So today (Thursday) is one of those days that a parent of a child who has had cancer and a bone marrow transplant just wants to scream...
The day started out well...and then I got an email from a prayer chain group from a local church that my Aunt is a part of that a little three year old boy, who has been battling leukemia went home to Jesus this morning. My heart just aches, an ache unlike any other...news like this just stops me in my tracks, makes me just sad, frustrated and thankful all at once. I am thankful for the family who know the Lord and can rest in Him and He will hold them throughout the moments ahead. For the grace that He will lavish on them in the days, weeks, months ahead...
After I got off work I headed down to UCLA to pick up Camryn's cyclosporin. Grabbed some lunch on the go, then stopped by Jason's work to pick up Camryn's parking permit and off I went. Traffic wasn't too bad and I was hopeful that I would be home shortly...
Went to the pharmacy and was told that there was an insurance problem and that they would have to call and get it figured out. So between the pharmacy and Camryn's nurse practitioner they called and I waited...walked around outside the hospital, went by the gift shop, played with my cell phone...all the while a knot was in my stomach. I do so love the UCLA medical center, I love the precious doctors and nurses who have cared for my sweet girl and my sweet boy throughout this; but today I just was having a hard time being there. I guess it was a trigger of sorts and I was just hanging on by a thread. After awhile I headed back to the pharmacy and was told that my insurance wanted us to take the prescription to a *speciality* pharmacy and they would not cover it at the UCLA pharmacy. What?! I was beyond weary and just ready to cry...my daughter has to have this med. Thankfully we aren't completely out of it yet, but regardless I was just so tired. I took the presciption and said thank you to the very kind, sweet gentlemen who was helping me figure this out, he was as baffled by it as I was and still am.
By this time the afternoon was escaping quickly...I walked to my car and the tears were forming. My weary heart was just so tried...sometimes I just don't understand this journey. Sometimes I'm just ready to have a good cry and let it out...because this journey gets so very heavy on a person's heart.
As I drove home in tears...follow a path I drove over and over again for the months of arsenic treatment and then for the weeks Camryn was in the hospital the tears just flowed...
Camryn is doing really well...and we have some super wonderful days, but then there are days like today when the reality of cancer, leukemia and bone marrow transplant cannot be escaped.
It is now Friday...took a break from the post as I was just having a hard time finding the words...it seems that there are days when the realities are just so present and then days like today...
Today I have Camryn's meds in hand and all is well and figured out with that. So thankful for great doctors and nurses who make it possible to get a hold of them and figure this stuff out. I am forever blessed by them!
We've had a good day today...Camryn did not have school so she, Wyatt and my parents went on an adventure this morning that entailed feeding some local peacocks from the car. I promise that my kids are growing up with some of the greatest, grandest adventures thanks to my mom and dad...who daily watch them, I am forever grateful.
The anticipation of tomorrow night is upon our house...Camryn decided to be Alice in Wonderland and Wyatt decided to be Tyrone from The Backyardigans. So...the build up is great...they are super, super excited! As I've said before that Camryn has a way about her to live life to the fullest...she cherishes any social event she has and tomorrow night is one that has been circled on the calendar!
In other very exciting news...our niece Peighton Hope who many of you have been praying for is coming home from the NICU today! We are so thankful, excited, grateful, happy, oh the list could go on forever! What a gift she is...a long awaited gift!
Yesterday was hard...today was good. This is the ebb and flow of life, especially life as a parent and a child surviving cancer trusting the Lord to see us through the good, the bad, the ugly and everything in between.
And He does...
Thursday, October 29, 2009
Wednesday, October 28, 2009
pumpkin carving...
Here's a few pics of our little pumpkins carving their little pumpkins...
Hope you all are enjoying the fun of fall!
Hope you all are enjoying the fun of fall!
Tuesday, October 27, 2009
day +145..."best possible place...
...to be." ~ Dr.M
If you have to be somewhere and really wherever you are isn't your choosing; then I guess it is good to be at the best place. As of right now Camryn really, truly is at the *best* possible place...
Camryn headed down to clinic today dressed in her fall attire, pumpkin shirt, complete with a candy corn hair clip...yep, she looked cute! Camryn and Jason got to clinic and from what I understand it was quite a chaotic day...lots of people there trying to get the H1N1 vaccine and many people were being turned away as the most critical were first in line.
Camryn saw Dr.M today and I am thankful...Dr.M just puts my heart at ease, he is truly one of the greatest blessings throughout this journey. Dr.M said that Camryn looked great, all was clear (ears, eyes, throat)...rash was not spreading and not getting worse, but still visible. Dr.M said that he wanted Camryn to get the H1N1 vaccine, prior her doctors had said there was not enough research to support the vaccine, especially for their hematology/oncology children; but now the research is in and it is highly recommended for a hem/oc child. He went on to say that he fully supports the research as well...as if Camryn's system were to encounter the H1N1 virus she would not have enough antibodies to fight it off. Therefore she got the vaccine and is doing fine so far. I will admit this cold/flu season has me worried, there just seems to be so much out there; but knowing Camryn is under the care of her doctors who fully understand and care about her immuno suppression makes me breath a bit easier.
Camryn's labs continue to look great...in fact they are fabulous! We never tire of nice high numbers, they are never a given, nor are they taken for granted. We love seeing Camryn's numbers on paper...just to smile and think she's doing well and for right now that is enough. Dr.M explained that Camryn's high labs coupled with the GVH she is experiencing is really putting her at the best possible place. In essence it is the GVH that will *cure* the leukemia...as Dr.M told Jason today. Inasmuch as the GVH drives me nuts, the steroids are making me crazy, the rash is not fun...we know that the GVH seems to hold the key. I really think if Camryn had high numbers without GVH her doctors would be getting worried...starting to wonder...relapse? The GVH is what kills any, all, and every leukemia cell or any other cell that does not belong in her body...so we'll take it. As we know this will not be forever...
Day +145...can you believe Camryn has been home for 120 days? Seems so unreal and yet so wonderful all rolled into one. We continually find ourselves in awe of the strength of our sweet girl, her determination, her understanding...and her spirit. Today when she left I had tears in my eyes watching Jason's truck pull out of the driveway...I wish this was not her reality, but it is and some days, okay a lot of days I hate it. But, Camryn continually goes about what she needs to, moment by moment and with a quiet strength that can only come from her Heavenly Father she pushes through. Jason said she was all talkative and chatty at clinic saying hi to everyone and just so much more herself. I'm beginning to think the steroids were pulling a number on her emotions too...so it's nice to have bits and pieces of her more consistently.
For everything that Camryn's been through and what it has meant for her and our family it's hard to really wrap our minds around it...we would love to see a new chapter beginning soon...we would love to have this chapter of leukemia, two transplants, weeks of hospital life, broken dreams, letting go, isolation behind us; but that is not to be...
Yet...for I believe and know that one day there will be a new chapter, even today is a new chapter. Maybe the Lord is really teaching me not to look at life as a series of chapters, events, seasons; but rather moments, days, minutes. I'm not sure we will ever have a non-cancer chapter in our families story, I don't think it possible for it to ever be gone...but I do know that there are days, moments, minutes when cancer does not define us and those days are becoming more in number.
Maybe we have a long way to go of doctors appointments, isolation, six medicines a day, shots, line changes, lab draws...but maybe the chapter never closes completely as we are changed...
Because the night comes every day and the dawn comes every day...so maybe our *chapter* is a new one daily. Because it is a new day....
Everything has changed and will change...we are not the same, nor will we ever be...
And maybe in the light of HIM that is the best possible place to be.
If you have to be somewhere and really wherever you are isn't your choosing; then I guess it is good to be at the best place. As of right now Camryn really, truly is at the *best* possible place...
Camryn headed down to clinic today dressed in her fall attire, pumpkin shirt, complete with a candy corn hair clip...yep, she looked cute! Camryn and Jason got to clinic and from what I understand it was quite a chaotic day...lots of people there trying to get the H1N1 vaccine and many people were being turned away as the most critical were first in line.
Camryn saw Dr.M today and I am thankful...Dr.M just puts my heart at ease, he is truly one of the greatest blessings throughout this journey. Dr.M said that Camryn looked great, all was clear (ears, eyes, throat)...rash was not spreading and not getting worse, but still visible. Dr.M said that he wanted Camryn to get the H1N1 vaccine, prior her doctors had said there was not enough research to support the vaccine, especially for their hematology/oncology children; but now the research is in and it is highly recommended for a hem/oc child. He went on to say that he fully supports the research as well...as if Camryn's system were to encounter the H1N1 virus she would not have enough antibodies to fight it off. Therefore she got the vaccine and is doing fine so far. I will admit this cold/flu season has me worried, there just seems to be so much out there; but knowing Camryn is under the care of her doctors who fully understand and care about her immuno suppression makes me breath a bit easier.
Camryn's labs continue to look great...in fact they are fabulous! We never tire of nice high numbers, they are never a given, nor are they taken for granted. We love seeing Camryn's numbers on paper...just to smile and think she's doing well and for right now that is enough. Dr.M explained that Camryn's high labs coupled with the GVH she is experiencing is really putting her at the best possible place. In essence it is the GVH that will *cure* the leukemia...as Dr.M told Jason today. Inasmuch as the GVH drives me nuts, the steroids are making me crazy, the rash is not fun...we know that the GVH seems to hold the key. I really think if Camryn had high numbers without GVH her doctors would be getting worried...starting to wonder...relapse? The GVH is what kills any, all, and every leukemia cell or any other cell that does not belong in her body...so we'll take it. As we know this will not be forever...
Day +145...can you believe Camryn has been home for 120 days? Seems so unreal and yet so wonderful all rolled into one. We continually find ourselves in awe of the strength of our sweet girl, her determination, her understanding...and her spirit. Today when she left I had tears in my eyes watching Jason's truck pull out of the driveway...I wish this was not her reality, but it is and some days, okay a lot of days I hate it. But, Camryn continually goes about what she needs to, moment by moment and with a quiet strength that can only come from her Heavenly Father she pushes through. Jason said she was all talkative and chatty at clinic saying hi to everyone and just so much more herself. I'm beginning to think the steroids were pulling a number on her emotions too...so it's nice to have bits and pieces of her more consistently.
For everything that Camryn's been through and what it has meant for her and our family it's hard to really wrap our minds around it...we would love to see a new chapter beginning soon...we would love to have this chapter of leukemia, two transplants, weeks of hospital life, broken dreams, letting go, isolation behind us; but that is not to be...
Yet...for I believe and know that one day there will be a new chapter, even today is a new chapter. Maybe the Lord is really teaching me not to look at life as a series of chapters, events, seasons; but rather moments, days, minutes. I'm not sure we will ever have a non-cancer chapter in our families story, I don't think it possible for it to ever be gone...but I do know that there are days, moments, minutes when cancer does not define us and those days are becoming more in number.
Maybe we have a long way to go of doctors appointments, isolation, six medicines a day, shots, line changes, lab draws...but maybe the chapter never closes completely as we are changed...
After night~ David Crowder Band
comes the light
dawn is here
dawn is here
it’s a new day
it’s a new day
everything will change
things will never be the same
we will never be the same
we will never be the same
we will never be the same
we will never be the same
Because the night comes every day and the dawn comes every day...so maybe our *chapter* is a new one daily. Because it is a new day....
Everything has changed and will change...we are not the same, nor will we ever be...
And maybe in the light of HIM that is the best possible place to be.
Monday, October 26, 2009
worth a thousand words...
Here's The Dynamic Duo on the 3 year anniversary of Camryn's first transplant...Camryn was two and a half and Wyatt was a month old. Now they are 5 and a half and 3...and still the greatest duo ever!
And here is our sweet girl with her clip in her hair...
This past weekend was a good one...one spent hanging out together and enjoying being together.
Camryn has been doing well and thankfully staying healthy, so thankful! She is thoroughly loving school and asks to do her homework as she enjoys it so much. We are so incredibly thankful that school has been such a positive experience and encouragement to Camryn. Yes, this is not what we had planned for her, but she is blossoming and doing fabulous! Ms.F constantly is leaving us notes about what a delight Camryn is and how much she enjoys their time together...my heart is so grateful. Camryn heads to clinic tomorrow so we are praying for nice labs and a good visit...being the *sick* season it's always nice to see the doctors for some reassurance that she is doing well.
Wyatt is doing great too! I am so happy to report that he is doing much better and is seemingly over his ear infections and sickness. We are so happy to have our little guy back as we had missed his personality and just the life he brings to our family. Plus, he is sleeping better...and that is a huge blessing for me and Jason! Wyatt continues to play with his trains and just be a crazy boy; but lately he is becoming a lot more interested in coloring. He is doing a good job and he tries to keep up with Camryn...it's cute watching Wyatt watch over Camryn as she does her homework and look out for her always.
Jason and I are doing well...we are both battling on and off again sickness and will be very thankful when it decides to be off again for good. Last night we had the opportunity to go to the U2 concert at the Rose Bowl...so fun! We bought the tickets in May and when we did we both just hoped that life would be in a position to go...and now the event has come and gone and life is moving along. We had a lot of fun with our friends M&C and just enjoying a night out together...along with 90,000+ other fans.
All in all life is going well...more and more a normal is taking shape and it's nice. We are looking forward to some fall festivities this week...pumpkin carving...costumes...candy and just thankful that we've almost made it through October and to day +150. Almost half way to day +300 Camryn next big benchmark...can you believe it's almost been 5 months since her transplant?
We can't and sometimes just looking at her face playing with Wyatt is worth a thousand words...
And here is our sweet girl with her clip in her hair...
This past weekend was a good one...one spent hanging out together and enjoying being together.
Camryn has been doing well and thankfully staying healthy, so thankful! She is thoroughly loving school and asks to do her homework as she enjoys it so much. We are so incredibly thankful that school has been such a positive experience and encouragement to Camryn. Yes, this is not what we had planned for her, but she is blossoming and doing fabulous! Ms.F constantly is leaving us notes about what a delight Camryn is and how much she enjoys their time together...my heart is so grateful. Camryn heads to clinic tomorrow so we are praying for nice labs and a good visit...being the *sick* season it's always nice to see the doctors for some reassurance that she is doing well.
Wyatt is doing great too! I am so happy to report that he is doing much better and is seemingly over his ear infections and sickness. We are so happy to have our little guy back as we had missed his personality and just the life he brings to our family. Plus, he is sleeping better...and that is a huge blessing for me and Jason! Wyatt continues to play with his trains and just be a crazy boy; but lately he is becoming a lot more interested in coloring. He is doing a good job and he tries to keep up with Camryn...it's cute watching Wyatt watch over Camryn as she does her homework and look out for her always.
Jason and I are doing well...we are both battling on and off again sickness and will be very thankful when it decides to be off again for good. Last night we had the opportunity to go to the U2 concert at the Rose Bowl...so fun! We bought the tickets in May and when we did we both just hoped that life would be in a position to go...and now the event has come and gone and life is moving along. We had a lot of fun with our friends M&C and just enjoying a night out together...along with 90,000+ other fans.
All in all life is going well...more and more a normal is taking shape and it's nice. We are looking forward to some fall festivities this week...pumpkin carving...costumes...candy and just thankful that we've almost made it through October and to day +150. Almost half way to day +300 Camryn next big benchmark...can you believe it's almost been 5 months since her transplant?
We can't and sometimes just looking at her face playing with Wyatt is worth a thousand words...
Friday, October 23, 2009
guess what?
Someone's hair in our house is long enough for a clip...can you guess?
Yep, Camryn's! We ordered some baby hair clips last weekend and they arrived yesterday and Camryn was so excited!
Bet you can guess how excited one little girl is!
I'll get some pictures tomorrow and post them...
Until then, just know there is one little girl who is thrilled!
Yep, Camryn's! We ordered some baby hair clips last weekend and they arrived yesterday and Camryn was so excited!
Bet you can guess how excited one little girl is!
I'll get some pictures tomorrow and post them...
Until then, just know there is one little girl who is thrilled!
Thursday, October 22, 2009
just had to share...
Yesterday Camryn had a home health nurse come draw her labs to save us a clinic visit this week. The results would be sent to her doctors at UCLA and they would contact us if anything was amiss with her counts.
The phone rang this morning and the caller ID said UCLA...my heart sank a bit. It's awfully early for them to be calling, I sure hope everything is okay.
Camryn's NP Berkley was on the other end and said that Camryn's labs look really good in fact her liver enzymes were way down! Praise the Lord!
We are so thrilled!!!
Completely thankful today...just thankful that Camryn keeps doing what she should and the better she does hopefully the steroids can be gone for good soon and we'll be down with the side-effects.
Just had to share...thank you all for praying for our sweet girl.
The phone rang this morning and the caller ID said UCLA...my heart sank a bit. It's awfully early for them to be calling, I sure hope everything is okay.
Camryn's NP Berkley was on the other end and said that Camryn's labs look really good in fact her liver enzymes were way down! Praise the Lord!
We are so thrilled!!!
Completely thankful today...just thankful that Camryn keeps doing what she should and the better she does hopefully the steroids can be gone for good soon and we'll be down with the side-effects.
Just had to share...thank you all for praying for our sweet girl.
Tuesday, October 20, 2009
10.20.06...10.20.09
Three years ago today Camryn had her first transplant...
To say that today is like any other day would be an understatement...I won't lie it's been an emotional one. Last year we took Camryn and Wyatt to Disneyland to celebrate 2 years of survivor and donor...this year that was the plan too. In fact on 10.20.06 I decided that every year after would be a celebration of Camryn's new beginning...
Obviously, there is no Disneyland trip this year...our passes expire today. Wishing that today was the only transplant day...but 6.4.09 now is the circled, countdown date on the calendar.
But, really 10.20.06 started it all...
Incredibly thankful today for Camryn's life...thankful for Wyatt's cord blood three years ago...and thankful for the two little faces that never cease to remind me that my time table is not the Lord's time table. That the most precious gifts often come in ways unexpected...
Traveling still...even three years later.
To say that today is like any other day would be an understatement...I won't lie it's been an emotional one. Last year we took Camryn and Wyatt to Disneyland to celebrate 2 years of survivor and donor...this year that was the plan too. In fact on 10.20.06 I decided that every year after would be a celebration of Camryn's new beginning...
Obviously, there is no Disneyland trip this year...our passes expire today. Wishing that today was the only transplant day...but 6.4.09 now is the circled, countdown date on the calendar.
But, really 10.20.06 started it all...
Incredibly thankful today for Camryn's life...thankful for Wyatt's cord blood three years ago...and thankful for the two little faces that never cease to remind me that my time table is not the Lord's time table. That the most precious gifts often come in ways unexpected...
Traveling still...even three years later.
Monday, October 19, 2009
priceless...
For as much as this journey is long and there are days when pretty much all you want to do is throw in the towel...there are days that are simply priceless. Yesterday was one of those.
Camryn and I went to a baby shower for Auntie DeDe and Sweet Peighton...Camryn has been anticipating this event for weeks. She has the invitation on the fridge and knew that it was on the 18th. She was very excited! When we went shopping last week we picked out a special outfit just for the shower, and I must admit that Camryn looked awfully cute.
To say that Camryn enjoyed herself would be a gross understatement, she thoroughly LOVED every second of the day. She got to play with Riley and see her family and friends (adult friends). She played the shower games, helped DeDe open presents, and just loved being there. I must admit that I found myself smiling quite a lot yesterday, smiling at my little girl. Who loves life...she loves it! She savors every second and thoroughly, completely treasures the life she has.
Sometimes I feel guilty for not living my life to the fullest in light of the way my little girl lives. I find that I think of life in terms of "when we get down with isolation, then...". And really, there is a full life in front of us right now. Granted it is not the life either of us wanted nor planned; but it is a full life.
Priceless...
_____________________________
In other news Wyatt had a low grade fever and quite a cough so I got him in to see Dr.K today and he has an ear infection, lovely! Now Wyatt is on some antibiotics and we are being careful with him and Camryn. We did call Camryn's doctors and they said just keep an eye on her and that they would see us next Tuesday. I thought for sure they would want to see her this week, but thankfully if Camryn keeps doing what she is doing then we'll go to clinic next week. Her doctors also decided to lower her steroids a wee bit...but, we'll take any lowering only 6mls a day instead of 7.
We are thankful for our children who daily fill our lives with much joy...yes, this is not the parenthood journey Jason and I expected, but we wouldn't trade our children for anything. So, if this is the journey...
We'll take it, the highs and the lows...after all every moment spent with Camryn and Wyatt is absolutely priceless.
Camryn and I went to a baby shower for Auntie DeDe and Sweet Peighton...Camryn has been anticipating this event for weeks. She has the invitation on the fridge and knew that it was on the 18th. She was very excited! When we went shopping last week we picked out a special outfit just for the shower, and I must admit that Camryn looked awfully cute.
To say that Camryn enjoyed herself would be a gross understatement, she thoroughly LOVED every second of the day. She got to play with Riley and see her family and friends (adult friends). She played the shower games, helped DeDe open presents, and just loved being there. I must admit that I found myself smiling quite a lot yesterday, smiling at my little girl. Who loves life...she loves it! She savors every second and thoroughly, completely treasures the life she has.
Sometimes I feel guilty for not living my life to the fullest in light of the way my little girl lives. I find that I think of life in terms of "when we get down with isolation, then...". And really, there is a full life in front of us right now. Granted it is not the life either of us wanted nor planned; but it is a full life.
Priceless...
_____________________________
In other news Wyatt had a low grade fever and quite a cough so I got him in to see Dr.K today and he has an ear infection, lovely! Now Wyatt is on some antibiotics and we are being careful with him and Camryn. We did call Camryn's doctors and they said just keep an eye on her and that they would see us next Tuesday. I thought for sure they would want to see her this week, but thankfully if Camryn keeps doing what she is doing then we'll go to clinic next week. Her doctors also decided to lower her steroids a wee bit...but, we'll take any lowering only 6mls a day instead of 7.
We are thankful for our children who daily fill our lives with much joy...yes, this is not the parenthood journey Jason and I expected, but we wouldn't trade our children for anything. So, if this is the journey...
We'll take it, the highs and the lows...after all every moment spent with Camryn and Wyatt is absolutely priceless.
Saturday, October 17, 2009
encouragement...
Many thanks to those of you who have passed a long words of encouragement since my last post...THANK YOU! My heart was encouraged by your kindness, thoughtfulness and just the words that again reminded me of some true things...
"So do not worry about tomorrow, for tomorrow will bring worries of its own. Today's trouble is enough for today." ~ Matthew 6:34
"The Lord your God is with you, He is mighty to save. He will take great delight in you, He will quiet you with His love, He will rejoice over you with singing." ~ Zephaniah 3:17
"The Lord is good, a refuge in times of trouble. He cares for those who trust in Him." ~ Nahum 1:7
Each of these verses came from dear women to my heart...and my heart was encouraged. Encouraged to live each day for what it is...what is right in front of me and release the fears to Him. To let go...to allow the Lord to hold the worries of my heart that He knows. To take my refuge in Him and find that today He has placed before me life...a life abundant.
There is hope, healing and safety found in Scripture...found in His words...found in Him.
Thank you dear friends for helping me find encouragement in Him...Your words mean more than you will ever know. Thank you for taking the time to encourage me, the Lord truly used you to help carry me.
Last night I picked up a book I read awhile ago, A New Kind of Normal and this quote just jumped off the page...
This quote starts the chapter titled "The Battle of Mind and Heart." Oh that pretty much sums it up...the battle between my mind and worries; and my heart and rest.
Thank you Lord that you know the worries and like your Word says, you will be my refuge. You will carry us through, because you care for us. Because you love us...
Because we have your WORD on it.
"So do not worry about tomorrow, for tomorrow will bring worries of its own. Today's trouble is enough for today." ~ Matthew 6:34
"The Lord your God is with you, He is mighty to save. He will take great delight in you, He will quiet you with His love, He will rejoice over you with singing." ~ Zephaniah 3:17
"The Lord is good, a refuge in times of trouble. He cares for those who trust in Him." ~ Nahum 1:7
Each of these verses came from dear women to my heart...and my heart was encouraged. Encouraged to live each day for what it is...what is right in front of me and release the fears to Him. To let go...to allow the Lord to hold the worries of my heart that He knows. To take my refuge in Him and find that today He has placed before me life...a life abundant.
There is hope, healing and safety found in Scripture...found in His words...found in Him.
Thank you dear friends for helping me find encouragement in Him...Your words mean more than you will ever know. Thank you for taking the time to encourage me, the Lord truly used you to help carry me.
Last night I picked up a book I read awhile ago, A New Kind of Normal and this quote just jumped off the page...
"Ruthless trust ultimately comes down to this: faith in the person of Jesus and hope in His promise. In spite of all disconcerting appearances, we stare down death without nervousness and anticipate resurrection solely because Jesus has said, "You Have my word on it."~ Brennan Manning
This quote starts the chapter titled "The Battle of Mind and Heart." Oh that pretty much sums it up...the battle between my mind and worries; and my heart and rest.
Thank you Lord that you know the worries and like your Word says, you will be my refuge. You will carry us through, because you care for us. Because you love us...
Because we have your WORD on it.
Thursday, October 15, 2009
some days...
You just wonder...really?...really?
We got the news from Camryn's doctors today and her blood clot is still there, smaller; but there. So the Lovenox shots continue...sigh.
We were so hopeful, so hopeful that maybe Camryn could catch a break and be done with the nightly shots. After all she's had over a 140 of them, so we thought just maybe that would be enough. Apparently it isn't...yet.
You know sometimes in the midst of this journey I wonder really...really Lord, this is your plan?
I trust Him...I believe Him...I know Him and yet I wonder...
Because we do live in a fallen world where bad things happen to seemingly innocent people, where innocence is lost in a blink of an eye and hope seems all but lost.
Yet it isn't...really?
I got an email today a prayer request update on another little boy fighting the fight unlikely any other...and he is fighting a foe that doesn't play fair. His parents are wrestling with decisions that no parent should ever have to make...and my heart just breaks. As I was telling Jason about their story tears just fell, because in the quietness of my own heart I live with the ever present fear of relapse...that one day a lab sheet will report bottomed out numbers and the word leukemia will haunt us again. I know that the Lord does not want us to live in fear...that this is not His will for our lives. That the brokenness, failed world brings fears and hurts that just are not fair.
Even in the midst of the storms that rage and the fears that loom I will trust...I will hold on...I will believe...
Because really...this is not what HE wants for me, for us, for you.
And some days all I can do is beg Him for the grace to carry us through...and without fail He does.
We got the news from Camryn's doctors today and her blood clot is still there, smaller; but there. So the Lovenox shots continue...sigh.
We were so hopeful, so hopeful that maybe Camryn could catch a break and be done with the nightly shots. After all she's had over a 140 of them, so we thought just maybe that would be enough. Apparently it isn't...yet.
You know sometimes in the midst of this journey I wonder really...really Lord, this is your plan?
I trust Him...I believe Him...I know Him and yet I wonder...
Because we do live in a fallen world where bad things happen to seemingly innocent people, where innocence is lost in a blink of an eye and hope seems all but lost.
Yet it isn't...really?
I got an email today a prayer request update on another little boy fighting the fight unlikely any other...and he is fighting a foe that doesn't play fair. His parents are wrestling with decisions that no parent should ever have to make...and my heart just breaks. As I was telling Jason about their story tears just fell, because in the quietness of my own heart I live with the ever present fear of relapse...that one day a lab sheet will report bottomed out numbers and the word leukemia will haunt us again. I know that the Lord does not want us to live in fear...that this is not His will for our lives. That the brokenness, failed world brings fears and hurts that just are not fair.
Even in the midst of the storms that rage and the fears that loom I will trust...I will hold on...I will believe...
Because really...this is not what HE wants for me, for us, for you.
And some days all I can do is beg Him for the grace to carry us through...and without fail He does.
Tuesday, October 13, 2009
His love...
"prayer changes things..."
Thank you to those who have been praying for Camryn, especially today. Camryn woke up bright and early today in great spirits to head down to clinic. I know she hates going, but as with almost everything in life Camryn makes the best of it. Jason and Camryn headed out early and in my heart I just prayed that the Lord would lavish His love on her today...
Lately I have been pondering His great love for us over and over...the realities of how deep His love is...how incredibly unexplainable love in the truest form is...how His love is perfect...how He is love.
And today I could not help but feel that it was His great love for Camryn that would carry her through...
Clinic went well...Camryn got to see Nurse Charlotte and from what I hear she was Nurse Charlotte's little shadow helping her gather the supplies and just being with her. I cannot tell you enough how blessed our lives are because of Nurse Charlotte and her love for Camryn. Nurse Charlotte has turned many a dark cloudy day into sunshine for Camryn. After labs Camryn saw Dr.K and Dr.A...who both agreed that Camryn looks good and that her rash is getting so much better. In light of that the steroids were lowered...woohoo! At this point it will be a slow wean, but a wean nonetheless and we'll take it! Otherwise Camryn is looking great and just doing what they expect and want.
Jason talked to the doctors about the issue of coming once a week to clinic with both of us back at work. Camryn's doctors are amazing and agreed to put her clinic visits every other week with a home health lab draw on the off week. Only two trips a month, we are so thankful. At the rate we were going to clinic we would have run out of time off within a couple months, thankfully now it'll be a bit better. Of course we'll do whatever is necessary for Camryn, but to have a bit of a break is wonderful. The condition of every other week is for us to call as soon as we see something, anything change; which as Dr.A said is what you guys do anyway. Yep, we are hypersensitive parents on our second transplant...no need to worry that we'll wait.
After clinic Jason and Camryn headed up to the echo lab for a check on her blood clot. Camryn did wonderful through the echo and followed instructions so well, in fact she got two pencils and some stickers to prove it. :) The tech said that she didn't see the clot by Camryn's line, but that the echo would have to be read by the cardiologists for official results. We have to wait until Thursday, but for now I'm praising the Lord that the clot was smaller and maybe even gone! Just to know that the Lovenox is working is enough...and maybe, just maybe the clot could be gone! That would be just the greatest! Trying not to get my hopes up, but honestly to hear that news today made my heart smile!
His LOVE...
I know that not everything works the way we want it to...we can pray and pray and the outcome may not be what we wanted. We have walked the road of relapse, so no need to remind me that sometimes the plans just are not what you want...
But, His love never ceases to amaze me...
In the midst of all that is, in the midst of the realities of today and the waiting for the news He kept reminding me over and over...
Oh how I love you...
Later this afternoon I got the email with Camryn's labs...and they are fantastic! She's doing so well...so, so thankful! We know there is a long journey ahead, but to hear the good news throughout is encouraging.
And the best news of all...oh how he loves us...
And because music speaks to my heart...
He is jealous for me,
Loves like a hurricane, I am a tree,
Bending beneath the weight of his wind and mercy.
When all of a sudden,
I am unaware of these afflictions eclipsed by glory,
And I realise just how beautiful You are,
And how great Your affections are for me.
And oh, how He loves us so,
Oh how He loves us,
How He loves us all
He loves us,
Oh how He loves us,
Oh how He loves us,
Oh how He loves.
Yeah, He loves us,
Oh how He loves us,
Oh how He loves us,
Oh how He loves.
And we are His portion and He is our prize,
Drawn to redemption by the grace in His eyes,
If his grace is an ocean, we’re all sinking.
And heaven meets earth like an unforeseen kiss,
And my heart turns violently inside of my chest,
I don’t have time to maintain these regrets,
When I think about, the way…
He loves us,
Oh how He loves us,
Oh how He loves us,
Oh how He loves.
Yeah, He loves us,
Oh how He loves us,
Oh how He loves us,
Oh how He loves.
~ David Crowder Band
Let those words just sink in your heart...
He loves us...
Thank you to those who have been praying for Camryn, especially today. Camryn woke up bright and early today in great spirits to head down to clinic. I know she hates going, but as with almost everything in life Camryn makes the best of it. Jason and Camryn headed out early and in my heart I just prayed that the Lord would lavish His love on her today...
Lately I have been pondering His great love for us over and over...the realities of how deep His love is...how incredibly unexplainable love in the truest form is...how His love is perfect...how He is love.
And today I could not help but feel that it was His great love for Camryn that would carry her through...
Clinic went well...Camryn got to see Nurse Charlotte and from what I hear she was Nurse Charlotte's little shadow helping her gather the supplies and just being with her. I cannot tell you enough how blessed our lives are because of Nurse Charlotte and her love for Camryn. Nurse Charlotte has turned many a dark cloudy day into sunshine for Camryn. After labs Camryn saw Dr.K and Dr.A...who both agreed that Camryn looks good and that her rash is getting so much better. In light of that the steroids were lowered...woohoo! At this point it will be a slow wean, but a wean nonetheless and we'll take it! Otherwise Camryn is looking great and just doing what they expect and want.
Jason talked to the doctors about the issue of coming once a week to clinic with both of us back at work. Camryn's doctors are amazing and agreed to put her clinic visits every other week with a home health lab draw on the off week. Only two trips a month, we are so thankful. At the rate we were going to clinic we would have run out of time off within a couple months, thankfully now it'll be a bit better. Of course we'll do whatever is necessary for Camryn, but to have a bit of a break is wonderful. The condition of every other week is for us to call as soon as we see something, anything change; which as Dr.A said is what you guys do anyway. Yep, we are hypersensitive parents on our second transplant...no need to worry that we'll wait.
After clinic Jason and Camryn headed up to the echo lab for a check on her blood clot. Camryn did wonderful through the echo and followed instructions so well, in fact she got two pencils and some stickers to prove it. :) The tech said that she didn't see the clot by Camryn's line, but that the echo would have to be read by the cardiologists for official results. We have to wait until Thursday, but for now I'm praising the Lord that the clot was smaller and maybe even gone! Just to know that the Lovenox is working is enough...and maybe, just maybe the clot could be gone! That would be just the greatest! Trying not to get my hopes up, but honestly to hear that news today made my heart smile!
His LOVE...
I know that not everything works the way we want it to...we can pray and pray and the outcome may not be what we wanted. We have walked the road of relapse, so no need to remind me that sometimes the plans just are not what you want...
But, His love never ceases to amaze me...
In the midst of all that is, in the midst of the realities of today and the waiting for the news He kept reminding me over and over...
Oh how I love you...
Later this afternoon I got the email with Camryn's labs...and they are fantastic! She's doing so well...so, so thankful! We know there is a long journey ahead, but to hear the good news throughout is encouraging.
And the best news of all...oh how he loves us...
And because music speaks to my heart...
He is jealous for me,
Loves like a hurricane, I am a tree,
Bending beneath the weight of his wind and mercy.
When all of a sudden,
I am unaware of these afflictions eclipsed by glory,
And I realise just how beautiful You are,
And how great Your affections are for me.
And oh, how He loves us so,
Oh how He loves us,
How He loves us all
He loves us,
Oh how He loves us,
Oh how He loves us,
Oh how He loves.
Yeah, He loves us,
Oh how He loves us,
Oh how He loves us,
Oh how He loves.
And we are His portion and He is our prize,
Drawn to redemption by the grace in His eyes,
If his grace is an ocean, we’re all sinking.
And heaven meets earth like an unforeseen kiss,
And my heart turns violently inside of my chest,
I don’t have time to maintain these regrets,
When I think about, the way…
He loves us,
Oh how He loves us,
Oh how He loves us,
Oh how He loves.
Yeah, He loves us,
Oh how He loves us,
Oh how He loves us,
Oh how He loves.
~ David Crowder Band
Let those words just sink in your heart...
He loves us...
Monday, October 12, 2009
prayer request
Tomorrow is Camryn's clinic appointment and an echo to check her blood clot. Her clinic appointment is a routine one, seeing the doctors, lab draw and maybe a lowering of steroids? We are hoping! The echo is to check the blood clot that seems to have developed on Camryn's central line. We are hopeful that the clot is either smaller or gone...yes, we know that might be high hopes, but we'll hope anyway!
We are hopeful for good news tomorrow...we'd love to get lower steroids, and an end of the nightly Lovenox shots!
Would you pray along with us? We know that the Lord has his hands on Camryn, we know that He has gone before us and that He will continue to carry us through. And yet, we also know that there is significant power in prayer...
Camryn Lee is a trooper, a fighter and we are hopeful that maybe tomorrow she'll catch a break and be done with the shots...
Hoping that after 140 shots she could be done...or at the very least hear that the shots are doing their job.
We are hopeful for good news tomorrow...we'd love to get lower steroids, and an end of the nightly Lovenox shots!
Would you pray along with us? We know that the Lord has his hands on Camryn, we know that He has gone before us and that He will continue to carry us through. And yet, we also know that there is significant power in prayer...
Camryn Lee is a trooper, a fighter and we are hopeful that maybe tomorrow she'll catch a break and be done with the shots...
Hoping that after 140 shots she could be done...or at the very least hear that the shots are doing their job.
Sunday, October 11, 2009
weekend update...
The weekend has come and will be gone in a few hours...aw, how I wish it could last a bit longer as this has been a very nice weekend.
To start with on Friday when I got home from work I took the kids shopping for a bit to look for Camryn some clothes. One of the side effects of steroids that I really dislike is weight gain...if you know Camryn well, you know that she has always been a little stick of a girl. Never too much meat on her bones. Well, that's not the case now. Earlier in the week I had put on a long sleeve shirt as the fall weather is beginning and I just felt horrible for Camryn; the shirt barely fit. I know clothes aren't everything, but when you are a little girl who has lost her hair and now you have gained close to ten pounds...well, feeling comfortable matters a lot. Jason and I talked and we decided to get her a few things to wear now and then once she loses the steroid weight we can just hang on to them for later.
Shopping was fun, I let Camryn pick out a few shirts and then I found a couple of cute things for specific occasions coming up. For the first time in a long time I didn't feel like a cancer mom with Camryn...we were a daughter and mom shopping for clothes. We smiled, laughed and I watched as my eyes were drawn to different things, but she liked others. Oh, I could see that the days of me soley dressing Camryn were limited...she loves bright colors and patterns, I love basic colors and solids. Our time together was one of hte most fun moments we have had in a long time, doing something so normal it almost felt *normal*.
Saturday morning we headed to the pumpkin patch to meet up with my sister's family. This is a family tradition from the time my oldest nephew was a little guy and well, he is 23 now. What a fun time we had...we missed my mom though as she has been really sick. Nothing says fall like the pumpkin patch...
YUMMY!
YUMMY TOO!
I love this picture...
Trying to pick out the perfect one.
Oh this face...what a story it tells.
"I just can't pick one!"
Wyatt's choice.
Oh little man...
We had a wonderful time...what a blessed time we had with family. Laughing, chatting and just being together; it was a wonderful time!
We came home and the kids just crashed, they were tired. After Camryn woke up we did a little craft making pumpkins out of brown lunch bags...oh yeah, I can get crafty! :) Lots of fun!
Today we headed out to our niece Riley's birthday party. We had to go early and leave before the rest of the guests arrived to keep Camryn away from the germs and such. Camryn absolutely LOVES parties, seriously this girl has some serious party planning in her future. She had a great time playing with Riley, seeing Auntie DeDe and Uncle Robby...she enjoyed being out for a bit and it was fun. Wyatt and Riley are the cutest together...only five weeks apart they are the best of friends. Wyatt has been looking forward to Riley's birthday for weeks...so he enjoyed the bounce house and just being with Riley.
Wy & Ry
Camryn loves Riley!
Oh these two...
Wy...Ry...Cam
Best of Cousins, Best of Friends
Trying to give the birthday girl kisses...
A very blessed weekend...a very grateful family of four...thankful for the bright moments throughout the journey.
Holding the moments so dear.
To start with on Friday when I got home from work I took the kids shopping for a bit to look for Camryn some clothes. One of the side effects of steroids that I really dislike is weight gain...if you know Camryn well, you know that she has always been a little stick of a girl. Never too much meat on her bones. Well, that's not the case now. Earlier in the week I had put on a long sleeve shirt as the fall weather is beginning and I just felt horrible for Camryn; the shirt barely fit. I know clothes aren't everything, but when you are a little girl who has lost her hair and now you have gained close to ten pounds...well, feeling comfortable matters a lot. Jason and I talked and we decided to get her a few things to wear now and then once she loses the steroid weight we can just hang on to them for later.
Shopping was fun, I let Camryn pick out a few shirts and then I found a couple of cute things for specific occasions coming up. For the first time in a long time I didn't feel like a cancer mom with Camryn...we were a daughter and mom shopping for clothes. We smiled, laughed and I watched as my eyes were drawn to different things, but she liked others. Oh, I could see that the days of me soley dressing Camryn were limited...she loves bright colors and patterns, I love basic colors and solids. Our time together was one of hte most fun moments we have had in a long time, doing something so normal it almost felt *normal*.
Saturday morning we headed to the pumpkin patch to meet up with my sister's family. This is a family tradition from the time my oldest nephew was a little guy and well, he is 23 now. What a fun time we had...we missed my mom though as she has been really sick. Nothing says fall like the pumpkin patch...
YUMMY!
YUMMY TOO!
I love this picture...
Trying to pick out the perfect one.
Oh this face...what a story it tells.
"I just can't pick one!"
Wyatt's choice.
Oh little man...
We had a wonderful time...what a blessed time we had with family. Laughing, chatting and just being together; it was a wonderful time!
We came home and the kids just crashed, they were tired. After Camryn woke up we did a little craft making pumpkins out of brown lunch bags...oh yeah, I can get crafty! :) Lots of fun!
Today we headed out to our niece Riley's birthday party. We had to go early and leave before the rest of the guests arrived to keep Camryn away from the germs and such. Camryn absolutely LOVES parties, seriously this girl has some serious party planning in her future. She had a great time playing with Riley, seeing Auntie DeDe and Uncle Robby...she enjoyed being out for a bit and it was fun. Wyatt and Riley are the cutest together...only five weeks apart they are the best of friends. Wyatt has been looking forward to Riley's birthday for weeks...so he enjoyed the bounce house and just being with Riley.
Wy & Ry
Camryn loves Riley!
Oh these two...
Wy...Ry...Cam
Best of Cousins, Best of Friends
Trying to give the birthday girl kisses...
A very blessed weekend...a very grateful family of four...thankful for the bright moments throughout the journey.
Holding the moments so dear.
Wednesday, October 7, 2009
fish out of water...
Last night I did it...I actually went to the class for parents where I teach. I will honestly say that I was nervous, anxious and seriously considered just not going. I know, it's just a class right?
Jason lovingly encouraged me to go and see...give it one week.
I did...and I will be going back.
For so much of Camryn's journey and Wyatt's journey I have felt quite literally like a fish out of water. Like I really don't fit too many places, that there are many social situations that are very awkward for me. I knew this would be one of those...
I tire of telling our story at times...I have to tell it a lot and sometimes I would rather just drift into the background and be a no one. After all that is what my life feels like a lot of times...that no one really sees what is taking place within our family of four. That the struggles are there where Camryn's labs are great or bad...that this is a journey and quite frankly we are no where near the end.
I walked into the room and swallowed hard, thankfully the teacher of the class is a friend of mine who knows Camryn's story and understands the dreams delayed that we are living through. As parents were chatting before the class, I found myself wanting to run away...what do I say, "My daughter was supposed to be in kindergarten...she had leukemia...bone marrow transplant."? Yes, that is exactly what I said when a mom turned to me and said, "What room is your child in?". I smiled and very politely and very tactfully explained where my daughter was...and you know what? For the first time in a long time I didn't feel weird, I didn't feel completely out of it...the mom smiled and said, "I am so sorry...I will stop complaining about my life...". We went on to chat for a minute and then my friend picked on me to introduce myself first...so I did.
I am Dana Mikels. I teach 8th grade History here at Village and my daughter Camryn should be in kindergarten here, but she had leukemia and a bone marrow transplant and our hope is for her to be here in first grade. So, Mrs.V invited me to come and get a head start on this program...
To which Mrs.V replied, "We've been praying for our little sweetie Camryn and we cannot wait until she is here with us."
And that was it...I survived. I breathed deeply the rest of the night, interacted and learned and felt very much like a bit of myself was returning.
At the end of the class we closed in prayer and after the Amen was said one of the Dad's said, "and pray for healing for Camryn." And one mom said..."I hope Camryn and my son can be classmates in first grade."
Really? These were complete strangers to me and yet they reached out to me in very tangible ways...ways that meant so much.
Yes, it was a class...but the Lord provided some huge healing for me.
Thanks for the prayers and encouragement...I so needed it.
Jason lovingly encouraged me to go and see...give it one week.
I did...and I will be going back.
For so much of Camryn's journey and Wyatt's journey I have felt quite literally like a fish out of water. Like I really don't fit too many places, that there are many social situations that are very awkward for me. I knew this would be one of those...
I tire of telling our story at times...I have to tell it a lot and sometimes I would rather just drift into the background and be a no one. After all that is what my life feels like a lot of times...that no one really sees what is taking place within our family of four. That the struggles are there where Camryn's labs are great or bad...that this is a journey and quite frankly we are no where near the end.
I walked into the room and swallowed hard, thankfully the teacher of the class is a friend of mine who knows Camryn's story and understands the dreams delayed that we are living through. As parents were chatting before the class, I found myself wanting to run away...what do I say, "My daughter was supposed to be in kindergarten...she had leukemia...bone marrow transplant."? Yes, that is exactly what I said when a mom turned to me and said, "What room is your child in?". I smiled and very politely and very tactfully explained where my daughter was...and you know what? For the first time in a long time I didn't feel weird, I didn't feel completely out of it...the mom smiled and said, "I am so sorry...I will stop complaining about my life...". We went on to chat for a minute and then my friend picked on me to introduce myself first...so I did.
I am Dana Mikels. I teach 8th grade History here at Village and my daughter Camryn should be in kindergarten here, but she had leukemia and a bone marrow transplant and our hope is for her to be here in first grade. So, Mrs.V invited me to come and get a head start on this program...
To which Mrs.V replied, "We've been praying for our little sweetie Camryn and we cannot wait until she is here with us."
And that was it...I survived. I breathed deeply the rest of the night, interacted and learned and felt very much like a bit of myself was returning.
At the end of the class we closed in prayer and after the Amen was said one of the Dad's said, "and pray for healing for Camryn." And one mom said..."I hope Camryn and my son can be classmates in first grade."
Really? These were complete strangers to me and yet they reached out to me in very tangible ways...ways that meant so much.
Yes, it was a class...but the Lord provided some huge healing for me.
Thanks for the prayers and encouragement...I so needed it.
Tuesday, October 6, 2009
tuesdays=clinic
For now every Tuesday equals clinic...back to weekly appointments...sigh.
For what now is becoming a weekly routine Camryn and her daddy head out bright and early to make it to clinic right when it opens so as to avoid a long wait...today was no different. Camryn in her usual style took everything in stride, she was excited that today Wyatt was coming with Papa (my dad) took pick her up from her daddy. Jason and my dad have a meeting place so that Jason can hand Camryn off and make it back to work without missing too much time. We have to conserve as much as Jason's time as possible since I am part-time and no longer have paid time off. I'm pretty sure a day will come for me to miss work, but we are trying to be good stewards of our time and manage it as best as possible.
This week has been a bit different in our routines as my mom has been sick so my dad has graciously taken over the duty of watching the kids while I'm at work. I cannot say enough how blessed I am to have my parents to help out as much as they do, truly they are one of the greatest helps in my life...and this week especially my dad.
Camryn's appointment went well...her doctors continue to be pleased with how she is doing. The general response is, "she's doing well." And we'll take that! Camryn got to see Dr.A and Dr.M today and that was a treat...both of whom are pleased with her progress. Honestly, sometimes I feel like we are moving backwards, but they assure us that this is right where they want Camryn. I have to remind myself that this time around is completely different, we are fighting against a relapse on top of just a normal transplant recovery.
It was decided today to lower Camryn's steroids and start the slow wean...yay! We are excited to begin to get these over with...steroids are quite possibly the most annoying meds because of the intense side effects. I know Camryn is anxious to get off of them so a lowering is very welcomed! We should hear later today the results of Camryn's cyclosporin trough and her meds will be adjusted further.
On the other hand another med was added today, bringing the grand total up to 6 meds on the weekdays and 7 on the weekends, plus a nightly Lovenox shot. The med that was added is to protect Camryn's liver...basically her liver functions have been running a bit high and this is a precautionary step to protect her. I totally understand that, but am discouraged to add another med to our already full cocktail. But, knowing that these are the steps necessary...
Camryn's labs look good, her numbers right where they were last week...nice and strong, nice and high. We never tire of these great numbers, really...they are gifts beyond measure. I was thinking the other night that when Camryn was first diagnosed she had a platelet count of 7,000 and now she's over 240,000 that makes a huge difference. Her other numbers are well within normal range...her marrow is obviously kicking out good red cells, platelets and white cells. Good job Wyatt's marrow...you're doing great!
Camryn will also have an echo next Tuesday to check on her blood clot near her central line. We are hopeful that the past months on Lovenox have significantly affected the clot and that it is much smaller, maybe even gone? Maybe that's a little too hopeful, but it would be so nice to be done with the nightly shots. At one time Camryn's doctors had talked about the possibility of *pulling* her line and being rid of the shots that way. Honestly, with going to clinic once a week and lab draws for cyclosporin levels regularly; pulling Camryn's line most likely isn't the best option now. I would hate for her to have weekly pokes for labs...even though she has daily shots, the Lovenox shot is a small insulin needle and it doesn't bother Camryn too much. But, lab draw pokes are much more dramatic...so I'm sure we'll keep the central line for a lot longer. After all last time Camryn kept her line for 8 months post-transplant so we've got at least 4 months until we are there.
On a funny note...Camryn told me today that she named her caps on her central line. Camryn has a double lumen, with one lumen red and one white. Evidently, Nurse Charlotte uses the red lumen for lab draws and Nurse Syd uses the white one...so it makes perfect sense for her now name them accordingly. Seriously, what kid finds joy and humor in naming her line? Only a kid living in the cancer world...so now we refer to her lines by name.
Tonight I'm heading to a class for Kindergarten parents at the school where I work and where Camryn would be attending...I'm nervous, anxious and such. I'm pretty sure we'll have to introduce ourselves and say what class our child is in...and well, I don't have to tell you what my answer is. Not sure if I'm entirely ready to explain why I'm there...not sure I'm ready to explain our journey again to strangers. We'll see how it goes...
Thanks as always for your thoughts and prayers...we cherish them. Camryn continues to recover and we are so thankful for how well she is doing...we are thankful for the many of you that continually check in and continue to pray for our little girl.
The Lord never ceases to amaze us...
For what now is becoming a weekly routine Camryn and her daddy head out bright and early to make it to clinic right when it opens so as to avoid a long wait...today was no different. Camryn in her usual style took everything in stride, she was excited that today Wyatt was coming with Papa (my dad) took pick her up from her daddy. Jason and my dad have a meeting place so that Jason can hand Camryn off and make it back to work without missing too much time. We have to conserve as much as Jason's time as possible since I am part-time and no longer have paid time off. I'm pretty sure a day will come for me to miss work, but we are trying to be good stewards of our time and manage it as best as possible.
This week has been a bit different in our routines as my mom has been sick so my dad has graciously taken over the duty of watching the kids while I'm at work. I cannot say enough how blessed I am to have my parents to help out as much as they do, truly they are one of the greatest helps in my life...and this week especially my dad.
Camryn's appointment went well...her doctors continue to be pleased with how she is doing. The general response is, "she's doing well." And we'll take that! Camryn got to see Dr.A and Dr.M today and that was a treat...both of whom are pleased with her progress. Honestly, sometimes I feel like we are moving backwards, but they assure us that this is right where they want Camryn. I have to remind myself that this time around is completely different, we are fighting against a relapse on top of just a normal transplant recovery.
It was decided today to lower Camryn's steroids and start the slow wean...yay! We are excited to begin to get these over with...steroids are quite possibly the most annoying meds because of the intense side effects. I know Camryn is anxious to get off of them so a lowering is very welcomed! We should hear later today the results of Camryn's cyclosporin trough and her meds will be adjusted further.
On the other hand another med was added today, bringing the grand total up to 6 meds on the weekdays and 7 on the weekends, plus a nightly Lovenox shot. The med that was added is to protect Camryn's liver...basically her liver functions have been running a bit high and this is a precautionary step to protect her. I totally understand that, but am discouraged to add another med to our already full cocktail. But, knowing that these are the steps necessary...
Camryn's labs look good, her numbers right where they were last week...nice and strong, nice and high. We never tire of these great numbers, really...they are gifts beyond measure. I was thinking the other night that when Camryn was first diagnosed she had a platelet count of 7,000 and now she's over 240,000 that makes a huge difference. Her other numbers are well within normal range...her marrow is obviously kicking out good red cells, platelets and white cells. Good job Wyatt's marrow...you're doing great!
Camryn will also have an echo next Tuesday to check on her blood clot near her central line. We are hopeful that the past months on Lovenox have significantly affected the clot and that it is much smaller, maybe even gone? Maybe that's a little too hopeful, but it would be so nice to be done with the nightly shots. At one time Camryn's doctors had talked about the possibility of *pulling* her line and being rid of the shots that way. Honestly, with going to clinic once a week and lab draws for cyclosporin levels regularly; pulling Camryn's line most likely isn't the best option now. I would hate for her to have weekly pokes for labs...even though she has daily shots, the Lovenox shot is a small insulin needle and it doesn't bother Camryn too much. But, lab draw pokes are much more dramatic...so I'm sure we'll keep the central line for a lot longer. After all last time Camryn kept her line for 8 months post-transplant so we've got at least 4 months until we are there.
On a funny note...Camryn told me today that she named her caps on her central line. Camryn has a double lumen, with one lumen red and one white. Evidently, Nurse Charlotte uses the red lumen for lab draws and Nurse Syd uses the white one...so it makes perfect sense for her now name them accordingly. Seriously, what kid finds joy and humor in naming her line? Only a kid living in the cancer world...so now we refer to her lines by name.
Tonight I'm heading to a class for Kindergarten parents at the school where I work and where Camryn would be attending...I'm nervous, anxious and such. I'm pretty sure we'll have to introduce ourselves and say what class our child is in...and well, I don't have to tell you what my answer is. Not sure if I'm entirely ready to explain why I'm there...not sure I'm ready to explain our journey again to strangers. We'll see how it goes...
Thanks as always for your thoughts and prayers...we cherish them. Camryn continues to recover and we are so thankful for how well she is doing...we are thankful for the many of you that continually check in and continue to pray for our little girl.
The Lord never ceases to amaze us...
Sunday, October 4, 2009
day +122...4 months
Today marks four months since Camryn's bone marrow transplant...four months, can you believe it?!
Camryn will head to clinic on Tuesday for a visit with her friends, but especially for a lab draw to check her cyclosporin level. If her cyclosporin levels is within the range that the doctors want then most likely the doctors will discontinue Camryn's steroids. I cannot tell you how hopeful we are that there might be an end in sight for the steroids. One less med. would be great...especially when it is the big dose med.
Four months after transplant Camryn is thriving in school...her teacher Miss F brags on how well Camryn is doing. How well she picks up on things, does her homework and learns. Jason and I are thoroughly enjoying watching Camryn succeed with her school work. I think it gives Camryn a real sense of accomplishment in being able to do something on her own without mine or Jason's help. And the nightly homework? Well, I wouldn't trade those moments for anything...because at one time I wasn't entirely sure we'd get them. So, it's a treat watching Camryn develop and learn...and really begin to become her own little person.
Four months after donating Wyatt is thriving with life...he is quite possibly the cutest 3 year old boy ever. I know I'm biased, but I just love this little one. Wyatt has quite a personality and really he is a negotiator extraordinaire...he loves to strike a deal, he loves to figure out how he can get his way no matter what. Wyatt still loves playing trains and plays them all the time...both he and Camryn have become quite good at designing and assembling the track, which is fun for them.
Four months after one of the hardest days of our lives...Jason and I are doing alright. We don't miss hospital life and being a divided family in the least. We are both continually getting adjusted to our working world and trying to balance that with our *real* world.
All in all four months after transplant our family is doing the best that can be expected. The journey is long...never fast, never quick...but, there is an end somewhere down the road and with each passing day we are closer...
We'll get there one step at a time.
Camryn will head to clinic on Tuesday for a visit with her friends, but especially for a lab draw to check her cyclosporin level. If her cyclosporin levels is within the range that the doctors want then most likely the doctors will discontinue Camryn's steroids. I cannot tell you how hopeful we are that there might be an end in sight for the steroids. One less med. would be great...especially when it is the big dose med.
Four months after transplant Camryn is thriving in school...her teacher Miss F brags on how well Camryn is doing. How well she picks up on things, does her homework and learns. Jason and I are thoroughly enjoying watching Camryn succeed with her school work. I think it gives Camryn a real sense of accomplishment in being able to do something on her own without mine or Jason's help. And the nightly homework? Well, I wouldn't trade those moments for anything...because at one time I wasn't entirely sure we'd get them. So, it's a treat watching Camryn develop and learn...and really begin to become her own little person.
Four months after donating Wyatt is thriving with life...he is quite possibly the cutest 3 year old boy ever. I know I'm biased, but I just love this little one. Wyatt has quite a personality and really he is a negotiator extraordinaire...he loves to strike a deal, he loves to figure out how he can get his way no matter what. Wyatt still loves playing trains and plays them all the time...both he and Camryn have become quite good at designing and assembling the track, which is fun for them.
Four months after one of the hardest days of our lives...Jason and I are doing alright. We don't miss hospital life and being a divided family in the least. We are both continually getting adjusted to our working world and trying to balance that with our *real* world.
All in all four months after transplant our family is doing the best that can be expected. The journey is long...never fast, never quick...but, there is an end somewhere down the road and with each passing day we are closer...
We'll get there one step at a time.
Saturday, October 3, 2009
october...
When the calendar turned on Thursday I caught myself thinking "What ifs?...
October 20th marks three years since Camryn's first bone marrow transplant...I had hoped we would be going to Disneyland to celebrate another Happy Birthday of sorts like we did last year, but that is not to be. I had hoped that we would have a team in the Leukemia Society's Light the Night walk like we did last year, but that is not to be. I had hoped that we would celebrate various benchmarks throughout October building until the 20th, because in my heart of heart I never thought Camryn would have another transplant...another date on the calendar.
When Camryn relapsed in February I wondered if the dates in October would be as full of meaning as they once were? Would all the meaning now shift to June of 2009 and leave October of 2006? The answer simply is no.
As I look at the October calendar my heart can't help but see the various struggles of a month three years ago. I cannot help but remember that Wyatt was not even a month old when Camryn was admitted and we started our first (and I hoped last) divided journey of a family of four. I remember tears and tears holding my less than one month old son and handing him to my mom, Jason's mom, my aunt in order that I would be able to go spend time with Camryn. Yes, this month is full of meaning and memories, and that is no way to escape them.
For as much as we moved on from October of 2006, to her first 100 days, to 300 days, to a year and then two years...we find ourselves right back there in so many ways.
This week has been a rough one on me...I am finding it very difficult to settle into my new routine and schedule. I know I should be thankful that things have worked out like they have, and believe me I am thankful. But, this sudden shift in routines and rhythm is really a struggle for me. I find myself so divided and pulled here there and everywhere that I really don't feel like there is a peace to life right now. My calendar feels very empty and yet very full...I know it is the isolated life is really starting to settle in.
Camryn has really struggled this week with missing people...she just longs for her friends. She longs to go to Sunday School and see the people she abruptly left...she is lonely and I don't blame her. I am too. She is tired of Mommy and Daddy. She is tired of us being her social friends, of doing everything with us and she is just a bit sick of all of this. I don't blame her. I am too. Developmentally she is read to spread her wings and make new friends and have a life outside of me and Jason, I get that. I see little Kindergarten students and think "yes, Camryn is there." She wants a world of her own...she wants play dates, birthday party invitations, she wants tag on the playground...she wants it all. But that is not to be.
So as we navigate another October three years after the first one we realize that inasmuch as everything has changed, nothing has really change. We are learning how to make the most of what is in front of us and really there is only so much you can do. We try to find ways to give her space and let her be 5...and the fact that we have to figure all this out gets maddening for me. You know how badly I would love to drop her off at a friends house to play? Or watch her go to Sunday School and chat with the other little girls?
But that is not to be.
Physically Camryn is doing well...really far as the nuts and bolts of transplant she is doing great. So when people ask how she is doing the answer is well. But, the other stuff...the stuff that no one sees. Well, her heart is broken and I had so hoped October of 2009 would be completely different for her...
Guess I'm just left to wonder when is enough, enough?
October 20th marks three years since Camryn's first bone marrow transplant...I had hoped we would be going to Disneyland to celebrate another Happy Birthday of sorts like we did last year, but that is not to be. I had hoped that we would have a team in the Leukemia Society's Light the Night walk like we did last year, but that is not to be. I had hoped that we would celebrate various benchmarks throughout October building until the 20th, because in my heart of heart I never thought Camryn would have another transplant...another date on the calendar.
When Camryn relapsed in February I wondered if the dates in October would be as full of meaning as they once were? Would all the meaning now shift to June of 2009 and leave October of 2006? The answer simply is no.
As I look at the October calendar my heart can't help but see the various struggles of a month three years ago. I cannot help but remember that Wyatt was not even a month old when Camryn was admitted and we started our first (and I hoped last) divided journey of a family of four. I remember tears and tears holding my less than one month old son and handing him to my mom, Jason's mom, my aunt in order that I would be able to go spend time with Camryn. Yes, this month is full of meaning and memories, and that is no way to escape them.
For as much as we moved on from October of 2006, to her first 100 days, to 300 days, to a year and then two years...we find ourselves right back there in so many ways.
This week has been a rough one on me...I am finding it very difficult to settle into my new routine and schedule. I know I should be thankful that things have worked out like they have, and believe me I am thankful. But, this sudden shift in routines and rhythm is really a struggle for me. I find myself so divided and pulled here there and everywhere that I really don't feel like there is a peace to life right now. My calendar feels very empty and yet very full...I know it is the isolated life is really starting to settle in.
Camryn has really struggled this week with missing people...she just longs for her friends. She longs to go to Sunday School and see the people she abruptly left...she is lonely and I don't blame her. I am too. She is tired of Mommy and Daddy. She is tired of us being her social friends, of doing everything with us and she is just a bit sick of all of this. I don't blame her. I am too. Developmentally she is read to spread her wings and make new friends and have a life outside of me and Jason, I get that. I see little Kindergarten students and think "yes, Camryn is there." She wants a world of her own...she wants play dates, birthday party invitations, she wants tag on the playground...she wants it all. But that is not to be.
So as we navigate another October three years after the first one we realize that inasmuch as everything has changed, nothing has really change. We are learning how to make the most of what is in front of us and really there is only so much you can do. We try to find ways to give her space and let her be 5...and the fact that we have to figure all this out gets maddening for me. You know how badly I would love to drop her off at a friends house to play? Or watch her go to Sunday School and chat with the other little girls?
But that is not to be.
Physically Camryn is doing well...really far as the nuts and bolts of transplant she is doing great. So when people ask how she is doing the answer is well. But, the other stuff...the stuff that no one sees. Well, her heart is broken and I had so hoped October of 2009 would be completely different for her...
Guess I'm just left to wonder when is enough, enough?
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