A favorite time of day for the kids is when Daddy comes home, they absolutely LOVE when his truck pulls in the driveway. My heart cherishes the moments when the give big hugs to Daddy and just love on him...what a treasure he is to our family.
Today Wyatt was still napping when Jason got home, but Camryn and I were cuddling on the couch. And I'll admit the cuddling time was wonderful. Camryn is growing up and in a lot of ways she is still my sweet baby girl and in a lot of ways she's an independent, curious, growing five year old. I was savoring the moment when Jason walked in and told Camryn and me to close our eyes...we did knowing that most likely some sort of surprise was coming. Soon we heard open and Jason had bought flowers for both Camryn and me. Camryn's face beamed with joy...she LOVED her flowers. And I loved mine. What a special little treat...what a cherished little surprise.
This evening we had just some sweet family time together...we ran an errand and enjoy some dinner together. With Wyatt doing a little dancing and Camryn just laughing with joy watching him...oh the bond, oh the joy they share. Jason and I never tire of time spent with our children, they make us smile with joy...our hearts are full.
As we were driving home I realized that the sounds of Camryn and Wyatt's voices...their little giggles...them chatting in the car...all of these things are just the little gifts along the way.
Today was a nice little surprise for my heart...a feeling of an overflowing heart of thankfulness.
Also...
Camryn's liver enzymes are back in normal range! Woohoo!
Wednesday, September 30, 2009
Tuesday, September 29, 2009
day +117...clinic...pics
Today marks Day +117 since Camryn's transplant, it's amazing to think that Camryn has come this far and yet at the same time almost as if we should be further along. Either way it is an absolute blessing to be where we are...
Tuesdays mark clinic visits and ever since the appearance of GVH our visits are no longer once a month. We are visiting UCLA on a much regular schedule, we are hopeful though maybe in the next couple visits we'll get spaced out again and aim for more days between visits. Camryn's GVH is still very much present, her rash is looking much better and is fading to a nice brown color, the pinkness is gone. The rash is showing up on her hands and feet which is very common for GVH so this is welcome.
Today Camryn got to see a new doctor (a med. student) as the first year fellows were at a conference, from what I hear she did not enjoy the process of the new doctor much. She did her usual short, uninterested answers...the doctor told Jason that Camryn is currently in the 65th percentile for her height and weight for a five year old. I found this interesting as we no longer have the routine well-checks at the pediatrician so hearing where Camryn was compared to normal five year old population was sort of fun.
After the doctor was done Dr.M came and according to Jason everything changed...Camryn's face lit up and from then on out it was a pleasant visit. Have I told you how much Camryn loves Dr.M? Dr.M was very happy with Camryn's progress and thought she looked great. The decision was made to put Camryn back on cyclosporin as Dr.M does not want her on the high level of steroids she is on for an extended period of time. Dr.M feels that Camryn's system responds well to cyclosporin and being that they want some GVH Camryn was put on a low dose of cyclosporin. For now we'll continue on the steroids for a week and then next Tuesday labs will be drawn to test her cyclosporin levels and from there the steroids will be weaned. Yay!
Camryn has gained close to 7 pounds on the steroids and she is really feeling the side effects, so to know that we only have about one more week on the high dose is great! We are so over steroids at our house.
Camryn's labs look fantastic! Her levels are now on the high end of normal, which we haven't seen in well...I am not sure how long. Seeing her labs so great is a beautiful sight...really it is. After long months of low labs and almost non-existent ANC levels we are more than happy with an ANC at 5100. Remember the days of waiting for 500? Seeing her labs so strong really gives us cause to take a deep breath, to inhale and exhale...to know that Wyatt's marrow is setting up shop and doing some great work.
I will fully admit though that this GVH stuff is maddening. It is difficult to navigate rashes, meds and levels and not have thoughts of fear. The first time around Camryn did not have GVH at all. This time around it is becoming a friend and I guess in time a welcomed friend. As Camryn's doctors feel like the GVH will play a significant part in fighting against relapse. Although my head completely gets all of this...the added meds, the rashes, the constant level checks...is all part of the process against relapse. My heart is tired.
Sometimes I feel that this time around is so much harder in ways that I cannot even properly explain. I feel as though post-transplant life is breaking my heart more than it ever did before. And yet, I know that I never want to walk this road again...I never want Camryn to go through the hell she has. If this is what it takes then I will trust my heart to HIM. The Lord and I have had some poignant moments lately...moments when all I have wanted to do is shake my fists at the sky and beg Him to remove this from our lives...moments when His tender mercies rain down on my heart bringing healing...moments when I have fallen...moments when He has carried me. And through them all He is here.
This precious face daily reminds me of how incredibly blessed we are...how incredibly thankful we are...and His great love for us.
These two faces daily make the world a little better...make me smile...a make the weight of the journey lighter...and remind me of His great blessings on my life.
Wrestling and thankful...the journey of a parent daily learning to let go.
Tuesdays mark clinic visits and ever since the appearance of GVH our visits are no longer once a month. We are visiting UCLA on a much regular schedule, we are hopeful though maybe in the next couple visits we'll get spaced out again and aim for more days between visits. Camryn's GVH is still very much present, her rash is looking much better and is fading to a nice brown color, the pinkness is gone. The rash is showing up on her hands and feet which is very common for GVH so this is welcome.
Today Camryn got to see a new doctor (a med. student) as the first year fellows were at a conference, from what I hear she did not enjoy the process of the new doctor much. She did her usual short, uninterested answers...the doctor told Jason that Camryn is currently in the 65th percentile for her height and weight for a five year old. I found this interesting as we no longer have the routine well-checks at the pediatrician so hearing where Camryn was compared to normal five year old population was sort of fun.
After the doctor was done Dr.M came and according to Jason everything changed...Camryn's face lit up and from then on out it was a pleasant visit. Have I told you how much Camryn loves Dr.M? Dr.M was very happy with Camryn's progress and thought she looked great. The decision was made to put Camryn back on cyclosporin as Dr.M does not want her on the high level of steroids she is on for an extended period of time. Dr.M feels that Camryn's system responds well to cyclosporin and being that they want some GVH Camryn was put on a low dose of cyclosporin. For now we'll continue on the steroids for a week and then next Tuesday labs will be drawn to test her cyclosporin levels and from there the steroids will be weaned. Yay!
Camryn has gained close to 7 pounds on the steroids and she is really feeling the side effects, so to know that we only have about one more week on the high dose is great! We are so over steroids at our house.
Camryn's labs look fantastic! Her levels are now on the high end of normal, which we haven't seen in well...I am not sure how long. Seeing her labs so great is a beautiful sight...really it is. After long months of low labs and almost non-existent ANC levels we are more than happy with an ANC at 5100. Remember the days of waiting for 500? Seeing her labs so strong really gives us cause to take a deep breath, to inhale and exhale...to know that Wyatt's marrow is setting up shop and doing some great work.
I will fully admit though that this GVH stuff is maddening. It is difficult to navigate rashes, meds and levels and not have thoughts of fear. The first time around Camryn did not have GVH at all. This time around it is becoming a friend and I guess in time a welcomed friend. As Camryn's doctors feel like the GVH will play a significant part in fighting against relapse. Although my head completely gets all of this...the added meds, the rashes, the constant level checks...is all part of the process against relapse. My heart is tired.
Sometimes I feel that this time around is so much harder in ways that I cannot even properly explain. I feel as though post-transplant life is breaking my heart more than it ever did before. And yet, I know that I never want to walk this road again...I never want Camryn to go through the hell she has. If this is what it takes then I will trust my heart to HIM. The Lord and I have had some poignant moments lately...moments when all I have wanted to do is shake my fists at the sky and beg Him to remove this from our lives...moments when His tender mercies rain down on my heart bringing healing...moments when I have fallen...moments when He has carried me. And through them all He is here.
This precious face daily reminds me of how incredibly blessed we are...how incredibly thankful we are...and His great love for us.
These two faces daily make the world a little better...make me smile...a make the weight of the journey lighter...and remind me of His great blessings on my life.
Wrestling and thankful...the journey of a parent daily learning to let go.
Sunday, September 27, 2009
blessing...
Our sweet little niece who many of you have been praying for came into the world last night. Weighing in at 4 pounds 1 ounce and 16 inches long...
Little Peighton Hope captured our hearts...
May the Lord continue to protect you and lavish his love on you...after all dear one you are filled with hope.
Thank you blog followers for praying for our sweet Peighton, her Mommy, Daddy and big sister Riley through out this journey.
Little Peighton Hope captured our hearts...
May the Lord continue to protect you and lavish his love on you...after all dear one you are filled with hope.
Thank you blog followers for praying for our sweet Peighton, her Mommy, Daddy and big sister Riley through out this journey.
Saturday, September 26, 2009
big heart...
Someone once told me that Wyatt's name means "little warrior"...and you know it's true.
On Thursday at his well check-up, Dr.K called Wyatt her "little shrimp". Yes, Wyatt is on the small end of things...he's a little guy for sure. And you know that's okay with me...
Because it's not the size of Wyatt that matters...it's the size of his heart.
And Wyatt has a big heart!
Wyatt continues to watch over his big sister and best friend...he continues to keep track of her medicines, her shots, her line changes. In fact last night as we were changing Camryn's line Wyatt told Jason to go help, because Camryn needs you. Tonight he watched over the process of it all...and just loved on Camryn when it was over.
There is a lot of attention given to Camryn but a day doesn't go by that I don't thank the Lord for the sweetest little guy in our home. He is wonderful, crazy, fun, sweet, sensitive, fighter, stubborn...the list goes on and on.
Wyatt has a big heart and it overflows with love for his sister...for inasmuch as he understands he prays for her every night that Jesus would make her better...
And Jesus is...
And Wyatt is a huge part of the healing...
So thankful for Wyatt...so thankful!
On Thursday at his well check-up, Dr.K called Wyatt her "little shrimp". Yes, Wyatt is on the small end of things...he's a little guy for sure. And you know that's okay with me...
Because it's not the size of Wyatt that matters...it's the size of his heart.
And Wyatt has a big heart!
Wyatt continues to watch over his big sister and best friend...he continues to keep track of her medicines, her shots, her line changes. In fact last night as we were changing Camryn's line Wyatt told Jason to go help, because Camryn needs you. Tonight he watched over the process of it all...and just loved on Camryn when it was over.
There is a lot of attention given to Camryn but a day doesn't go by that I don't thank the Lord for the sweetest little guy in our home. He is wonderful, crazy, fun, sweet, sensitive, fighter, stubborn...the list goes on and on.
Wyatt has a big heart and it overflows with love for his sister...for inasmuch as he understands he prays for her every night that Jesus would make her better...
And Jesus is...
And Wyatt is a huge part of the healing...
So thankful for Wyatt...so thankful!
Thursday, September 24, 2009
shadows...
I got the new David Crowder Band cd this week and true to form they have a song that I have begun singing in my heart...
Shadows...
Life is full of light and shadow
O the joy and O the sorrow
O the sorrow
And yet will He bring
Dark to light
And yet will He bring
Day from night
When shadows fall on us
We will not fear
We will remember
When darkness falls on us
We will not fear
We will remember
When all seems lost
When we're thrown and we're tossed
We remember the cost
We rest in Him
Shadow of the cross
I have been wrestling this week...wrestling within myself to find a balance between the life I am living and the life that seems to be beyond my reach. I feel as though I am battling old thoughts and feelings that I thought had been safely worked through...guess I was wrong.
Tonight was Back to School night at work, a time to talk to parents about the year to come...and in one class I almost lost it. I was explaining how excited I was to be back with their chidren, because truly I am. It feels good to start again...it's the finishing part that I struggle with. Honestly, I stood at the front of that very classroom last September and the view of life was great...then February and all fell apart. I guess I found myself tonight standing in a shadow if you will.
A shadow of what was...a great beginning and the shadow of what it became...a harsh journey again.
As I explained my journey to the parents...I saw their heads nod, eyes shift and looks of compassion. I felt so odd...like I wanted to say that I'm the same Mrs. Mikels who stood in front of a classroom in September of 2005, before leukemia became a vocabulary word for me. But, simply I can't.
I can't escape the shadows...
Today I saw a group of Kindgergarteners walking to the playground and I swallowed hard...will that always be a trigger?
Today I took Wyatt to his three year old well-check up...he is doing wonderfully. He made quite a friend in Dr.K, but all the while I just was waiting...waiting for her to tell me something was wrong. Because isn't that what happens? I know Wyatt is fine, I know he is in great health...but from where I stand that just isn't a given. Dr.K and I chatted about Camryn and I was almost in tears...trying my best to be strong and focus on Wyatt. But, the shadow of Camryn's journey is woven throughout our lives.
Last night Wyatt had melt-down about even going to the doctor...he was so scared. And true to form Camryn gave him the pep talk of all pep talks..."Wyatt I am always with you in your heart...you'll be okay. I will be here when you get home." Cam's pep talk was as sincere as they come...she was truly worried about Wyatt. Afterall both my kids know far more about the doctor than I would have ever wished for. Their vocabulary is full of line changes, flushings, shots, emla cream, medicine...the list goes on and on.
The shadow...
I really believe and hope that one day our lives will be lived beyond the reaches of the shadow. That not every decision, every detail, every plan will have to be run through the "post-transplant" filter. But, even then I wonder...
Because tonight afterwards a mom came up to say hi and let me know that her family was praying for mine. She said that she had proof of God's goodness...her son. And there he stood...a young man who I had when he was in middle school and now he is a senior. A young man who while in elementary school fought cancer...and he smiled...he hugged me and said....
"God is good, look at me."
And I did...I gazed and took it all in...
Because in that moment the shadow didn't feel as heavy...that there was hope.
Like David Crowder Band's song says...
When all seems lost
When we're thrown and we're tossed
We remember the cost
We rest in Him
Shadow of the cross
Hope found in the cross...to rest, to rest...in the shadow of the cross...to find my strength for each new day, for each moment in the cross of Jesus.
To stand and gaze and remember...remember the cost and the reason...
His great love for us.
Shadows...
Life is full of light and shadow
O the joy and O the sorrow
O the sorrow
And yet will He bring
Dark to light
And yet will He bring
Day from night
When shadows fall on us
We will not fear
We will remember
When darkness falls on us
We will not fear
We will remember
When all seems lost
When we're thrown and we're tossed
We remember the cost
We rest in Him
Shadow of the cross
I have been wrestling this week...wrestling within myself to find a balance between the life I am living and the life that seems to be beyond my reach. I feel as though I am battling old thoughts and feelings that I thought had been safely worked through...guess I was wrong.
Tonight was Back to School night at work, a time to talk to parents about the year to come...and in one class I almost lost it. I was explaining how excited I was to be back with their chidren, because truly I am. It feels good to start again...it's the finishing part that I struggle with. Honestly, I stood at the front of that very classroom last September and the view of life was great...then February and all fell apart. I guess I found myself tonight standing in a shadow if you will.
A shadow of what was...a great beginning and the shadow of what it became...a harsh journey again.
As I explained my journey to the parents...I saw their heads nod, eyes shift and looks of compassion. I felt so odd...like I wanted to say that I'm the same Mrs. Mikels who stood in front of a classroom in September of 2005, before leukemia became a vocabulary word for me. But, simply I can't.
I can't escape the shadows...
Today I saw a group of Kindgergarteners walking to the playground and I swallowed hard...will that always be a trigger?
Today I took Wyatt to his three year old well-check up...he is doing wonderfully. He made quite a friend in Dr.K, but all the while I just was waiting...waiting for her to tell me something was wrong. Because isn't that what happens? I know Wyatt is fine, I know he is in great health...but from where I stand that just isn't a given. Dr.K and I chatted about Camryn and I was almost in tears...trying my best to be strong and focus on Wyatt. But, the shadow of Camryn's journey is woven throughout our lives.
Last night Wyatt had melt-down about even going to the doctor...he was so scared. And true to form Camryn gave him the pep talk of all pep talks..."Wyatt I am always with you in your heart...you'll be okay. I will be here when you get home." Cam's pep talk was as sincere as they come...she was truly worried about Wyatt. Afterall both my kids know far more about the doctor than I would have ever wished for. Their vocabulary is full of line changes, flushings, shots, emla cream, medicine...the list goes on and on.
The shadow...
I really believe and hope that one day our lives will be lived beyond the reaches of the shadow. That not every decision, every detail, every plan will have to be run through the "post-transplant" filter. But, even then I wonder...
Because tonight afterwards a mom came up to say hi and let me know that her family was praying for mine. She said that she had proof of God's goodness...her son. And there he stood...a young man who I had when he was in middle school and now he is a senior. A young man who while in elementary school fought cancer...and he smiled...he hugged me and said....
"God is good, look at me."
And I did...I gazed and took it all in...
Because in that moment the shadow didn't feel as heavy...that there was hope.
Like David Crowder Band's song says...
When all seems lost
When we're thrown and we're tossed
We remember the cost
We rest in Him
Shadow of the cross
Hope found in the cross...to rest, to rest...in the shadow of the cross...to find my strength for each new day, for each moment in the cross of Jesus.
To stand and gaze and remember...remember the cost and the reason...
His great love for us.
Tuesday, September 22, 2009
pictures...
Here are a few pics from Wyatt's party...Hope you enjoy!
Playing with the water table...
Even though they are getting older...twins much?
More water table fun...
Wyatt showing off his best swing...
Candy...
Wyatt finally blowing out his candle...yes, we had to wait until he was ready. Quite a particular lil guy!
Riley enjoying her cupcake...YUM!
Jackson enjoying his cupcake...YUM!
The Mikels Girls...quite a trio and very excited to be adding one more soon...
Riley, Wyatt and Tori...opening presents
Spinkler time...
Camryn...
Riley & Wyatt the best of friends...
Jackson & Wyatt...too cute!
Playing with the water table...
Even though they are getting older...twins much?
More water table fun...
Wyatt showing off his best swing...
Candy...
Wyatt finally blowing out his candle...yes, we had to wait until he was ready. Quite a particular lil guy!
Riley enjoying her cupcake...YUM!
Jackson enjoying his cupcake...YUM!
The Mikels Girls...quite a trio and very excited to be adding one more soon...
Riley, Wyatt and Tori...opening presents
Spinkler time...
Camryn...
Riley & Wyatt the best of friends...
Jackson & Wyatt...too cute!
quick update...
No pictures yet...planning on posting them this afternoon when I get home from work. Sorry to keep you waiting. :)
I wanted to post a quick update on Camryn's labs yesterday. Her liver enzymes are coming down, but still a bit high so no change in her steroid meds. We were happy to hear that the levels were coming down, but a bit disappointed to still be on a high dose. We'll see what next week holds. BUT, the rest of her labs looked great!! WOOHOO...Camryn is doing really well and in light that the GVH is wanted we really are in a good place. Her rash is looking much better as well...all steps in the right direction.
Thank you for praying...labs again next Tuesday and we are hopeful for even better numbers!
Good Job Wyatt's Marrow...you are doing your job fabulously!
I wanted to post a quick update on Camryn's labs yesterday. Her liver enzymes are coming down, but still a bit high so no change in her steroid meds. We were happy to hear that the levels were coming down, but a bit disappointed to still be on a high dose. We'll see what next week holds. BUT, the rest of her labs looked great!! WOOHOO...Camryn is doing really well and in light that the GVH is wanted we really are in a good place. Her rash is looking much better as well...all steps in the right direction.
Thank you for praying...labs again next Tuesday and we are hopeful for even better numbers!
Good Job Wyatt's Marrow...you are doing your job fabulously!
Sunday, September 20, 2009
party time...
I love birthdays...always have, always will. And the two that I especially enjoy? My two...Camryn and Wyatt.
Today was Wyatt's CARS party...he has been so excited for weeks to celebrate his birthday. Honestly, I think one of the most fun parts of birthdays is when your kids finally get it and they enjoy it. Wyatt had his choice of theme, food, fun...and it was a day spent in Wyatt style and he loved it.
Wyatt and Camryn spent most of the day anxiously awaiting their friends to arrive, they could not wait. It's a funny thing watching the isolated world meet the real world. Wyatt was thrilled to see his cousins and really enjoyed playing with them. Like always his best little buddy was Riley...but, I see a new little friendship growing between Wyatt and Jackson. What fun! These three are quite a trio of kids separated by ten months. Love watching them play!
Wyatt enjoyed his cupcakes and pizza...and company...complete with his grandparents, aunties and uncles, cousins and very best friends. Both he and Camryn don't get to hang out with their family as much due to Camryn's isolation, but today they both savored it to the fullest! What a great gift it is to have such amazing people in our lil guy's life! So blessed!
What a fun day to celebrate an amazing gift that Jason and I were given three years ago. Really, can't even comprehend our lives before Wy Man...
Love you Wy!
I have many pictures to come soon...
______________________
And real quick your prayers would be much appreciated tomorrow for Camryn's lab draw that her liver enzymes would be back to normal and we can cut down on the steroids. By the way her rash is looking lots better! Now, just the liver enzymes and we'll be on our way through our first and hopefully not last GVH flare up!
______________________
Many thanks to you faithful readers who continue to follow our story and our dear children. I thank you for praying for them and I wish I could thank you in person...
THANK YOU!
Today was Wyatt's CARS party...he has been so excited for weeks to celebrate his birthday. Honestly, I think one of the most fun parts of birthdays is when your kids finally get it and they enjoy it. Wyatt had his choice of theme, food, fun...and it was a day spent in Wyatt style and he loved it.
Wyatt and Camryn spent most of the day anxiously awaiting their friends to arrive, they could not wait. It's a funny thing watching the isolated world meet the real world. Wyatt was thrilled to see his cousins and really enjoyed playing with them. Like always his best little buddy was Riley...but, I see a new little friendship growing between Wyatt and Jackson. What fun! These three are quite a trio of kids separated by ten months. Love watching them play!
Wyatt enjoyed his cupcakes and pizza...and company...complete with his grandparents, aunties and uncles, cousins and very best friends. Both he and Camryn don't get to hang out with their family as much due to Camryn's isolation, but today they both savored it to the fullest! What a great gift it is to have such amazing people in our lil guy's life! So blessed!
What a fun day to celebrate an amazing gift that Jason and I were given three years ago. Really, can't even comprehend our lives before Wy Man...
Love you Wy!
I have many pictures to come soon...
______________________
And real quick your prayers would be much appreciated tomorrow for Camryn's lab draw that her liver enzymes would be back to normal and we can cut down on the steroids. By the way her rash is looking lots better! Now, just the liver enzymes and we'll be on our way through our first and hopefully not last GVH flare up!
______________________
Many thanks to you faithful readers who continue to follow our story and our dear children. I thank you for praying for them and I wish I could thank you in person...
THANK YOU!
Thursday, September 17, 2009
so much for once a month...
You know when Camryn's doctors said that we only need to see you once a month, a month ago I should have knocked on wood. We have not made it a week without a trip to UCLA for either clinic or for meds at the pharmacy.
Today was yet another trip. Since the doctors upped Camryn's meds on Tuesday we have been flying through our steroids, therefore we needed a refill and since we aren't going back until Monday waiting was not an option. Honestly, Jason and I are trying like mad to figure out a good schedule on Camryn's meds and their refills, but it seems to be a tougher task than we figured. We have yet to succeed. We've contemplated refilling them at our local pharmacy, but last time around we had some trouble with the pharmacy not carrying certain things and ordering and lots of waiting. For now while Camryn has lots of meds we've opted to stay with UCLA just because we know they carry what Camryn needs. And quite frankly last time around I got the twenty question Inquisition at the pharmacy about why my child had so many doctors prescribing meds and why my child had to take so many antibiotics long term. I know they were doing their job, but it got old really fast having to explain over and over that she had a bone marrow transplant and that she was immuno suppressed. At UCLA we don't get those million questions...in fact the pharmactist today was very helpful and I'm thankful.
We got down to the pharmacy and I noticed that there had been a change in Camryn's prescription for her steroid. I know I'm hyper-sensitive to anything having to do with Cam's meds so I questioned it. The pharmactist was great and explained it to me and I still didn't quite know if that was going to be okay as Camryn's doctors were playing with that medication. I knew that there was afternoon clinic on Thursdays and I figured I could catch someone at clinic who could check it out or at least call someone and see if the new prescription would be okay. I ran over to clinic while Jason moved the car and who happened to be there, but Dr.M.:) I was thrilled.
I asked Dr.M about Camryn's meds and he confirmed that it would be okay and in fact the new med is a bit stronger which will be good especially with the higher dose for the liver enzymes. Dr.M then went on the assure me about Camryn's rash and his perspective of it, that it was an answer to prayer. He told me that when Dr.S had emailed him to tell him about the rash he replied with "Yay!", really? We talked some more and he said that the GVH is key for Camryn's recovery and that we want the signs.
As I finished talking with Dr.M and said good-bye, I turned and walked down a hallway I've walked hundreds of times and I felt hopeful. Felt that the road we were walking even if lined with tons of meds, a rash and just some crazy side-effects really pales in comparison with ever walking the leukemia journey again.
As Jason and I were driving home Jason said, "seems pretty providential that you got to see Dr.M this week...that you got to hear for yourself his assurance for you. Seems like God wanted you to see Dr.M today..." And it does...
And I'm thankful...so even though I'm tired of driving down to UCLA more than once a week...the Lord keeps reminding me that even in the littlest of things He is there.
So much for once a month...the Lord reminds me moment by moment that He is with us.
Today was yet another trip. Since the doctors upped Camryn's meds on Tuesday we have been flying through our steroids, therefore we needed a refill and since we aren't going back until Monday waiting was not an option. Honestly, Jason and I are trying like mad to figure out a good schedule on Camryn's meds and their refills, but it seems to be a tougher task than we figured. We have yet to succeed. We've contemplated refilling them at our local pharmacy, but last time around we had some trouble with the pharmacy not carrying certain things and ordering and lots of waiting. For now while Camryn has lots of meds we've opted to stay with UCLA just because we know they carry what Camryn needs. And quite frankly last time around I got the twenty question Inquisition at the pharmacy about why my child had so many doctors prescribing meds and why my child had to take so many antibiotics long term. I know they were doing their job, but it got old really fast having to explain over and over that she had a bone marrow transplant and that she was immuno suppressed. At UCLA we don't get those million questions...in fact the pharmactist today was very helpful and I'm thankful.
We got down to the pharmacy and I noticed that there had been a change in Camryn's prescription for her steroid. I know I'm hyper-sensitive to anything having to do with Cam's meds so I questioned it. The pharmactist was great and explained it to me and I still didn't quite know if that was going to be okay as Camryn's doctors were playing with that medication. I knew that there was afternoon clinic on Thursdays and I figured I could catch someone at clinic who could check it out or at least call someone and see if the new prescription would be okay. I ran over to clinic while Jason moved the car and who happened to be there, but Dr.M.:) I was thrilled.
I asked Dr.M about Camryn's meds and he confirmed that it would be okay and in fact the new med is a bit stronger which will be good especially with the higher dose for the liver enzymes. Dr.M then went on the assure me about Camryn's rash and his perspective of it, that it was an answer to prayer. He told me that when Dr.S had emailed him to tell him about the rash he replied with "Yay!", really? We talked some more and he said that the GVH is key for Camryn's recovery and that we want the signs.
As I finished talking with Dr.M and said good-bye, I turned and walked down a hallway I've walked hundreds of times and I felt hopeful. Felt that the road we were walking even if lined with tons of meds, a rash and just some crazy side-effects really pales in comparison with ever walking the leukemia journey again.
As Jason and I were driving home Jason said, "seems pretty providential that you got to see Dr.M this week...that you got to hear for yourself his assurance for you. Seems like God wanted you to see Dr.M today..." And it does...
And I'm thankful...so even though I'm tired of driving down to UCLA more than once a week...the Lord keeps reminding me that even in the littlest of things He is there.
So much for once a month...the Lord reminds me moment by moment that He is with us.
Tuesday, September 15, 2009
an answer to prayer...
That is what Dr.M said today in regards to Camryn's rash...that yes this rash, this sign of GVH was in fact an answer to prayer. Did I tell you how much we love Dr.M? :)
Camryn and Jason headed out bright and early for clinic today. Jason and I both were pretty much at our wits end with this rash...just not really knowing if it is good, bad or just a sign of things to come. Sigh...we had a wonderful weekend, really we did; but ever present in our mind and heart was the thoughts about Camryn's rash. What in the world did all this mean?
We had been praying that we would get some encouragement today...and the Lord who never ceases to amaze me brought some in just wonderful ways.
As Camryn was at clinic she saw all her favorites, had her labs taken and saw Dr.M and talked about the ever present rash. Which honestly is starting to look a bit better in that it is no longer flaming pink, but starting to get darker and fade so to speak. Dr.M said that when he heard about Camryn's rash he was very pleased...really he said that he was beginning to worry that she had been off anti-rejection drugs (cyclosporin) so long and they hadn't seen anything. So to hear that GVH had reared it's head was welcomed news. He went on to explain that Camryn is exactly where they want her, which is nice to hear. As maddening as the rash is, to see Camryn have a visual issue it is reassuring to know that it is excepted, even welcomed. It is becoming evident to us that the key to this transplant, leukemia adventure this time around is GVH...a sign that Wyatt's marrow is going to kill anything and everything that comes up, even if it is the dreaded enemy leukemia. So if a GVH rash is what it takes to get Camryn well for good...then we'll rest in that.
We got Camryn's labs and they look awesome, really great! What a relief to see that far as her levels she is really building and building some strength. She is off immuno-suppresstant meds so her white count and ANC are very high and strong which is just awesome. Her immune system is still very fragile and immature, but to see her levels strong is very hopeful.
Dr.A called later to up Camryn's meds some more...her liver enzymes are a high but stable so they want to get a handle on it before it could become a worse issue. Basically GVH can show up in the liver and it can really cause some issues...so we'll up the dose and pray that her liver enzymes come down. Camryn has another lab draw on Monday afternoon to check the levels. Prayers much appreciated.
We really hate pumping the amount of steroids in Camryn's system...we are already seeing the side effects of puffiness, increased appetite, moodiness...so the less time we have to be on the increased dose the better.
Really it should not surprise us that the Lord is in everything...that He is constantly at work and He is holding all the details of Camryn's journey. Today it was obvious that He is continually bringing us back to Himself, making us aware that He is in control of all things. For certainly we have more than once found ourselves at the breaking point, when all seems to be so unknown and uncertain and honestly we felt ourselves slipping there these past few days. We are tired...
Tired of meds, tired of walking this journey...and yet so thankful to be where we are knowing that it could be so much worse. I guess at times our utter humanness sneaks in on us and our vision and perspective of things becomes so blurred by what we want...how much we've lost.
And yet...we haven't lost anything compared to Camryn.
So in the moments when our strength is waining...when we aren't even sure how to make it through the next day we look to a little five year old girl who has endured more than either of us. We look to her and we see hope...because she is the one that has to take the countless meds and endure her nightly shot. She is the one that has the itchy rash...she is the one that has lost much.
And yet...I fully believe that she has gained.
I can't say for sure how, but I know that the Lord has lavished His grace upon her in ways that are unspeakable. He has given her so much of Himself that never seems to leave her lacking...He has been with her through it all and what she has gained from His presence is unmatched.
So in light of a rash, meds and just the ups and downs of the cancer journey...there are answers to prayer to be found everywhere...
Even in a rash. Who would of thought?
Camryn and Jason headed out bright and early for clinic today. Jason and I both were pretty much at our wits end with this rash...just not really knowing if it is good, bad or just a sign of things to come. Sigh...we had a wonderful weekend, really we did; but ever present in our mind and heart was the thoughts about Camryn's rash. What in the world did all this mean?
We had been praying that we would get some encouragement today...and the Lord who never ceases to amaze me brought some in just wonderful ways.
As Camryn was at clinic she saw all her favorites, had her labs taken and saw Dr.M and talked about the ever present rash. Which honestly is starting to look a bit better in that it is no longer flaming pink, but starting to get darker and fade so to speak. Dr.M said that when he heard about Camryn's rash he was very pleased...really he said that he was beginning to worry that she had been off anti-rejection drugs (cyclosporin) so long and they hadn't seen anything. So to hear that GVH had reared it's head was welcomed news. He went on to explain that Camryn is exactly where they want her, which is nice to hear. As maddening as the rash is, to see Camryn have a visual issue it is reassuring to know that it is excepted, even welcomed. It is becoming evident to us that the key to this transplant, leukemia adventure this time around is GVH...a sign that Wyatt's marrow is going to kill anything and everything that comes up, even if it is the dreaded enemy leukemia. So if a GVH rash is what it takes to get Camryn well for good...then we'll rest in that.
We got Camryn's labs and they look awesome, really great! What a relief to see that far as her levels she is really building and building some strength. She is off immuno-suppresstant meds so her white count and ANC are very high and strong which is just awesome. Her immune system is still very fragile and immature, but to see her levels strong is very hopeful.
Dr.A called later to up Camryn's meds some more...her liver enzymes are a high but stable so they want to get a handle on it before it could become a worse issue. Basically GVH can show up in the liver and it can really cause some issues...so we'll up the dose and pray that her liver enzymes come down. Camryn has another lab draw on Monday afternoon to check the levels. Prayers much appreciated.
We really hate pumping the amount of steroids in Camryn's system...we are already seeing the side effects of puffiness, increased appetite, moodiness...so the less time we have to be on the increased dose the better.
Really it should not surprise us that the Lord is in everything...that He is constantly at work and He is holding all the details of Camryn's journey. Today it was obvious that He is continually bringing us back to Himself, making us aware that He is in control of all things. For certainly we have more than once found ourselves at the breaking point, when all seems to be so unknown and uncertain and honestly we felt ourselves slipping there these past few days. We are tired...
Tired of meds, tired of walking this journey...and yet so thankful to be where we are knowing that it could be so much worse. I guess at times our utter humanness sneaks in on us and our vision and perspective of things becomes so blurred by what we want...how much we've lost.
And yet...we haven't lost anything compared to Camryn.
So in the moments when our strength is waining...when we aren't even sure how to make it through the next day we look to a little five year old girl who has endured more than either of us. We look to her and we see hope...because she is the one that has to take the countless meds and endure her nightly shot. She is the one that has the itchy rash...she is the one that has lost much.
And yet...I fully believe that she has gained.
I can't say for sure how, but I know that the Lord has lavished His grace upon her in ways that are unspeakable. He has given her so much of Himself that never seems to leave her lacking...He has been with her through it all and what she has gained from His presence is unmatched.
So in light of a rash, meds and just the ups and downs of the cancer journey...there are answers to prayer to be found everywhere...
Even in a rash. Who would of thought?
Monday, September 14, 2009
happy birthday wyatt...
Three years ago today a little guy wrapped up in a big miracle came into our world and our world hasn't been the same since...
Wyatt Jason Mikels
Words just don't seem to adequately capture it...the love we feel for this little guy is overwhelming at the very least. He has a place unlike any other in our Mikels family of four...honestly, he seems to be the glue that makes everything stick. As I carried him for 9 months I often wondered about this baby...and what the future would hold. I have always felt a bit guilty for not properly preparing for Wyatt's birth like most mommies do...but, now looking at him at three years old I don't think it mattered much.
Wyatt makes us laugh...makes the sun shine even on the cloudiest of days. He has been the encouragement to keep believing, keep hoping and that proof ever present that God has not said His last word. There are miracles in the making and Wyatt is one of them...
Oh what a sweet boy...we love you so...
Love you forever and always,
Daddy, Mommy & sister and best friend Camryn
Wyatt Jason Mikels
Words just don't seem to adequately capture it...the love we feel for this little guy is overwhelming at the very least. He has a place unlike any other in our Mikels family of four...honestly, he seems to be the glue that makes everything stick. As I carried him for 9 months I often wondered about this baby...and what the future would hold. I have always felt a bit guilty for not properly preparing for Wyatt's birth like most mommies do...but, now looking at him at three years old I don't think it mattered much.
Wyatt makes us laugh...makes the sun shine even on the cloudiest of days. He has been the encouragement to keep believing, keep hoping and that proof ever present that God has not said His last word. There are miracles in the making and Wyatt is one of them...
Oh what a sweet boy...we love you so...
Love you forever and always,
Daddy, Mommy & sister and best friend Camryn
Sunday, September 13, 2009
without further ado...
Pictures! Sorry I've been a bit lacking in the photo department, my camera battery is seemingly dying much to quickly and I'm missing a lot of great pictures (Camryn's first day of school)...but, I will make it up I promise! :)
The Boys Wrestling...
Wyatt absolutely LOVES wrestling with his Daddy. These two boys make me smile...
A Beautiful Bride dancing with her Little Brother...oh these two are just the best.
Dancing with His Cinderella...one day this day will be for real. Hard to believe our little girl has endured so much...
Camryn and Teddy...the class teddy bear from Room 1 at Village.
Fake beards and mustaches...this is what happens when Jason goes to the store. :)
Rocking the fake mustache...
Camryn working at her Kindergarten desk...she loves this desk!
Yummy 100th day cake.
Just 100th day fun...
So far September has been a fabulous month...coming up next...
WYATT's Birthday Monday!!!
The Boys Wrestling...
Wyatt absolutely LOVES wrestling with his Daddy. These two boys make me smile...
A Beautiful Bride dancing with her Little Brother...oh these two are just the best.
Dancing with His Cinderella...one day this day will be for real. Hard to believe our little girl has endured so much...
Camryn and Teddy...the class teddy bear from Room 1 at Village.
Fake beards and mustaches...this is what happens when Jason goes to the store. :)
Rocking the fake mustache...
Camryn working at her Kindergarten desk...she loves this desk!
Yummy 100th day cake.
Just 100th day fun...
So far September has been a fabulous month...coming up next...
WYATT's Birthday Monday!!!
Saturday, September 12, 2009
100
Day 100...What a day!
Hanging out at Jason's parents house to visit with Grandma and Auntie Dede.
Baking cookies with Auntie Ali.
Enjoying the fun of being home.
Dinner with Papa and Grandma.
Decorating a cake Mommy baked for Camryn.
Watching SC play football and win.
Thankful for 100 days...
Praying for many, many, many more!
***pictures to come soon***
Hanging out at Jason's parents house to visit with Grandma and Auntie Dede.
Baking cookies with Auntie Ali.
Enjoying the fun of being home.
Dinner with Papa and Grandma.
Decorating a cake Mommy baked for Camryn.
Watching SC play football and win.
Thankful for 100 days...
Praying for many, many, many more!
***pictures to come soon***
Friday, September 11, 2009
day +99...
Yesterday I wrote a post and sadly for me it didn't save and it didn't publish...so I have a few quick minutes and I will update as best I can.
Camryn had her second day of school yesterday and again she had nothing but great things to say. She is enjoying Ms.F coming to our home and working with her...I can hear them chatting and it is just so sweet for Camryn to have another contact in her isolated world. They spent time coloring, working on letters, talking about our family...oh, it's so fun for Camryn to have *her* thing. Something that has nothing to do with doctors, nurses or hospitals...because that has seemed to be *her* thing for so long.
Later in the afternoon Jason and I took Camryn to clinic to have Dr.A take a look at her rash...it has spread a little and it has become much more red so not wanting to take any chances and pretty much because Dr.A wanted to see it with his own eyes we headed to UCLA. As much as I hate fighting traffic on our early morning visits I would take that any day from the afternoon traffic...yuck! But, we got there and that's all that matters.
A fun little tidbit...when we got there I went to use the restroom and a darling lady came out of the stall and we made eye contact and smiled, didn't really think much of it. As I came out of the restroom I heard someone say my name, I turned around and it was the same darling lady. She introduced herself and wouldn't you know she is a friend of my sis-in-law and a fellow friend from the blog world. Small world isn't it. B, it was very nice to officially meet you...thank you for sharing your journey with me and thank you for your selflessness of giving.
We headed to Module 2 and met our usual friends...Berkley took a look at the rash and determined that it has gotten worse since the last time she saw it. So we chatted a bit and waited for Dr.A. Dr. A arrived and took a look at the rash thoroughly and determined that it was a GVH rash and that it was borderline on where they want it to be...meaning that we need to up her meds just a bit to keep it under control. I won't lie it's a bit nerve-racking as much of what we've heard about GVH is that it can get pretty intense pretty fast, but we completely trust Camryn's team of doctors and we know that they are doing everything they can in Camryn's case. Camryn's case is a bit of a delicate one in that she is a relapse after transplant patient...so they are taking every precaution and measure to do their best to treat Camryn so that a relapse never happens again. Yes, it's a crazy thin line...but, one that pretty much is inevitable.
Today is Day +99 so she's almost there her first real big milestone post-transplant...back in June when Camryn came home she was at Day+25...75 days have past and day by day she is getting there. It's never a race in this world of leukemia, transplants and such...but, little by little she's getting there...
100
Camryn had her second day of school yesterday and again she had nothing but great things to say. She is enjoying Ms.F coming to our home and working with her...I can hear them chatting and it is just so sweet for Camryn to have another contact in her isolated world. They spent time coloring, working on letters, talking about our family...oh, it's so fun for Camryn to have *her* thing. Something that has nothing to do with doctors, nurses or hospitals...because that has seemed to be *her* thing for so long.
Later in the afternoon Jason and I took Camryn to clinic to have Dr.A take a look at her rash...it has spread a little and it has become much more red so not wanting to take any chances and pretty much because Dr.A wanted to see it with his own eyes we headed to UCLA. As much as I hate fighting traffic on our early morning visits I would take that any day from the afternoon traffic...yuck! But, we got there and that's all that matters.
A fun little tidbit...when we got there I went to use the restroom and a darling lady came out of the stall and we made eye contact and smiled, didn't really think much of it. As I came out of the restroom I heard someone say my name, I turned around and it was the same darling lady. She introduced herself and wouldn't you know she is a friend of my sis-in-law and a fellow friend from the blog world. Small world isn't it. B, it was very nice to officially meet you...thank you for sharing your journey with me and thank you for your selflessness of giving.
We headed to Module 2 and met our usual friends...Berkley took a look at the rash and determined that it has gotten worse since the last time she saw it. So we chatted a bit and waited for Dr.A. Dr. A arrived and took a look at the rash thoroughly and determined that it was a GVH rash and that it was borderline on where they want it to be...meaning that we need to up her meds just a bit to keep it under control. I won't lie it's a bit nerve-racking as much of what we've heard about GVH is that it can get pretty intense pretty fast, but we completely trust Camryn's team of doctors and we know that they are doing everything they can in Camryn's case. Camryn's case is a bit of a delicate one in that she is a relapse after transplant patient...so they are taking every precaution and measure to do their best to treat Camryn so that a relapse never happens again. Yes, it's a crazy thin line...but, one that pretty much is inevitable.
Today is Day +99 so she's almost there her first real big milestone post-transplant...back in June when Camryn came home she was at Day+25...75 days have past and day by day she is getting there. It's never a race in this world of leukemia, transplants and such...but, little by little she's getting there...
100
Wednesday, September 9, 2009
first day of school...sweet times
A little girl dressed in her lavender shirt, flower print skirt and pretty lavender sandals eagerly waited on the front porch for her teacher...as her teacher approached her teacher said, "Are you my student?" to which she said, "Yes, are you my teacher?"...and thus the journey of Kindergarten began today for Camryn.
Ms.F came in and introduced herself to Camryn and the excitement continued...Ms.F was very sweet and Camryn took a liking to her immediately. As I was filling out the proper LAUSD paperwork Camryn was working on puzzles that Ms.F brought for her to work on. After the paperwork was done Camryn and Ms.F continued through the rest of the time working together...I was in the other room, but I could hear their conversation and it was sweet.
Camryn was certainly relishing it all...they made a little book and Ms.F worked on feeling out what Camryn knew and where they would be starting from. Ms.F was impressed with Camryn...which was nice to hear.
Tonight Camryn had some homework to do...writing some letters and such. What fun it was to see her today fully enjoying every second of life...to complete savor it and just love it all.
Tomorrow Ms.F will come again and from there will know our schedule for next week. We are very pleased with the program and the willingness to work with us and Camryn. Yes, this isn't what we planned for Camryn, but it was evident today that the Lord's been in this all along. We along with others have been praying for Camryn's teacher, that the Lord would bring the right person to heal a bit of the brokenness Camryn feels. And today...
I really believe a bit of healing took place for Camryn and we are so thankful.
Ms.F came in and introduced herself to Camryn and the excitement continued...Ms.F was very sweet and Camryn took a liking to her immediately. As I was filling out the proper LAUSD paperwork Camryn was working on puzzles that Ms.F brought for her to work on. After the paperwork was done Camryn and Ms.F continued through the rest of the time working together...I was in the other room, but I could hear their conversation and it was sweet.
Camryn was certainly relishing it all...they made a little book and Ms.F worked on feeling out what Camryn knew and where they would be starting from. Ms.F was impressed with Camryn...which was nice to hear.
Tonight Camryn had some homework to do...writing some letters and such. What fun it was to see her today fully enjoying every second of life...to complete savor it and just love it all.
Tomorrow Ms.F will come again and from there will know our schedule for next week. We are very pleased with the program and the willingness to work with us and Camryn. Yes, this isn't what we planned for Camryn, but it was evident today that the Lord's been in this all along. We along with others have been praying for Camryn's teacher, that the Lord would bring the right person to heal a bit of the brokenness Camryn feels. And today...
I really believe a bit of healing took place for Camryn and we are so thankful.
Tuesday, September 8, 2009
first day of school...tomorrow
Today was the first day of school for me and Jason...it was a long day. Both of us left for work feeling very disappointed as we had chatted many a time about Camryn's first day of Kindergarten and how Jason would go with us so he could be there for her big day. Well, that would have been today...I won't lie we both struggled a bit with letting go of that *plan*.
Yes, long ago we learned a very difficult lesson on plans...that they really don't matter. We can hope, wish, plan all we want and it really comes down to nothing. You see we've dreamed big dreams for our kids and have had to hand them over to the Lord time and time again...
And today we did it yet again...
We both made it through our days and I'm sure that the coming days will get easier as we adjust to our new routines. It's hard facing the challenges of a new year...feels so long ago that we were here again, believing in a great year ahead and then February came. I guess it just seems so unreal to be there again and believe again...
But we do and we are.
Today Camryn's teacher called to set up her first day...tomorrow! Camryn will meet her teacher and officially have her first day of school. She is excited beyond belief! She's been dancing around the house singing a little tune about meeting her teacher...honestly, she is SO excited! As the smile came to my face I realized something...
That the Lord's never left us...
Oh we're dreaming different dreams, our lives have taken turns we'd rather not have taken, we've had to resolve that we are not in control time and time again, we've had to let go...
Inasmuch as the Lord has carried Camryn through leukemia, two bone marrow transplants and throughout her days of recovery, He continues to carry her now. As I was talking with a friend of mine today she reminded me that God has something good in all of this for Camryn...that He will bless her in amazing ways. And really He will.
Because Camryn's journey isn't only about me and Jason...it truly is her journey. She has endured, accomplished, survived more than I ever thought possible and she is doing it even now.
All glory is His...forever and ever.
On the medical side of things Camryn's rash is spreading a bit, so we are heading to clinic on Thursday to have it looked at and maybe have her meds altered a bit. Other than itching the rash doesn't seem to bother Camryn, she has no other symptoms...and her energy is off the charts. This girl goes a hundred miles an hour...never looking back!
So tomorrow she starts another journey...school and we are so hopeful that this journey will be one of hope, restoration and renewal for Camryn. That maybe, hopefully she will begin to taste normal and just relish it...savor it.
After all she certainly deserves a little cherry on top...
Yes, long ago we learned a very difficult lesson on plans...that they really don't matter. We can hope, wish, plan all we want and it really comes down to nothing. You see we've dreamed big dreams for our kids and have had to hand them over to the Lord time and time again...
And today we did it yet again...
We both made it through our days and I'm sure that the coming days will get easier as we adjust to our new routines. It's hard facing the challenges of a new year...feels so long ago that we were here again, believing in a great year ahead and then February came. I guess it just seems so unreal to be there again and believe again...
But we do and we are.
Today Camryn's teacher called to set up her first day...tomorrow! Camryn will meet her teacher and officially have her first day of school. She is excited beyond belief! She's been dancing around the house singing a little tune about meeting her teacher...honestly, she is SO excited! As the smile came to my face I realized something...
That the Lord's never left us...
Oh we're dreaming different dreams, our lives have taken turns we'd rather not have taken, we've had to resolve that we are not in control time and time again, we've had to let go...
Inasmuch as the Lord has carried Camryn through leukemia, two bone marrow transplants and throughout her days of recovery, He continues to carry her now. As I was talking with a friend of mine today she reminded me that God has something good in all of this for Camryn...that He will bless her in amazing ways. And really He will.
Because Camryn's journey isn't only about me and Jason...it truly is her journey. She has endured, accomplished, survived more than I ever thought possible and she is doing it even now.
All glory is His...forever and ever.
On the medical side of things Camryn's rash is spreading a bit, so we are heading to clinic on Thursday to have it looked at and maybe have her meds altered a bit. Other than itching the rash doesn't seem to bother Camryn, she has no other symptoms...and her energy is off the charts. This girl goes a hundred miles an hour...never looking back!
So tomorrow she starts another journey...school and we are so hopeful that this journey will be one of hope, restoration and renewal for Camryn. That maybe, hopefully she will begin to taste normal and just relish it...savor it.
After all she certainly deserves a little cherry on top...
Monday, September 7, 2009
long weekend fun
Oh the sun is setting on the glories of summer...right now I am looking out our front window as the sky is turning to dusk and the daylight of summer days is fading. Yes, I know officially summer does not end year according to the seasonal calendar, but for the Mikels household...this weekend was the last taste.
Saturday we spent the day cleaning and getting the last things in order before work comes along and adds a twist to our routine. We also watched some college football which just was wonderful. That evening we met our friends K&T for dinner out...it was so nice to hang out with them, they are the best and we so enjoy our time spent with them.
Sunday we finished up the cleaning and then Jason's parents came over for dinner and visit. We had a very nice time hanging out with them, it was nice for Camryn and Wyatt to see them too. I'll be honest Camryn's isolation proves to throw a kink in the family gatherings and it's hard. We miss our times with Jason's family and all the cousins playing together...it will come soon, we just miss it so much. Jason's brother Travis and his wife Ali came over to visit as well and it was great catching up with them and hearing about their first month of marriage...Camryn had a blast playing with Ali, she certainly enjoys her new Auntie!
Today we ran some errands and get some things for Wyatt's birthday party and just spent time together. Right now Camryn and Wyatt are creating amazing Play-doh creations and enjoying the evening together. Oh how I cherish the moments of listening in on their conversations...they are too funny!
We have had a very blessed summer...really for what it could have been it has been much better than we could have imagined.
* June was spent in the hospital...
* We came home by July...enjoyed a fun month of being home and pretty uneventful medical issues, which is always a blessing. Wyatt was successfully potty trained!
* August was Uncle T's wedding...birthdays...more great medical reports.
It was an isolated summer...no swim parties, no backyard BBQs, no real outings with friends...but, it was simply wonderful. To be at the beginning of summer and wonder if your little girl would pull through it all? Would your little guy by okay with surgery? How long would you live divided lives? All that circled around you was incredible unknowns and daily battles to wait, believe and hope....to stand three months later with Camryn doing well, Wyatt almost three and living day by day believing the best is to come...
Simply it is a gift...thank you Lord for the blessings of this summer and the hope of the fall to come.
Saturday we spent the day cleaning and getting the last things in order before work comes along and adds a twist to our routine. We also watched some college football which just was wonderful. That evening we met our friends K&T for dinner out...it was so nice to hang out with them, they are the best and we so enjoy our time spent with them.
Sunday we finished up the cleaning and then Jason's parents came over for dinner and visit. We had a very nice time hanging out with them, it was nice for Camryn and Wyatt to see them too. I'll be honest Camryn's isolation proves to throw a kink in the family gatherings and it's hard. We miss our times with Jason's family and all the cousins playing together...it will come soon, we just miss it so much. Jason's brother Travis and his wife Ali came over to visit as well and it was great catching up with them and hearing about their first month of marriage...Camryn had a blast playing with Ali, she certainly enjoys her new Auntie!
Today we ran some errands and get some things for Wyatt's birthday party and just spent time together. Right now Camryn and Wyatt are creating amazing Play-doh creations and enjoying the evening together. Oh how I cherish the moments of listening in on their conversations...they are too funny!
We have had a very blessed summer...really for what it could have been it has been much better than we could have imagined.
* June was spent in the hospital...
* We came home by July...enjoyed a fun month of being home and pretty uneventful medical issues, which is always a blessing. Wyatt was successfully potty trained!
* August was Uncle T's wedding...birthdays...more great medical reports.
It was an isolated summer...no swim parties, no backyard BBQs, no real outings with friends...but, it was simply wonderful. To be at the beginning of summer and wonder if your little girl would pull through it all? Would your little guy by okay with surgery? How long would you live divided lives? All that circled around you was incredible unknowns and daily battles to wait, believe and hope....to stand three months later with Camryn doing well, Wyatt almost three and living day by day believing the best is to come...
Simply it is a gift...thank you Lord for the blessings of this summer and the hope of the fall to come.
Friday, September 4, 2009
three months
Tonight as I sit and reflect on the calendar one thing cannot escape my eyes...
9.04.09...three months since 6.04.09
Transplant was three months ago and oh what a journey it's been. Grateful, thankful and speechless at the Lord's unending graciousness to us.
His grace through every moment sustains...
Yay, for three months and hopeful for many more!
9.04.09...three months since 6.04.09
Transplant was three months ago and oh what a journey it's been. Grateful, thankful and speechless at the Lord's unending graciousness to us.
His grace through every moment sustains...
Yay, for three months and hopeful for many more!
gvh...sweet things
Today it was confirmed that the rash on Camryn's tummy and back is GVH (graft vs. host)...so steriods were prescribed and thus begins our steroid journey. As we were reminded today a little GVH is okay...in fact it's good in little doses. So we are thankful...means that Wyatt's marrow is still searching and destroying all things that should not be in Camryn's system. The plan is to keep it under control with steroids and not let it get too out of control.
Really it is a good sign that Camryn is having some GVH, means that the graft is still setting up shop and doing its job...so we'll celebrate that. And we'll pray that the Lord continues to hold Cam is His hands throughout this process.
We'll keep you posted, but for now we'll start our steroids and hope that the side effects aren't too bad.
After clinic we headed up to Village to have a very special time...Mrs.L who most likely would have been Camryn's Kindergarten teacher is a dear friend of our family, she's followed Camryn's journey from the very beginning made time to meet Camryn. One of Camryn's desires was to meet Mrs.L even though she was not going to be in her class this year. I talked with Mrs.L and we arranged a time for Camryn to come and meet her lie the other children get to do...today was our time. Mrs.L had a little packet of goodies waiting for Camryn and let me say that it made Camryn feel so incredibly special...just amazing.
Camryn has not stopped looking at the goodies, working on coloring pages, practicing her letters...all of it! She is just LOVING it!
I am speechless by Mrs.L's gracious and kind heart...she is truly a very special lady and we are so thankful for her care of our dear little girl even if she isn't officially in her class...Thank you Mrs.L!
This weekend marks our last weekend before the madness of school begins again...we are going to do a lot of just hanging out which is good. Tomorrow college football really begins and those of you that know me well know that this is my "most wonderful time of the year"...I love it!
The Lord met us today in very real ways and we are so thankful...He never ceases to remind me that in the midst of the hurt and heartache that Camryn feels that He loves her so...that she is His. And He knows what leukemia has taken from her and in His time He will redeem and restore it to her...
For He will meet her little heart in amazing ways and He will continue to heal her physically as well as emotionally one moment at a time.
After all she is His sweet girl...
Really it is a good sign that Camryn is having some GVH, means that the graft is still setting up shop and doing its job...so we'll celebrate that. And we'll pray that the Lord continues to hold Cam is His hands throughout this process.
We'll keep you posted, but for now we'll start our steroids and hope that the side effects aren't too bad.
After clinic we headed up to Village to have a very special time...Mrs.L who most likely would have been Camryn's Kindergarten teacher is a dear friend of our family, she's followed Camryn's journey from the very beginning made time to meet Camryn. One of Camryn's desires was to meet Mrs.L even though she was not going to be in her class this year. I talked with Mrs.L and we arranged a time for Camryn to come and meet her lie the other children get to do...today was our time. Mrs.L had a little packet of goodies waiting for Camryn and let me say that it made Camryn feel so incredibly special...just amazing.
Camryn has not stopped looking at the goodies, working on coloring pages, practicing her letters...all of it! She is just LOVING it!
I am speechless by Mrs.L's gracious and kind heart...she is truly a very special lady and we are so thankful for her care of our dear little girl even if she isn't officially in her class...Thank you Mrs.L!
This weekend marks our last weekend before the madness of school begins again...we are going to do a lot of just hanging out which is good. Tomorrow college football really begins and those of you that know me well know that this is my "most wonderful time of the year"...I love it!
The Lord met us today in very real ways and we are so thankful...He never ceases to remind me that in the midst of the hurt and heartache that Camryn feels that He loves her so...that she is His. And He knows what leukemia has taken from her and in His time He will redeem and restore it to her...
For He will meet her little heart in amazing ways and He will continue to heal her physically as well as emotionally one moment at a time.
After all she is His sweet girl...
Thursday, September 3, 2009
"it just stinks"
I wish I could say that this has been a wonderful week in our household, but really it's been hard. Heading back to school has proved more difficult than I thought and for reasons that I never expected. Plus, all the Back to School stuff is just making life hard on Camryn.
Tonight she just cried and cried because she does not understand why she can't go...it is so hard for her to wrap her mind around it, she's 5. And if I'm honest I struggle to understand it too...
I mean I get it medically, of course I do. We are in isolation again, we have to avoid large crowds, situations that can compromise Camryn's immune system...we totally understand that.
But what I don't understand is how much Camryn has lost or had changed because of leukemia.
So tonight as tears fell from her eyes and Jason and I took turns consoling her broken heart...she turns and says, "it just stinks."
And it does...
Thankful for the little helps along the way...
For the countless people who are praying for Camryn and her teacher. We should be hearing from them either this week or next week.
For the people who say kind words knowing that watching little kids go to school rips my heart in two.
For Mrs.L who is mending a little girl's heart in such gracious ways.
Thank you!
_________________
On the medical front...on Wednesday we noticed a rash developing on Camryn's stomach and her back. We called UCLA and they said to watch it and come to clinic early on Friday to check it out. Pretty much looks like classic GVH (graft vs. host) so it is sort of a good thing. Remember with Camryn that her doctors want her to have a little...so we'll head down and see if they want to give her some meds so it doesn't get any worse, or just watch it. Camryn is free from any other symptoms so she's doing well...but, as always your prayers are greatly appreciated!
Thanks faithful followers...
Tonight she just cried and cried because she does not understand why she can't go...it is so hard for her to wrap her mind around it, she's 5. And if I'm honest I struggle to understand it too...
I mean I get it medically, of course I do. We are in isolation again, we have to avoid large crowds, situations that can compromise Camryn's immune system...we totally understand that.
But what I don't understand is how much Camryn has lost or had changed because of leukemia.
So tonight as tears fell from her eyes and Jason and I took turns consoling her broken heart...she turns and says, "it just stinks."
And it does...
Thankful for the little helps along the way...
For the countless people who are praying for Camryn and her teacher. We should be hearing from them either this week or next week.
For the people who say kind words knowing that watching little kids go to school rips my heart in two.
For Mrs.L who is mending a little girl's heart in such gracious ways.
Thank you!
_________________
On the medical front...on Wednesday we noticed a rash developing on Camryn's stomach and her back. We called UCLA and they said to watch it and come to clinic early on Friday to check it out. Pretty much looks like classic GVH (graft vs. host) so it is sort of a good thing. Remember with Camryn that her doctors want her to have a little...so we'll head down and see if they want to give her some meds so it doesn't get any worse, or just watch it. Camryn is free from any other symptoms so she's doing well...but, as always your prayers are greatly appreciated!
Thanks faithful followers...
Tuesday, September 1, 2009
september
Day +89 brings the coming of September...in a few days we will mark 3 months since Camryn's bone marrow transplant.
September...in May when we began the transplant process September felt like the furthest thing away. Maybe we would get there...Who knew what our lives would look like. But the calendar never fails to push on...
And so September comes and brings a huge milestone for Camryn in her 100th day on the 12th.
But really September is forever etched with the coming of Wyatt Jason on the 14th...what a cherished day.
So September comes again...
Thankful to be here and with Camryn and Wyatt doing so well...and hopeful for the coming days, weeks and months.
Oh September...what do you have for us?
September...in May when we began the transplant process September felt like the furthest thing away. Maybe we would get there...Who knew what our lives would look like. But the calendar never fails to push on...
And so September comes and brings a huge milestone for Camryn in her 100th day on the 12th.
But really September is forever etched with the coming of Wyatt Jason on the 14th...what a cherished day.
So September comes again...
Thankful to be here and with Camryn and Wyatt doing so well...and hopeful for the coming days, weeks and months.
Oh September...what do you have for us?
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