Well, it seems that if all goes as planned today Camryn should be able to go home on Sunday morning. Today we have scheduled her fifth arsenic treatment, a blood transfusion, being transferred to oral pain meds and no fevers. That's our day in a nutshell...oh and countless trips to the bathroom as the IV fluids run through her so quickly.
I was disappointed today to not be able to go home...
I was hopeful as I drove down to UCLA today that we'd be home, for one complete day without having to deal with hospitals and our medical life...but, that was not to be.
Camryn needs to stay another day and my mind totally gets that...but, my heart is sad today. As I look out her window and see the sunshine and cars coming and going I wonder how our lives changed so quickly...
Today I was going to have a spa day with my girlfriends...instead I'm watching the Disney Channel and watching the clock tick ever so slowly. I guess we'll just wait on Sunday and pray that tomorrow we can head home...and start our out-patient life.
Please pray that today goes well...and that tomorrow we'll get the go to head home. It's hard to be here...but we will continue to wait on Sunday.
Saturday, February 28, 2009
Friday, February 27, 2009
one week down...
Honestly, I cannot even believe Camryn has been in the hospital for one week now...last Friday seems so incredibly long ago. And yet, in some ways it seems just like yesterday.
Our week started out rough, but the last two days have been pretty good all things considering. I mean we are still living in the hospital, but as hospital life goes things have been moving along well.
So far Camryn's had four arsenic treatments and she has done wonderfully...no side effects, no problems with her daily ekgs. She seems to be making progress in the right direction. The doctors told us today that her clotting factors...the very factors that were completely a mess last Friday causing us to be admitted early...are in fact leveling out and doing much better. In fact Dr. K mentioned today that she had anticipated by Camryn's levels last Friday that she was going to need a lot of blood products over the course of the week just to stabilize her levels. Well, Camryn has done really well...she has not needed any further clotting products and only a few transfusions earlier this week.
Camryn has also been fever free for the last two days causing the doctors to stop all her antibiotics and see if she can stay fever free...this is a our prayer, that she can be fever free for twenty-four hours off of antibiotics.
Tonight Jason is hanging out with his best girl Camryn and I am home with my best boy Wyatt...it's hard to be away; but being home with Wyatt is a welcomed change of pace. It's nice to be with Wyatt...to run errands, eat dinner and just be with him for a bit. He's a ball of energy and it's fun to have some interactions with him. Wyatt honestly provides me smiles...smiles that my heart needs.
This time around fighting leukemia is different on so many levels...we are learning again to change Camryn's line, although at four she is much more vocal than 2. I guess that's the biggest learning curve for us...learning to navigate this with a little one with opinions, thoughts and feelings that she shares ever so loudly at times. We are learning...all four of us, to take the day before us and we try not to get too far ahead or our minds start spinning. Wyatt is now a lot older too...not that he understands everything, but he says "Camryn at the doctor she have a big booboo." Yes, this time around we are encountering all this differently and yet very much the same.
We are hopeful that Camryn will be home either tomorrow or Sunday morning...that's our prayer now. And then we are set up to start out-patient treatments bright and early Monday morning...we are so thankful for our out-patient status. To be home for these few weeks before transplant is such a treasure to me.
My mommy's heart has a lot to sort out and to be honest this last week I had my ups and downs. The moments when I didn't think I could take a step and moments when it almost seemed as if we were back in 2006 and nothing had changed. Tears have flowed freely and yet...I do not feel overcome. I do not feel as through we are beat...no I feel very hopeful in the circumstances we find ourselves...Hope for another day, after all I can't get much further than that.
I was reminded today about a dvd I absolutely love...the greatness of God. How intimately the Lord knows us as His children...I was struck with a thought: I always have believed on a very intellectual level that the Lord loves my children, but today I was struck with the ideas of how intimately He knows Camryn and Wyatt...
He knows that Camryn is in pain...He knows that she hates IV pokes...He knows that she loves the color yellow...He knows a horrible disease is running through her body...He knows that she lost her hair before and she will again...He made those beautiful blue eyes...He made her heart, her spirit, her smile...Inasmuch as Camryn is mine and Jason's daughter she was His first and oh how He loves her.
He too knows that Wyatt is without his sidekick...He knows that Wyatt loves his trains and cars, but not half as much as his sister...He knows that Wyatt is being juggled by Jason, grandparents and me...He knows that precious bone marrow...After all He knit Wyatt together in my womb...He knew these times would come...He knows the hairs on Wyatt's head...Inasmuch as Wyatt is Camryn's lifetime donor he was the Lord's child first, and the Lord's love for Wyatt runs deep.
He knows our Mikels family hurt this next week...the week we welcomed our precious Blake and Ethan and the week we had to say good-bye much too soon. He knows how our hearts ache for Rob, Devon and Riley...He knows that we long for Blake and Ethan, but we rest in the hope of eternity. He knows how my eyes well with tears as I miss those boys and how much I ache for their mommy...
Yes, that is what this week has taught me...that I am angry at times, I am confused, I am sad, I am lonely, I am...all the emotions that any parent would feel when they watch their little one suffer. And yet I cling to the love of my Father for not only me, my husband, but my children.
After one week down...His love hasn't changed. May we rest tonight in His love and wake tomorrow to the newness of a new day to understand the depth of His love a little more.
Our week started out rough, but the last two days have been pretty good all things considering. I mean we are still living in the hospital, but as hospital life goes things have been moving along well.
So far Camryn's had four arsenic treatments and she has done wonderfully...no side effects, no problems with her daily ekgs. She seems to be making progress in the right direction. The doctors told us today that her clotting factors...the very factors that were completely a mess last Friday causing us to be admitted early...are in fact leveling out and doing much better. In fact Dr. K mentioned today that she had anticipated by Camryn's levels last Friday that she was going to need a lot of blood products over the course of the week just to stabilize her levels. Well, Camryn has done really well...she has not needed any further clotting products and only a few transfusions earlier this week.
Camryn has also been fever free for the last two days causing the doctors to stop all her antibiotics and see if she can stay fever free...this is a our prayer, that she can be fever free for twenty-four hours off of antibiotics.
Tonight Jason is hanging out with his best girl Camryn and I am home with my best boy Wyatt...it's hard to be away; but being home with Wyatt is a welcomed change of pace. It's nice to be with Wyatt...to run errands, eat dinner and just be with him for a bit. He's a ball of energy and it's fun to have some interactions with him. Wyatt honestly provides me smiles...smiles that my heart needs.
This time around fighting leukemia is different on so many levels...we are learning again to change Camryn's line, although at four she is much more vocal than 2. I guess that's the biggest learning curve for us...learning to navigate this with a little one with opinions, thoughts and feelings that she shares ever so loudly at times. We are learning...all four of us, to take the day before us and we try not to get too far ahead or our minds start spinning. Wyatt is now a lot older too...not that he understands everything, but he says "Camryn at the doctor she have a big booboo." Yes, this time around we are encountering all this differently and yet very much the same.
We are hopeful that Camryn will be home either tomorrow or Sunday morning...that's our prayer now. And then we are set up to start out-patient treatments bright and early Monday morning...we are so thankful for our out-patient status. To be home for these few weeks before transplant is such a treasure to me.
My mommy's heart has a lot to sort out and to be honest this last week I had my ups and downs. The moments when I didn't think I could take a step and moments when it almost seemed as if we were back in 2006 and nothing had changed. Tears have flowed freely and yet...I do not feel overcome. I do not feel as through we are beat...no I feel very hopeful in the circumstances we find ourselves...Hope for another day, after all I can't get much further than that.
I was reminded today about a dvd I absolutely love...the greatness of God. How intimately the Lord knows us as His children...I was struck with a thought: I always have believed on a very intellectual level that the Lord loves my children, but today I was struck with the ideas of how intimately He knows Camryn and Wyatt...
He knows that Camryn is in pain...He knows that she hates IV pokes...He knows that she loves the color yellow...He knows a horrible disease is running through her body...He knows that she lost her hair before and she will again...He made those beautiful blue eyes...He made her heart, her spirit, her smile...Inasmuch as Camryn is mine and Jason's daughter she was His first and oh how He loves her.
He too knows that Wyatt is without his sidekick...He knows that Wyatt loves his trains and cars, but not half as much as his sister...He knows that Wyatt is being juggled by Jason, grandparents and me...He knows that precious bone marrow...After all He knit Wyatt together in my womb...He knew these times would come...He knows the hairs on Wyatt's head...Inasmuch as Wyatt is Camryn's lifetime donor he was the Lord's child first, and the Lord's love for Wyatt runs deep.
He knows our Mikels family hurt this next week...the week we welcomed our precious Blake and Ethan and the week we had to say good-bye much too soon. He knows how our hearts ache for Rob, Devon and Riley...He knows that we long for Blake and Ethan, but we rest in the hope of eternity. He knows how my eyes well with tears as I miss those boys and how much I ache for their mommy...
Yes, that is what this week has taught me...that I am angry at times, I am confused, I am sad, I am lonely, I am...all the emotions that any parent would feel when they watch their little one suffer. And yet I cling to the love of my Father for not only me, my husband, but my children.
After one week down...His love hasn't changed. May we rest tonight in His love and wake tomorrow to the newness of a new day to understand the depth of His love a little more.
Thursday, February 26, 2009
smile...
No trip to the hospital is complete without camera in hand...yes, it's hard to snap pictures of everything, but honestly...we like to "see" how far we've come.
Here's a few from this week:
The Dynamic Duo
Our Little Fighter
Cheese
Just Living Hospital Life
Looking At The Outside World
This is our life...Camryn is doing well. She is tolerating her arsenic well and so far we are still on track to go home Saturday after her treatment. Camryn's nurse practitioner came by today to chat and let us know that Camryn was all set up to start as an out-patient on Monday in clinic. Please pray that the next few days go well and we can get home and get into our new routine of an out-patient, before we have to begin our transplant life...transplant life is roughly 5 weeks away.
We are getting through our days, one step at a time and thankfully the clock keeps ticking so we're getting through the week. Hard to believe tomorrow will mark one week...Camryn's hanging in there as is Wyatt.
Thank you for praying...please continue...we've got a long road ahead, but we're taking it one step at a time.
Here's a few from this week:
The Dynamic Duo
Our Little Fighter
Cheese
Just Living Hospital Life
Looking At The Outside World
This is our life...Camryn is doing well. She is tolerating her arsenic well and so far we are still on track to go home Saturday after her treatment. Camryn's nurse practitioner came by today to chat and let us know that Camryn was all set up to start as an out-patient on Monday in clinic. Please pray that the next few days go well and we can get home and get into our new routine of an out-patient, before we have to begin our transplant life...transplant life is roughly 5 weeks away.
We are getting through our days, one step at a time and thankfully the clock keeps ticking so we're getting through the week. Hard to believe tomorrow will mark one week...Camryn's hanging in there as is Wyatt.
Thank you for praying...please continue...we've got a long road ahead, but we're taking it one step at a time.
Wednesday, February 25, 2009
answers...blessings
Many people have asked us various questions in regards to Camryn's battle with leukemia the first and now second time. Questions about Wyatt's cord blood donation and now his pending bone marrow donation. Questions ranging from what happened to what will happen? Lots of questions and truly, I don't mind them so much if I keep the answers on an intellectual level and my heart out of it. When my heart starts pondering the answers it tends to get a bit messy. But, I thought I would try to answer some of the questions, not nearly all of them...but the few that we get most often...
* Is it the same leukemia? Is the treatment the same? What in the world is arsenic anyway?...Yes, it is the same leukemia. Acute Promyelocytic Leukemia...that was our foe 3 years ago and it's still our foe today. Treatment...yes and no it is the same. Camryn underwent arsenic treatment roughly 2 1/2 years ago and she is receiving it now. Arsenic (yes, rat poison) is a type of targeted chemotherapy, which targets Camryn's leukemia cells and causes them to die; and yet leaves her other cells alone. Wonderful stuff...truly, it is amazing.
* Cord blood vs. Bone Marrow...This seems to be the biggest question. Why not cord blood again? Well, truthfully we don't have enough left of Wyatt's cord blood from the first time. And honestly since we have the donor in our midst the doctors feel that this time Wyatt's bone marrow will be better. As in Wyatt's white cells are more mature than cord blood and what we need this time is Wyatt's white cells to attack Camryn's leukemia cells and beat them. We need a little war to rage within Camryn's body and we need Wyatt to come out on top. While this little war rages (graft vs. host disease) Camryn's doctors ever so gently and carefully maneuver her medications to keep this war from getting out of control...yes, it is a very and I mean very delicate process.
* What happened?...or more like What went wrong? The answer nothing. Camryn's first bone marrow transplant went super, in fact 2 1/2 years super. There are no guarantees in this cancer world we find ourselves...there is no 100% cured. Because that cursed stuff lurks...it waits, it hides and sometimes all it takes is one cell. One blasted cell to remain and sit in the shadows until one day something triggers it and it's back. So, truthfully nothing went wrong...we just have to try this time to kill them all...to let Wyatt's juice work it's magic. And since it did it once it can do it again...
Well, that's about all the intellectual medical jargon I can take...now, to the "real" life stuff.
Camryn's had a couple really good days now...what an amazing blessing to us. Now, she's not bouncing off the walls or anything, but she's doing. She's playing, chatting, interacting and just showing signs that progress is being made.
Yesterday evening as I was watching Camryn nap...and just reading a book to pass the moments a friendly face appeared...Dr. M. He pulled up a chair and just talked...he called it a social visit as he is not on rotation this week. We talked about the future treatments...we shared the news of the day. I cried...he encouraged and I found such comfort with him there. He assured me that he is praying for Camryn...seriously, this doctor just leaves me speechless at times. I asked him if he saw this coming and he said no...seemingly as devastated by all of this as we are. He went on to say that we are like family...we are walking dark roads together and we see the good and the bad, the joys and the sorrows and yet we don't let go. We hold on and we pray for the Lord's guidance and peace for each day. Yes, that was not an accident that Dr. M stopped by...that was a sweet blessing from the Lord with my name on it...Dana needs this...
Today Camryn had a nice day...a few visitors stopped by which is always fun for her. Of course the highlight again was Wyatt showing up...man does she love that little guy. She enjoyed playing with T & C and Grandpa & Papa...she enjoyed getting out of her bed and sitting in a chair for awhile. (Yes, that's a big accomplishment)...she was feeling better today. Which in our world of one day at a time we savor. Just an added blessing...for friends and family.
One little fun highlight of the day was a group called Flashes of Hope that came to the hospital to take photos of the kids...I had seen a little bit about them in one of my parenting magazines and thought it seemed cool. One of those wish we'd done that with Camryn back in 2006...well, I guess it was foreshadowing, because we got to do that today. How very special it made Camryn feel...and when your child is battling cancer you realize that there are times when they just need to feel special. Another cool blessing...
For D and Ry to come hang out with me and Wy tonight...to talk and be together was so neat for Wyatt and me. How blessed we were to have you...
And now for the cutest comment of the day...Camryn and I were sitting in her room watching television when she says, "Mom, when I get better and go home I need to make some cookies or cupcakes or something to bring back to the nurses and doctors to say thank you."...Honestly, what 4 year old thinks like that? Camryn...
As I watched Camryn & Wyatt today I couldn't help but feel blessed...even though my heart is broken to watch Camryn battle all of this again...even though I cry tears over and over...I know that the Lord continues to give us enough for today. Oh, I have many questions that are left without answers...and we have many blessings...
* Is it the same leukemia? Is the treatment the same? What in the world is arsenic anyway?...Yes, it is the same leukemia. Acute Promyelocytic Leukemia...that was our foe 3 years ago and it's still our foe today. Treatment...yes and no it is the same. Camryn underwent arsenic treatment roughly 2 1/2 years ago and she is receiving it now. Arsenic (yes, rat poison) is a type of targeted chemotherapy, which targets Camryn's leukemia cells and causes them to die; and yet leaves her other cells alone. Wonderful stuff...truly, it is amazing.
* Cord blood vs. Bone Marrow...This seems to be the biggest question. Why not cord blood again? Well, truthfully we don't have enough left of Wyatt's cord blood from the first time. And honestly since we have the donor in our midst the doctors feel that this time Wyatt's bone marrow will be better. As in Wyatt's white cells are more mature than cord blood and what we need this time is Wyatt's white cells to attack Camryn's leukemia cells and beat them. We need a little war to rage within Camryn's body and we need Wyatt to come out on top. While this little war rages (graft vs. host disease) Camryn's doctors ever so gently and carefully maneuver her medications to keep this war from getting out of control...yes, it is a very and I mean very delicate process.
* What happened?...or more like What went wrong? The answer nothing. Camryn's first bone marrow transplant went super, in fact 2 1/2 years super. There are no guarantees in this cancer world we find ourselves...there is no 100% cured. Because that cursed stuff lurks...it waits, it hides and sometimes all it takes is one cell. One blasted cell to remain and sit in the shadows until one day something triggers it and it's back. So, truthfully nothing went wrong...we just have to try this time to kill them all...to let Wyatt's juice work it's magic. And since it did it once it can do it again...
Well, that's about all the intellectual medical jargon I can take...now, to the "real" life stuff.
Camryn's had a couple really good days now...what an amazing blessing to us. Now, she's not bouncing off the walls or anything, but she's doing. She's playing, chatting, interacting and just showing signs that progress is being made.
Yesterday evening as I was watching Camryn nap...and just reading a book to pass the moments a friendly face appeared...Dr. M. He pulled up a chair and just talked...he called it a social visit as he is not on rotation this week. We talked about the future treatments...we shared the news of the day. I cried...he encouraged and I found such comfort with him there. He assured me that he is praying for Camryn...seriously, this doctor just leaves me speechless at times. I asked him if he saw this coming and he said no...seemingly as devastated by all of this as we are. He went on to say that we are like family...we are walking dark roads together and we see the good and the bad, the joys and the sorrows and yet we don't let go. We hold on and we pray for the Lord's guidance and peace for each day. Yes, that was not an accident that Dr. M stopped by...that was a sweet blessing from the Lord with my name on it...Dana needs this...
Today Camryn had a nice day...a few visitors stopped by which is always fun for her. Of course the highlight again was Wyatt showing up...man does she love that little guy. She enjoyed playing with T & C and Grandpa & Papa...she enjoyed getting out of her bed and sitting in a chair for awhile. (Yes, that's a big accomplishment)...she was feeling better today. Which in our world of one day at a time we savor. Just an added blessing...for friends and family.
One little fun highlight of the day was a group called Flashes of Hope that came to the hospital to take photos of the kids...I had seen a little bit about them in one of my parenting magazines and thought it seemed cool. One of those wish we'd done that with Camryn back in 2006...well, I guess it was foreshadowing, because we got to do that today. How very special it made Camryn feel...and when your child is battling cancer you realize that there are times when they just need to feel special. Another cool blessing...
For D and Ry to come hang out with me and Wy tonight...to talk and be together was so neat for Wyatt and me. How blessed we were to have you...
And now for the cutest comment of the day...Camryn and I were sitting in her room watching television when she says, "Mom, when I get better and go home I need to make some cookies or cupcakes or something to bring back to the nurses and doctors to say thank you."...Honestly, what 4 year old thinks like that? Camryn...
As I watched Camryn & Wyatt today I couldn't help but feel blessed...even though my heart is broken to watch Camryn battle all of this again...even though I cry tears over and over...I know that the Lord continues to give us enough for today. Oh, I have many questions that are left without answers...and we have many blessings...
Monday, February 23, 2009
patience
Today had been a day of much anticipation...Camryn was supposed to go into surgery for her line at 3pm and then start her arsenic treatment, well...remember that we are now expecting the unexpected? That was today.
Camryn did not get into surgery until 7pm...yes, four hours later. An emergency came up and they needed to bump Camryn...which we understand as adults, but try explaining that to a 4 year old who had not eaten anything until 7:00 this morning. She was cranky and her IVs were not drawing blood very well and it seemed as if things were just getting worse and worse. I won't lie...the tears seemed to come today. Just seeing Camryn uncomfortable, in pain, cranky, angry and about everything other emotion a 4 year old with leukemia can have...nearly broken me in two. I'm not sure how to do this again...I mean my mind does, but my heart is finding it harder and harder.
After waiting 2 hours in the surgery waiting room...they called and we went to see Camryn in recovery. We waited with her in recovery for an hour and finally we were able to head back upstairs to our room to get settled back in...Camryn is doing well now. Still cranky and just upset...but, her central line is placed and that means no more pokes! Praise the Lord, one hurdle crossed.
Since her surgery was so late she will not be starting her arsenic tonight and will start it tomorrow hopefully in the morning...that bumps us back a day, but we are hopeful that all will go well and we will still be on track for doing 5 days in patient and the rest as an out patient.
Camryn also had a lumbar puncture while in surgery to check for leukemia cells in her spinal fluid...thankfully, no leukemia cells were found.
Thank for the many prayers and comments people literally all over the world have left us...we thank you. We thank you for lifting our little girl up in prayer. We know there is no greater act than to lift her up to the Father.
Jason and I are doing well...learning how to navigate these feelings and such again. Honestly, it is sort of like riding a bike...you never forget. You never forget the little tricks that you learn...the little things that novice parents would never know except from experience. I guess there is a blessing hiding in there somewhere...
We are tired...it's 11:30pm, but our little fighter is almost asleep and hopefully won't be bothered for awhile...so it's off to try to get some rest too.
Praying to be renewed tomorrow with peace and strength for another day...
Camryn did not get into surgery until 7pm...yes, four hours later. An emergency came up and they needed to bump Camryn...which we understand as adults, but try explaining that to a 4 year old who had not eaten anything until 7:00 this morning. She was cranky and her IVs were not drawing blood very well and it seemed as if things were just getting worse and worse. I won't lie...the tears seemed to come today. Just seeing Camryn uncomfortable, in pain, cranky, angry and about everything other emotion a 4 year old with leukemia can have...nearly broken me in two. I'm not sure how to do this again...I mean my mind does, but my heart is finding it harder and harder.
After waiting 2 hours in the surgery waiting room...they called and we went to see Camryn in recovery. We waited with her in recovery for an hour and finally we were able to head back upstairs to our room to get settled back in...Camryn is doing well now. Still cranky and just upset...but, her central line is placed and that means no more pokes! Praise the Lord, one hurdle crossed.
Since her surgery was so late she will not be starting her arsenic tonight and will start it tomorrow hopefully in the morning...that bumps us back a day, but we are hopeful that all will go well and we will still be on track for doing 5 days in patient and the rest as an out patient.
Camryn also had a lumbar puncture while in surgery to check for leukemia cells in her spinal fluid...thankfully, no leukemia cells were found.
Thank for the many prayers and comments people literally all over the world have left us...we thank you. We thank you for lifting our little girl up in prayer. We know there is no greater act than to lift her up to the Father.
Jason and I are doing well...learning how to navigate these feelings and such again. Honestly, it is sort of like riding a bike...you never forget. You never forget the little tricks that you learn...the little things that novice parents would never know except from experience. I guess there is a blessing hiding in there somewhere...
We are tired...it's 11:30pm, but our little fighter is almost asleep and hopefully won't be bothered for awhile...so it's off to try to get some rest too.
Praying to be renewed tomorrow with peace and strength for another day...
Sunday, February 22, 2009
in the midst
Interesting how in the midst of the very circumstance you find yourself the Lord reminds you that He is bigger...He holds all of this in His hands. Even though I don't understand and at times I'm left with tears trying to find peace...He meets me there.
Today Camryn really struggled, she is having severe leg pain and just really uncomfortable. Thankfully they have her on some pain meds now and that seems to be helping. She was very irritable and grouchy today...which I don't blame her for. If I had leukemia raging in my body I can't say I'd be Little Miss Sunshine either. Camryn is tired...if you could pray that she can get a good night's sleep tonight with her Daddy with her. That she'd be peaceful and rest...allowing her Daddy to rest too.
As I drove away from UCLA with tears filled my eyes with the song "He Never Let's Go" playing ever so appropriately on my CD player...the Lord reminded me of some amazing things...
Keep walking...
Keep watching...
Keep trusting...
Keep believing...
Keep putting on foot in front of the other and I'll be there...
I'll be there to wipe the tears from your eyes...
Because I am here in the midst of the storm...
I was reminded that the Lord isn't on the outside looking in at the storm of our lives. That He isn't far away, disconnected with our moments. No, He is in them...He is in our midst.
Because as I got to my parent's house to pick up Wyatt and saw him running to me I smiled...a smile I haven't smiled in days. A smile of true joy...a release knowing that the Lord knows...He knows the ache of my mommy heart that I cannot save Camryn from this...the ache of not being with Wyatt.
The aches...for He knows the aches...
For He is in the midst of those aches...and He will never let go.
Today Camryn really struggled, she is having severe leg pain and just really uncomfortable. Thankfully they have her on some pain meds now and that seems to be helping. She was very irritable and grouchy today...which I don't blame her for. If I had leukemia raging in my body I can't say I'd be Little Miss Sunshine either. Camryn is tired...if you could pray that she can get a good night's sleep tonight with her Daddy with her. That she'd be peaceful and rest...allowing her Daddy to rest too.
As I drove away from UCLA with tears filled my eyes with the song "He Never Let's Go" playing ever so appropriately on my CD player...the Lord reminded me of some amazing things...
Keep walking...
Keep watching...
Keep trusting...
Keep believing...
Keep putting on foot in front of the other and I'll be there...
I'll be there to wipe the tears from your eyes...
Because I am here in the midst of the storm...
I was reminded that the Lord isn't on the outside looking in at the storm of our lives. That He isn't far away, disconnected with our moments. No, He is in them...He is in our midst.
Because as I got to my parent's house to pick up Wyatt and saw him running to me I smiled...a smile I haven't smiled in days. A smile of true joy...a release knowing that the Lord knows...He knows the ache of my mommy heart that I cannot save Camryn from this...the ache of not being with Wyatt.
The aches...for He knows the aches...
For He is in the midst of those aches...and He will never let go.
good day...hard night
Yesterday was a good day after the hard night...Camryn got some much needed rest and then Daddy came walking in with Wyatt and she was so glad to see him. Honestly, she's been crying for Wyatt more than anything...guess she truly is attached to her brother in more ways than one.
Grandma & Papa came with Daddy and Wyatt so it was nice to have some company...cousin S came to hang out and visit with us along with K & T...each one offering a bit of a break of the normal routine of the hospital. She enjoyed seeing Wyatt and hanging out with him. Can't say that Wyatt entirely likes the confined nature of the hospital, but it was very nice having him here with us. Not even sure how we'll do it for the 8 to 12 weeks of transplant...the Lord is will be our strength, but it will be so hard.
K & T brought notes from my students at school...it was nice to see the out-pouring of love for Camryn...it was so special to read the student's kind words, tears flowed freely as I read. I do miss my students and miss the normal routine of life, which now has been snatched away. Our lives have now become blood draw schedules, antibiotics, vital sign checks...the highlight seems to be the new way of ordering from food service.
The day was a much needed encouragement to Camryn, Jason and me...it was nice to have people here to interact with Camryn as throughout the day.
Yet, with the good day the night comes...the night is a hard time for me. I won't lie...when everyone goes, the quietness comes, the darkness comes I am reminded that we are here...and we have a very long road. Everyone goes back to their normal and I am left to wrestle with defining this as our normal again...tears flowed down my cheeks as I recalled all the nights that we've slept through to find ourselves at a new morning. Believing that the Lord's mercies are new every morning...to prepare us for what lies ahead today and leave tomorrow until then.
Camryn didn't sleep well which makes for a long night anyways...she gets very annoyed at the nightly blood draws and vital sign checks. Her legs were hurting throughout the night as well...needless to say she didn't sleep well.
Hopefully today will be a new day...a day of renewal and Camryn in a little better spirits.
Thank you for praying...the road is so long, but we know that the only way to take it is one step at a time. We can't get too far ahead of ourselves, because then it just seems totally defeating...we will get there.
We will win...one step at a time.
Saturday, February 21, 2009
expect the unexpected
Yesterday was an incredibly long day...seriously I am still in awe of just how many twists and turns it took to get us where we are now.
Camryn was scheduled for a blood draw, ekg, echo all in preparation for admittance on Sunday to get settled in for a central line and then arsenic. Well...that's not entirely how the day went.
We got to the lab bright and early as the lab is insane at the medical building...seriously, so many people. Camryn endured another poke and got through a lab draw...at that point we went to the echo and that was a breeze. After the echo we had the ekg done and our day was moving along well...I ran a copy of her ekg up to the doctors in clinic and gave them our cell number as we were told to wait until they checked out her labs from the morning. We went to the patio area of the new hospital and enjoyed a morning snack. Camryn and I had gone into the gift shop to do a little distraction activity. We came back to the table and Jason said they had called and she needed blood.
At this point we were still okay...blood, that's okay. We know that her hemoglobin is low...so we head up to the procedure center.
As we were getting her settled in with an IV which is no easy task she is freaking out crying, wanting to go home...and the doctor comes in and explains that her blood levels are a mess. Her clotting factors are completely off and it would not be in her best interest to send her home as her blood could start clotting or bleeding and that could be were dangerous.
So...through tears I heard that her levels were bad...not that we haven't heard this before, we just didn't expect it.
We got a transfusion...platelets...cryo...and waited for a bed to open. At 6pm still no bed so we had to be moved over to the ER to wait there...let me say that is not the best place to wait with a 4 year old. We waited in the ER for about 5 hours and thankfully a bed opened on the 3rd floor at around 11pm...between 11 and 2am we were getting settled in and trying our best to keep Camryn comfortable as she was very tired...annoyed...feverish...just feeling lousy.
Thankfully Camryn had a good night...and she got some much needed rest. She's up now watching a movie and she ate breakfast...so she's having a much better start to the day. Today should be uneventful far as too many procedures, but as we have learned to expect the unexpected.
Nothing is a given...
As tears flowed down my eyes yesterday for having not been able to say good-bye to Wyatt...for not being "prepared" for all of this...for just wanting this nightmare to be over. Seriously, I'd love to just wake up from all of this...
But that is not to be...
Camryn is very sick and we will have to endure whatever comes our way in order to get her better...even if that means the unexpected...
Yet, in the unexpectedness of now...there is comfort to be found amongst familiar faces. Last night the charge nurse was one of Camryn's most favorite nurses and today many familiar faces have stopped by to say hi and check in on Camryn.
I'm beginning to see and understand that her care community here at UCLA is just as devastated by all this as we are...they thought they'd won too. They thought they were through this battle...there is some comfort to be found even in the midst of the unexpected.
Camryn was scheduled for a blood draw, ekg, echo all in preparation for admittance on Sunday to get settled in for a central line and then arsenic. Well...that's not entirely how the day went.
We got to the lab bright and early as the lab is insane at the medical building...seriously, so many people. Camryn endured another poke and got through a lab draw...at that point we went to the echo and that was a breeze. After the echo we had the ekg done and our day was moving along well...I ran a copy of her ekg up to the doctors in clinic and gave them our cell number as we were told to wait until they checked out her labs from the morning. We went to the patio area of the new hospital and enjoyed a morning snack. Camryn and I had gone into the gift shop to do a little distraction activity. We came back to the table and Jason said they had called and she needed blood.
At this point we were still okay...blood, that's okay. We know that her hemoglobin is low...so we head up to the procedure center.
As we were getting her settled in with an IV which is no easy task she is freaking out crying, wanting to go home...and the doctor comes in and explains that her blood levels are a mess. Her clotting factors are completely off and it would not be in her best interest to send her home as her blood could start clotting or bleeding and that could be were dangerous.
So...through tears I heard that her levels were bad...not that we haven't heard this before, we just didn't expect it.
We got a transfusion...platelets...cryo...and waited for a bed to open. At 6pm still no bed so we had to be moved over to the ER to wait there...let me say that is not the best place to wait with a 4 year old. We waited in the ER for about 5 hours and thankfully a bed opened on the 3rd floor at around 11pm...between 11 and 2am we were getting settled in and trying our best to keep Camryn comfortable as she was very tired...annoyed...feverish...just feeling lousy.
Thankfully Camryn had a good night...and she got some much needed rest. She's up now watching a movie and she ate breakfast...so she's having a much better start to the day. Today should be uneventful far as too many procedures, but as we have learned to expect the unexpected.
Nothing is a given...
As tears flowed down my eyes yesterday for having not been able to say good-bye to Wyatt...for not being "prepared" for all of this...for just wanting this nightmare to be over. Seriously, I'd love to just wake up from all of this...
But that is not to be...
Camryn is very sick and we will have to endure whatever comes our way in order to get her better...even if that means the unexpected...
Yet, in the unexpectedness of now...there is comfort to be found amongst familiar faces. Last night the charge nurse was one of Camryn's most favorite nurses and today many familiar faces have stopped by to say hi and check in on Camryn.
I'm beginning to see and understand that her care community here at UCLA is just as devastated by all this as we are...they thought they'd won too. They thought they were through this battle...there is some comfort to be found even in the midst of the unexpected.
Thursday, February 19, 2009
precious gift...
Today as Camryn and I played beauty shop...we gave each other manicures and pedicures and yes, I bet you've never had a pedicure as great as mine. *wink* And we had lots of fun...fun that mended some ache in my heart. A heart that has been on edge today as we waited to hear from Camryn's team as to when we would be admitted.
We got the final word today and the plan is to admit Camryn on Sunday around 10am and then we would meet with the pediatric surgery team for her central line placement consult. On Monday she will have her central line placed and then start her arsenic treatment that afternoon. If all goes well that will run for 5 days and then we would go home and do the rest of the treatment as an out patient. We are praying for this to work out! As we would love to be home for those 4 weeks.
Camryn is doing well...as well as can be expected for a little one with leukemia cells in her body. As well as a 4 year old with cancer can be I guess...no that's wrong...Camryn is doing what Camryn does best. Fighting...fighting to be well.
Last night as I was removing her bandage from her bone marrow aspiration she was crying and asking me not to hurt her. If that doesn't break a mommy's heart...it nearly crushed mine. After we had finished that ordeal Jason and I talked with Camryn about what is to come. We talked about her juice (blood) making her sick again...that she would need a central line...medicine...and to be in the hospital. Honestly, she took it well and in true Camryn fashion she asked when she gets to come home. She is glad for a line as that means no more pokes with needles for blood draws and IVs...this was welcomed news.
As Jason and I tucked Camryn in she was the sweetest angel...she said to Jason as he kissed her goodnight, "Daddy, I hope you, mommy and Wyatt never get sick like me and you don't get shots, IVs or lines."...tears flowed. Even in the midst of the storm that is raging in her body and in her life she cares for others...truly, she is a gift. A most precious gift.
We thank the Lord richly for this angel in our midst...for teaching us how to gracefully walk through even the darkest night with a hope that again Jesus will make her better.
I heard this song today...never heard it before, but it brought tears to my eyes.
~ Plumb
A few more days at home...a few more tears...a few more smiles...but, most of all a few more days with our precious gift...
We got the final word today and the plan is to admit Camryn on Sunday around 10am and then we would meet with the pediatric surgery team for her central line placement consult. On Monday she will have her central line placed and then start her arsenic treatment that afternoon. If all goes well that will run for 5 days and then we would go home and do the rest of the treatment as an out patient. We are praying for this to work out! As we would love to be home for those 4 weeks.
Camryn is doing well...as well as can be expected for a little one with leukemia cells in her body. As well as a 4 year old with cancer can be I guess...no that's wrong...Camryn is doing what Camryn does best. Fighting...fighting to be well.
Last night as I was removing her bandage from her bone marrow aspiration she was crying and asking me not to hurt her. If that doesn't break a mommy's heart...it nearly crushed mine. After we had finished that ordeal Jason and I talked with Camryn about what is to come. We talked about her juice (blood) making her sick again...that she would need a central line...medicine...and to be in the hospital. Honestly, she took it well and in true Camryn fashion she asked when she gets to come home. She is glad for a line as that means no more pokes with needles for blood draws and IVs...this was welcomed news.
As Jason and I tucked Camryn in she was the sweetest angel...she said to Jason as he kissed her goodnight, "Daddy, I hope you, mommy and Wyatt never get sick like me and you don't get shots, IVs or lines."...tears flowed. Even in the midst of the storm that is raging in her body and in her life she cares for others...truly, she is a gift. A most precious gift.
We thank the Lord richly for this angel in our midst...for teaching us how to gracefully walk through even the darkest night with a hope that again Jesus will make her better.
I heard this song today...never heard it before, but it brought tears to my eyes.
Your baby blues
So full of wonder
Your curly cues
Your contagious smile
And as I watch
You start to grow up
All I can do is hold you tight
Knowing clouds will rage
And storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash all around
But you will be safe in my arms
Story books full of fairy tales
Of kings and queens and the bluest skies
My heart is torn just in knowing
You'll someday see the truth from lies
Knowing clouds will rage
And storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash all around
But you will be safe in my arms
Castles they might crumble
Dreams may not come true
But you are never all alone
Because I will always
Always love you
Clouds will rage
And storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash all around
But you will be safe in my arms
~ Plumb
A few more days at home...a few more tears...a few more smiles...but, most of all a few more days with our precious gift...
Camryn Lee
Wednesday, February 18, 2009
so it begins...
Honestly, not entirely sure I have the words to put this all together, but I will attempt...
Camryn's doctor called today and her bone marrow showed an early stage relapse of her APL...
That sentence hasn't even really sunk in yet...it's whirling around in my head and heart and it hurts. The hurt is drowning me right now...
Right now we wait for her doctors to let us know when a bed will be open and then we'll be admitted for our first round of arsenic trioxide treatment. Hopefully, we'll be able to come home after a week and then we'll do the rest of the arsenic as an out patient.
After the arsenic treatment is over...we head to a bone marrow transplant...again.
So it begins...we face a battle that we thought we'd won, but apparently the leukemia was a stronger foe that we'd thought. We fight again...we juggle schedules, appointments, time away, two little ones, hospital life and so much more. We fight to believe in what we know to be true...we fight to hold on tight.
We pray...we pray for protection as the arsenic runs through Camryn's veins...that her body will respond well.
We pray...that the Lord would do what He does best...redeem his innocent ones in a fallen, broken world.
2.17.09...the journey begins again
Camryn's doctor called today and her bone marrow showed an early stage relapse of her APL...
That sentence hasn't even really sunk in yet...it's whirling around in my head and heart and it hurts. The hurt is drowning me right now...
Right now we wait for her doctors to let us know when a bed will be open and then we'll be admitted for our first round of arsenic trioxide treatment. Hopefully, we'll be able to come home after a week and then we'll do the rest of the arsenic as an out patient.
After the arsenic treatment is over...we head to a bone marrow transplant...again.
So it begins...we face a battle that we thought we'd won, but apparently the leukemia was a stronger foe that we'd thought. We fight again...we juggle schedules, appointments, time away, two little ones, hospital life and so much more. We fight to believe in what we know to be true...we fight to hold on tight.
We pray...we pray for protection as the arsenic runs through Camryn's veins...that her body will respond well.
We pray...that the Lord would do what He does best...redeem his innocent ones in a fallen, broken world.
2.17.09...the journey begins again
Tuesday, February 17, 2009
numb
It's 9:35...and I'm more numb than I have ever been in my life. I don't even know how to begin to put my feelings into words so I am going to keep this post informative...
Today was a very LONG day...started at a normal clinic visit to check levels and the levels came back low, in fact lower than last week. So...something was wrong. Because Camryn's levels were so low they transfused her which was a very difficult process to get started. Placing an IV was horrible...she fought it like crazy. Once the transfusion was started it went well. We had a 2:00 appointment for a bone marrow aspiration and biopsy...to rule out the absolute worst.
We got up to the surgery center for the aspiration and I was nervous...anytime your child is put under and wheeled away from you it's hard. Thankfully, I was able to go with Camryn while they got everything set up and I was able to talk to Dr. M for a bit...all I can say is that the Lord blessed us richly today with Dr. M.
Once the aspiration was over and Camryn was awake from the anesthesia we headed home to wait for a call from Dr. M. He felt that he may not have any further news to give us, but his gut feeling is that after the aspiration all of this was being caused by her leukemia coming back.
We got home...and waited. Dr. M called and said that he could not make a definitive decision and would be able to give us the official diagnosis tomorrow. So we wait some more...but, we are numb at the realities that most likely Camryn's leukemia is back.
Numb...that's all I can say. Maybe tomorrow I'll be able to find words, but for right now it's just plain numb.
Today was a very LONG day...started at a normal clinic visit to check levels and the levels came back low, in fact lower than last week. So...something was wrong. Because Camryn's levels were so low they transfused her which was a very difficult process to get started. Placing an IV was horrible...she fought it like crazy. Once the transfusion was started it went well. We had a 2:00 appointment for a bone marrow aspiration and biopsy...to rule out the absolute worst.
We got up to the surgery center for the aspiration and I was nervous...anytime your child is put under and wheeled away from you it's hard. Thankfully, I was able to go with Camryn while they got everything set up and I was able to talk to Dr. M for a bit...all I can say is that the Lord blessed us richly today with Dr. M.
Once the aspiration was over and Camryn was awake from the anesthesia we headed home to wait for a call from Dr. M. He felt that he may not have any further news to give us, but his gut feeling is that after the aspiration all of this was being caused by her leukemia coming back.
We got home...and waited. Dr. M called and said that he could not make a definitive decision and would be able to give us the official diagnosis tomorrow. So we wait some more...but, we are numb at the realities that most likely Camryn's leukemia is back.
Numb...that's all I can say. Maybe tomorrow I'll be able to find words, but for right now it's just plain numb.
Monday, February 16, 2009
one more...
simply we have one more wake up until we face the news tomorrow...to say that i'm on edge tonight would be an understatement. cannot even fathom what is ahead of us tomorrow, but i do know who holds it...
trusting Him who has gone ahead of us so many times before...
when we went up to ventura on saturday i built myself an altar...not to worship, but like in the old testament. an altar of remembrance...to remember how far the Lord has brought us and a visual of his faithfulness.
you might think it odd...corny...or whatever, but to me it's significant. because tomorrow it's either keep moving forward or starting all over again.
and i have to remember...
remember just how far He has brought us and how much further He wants to take us...eternity.
trusting Him who has gone ahead of us so many times before...
when we went up to ventura on saturday i built myself an altar...not to worship, but like in the old testament. an altar of remembrance...to remember how far the Lord has brought us and a visual of his faithfulness.
you might think it odd...corny...or whatever, but to me it's significant. because tomorrow it's either keep moving forward or starting all over again.
and i have to remember...
remember just how far He has brought us and how much further He wants to take us...eternity.
Sunday, February 15, 2009
hold on tight...
Honestly, I have been very pleased with how me and Jason have been handling the news we received on Tuesday...but, the last couple days have been trying. I'm not sure why...but, for some reason the last two days have been especially hard and truthfully I'm not sure tomorrow will be any better.
As Tuesday inches closer and closer the knot in my stomach is feeling pretty permanent. That this lump in my throat is going to erupt with tears that start to flow and I'm not sure if they started I would be able to stop them. At least not tonight.
Camryn has the stomach bug that Wyatt had earlier this week...no cause for alarm there as we were told at her January clinic visit that in essence Camryn & Wyatt are immune system twins. Her doctor said, "to watch Wyatt...whatever he gets, she'll get too." Well, he wasn't kidding. But, even though we know it's a stomach bug and we know that it'll be gone in a couple days it isn't helping our waiting hearts.
Seeing Camryn laying on the couch and just pretty much feeling yucky has not been easy...no it's been downright painful. I won't lie...the thoughts of the many potential outcomes are flooding my mind and I can't seem to find peace.
My heart keeps telling me to hold on tight...hold on to what you know to be true...just hold on.
And I am tying a knot in the truth of my Lord...
As Tuesday inches closer and closer the knot in my stomach is feeling pretty permanent. That this lump in my throat is going to erupt with tears that start to flow and I'm not sure if they started I would be able to stop them. At least not tonight.
Camryn has the stomach bug that Wyatt had earlier this week...no cause for alarm there as we were told at her January clinic visit that in essence Camryn & Wyatt are immune system twins. Her doctor said, "to watch Wyatt...whatever he gets, she'll get too." Well, he wasn't kidding. But, even though we know it's a stomach bug and we know that it'll be gone in a couple days it isn't helping our waiting hearts.
Seeing Camryn laying on the couch and just pretty much feeling yucky has not been easy...no it's been downright painful. I won't lie...the thoughts of the many potential outcomes are flooding my mind and I can't seem to find peace.
My heart keeps telling me to hold on tight...hold on to what you know to be true...just hold on.
When you come to the end of your rope, tie a knot and hang on. ~Franklin D. Roosevelt
And I am tying a knot in the truth of my Lord...
I waited patiently for the Lord;
he turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire,
he set my feet on a rock
and gave me a firm place to stand.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear
and put their trust in the Lord.
~ Psalm 40:1 - 3
Saturday, February 14, 2009
heart day
Happy Valentine's Day!
Today we had planned on doing dinner and such; but since Tuesday's news our plans have changed quite a bit for the weekend...so, instead of dinner and a night out we had a day outing instead.
Jason suggested we take Camryn to her most favorite place...no, not D.land although I'm sure she would have loved that. But, due to her low counts we had to stay away from children...so we went to a place where we always seem to go with Camryn. Ventura beach...
Camryn affectionately calls Ventura "her beach". She absolutely loves digging in the sand...seriously this girl loves sand. She could do without the water, but she does love the sights and sounds of the ocean from afar.
Wyatt loves the beach too and it is fun taking him as he is more and more interested in the fun. He had fun looking at rocks...digging in the sand...touching the water, yes the very cold water.
Yes, these two enjoy the beach quite differently...but they sure do enjoy it in their own way. We had a picnic lunch on the beach and just hung out for awhile. All in all it was a very nice way to spend Valentine's...with the three people I love most.
Wy...enjoying the rocks
Cam...just a cutie
My Two Loves
Love...(Camryn took this pic)
Today was a nice reminder that we have much to be thankful for...Ventura always seems to remind us of how far we've come. We first took Camryn up there when she was sick and ever since Ventura has been hers. Now we wait...I won't lie, parts of today have been a bit harder than the last few days. Praying she was just having a day...it's hard to wait. So very hard.
Heard this song last night...seems perfectly fitting:
While I'm Waiting
John Waller
The Blessing
Only 3 more wake ups...
Today we had planned on doing dinner and such; but since Tuesday's news our plans have changed quite a bit for the weekend...so, instead of dinner and a night out we had a day outing instead.
Jason suggested we take Camryn to her most favorite place...no, not D.land although I'm sure she would have loved that. But, due to her low counts we had to stay away from children...so we went to a place where we always seem to go with Camryn. Ventura beach...
Camryn affectionately calls Ventura "her beach". She absolutely loves digging in the sand...seriously this girl loves sand. She could do without the water, but she does love the sights and sounds of the ocean from afar.
Wyatt loves the beach too and it is fun taking him as he is more and more interested in the fun. He had fun looking at rocks...digging in the sand...touching the water, yes the very cold water.
Yes, these two enjoy the beach quite differently...but they sure do enjoy it in their own way. We had a picnic lunch on the beach and just hung out for awhile. All in all it was a very nice way to spend Valentine's...with the three people I love most.
Wy...enjoying the rocks
Cam...just a cutie
My Two Loves
Love...(Camryn took this pic)
Today was a nice reminder that we have much to be thankful for...Ventura always seems to remind us of how far we've come. We first took Camryn up there when she was sick and ever since Ventura has been hers. Now we wait...I won't lie, parts of today have been a bit harder than the last few days. Praying she was just having a day...it's hard to wait. So very hard.
Heard this song last night...seems perfectly fitting:
While I'm Waiting
John Waller
The Blessing
I’m waiting
I’m waiting on You, Lord
And I am hopeful
I’m waiting on You, Lord
Though it is painful
But patiently, I will wait
I will move ahead, bold and confident
Taking every step in obedience
While I’m waiting
I will serve You
While I’m waiting
I will worship
While I’m waiting
I will not faint
I’ll be running the race
Even while I wait
I’m waiting
I’m waiting on You, Lord
And I am peaceful
I’m waiting on You, Lord
Though it’s not easy, no
But faithfully, I will wait
Yes, I will wait
And I will move ahead, bold and confident
Taking every step in obedience
While I’m waiting
I will serve You
While I’m waiting
I will worship
While I’m waiting
I will not faint
I’ll be running the race
Even while I wait
I will move ahead, bold and confident
I'll be taking every step in obedience, yea
While I’m waiting
I will serve You
While I’m waiting
I will worship
While I’m waiting
I will not faint
I will serve You while I’m waiting
I will worship while I’m waiting
I will serve You while I’m waiting
I will worship while I’m waiting
I will serve You while I’m waiting
I will worship while I’m waiting
I will serve You while I’m waiting
I will worship while I’m waiting on You, Lord
Only 3 more wake ups...
Thursday, February 12, 2009
not sure what to think
After I talked to Jason on Tuesday and heard the news about Camryn's levels; I envisioned this week being very different. I honestly thought Camryn would be laying on the couch with cool packs and just feeling horrible.
Well...ever since her appointment she has seemingly done a 180. Totally different, completely different. For months we were dealing with Camryn sick with her sinus infection...and I thought now we would be dealing with Camryn and low blood levels. Truthfully, if feels that finally we have Camryn back...she is laughing, playing and enjoying life.
I won't lie I'm not sure what to think...seems totally crazy to me. But, again we've gone through another day and Camryn is doing well.
Only 5 more wake ups...
Well...ever since her appointment she has seemingly done a 180. Totally different, completely different. For months we were dealing with Camryn sick with her sinus infection...and I thought now we would be dealing with Camryn and low blood levels. Truthfully, if feels that finally we have Camryn back...she is laughing, playing and enjoying life.
I won't lie I'm not sure what to think...seems totally crazy to me. But, again we've gone through another day and Camryn is doing well.
Only 5 more wake ups...
Wednesday, February 11, 2009
6 wake ups...
I recently read a novel in which the main character talked about facing time with counting the "wake ups"...instead of looking at it in terms of days...look at it in terms of wake ups. So, I decided I would. We have 6 wake ups until Tuesday...doesn't sound so long that way. At least in my mind it doesn't...quite haven't convinced my heart yet.
But, when I got home this afternoon I was thrilled to find Camryn so much like herself...playing, chatting and just so full of life. Truly, my heart just smiled...I'm not sure what exactly to think of all of this. This week of waiting and hoping; but I do know that it is a heck of a lot easier when Camryn is herself.
Jason and I were talking this evening and commented that actually Camryn is so much more herself right now as opposed to the last few months. And to top it off Camryn & Wyatt decided to do a little X game couch jumping...
Daredevil Wyatt
Camryn flying
Fun Girl
Love this face
Maybe these moments like tonight will help my heart be convinced that whether it is 6 more wake ups or more I can trust...trust what is right in front of me right now. My kids...
But, when I got home this afternoon I was thrilled to find Camryn so much like herself...playing, chatting and just so full of life. Truly, my heart just smiled...I'm not sure what exactly to think of all of this. This week of waiting and hoping; but I do know that it is a heck of a lot easier when Camryn is herself.
Jason and I were talking this evening and commented that actually Camryn is so much more herself right now as opposed to the last few months. And to top it off Camryn & Wyatt decided to do a little X game couch jumping...
Daredevil Wyatt
Camryn flying
Fun Girl
Love this face
Maybe these moments like tonight will help my heart be convinced that whether it is 6 more wake ups or more I can trust...trust what is right in front of me right now. My kids...
we heart kelly...
On Sunday night we went to hear Cal Baptist Riverside's University Choir perform...but, most of all we went to see our very favorite Kelly and of course Jonas' daddy Chris.
The kids absolutely LOVE Kelly...she brings joy to their lives in ways that are priceless. In fact I talked to Kelly today to let her know about where we are with Camryn this week...and you know what?
Kelly called this afternoon and left Camryn the cutest, coolest and sweetest message ever. Camryn got a huge smile across her face as she listened. Camryn asked me if she could call Kelly back, so later tonight she did.
Thanks Kelly...for bringing such a joy to our lives. We heart Kelly!
The kids absolutely LOVE Kelly...she brings joy to their lives in ways that are priceless. In fact I talked to Kelly today to let her know about where we are with Camryn this week...and you know what?
Kelly called this afternoon and left Camryn the cutest, coolest and sweetest message ever. Camryn got a huge smile across her face as she listened. Camryn asked me if she could call Kelly back, so later tonight she did.
Thanks Kelly...for bringing such a joy to our lives. We heart Kelly!
Tuesday, February 10, 2009
all i can say
Today...not sure I even know where to begin or even what to say. Camryn had her routine, normal, standard clinic visit at UCLA today. She spent the past 4 weeks on antibiotics for a chronic sinus infection, so we were hopeful today we would get good news and be done with medicine and moving ahead.
Well...that wasn't exactly the case today. Jason went with Camryn this morning and I headed to work...routine, normal, standard. I started watching the clock as I had not heard from Jason and I was beginning to get concerned. When Jason and I finally talked...I don't even have words sufficient enough.
Jason explained that Camryn's levels were extremely low and that the doctors were concerned. In fact her levels are about half of what they should be...and honestly as I looked over her lab sheet a few minutes ago my heart just sank. I've come to know what those numbers mean better than I've ever wanted to. Her doctors explained that there were really two options as to what could be causing this. One: her sinus infection could be suppressing her immune system and bone marrow and that could explain the low levels. Two: her leukemia is back.
As you can imagine our hearts are numb with option number two. Not exactly the words we expected to hear today.
We go back on Tuesday for another blood draw and are hoping the levels are up nice and strong and it was her infection that caused this...if not...well, I can't quite wrap my mind around it yet.
We wait a week...as we wait we watch for the dreaded signs and keep our eyes open for any signs whether positive or negative.
And we pray...we pray that the Lord guides us and holds us as we walk through this week. As we anticipate the outcomes, may we rest in the knowledge that Our Lord loves Camryn far more than we can comprehend. We've believed from the beginning that Our Lord is good and that hasn't changed.
He is a good God...
Yet, even in trying to grasp to understand His goodness, His plan I find myself again searching...and really this is all I can say...
~ David Crowder Band
We covet your prayers as we walk these next days...and what the future holds
Well...that wasn't exactly the case today. Jason went with Camryn this morning and I headed to work...routine, normal, standard. I started watching the clock as I had not heard from Jason and I was beginning to get concerned. When Jason and I finally talked...I don't even have words sufficient enough.
Jason explained that Camryn's levels were extremely low and that the doctors were concerned. In fact her levels are about half of what they should be...and honestly as I looked over her lab sheet a few minutes ago my heart just sank. I've come to know what those numbers mean better than I've ever wanted to. Her doctors explained that there were really two options as to what could be causing this. One: her sinus infection could be suppressing her immune system and bone marrow and that could explain the low levels. Two: her leukemia is back.
As you can imagine our hearts are numb with option number two. Not exactly the words we expected to hear today.
We go back on Tuesday for another blood draw and are hoping the levels are up nice and strong and it was her infection that caused this...if not...well, I can't quite wrap my mind around it yet.
We wait a week...as we wait we watch for the dreaded signs and keep our eyes open for any signs whether positive or negative.
And we pray...we pray that the Lord guides us and holds us as we walk through this week. As we anticipate the outcomes, may we rest in the knowledge that Our Lord loves Camryn far more than we can comprehend. We've believed from the beginning that Our Lord is good and that hasn't changed.
He is a good God...
Yet, even in trying to grasp to understand His goodness, His plan I find myself again searching...and really this is all I can say...
Lord I'm tired
So tired from walking
And Lord I'm so alone
And Lord the dark
Is creeping in
Creeping up
To swallow me
I think I'll stop
Rest here a while
And didn't You see me cry'n?
And didn't You hear me call Your name?
Wasn't it You I gave my heart to?
I wish You'd remember
Where you sat it down
And this is all that I can say right now
And this is all that I can give
I didn't notice You were standing here
I didn't know that
That was You holding me
I didn't notice You were cry'n too
I didn't know that
That was You washing my feet
~ David Crowder Band
We covet your prayers as we walk these next days...and what the future holds
Monday, February 9, 2009
acute promyelocytic leukemia
I can still remember Camryn's doctor at Cedars coming into her room sitting down and saying...
I have good news and bad news...the bad news is that Camryn has leukemia, the good news it is easily treated.
That conversation was three years ago today. Camryn's bone marrow aspiration results had come in and Dr. H was sharing the news with us...the diagnosis. As we sat and listened she explained that the type of leukemia Camryn had was extremely rare in children, it was more likely to be found in adults. As she went on to explain that in most cases chemotherapy would be the standard course of treatment...a bone marrow transplant was the furthest thing from Camryn's team of doctor's minds. Honestly, I don't think they ever envisioned Camryn going down the road she did.
The road...
I remember trying to get my hands on any piece of information about APL I could. Trying to understand what it was my little girl was fighting. Trying to wrap my mind around what we could do...what caused this? What were the treatments?
And oddly enough there was a certain comfort in knowing that we were not alone. That other children were fighting although I learned early on that hardly any children we came to know were fighting the same thing. In fact at this point we have never met anyone with APL...so we are learning that in as much as childhood cancer strikes far too frequently, it strikes far too differently as well.
As a family we have come to have special places in our hearts for other children and their families who are walking this journey. There are no words adequate enough to capture what we feel for them...the ups and downs that they are enduring. At times I wish I could physically wrap my arms around them and tell them that it will be okay; but in fact I cannot. Because it isn't always okay...
Sometimes it's downright horrible, ugly and unfair. Sometimes cancer wins...it robs children of their childhood...it robs parents of their children...it hurts innocent people, innocent ones.
I hate cancer...I do. I hate what it has done to countless families...and I guess what I hate most is that it continues too. That is why we pray for healing...we pray that the Lord redeems his children...that in some way in the midst of tears, hurts, and tragedy...the Lord would win.
Acute Promyelocytic Leukemia...changed our family's life forever. No longer do we fear it the same way we once did, but it has changed us. It has caused us to see the world so differently...to see others so differently...three years ago those 3 words were spoken and honestly, I never knew they would hurt so much...
And change so much...
I have good news and bad news...the bad news is that Camryn has leukemia, the good news it is easily treated.
That conversation was three years ago today. Camryn's bone marrow aspiration results had come in and Dr. H was sharing the news with us...the diagnosis. As we sat and listened she explained that the type of leukemia Camryn had was extremely rare in children, it was more likely to be found in adults. As she went on to explain that in most cases chemotherapy would be the standard course of treatment...a bone marrow transplant was the furthest thing from Camryn's team of doctor's minds. Honestly, I don't think they ever envisioned Camryn going down the road she did.
The road...
I remember trying to get my hands on any piece of information about APL I could. Trying to understand what it was my little girl was fighting. Trying to wrap my mind around what we could do...what caused this? What were the treatments?
And oddly enough there was a certain comfort in knowing that we were not alone. That other children were fighting although I learned early on that hardly any children we came to know were fighting the same thing. In fact at this point we have never met anyone with APL...so we are learning that in as much as childhood cancer strikes far too frequently, it strikes far too differently as well.
As a family we have come to have special places in our hearts for other children and their families who are walking this journey. There are no words adequate enough to capture what we feel for them...the ups and downs that they are enduring. At times I wish I could physically wrap my arms around them and tell them that it will be okay; but in fact I cannot. Because it isn't always okay...
Sometimes it's downright horrible, ugly and unfair. Sometimes cancer wins...it robs children of their childhood...it robs parents of their children...it hurts innocent people, innocent ones.
I hate cancer...I do. I hate what it has done to countless families...and I guess what I hate most is that it continues too. That is why we pray for healing...we pray that the Lord redeems his children...that in some way in the midst of tears, hurts, and tragedy...the Lord would win.
Acute Promyelocytic Leukemia...changed our family's life forever. No longer do we fear it the same way we once did, but it has changed us. It has caused us to see the world so differently...to see others so differently...three years ago those 3 words were spoken and honestly, I never knew they would hurt so much...
And change so much...
Saturday, February 7, 2009
three years...
I don't think of all the misery but of the beauty that still remains. ~Anne Frank
Three years ago today our lives were forever changed by one fateful word...
leukemia
In looking back on our three year journey I cannot help but remember what it was like the day it all began. Our minds are forever etched with the emotions, feelings and thoughts of that first day...the first day.
I vividly remember riding in the ambulance with Camryn as she was transferred from Huntington to Cedars - Sinai...I remember just staring at her tiny little body strapped down on the gurney...I remember thoughts flooding my head that this cannot be real...What was happening?
Over and over I've played that first day through my mind...that was the last day that I saw Camryn's blond hair without even thinking about it, for in about a month it would be gone. I remember speaking the word leukemia out loud and wondering how in the world it came to this? Chemotherapy, PICC lines, bone marrow aspirations, anesthesia...you name it, these became the words that flooded our days. No longer making play dates with friends...we now we learning the routine of hospital life. So much changed in that first day...
Today we stand three years past that day and so many things have changed...Camryn is leukemia free...PICC line free...Central line free...Medicine free...she is free.
Camryn is free from the realities that held her for so long...she is no longer in isolation, she can live...live the life that for most of the past three years was paused. I would love to say that all the baggage of the past three years is behind us, but that simply is not the case. We still battle over things that most parents don't give a second thought to. We go to UCLA for clinic about every other month now, but we still have blood draws and we still love to hear Cam's numbers. Yes, we know more about the medical field than I ever thought possible.
I believe it is now three years later that we as a family are fully beginning to unpack our lives. The fears, concerns, anxiety, joys, sorrows, trust...the roller coaster of emotions never seems too far away. Camryn's life was hit by a trauma that has left her afraid...yes for so long she didn't know better. She went through the motions because this is what she's always known. Well, now life is broad and she realizes that her's in not a completely normal life. Why does she have to go to UCLA and have a blood draw if she is not sick anymore? Try finding an answer that suffices for a 4 year old. There isn't one. But, we continue to believe that the Lord is in this...
On one of our first evenings at Cedars I was alone with Camryn in her room. Jason had gone to walk my family out and get some things out of the car that they had brought. As I sat there and watched her sleep in her crib (that looked more like a cage)...tears streamed down my face. Lord, where are you? Lord, please come...please hold us now as we have no idea what the future holds.
And in that twilight moment with the room dark and the only real light coming under the door and off the IV pole...the peace came...
I love her...know and believe that I created her and I love her...I did not do this...Your world is fallen, broken and my innocent ones pay a price...I love her more than you do and I will hold her in my arms throughout this...Believe me, she was mine before she was ever yours...I gave her as a gift...hold her loosely and believe...Believe in me.
A few seconds later two of my girls that I coached came in...and throughout that conversation and countless more the Lord revealed Himself. He made Himself clear...even through the tears...
I do not pretend to understand and I honestly cannot say I am okay with all that Camryn's body endured, but I do know that the Lord is bigger than all of it. He held her then and He holds her now...three years later and that hasn't changed.
So much has changed and yet one thing remains...He created something beautiful...out of our misery something beautiful was made. Would I have chosen this path that started three years ago today? Absolutely not. But, I have to trust that the One who holds the universe in the palm of His hand is big enough to hold my questions, fears, anxiety...He is big enough.
I will choose today to hold on to that, even three years later when I am brought to tears...yet I will choose to believe what He gave me so long ago...
He Loves Her.
Friday, February 6, 2009
where i am today...
Clinging ever so tightly, believing...
When clouds veil sun
And disaster comes
Oh, my soul
Oh, my soul
When waters rise
And hope takes flight
Oh, my soul
Oh, my soul
Oh, my soul
Ever faithful
Ever true
You I know
You never let go
You never let go
You never let go
You never let go
When clouds brought rain
And disaster came
Oh, my soul
Oh, my soul
When waters rose
And hope had flown
Oh, my soul
Oh, my soul
Oh, my soul
Oh, my soul
Overflows
Oh, what love, oh, what love
Oh, my soul
Fills hope
Perfect love that never lets go
Oh, what love, oh, what love
Oh, what love, oh, what love
In joy and pain
In sun and rain
You?re the same
Oh, You never let go
~ David Crowder Band
...so many feelings, memories, emotions...swirling in my heart right now.
Hard to believe 3 years ago today my life was simple...tomorrow it would change forever.
When clouds veil sun
And disaster comes
Oh, my soul
Oh, my soul
When waters rise
And hope takes flight
Oh, my soul
Oh, my soul
Oh, my soul
Ever faithful
Ever true
You I know
You never let go
You never let go
You never let go
You never let go
When clouds brought rain
And disaster came
Oh, my soul
Oh, my soul
When waters rose
And hope had flown
Oh, my soul
Oh, my soul
Oh, my soul
Oh, my soul
Overflows
Oh, what love, oh, what love
Oh, my soul
Fills hope
Perfect love that never lets go
Oh, what love, oh, what love
Oh, what love, oh, what love
In joy and pain
In sun and rain
You?re the same
Oh, You never let go
~ David Crowder Band
...so many feelings, memories, emotions...swirling in my heart right now.
Hard to believe 3 years ago today my life was simple...tomorrow it would change forever.
Thursday, February 5, 2009
future crusaders...
On Tuesday Camryn and Wyatt went to one of their most favorite places...V.C.S. Who know a school could be so fun? We'll see if they feel the same way in a few years. :)
Every year around this time the Village Cheerleaders hold a cheer clinic for the little elementary girls and they always include Camryn even though she isn't quite in school yet. They generously give her a t-shirt, pom-poms and a button...but, more than that they give her a smile. I really appreciate the giving spirit of the cheer program...even if my best friend is the advisor, I still say a HUGE thank you for including Camryn in the fun!
Here's a few pics of the future crusader...her Daddy isn't sure about the cheerleader part yet.
And of course no trip to Big Village as Camryn calls it is complete without a trip to the kindergarten playground.
Love these two...and yes I guess being a Crusader isn't all that bad. After all their Daddy and Mommy were Crusaders too!
Every year around this time the Village Cheerleaders hold a cheer clinic for the little elementary girls and they always include Camryn even though she isn't quite in school yet. They generously give her a t-shirt, pom-poms and a button...but, more than that they give her a smile. I really appreciate the giving spirit of the cheer program...even if my best friend is the advisor, I still say a HUGE thank you for including Camryn in the fun!
Here's a few pics of the future crusader...her Daddy isn't sure about the cheerleader part yet.
And of course no trip to Big Village as Camryn calls it is complete without a trip to the kindergarten playground.
Love these two...and yes I guess being a Crusader isn't all that bad. After all their Daddy and Mommy were Crusaders too!
Wednesday, February 4, 2009
adventures in costco
Tonight we ran over to Costco to get some much needed items for lunches and such. Camryn and Wyatt usually do really well as they like to ride side by side in the cart and look at the books, movies and such. Well tonight we had quite the adventure...
We decided to eat dinner before going as to ward off any hunger pains while in Costco...Wyatt really didn't eat much, but I didn't think anything of it. Camryn ate really well and to be honest, we were much more focused on that as she hasn't had quite an appetite lately. So, off we went...
As we looked at the movies, books and began working our way back to the cake, bread and such Wyatt gets this really weird look on his face and just throws up all over himself...and doing what all moms do, I tried to catch it. What in the world? Am I trying to save the Costco carts, floors...I have no idea. But, what motherly instinct is it to try to catch vomit? I cannot figure that out. I got him out of the cart and held him...while he throw up again. We made our way over to a trash can and by now people are noticing and looking. Wyatt isn't crying he is just saying..."I sick Mama." Camryn is handling all of this well...Jason and I both decide to leave the cart and just go home. But, Wyatt's shirt is covered and he is crying now because his shirt is a mess. I take his shirt off and head to the bathroom to wash his hands and my own. As we walked through Costco with a shirtless Wyatt and me trying to consol him, he is saying, "I not sick anymore Mama."
Jason and Camryn ran and got a few items we needed and I grabbed a pj set to change Wyatt into. I had neglected to bring a bag or change of clothes as at almost 2 1/2 I just don't feel the need anymore...boy was I mistaken tonight.
We finally made it home and Wyatt had a low grade fever. We gave him some medicine and he headed to bed...poor little guy. Hopefully he'll wake up better tomorrow...
All I can say is a Wednesday night boring trip to Costco became quite an adventure.
We decided to eat dinner before going as to ward off any hunger pains while in Costco...Wyatt really didn't eat much, but I didn't think anything of it. Camryn ate really well and to be honest, we were much more focused on that as she hasn't had quite an appetite lately. So, off we went...
As we looked at the movies, books and began working our way back to the cake, bread and such Wyatt gets this really weird look on his face and just throws up all over himself...and doing what all moms do, I tried to catch it. What in the world? Am I trying to save the Costco carts, floors...I have no idea. But, what motherly instinct is it to try to catch vomit? I cannot figure that out. I got him out of the cart and held him...while he throw up again. We made our way over to a trash can and by now people are noticing and looking. Wyatt isn't crying he is just saying..."I sick Mama." Camryn is handling all of this well...Jason and I both decide to leave the cart and just go home. But, Wyatt's shirt is covered and he is crying now because his shirt is a mess. I take his shirt off and head to the bathroom to wash his hands and my own. As we walked through Costco with a shirtless Wyatt and me trying to consol him, he is saying, "I not sick anymore Mama."
Jason and Camryn ran and got a few items we needed and I grabbed a pj set to change Wyatt into. I had neglected to bring a bag or change of clothes as at almost 2 1/2 I just don't feel the need anymore...boy was I mistaken tonight.
We finally made it home and Wyatt had a low grade fever. We gave him some medicine and he headed to bed...poor little guy. Hopefully he'll wake up better tomorrow...
All I can say is a Wednesday night boring trip to Costco became quite an adventure.
Sunday, February 1, 2009
provision
Three years ago today Jason and I went to Dr. H's office to hear the words "congratulations...a baby is on it's way." Oh how my heart had leaped with joy as a few months earlier I had lost our second baby at 12 weeks. Another baby...
I can still remember the smile on mine and Jason's faces as we walked out of Dr. H's office to the car and we just sat there...not knowing if we could truly be excited yet. We decided we would wait to officially tell anyone for awhile...sitting on that kind of news is hard. But, we did it.
A few days later those feelings of joy were shattered as we learned that Camryn had leukemia. How do you celebrate a new life while clinging to the child you already had? I struggled for a very long time not knowing how to truly be excited for the new baby...we spent many a day not knowing where the future was taking us with Camryn and I just could not get myself to plan, think or even prepare for the new little one.
Throughout the 9 months the baby and I existed together and I must say the baby was an easy one...didn't really make too many waves for me. In the quietness of the night when Camryn had finally fallen asleep and the IV's were not beeping I found myself thinking, dreaming, hoping for this new little one. I felt as though we had a bond although I felt that I was a completely horrible pregnant woman as I was doing all the things you probably shouldn't do...I mean I ate hospital food for almost 9 months off and on and slept on an air mattress on the floor...yeah, not the ideal situation.
Yet...the provision. The Lord always seemed to step in at the right time and give me the strength necessary to care for my little girl and carry the new little one. I won't lie there was a heap of guilt for not celebrating the new baby...not chatting about him or her to everyone. No most days conversation centered around medications, trips to the play room, antibiotics, leukemia...and more. A new baby was not on the top 10 list of things to be discussed...in time.
In time...when Camryn relapsed and it became clear that there were no other options but a BMT I felt the bottom of my heart just collapse. Lord, I can't...I don't know who to take another step. When Camryn's doctor wanted to see if the baby was a match I just felt my heart sink further...an amnioscentisis. I was scared to death...what if? What if I went into labor early? What if something happened? Lord, how do I do this?
Provision...step by step the pieces of the puzzle came together and step by step I realized that the puzzle was far bigger than me. Doctors were doing things totally unexpected, nurses were filling roles they did not have too, friends were more than friends...people were being Jesus to us...people were providing in ways that leave me speechless still.
After the word came that the baby was a perfect match; Camryn began to really take a turn for the worse...and I spent hour after hour rocking her as she hugged my belly. It's as if she knew...she knew that the baby was her miracle. The baby was more than a baby...Camryn hugged my belly day after day as arsenic ran through her veins and we prayed...we prayed that the last resort would work. Lord please...
The provision...three years ago day I had no idea what the next 9 months would hold. How could I? But, I spent many a day holding on to what I did know to be true. The Lord was in this...He was. Even though I struggle to see Him, even though His timing made me struggle...His plan was much higher than mine.
Wyatt Jason Mikels...the Lord provides.
Wyatt,
I wish I could properly express to you all that you mean to your Daddy and me. You are more than our son...you are a daily reminder that the Lord provides in ways totally unexpected. That the Lord's plan is so incredibly different than our own. That you came into our lives when all we had left was a glimmer of hope and you my sweet one far exceeded any glimmer...you shown so brightly. You entrance into this world was full of meaning...you came quietly, quickly and yet ever so loudly. You presence seemed to pronounce to us all..."I am not finished yet...trust me...believe me...and remember, remember how far I have brought you."
Thank you Wy...for always being that reminder to me. Thank you for retelling the story for Mommy's heart over and over...remember where I brought you from and where I am taking you.
I love you with my heart,
Mommy
And who knows but that you have come...for such a time as this. ~ Esther 4:14
I can still remember the smile on mine and Jason's faces as we walked out of Dr. H's office to the car and we just sat there...not knowing if we could truly be excited yet. We decided we would wait to officially tell anyone for awhile...sitting on that kind of news is hard. But, we did it.
A few days later those feelings of joy were shattered as we learned that Camryn had leukemia. How do you celebrate a new life while clinging to the child you already had? I struggled for a very long time not knowing how to truly be excited for the new baby...we spent many a day not knowing where the future was taking us with Camryn and I just could not get myself to plan, think or even prepare for the new little one.
Throughout the 9 months the baby and I existed together and I must say the baby was an easy one...didn't really make too many waves for me. In the quietness of the night when Camryn had finally fallen asleep and the IV's were not beeping I found myself thinking, dreaming, hoping for this new little one. I felt as though we had a bond although I felt that I was a completely horrible pregnant woman as I was doing all the things you probably shouldn't do...I mean I ate hospital food for almost 9 months off and on and slept on an air mattress on the floor...yeah, not the ideal situation.
Yet...the provision. The Lord always seemed to step in at the right time and give me the strength necessary to care for my little girl and carry the new little one. I won't lie there was a heap of guilt for not celebrating the new baby...not chatting about him or her to everyone. No most days conversation centered around medications, trips to the play room, antibiotics, leukemia...and more. A new baby was not on the top 10 list of things to be discussed...in time.
In time...when Camryn relapsed and it became clear that there were no other options but a BMT I felt the bottom of my heart just collapse. Lord, I can't...I don't know who to take another step. When Camryn's doctor wanted to see if the baby was a match I just felt my heart sink further...an amnioscentisis. I was scared to death...what if? What if I went into labor early? What if something happened? Lord, how do I do this?
Provision...step by step the pieces of the puzzle came together and step by step I realized that the puzzle was far bigger than me. Doctors were doing things totally unexpected, nurses were filling roles they did not have too, friends were more than friends...people were being Jesus to us...people were providing in ways that leave me speechless still.
After the word came that the baby was a perfect match; Camryn began to really take a turn for the worse...and I spent hour after hour rocking her as she hugged my belly. It's as if she knew...she knew that the baby was her miracle. The baby was more than a baby...Camryn hugged my belly day after day as arsenic ran through her veins and we prayed...we prayed that the last resort would work. Lord please...
The provision...three years ago day I had no idea what the next 9 months would hold. How could I? But, I spent many a day holding on to what I did know to be true. The Lord was in this...He was. Even though I struggle to see Him, even though His timing made me struggle...His plan was much higher than mine.
Wyatt Jason Mikels...the Lord provides.
Wyatt,
I wish I could properly express to you all that you mean to your Daddy and me. You are more than our son...you are a daily reminder that the Lord provides in ways totally unexpected. That the Lord's plan is so incredibly different than our own. That you came into our lives when all we had left was a glimmer of hope and you my sweet one far exceeded any glimmer...you shown so brightly. You entrance into this world was full of meaning...you came quietly, quickly and yet ever so loudly. You presence seemed to pronounce to us all..."I am not finished yet...trust me...believe me...and remember, remember how far I have brought you."
Thank you Wy...for always being that reminder to me. Thank you for retelling the story for Mommy's heart over and over...remember where I brought you from and where I am taking you.
I love you with my heart,
Mommy
And who knows but that you have come...for such a time as this. ~ Esther 4:14
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