came through the fax...she would call in a bit once they took a look at them. Well, they called and...
Camryn's labs look...FABULOUS!!!
All her levels are holding nice and strong, her NP talked me through the usual suspects of hemoglobin, hematocrit, platelets, white cell count and ANC; all of which were great. Then she talked through Camryn's liver tests...they are coming way down...super great, super wonderful!!! She would call the doctors and see if they wanted to adjust meds at all and then they would get in touch with us.
We waited not too long and Dr.A called and explained that we were to LOWER the steroids...woohoo! Like I've said before Camryn is on a very slow wean, but any lowering means that we are getting there...the day without steroids. So Camryn is on 3mls in the morning and 1.5mls at night and if nothing changes then tomorrow it is 3mls in the morning and 1 at night! Honestly, I cannot wait until the steroids are done and the side-effects start to dwindle...so hopeful!
Camryn is way excited too, she totally noticed that her syringe had less "pink medicine" than it normally does, yeah not much gets by her.
It's super cool...Camryn is doing well and everyday we are one step further from transplant and just given one more day.
Wednesday, November 4, 2009
five...
Five months ago Wyatt gave Camryn his bone marrow...
Amazing.
Crazy.
Hard.
Blessed.
Impossible.
Tear-filled.
Hopeful.
Thankful.
Forgettable.
Memorable.
The list really could go on and on forever the range of emotions that can be found on any given day throughout these past five months. Sometimes I cannot wrap my mind around all that has happened in the past five months and yet time seems to just stand still as well.
Five months ago we really, honestly did not know where transplant would take Camryn...our family. We were told to expect a much harder road and in ways it has been much harder and in ways it has been exactly the same. And yet five months is a significant amount of time to watch Camryn's marrow begin again...
The first time around maybe we were naive, no we were. We had no idea of what all this really meant...and now we do. Five months and doing well...five months and no fevers! Five months and some GVH mixed with high, strong numbers. Five months of taking each day as it comes...
There are fabulous days, good days, blah days and really hard days...but thankfully throughout each day there is a little survivor and a little donor who five months ago fought hard again...
Praying that the outcome of this transplant far outweighs the first one...praying that Wyatt's marrow and Camryn's GVH just wreck havoc on any and all leukemia cells that might rear there ugly head. Someone asked me "When are you out of the woods? When can you stop worrying about leukemia?" The answer quite simply is we are never out of the woods, in fact we live in the woods so to speak and leukemia, cancer will always be an ugly word...
But, for the past five months we lived without it...and my hope of all hopes is that Camryn never has to live with it again!
Grateful for five...hopeful for many, many more.
Amazing.
Crazy.
Hard.
Blessed.
Impossible.
Tear-filled.
Hopeful.
Thankful.
Forgettable.
Memorable.
The list really could go on and on forever the range of emotions that can be found on any given day throughout these past five months. Sometimes I cannot wrap my mind around all that has happened in the past five months and yet time seems to just stand still as well.
Five months ago we really, honestly did not know where transplant would take Camryn...our family. We were told to expect a much harder road and in ways it has been much harder and in ways it has been exactly the same. And yet five months is a significant amount of time to watch Camryn's marrow begin again...
The first time around maybe we were naive, no we were. We had no idea of what all this really meant...and now we do. Five months and doing well...five months and no fevers! Five months and some GVH mixed with high, strong numbers. Five months of taking each day as it comes...
There are fabulous days, good days, blah days and really hard days...but thankfully throughout each day there is a little survivor and a little donor who five months ago fought hard again...
Praying that the outcome of this transplant far outweighs the first one...praying that Wyatt's marrow and Camryn's GVH just wreck havoc on any and all leukemia cells that might rear there ugly head. Someone asked me "When are you out of the woods? When can you stop worrying about leukemia?" The answer quite simply is we are never out of the woods, in fact we live in the woods so to speak and leukemia, cancer will always be an ugly word...
But, for the past five months we lived without it...and my hope of all hopes is that Camryn never has to live with it again!
Grateful for five...hopeful for many, many more.
Monday, November 2, 2009
day +151...
Camryn has made it to the half way mark to her next big benchmark day +300...and Wednesday marks 5 months since her transplant!
WOW! Time is moving rather quickly...
The other night while changing Camryn's line she asked how long she had her line...we counted it up together and it is 8 months. She had her first line for only 8 months...and now we'll have this one longer. It is amazing to think how far Camryn has come in the past 9 months and really more importantly the past 5 months.
The other day I went back and read through a bit of my journal from her first transplant and I was drawn to an entry about my baby boy Wyatt who was about 6 weeks old...I cried as I read the words trying to explain to Wyatt why I was not holding him all day long. Why I had to leave my brand new baby with his grandmas? I felt a guilt unlike any other...and the tears just flowed freely as I read. Because in October of 2006 the future seemed so unknown...
And now at the beginning of November 2009 the future really isn't much clear. But what is...
Camryn is 5 and a half...Wyatt is 3...
We've come a long way since November of 2006...We've come a long way since February of 2009...We've come a long way since June of 2009...
A 151 days to be exact.
But who's counting?
WOW! Time is moving rather quickly...
The other night while changing Camryn's line she asked how long she had her line...we counted it up together and it is 8 months. She had her first line for only 8 months...and now we'll have this one longer. It is amazing to think how far Camryn has come in the past 9 months and really more importantly the past 5 months.
The other day I went back and read through a bit of my journal from her first transplant and I was drawn to an entry about my baby boy Wyatt who was about 6 weeks old...I cried as I read the words trying to explain to Wyatt why I was not holding him all day long. Why I had to leave my brand new baby with his grandmas? I felt a guilt unlike any other...and the tears just flowed freely as I read. Because in October of 2006 the future seemed so unknown...
And now at the beginning of November 2009 the future really isn't much clear. But what is...
Camryn is 5 and a half...Wyatt is 3...
We've come a long way since November of 2006...We've come a long way since February of 2009...We've come a long way since June of 2009...
A 151 days to be exact.
But who's counting?
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!".
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