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.
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