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!
Subscribe to:
Posts (Atom)
