memorial day...

What a wonderful holiday weekend...it was wonderful to get away, enjoy time with family and have normal find us. Of course we had Camryn's medicines and shots; but for a few days we were a family on vacation and truly we soaked it all in...

All of it...

This little girl adored Morro Bay. I must admit that she is looking more and more like herself to us...love this darling girl.



Playing on the giant community chess board...yes, there are giant size pieces you can rent if you'd like a game. Camryn and Wyatt opted for a made up game of racing around the colors.



Watching fishermen cut up fish on their boat while the seagulls, pelicans and seal waited for the scraps. The kids loved watching the animals, especially the seal...they had lots of fun with their Daddy checking it all out.



Down on a boat dock to get closer to the water with Makenna, my Dad and Josh. Yes, there was no railing which made me quite nervous, needless to say we didn't stay too long on the dock.



Wyatt and Makenna...



Beautiful...



Sleepyheads...they thought it was just too cool to share a bed. Wyatt chatted and chatted long after Camryn was sound asleep, but Camryn sleeps like a rock which is a good thing. Wyatt rolls, talks in his sleep and just is the most crazy sleeper ever, but they survived...



Classic vacation picture that mom makes you take...



Treasures in Wyatt's hand...



Hunting for treasure on Moonstone Beach in Cambria...absolutely beautiful. Lots of shells, rocks, all sorts of fun treasures of the sea.



Almost can't believe she's a year post-transplant...what a miracle packaged in a six year old. Loving how Camryn is returning to Camryn...her face, her smile...but her eyes those never changed. Those blue eyes...melt my heart.



Again the picture mom makes you take, but this time I captured the classic Wyatt...honestly Wyatt isn't the best spot at taking pictures, but oh my goodness how I love his goofyness, quite a three year old.



Checking out the star fish...



Love these boys...



Me and my boy...



We had such fun, it was wonderful to be away; absolutely wonderful. But, the best part? Being together...being a year past last year. Realizing that there is lots ahead this week and lots to celebrate this week. Thankful oh so thankful...

And on Memorial Day we remember the many who have served our country and protected our freedoms...

The brave men, living and dead, who struggled here, have consecrated it, far above our poor power to add or detract. The world will little note, nor long remember what we say here, but it can never forget what they did here. It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us -- that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion -- that we here highly resolve that these dead shall not have died in vain -- that this nation, under God, shall have a new birth of freedom -- and that government of the people, by the people, for the people, shall not perish from the earth. ~ Abraham Lincoln, The Gettysburg Address

Thank you.

from there to here...

Last year this suitcase was packed to spend an unknown amount of days in the hospital...



This year it is packed to spend the holiday weekend away for some family fun...



One of my family's long standing traditions is spending a holiday weekend in Morro Bay. We used to go over President's Day weekend, but now due to schedules and such we go Memorial Day weekend. My parents, my sister's family and us head up the coast and enjoy some down time together. There are no huge plans, but just time together; hanging out, eating good food, shopping, playing games and just being family. I won't lie it is one of my most favorite things to do in the whole world. It is a tradition every year, but it did not happen last year. No one went to Morro Bay, partly because we could not go as Camryn was preparing for transplant in just a few days. But, mainly because no one wanted to go without her...it's a family thing.

The kids are so excited to go and hang out with their cousins who are 24, 22 and 15; but they absolutely are cousins loving on each other. It is fun to spend time with my sister as well; we usually walk to some shops, hang out and spend her birthday enjoying sisterhood. Plus, there is usually always some playoff games to watch as tomorrow night I'm sure my dad will be anxious to watch the Laker game...always a family tradition as well.

One of the things I love most about my family is the sameness, the traditions and the familiarity...I can count on things, like I can count on the sun rising tomorrow. There is a stability unlike any other and I cherish it. We have gone to Morro Bay since my sister was little (she's 17 years older then me) so yes, it's been a part of my life forever and I love that it is a part of my children's life too.

But, more than all that...

I am happy that this suitcase is going to Morro Bay tomorrow instead of UCLA.



I am thrilled that Camryn and Wyatt both will be running around and enjoying life. I am thankful beyond words that a year ago tomorrow Camryn was finishing up radiation and starting chemo to begin the last leg of her conditioning before her and Wyatt's big day.

From there to here...a year has almost come and gone and in so many ways it feels unbelievable. Hard to fathom all that has transpired and all that has been overcome.

From a place of extreme uncertainty to a place of relative calm...even if at times it feels like the ground could still break into a million pieces.

From a place of holding so tightly to now learning to let go...trusting that His hands are better than our own.

Thankful...

Grateful...

Speechless...

Proud...

Excited...

To begin to feel normal in the midst of all that is not...

And trusting Him to hold us through all of it as He does time and time again; from there to here...

a year ago...

5.25.09 we were in the process of being admitted to the third floor for Camryn's second bone transplant...



And now a year later...

5.25.10 Camryn went to clinic almost a year post-transplant.

Last year we were embarking on a journey where a year seemed almost too much to comprehend and now here we are...and truthfully it is a miracle that Camryn is where she is at.

Today at clinic Camryn saw Dr. A and her nurse practitioner, she is always happy to see their familiar faces. Both Dr.A and B said that Camryn "looked great", honestly in the world of pediatric cancer most doctors can tell something is not right just by looking. So it is very encouraging to hear that Camryn is looking wonderfully. It was determined that Camryn could discontinue her "swishy" medicine as she calls it, so that's one med down...only roughly 5 more to go. Jason asked about her other meds as once a patient gets to a year sometimes some of the meds are lessened. At this point all the other meds continue as most of them are tied to the fact that Camryn is currently on an immuno-suppressant (tacrolimus); so those meds won't be changing for awhile.

They also discussed the echo that Camryn has yet to get. It was concluded that once Camryn changes medicial groups it will be much easier to get authorizations, so we are hopeful that in June the echo will get done. And maybe just maybe those results will be positive and that would led to an ending of the nightly Lovenox shots which as of tonight have become a nightly ritual...yes, 365 shots. Far as labs Camryn's labs look great, her numbers are nice and strong and just where we'd like them to be. In fact her ANC is at 2300...so her immune system is working, building and growing. Next month her doctors will run extensive blood work to check Camryn's B & T cells and see for sure just how strong that system is. Those results would then impact potentially starting immunizations and such.

A long journey awaits....a long journey complete.

If you were to ask me a year ago when I walked out of Camryn's room for the first time to come home without her for another 35 days, if I thought she could do this again, if her body could handle this, if we could handle this...I probably would have mustered an answer of yes, but deep within myself I did not know. A bone marrow transplant is an extensive medical journey, it is difficult on a patient, on their body and the outcomes are not givens. Having a child with cancer is an extensive emotional journey, it is difficult to parent the child, it is hard to know what is okay and what is not, all the while hoping against hope that your child can do it again. That she can fight with all she has to pull through.

And yet you have a healthy child...a child whose life is turned upside down as well. A child who knows all the medical things as well and lives with the realities that their sister may or may not be coming home. Even this morning as Camryn and Jason drove away Wyatt asked, "Is she coming home?". Yes, even a full year later his heart knows...that nothing is a given.

We are incredibly grateful for the year we have had...

This is not how it should be
This is not how it could be
This is how it is
And our God is in control

This is not how it will be
When we finally will see
We'll see with our own eyes
He was always in control

And we'll sing holy, holy, holy is our God
And we will finally really understand what it means
So we'll sing holy, holy, holy is our God
While we're waiting for that day

This is not where we planned to be
When we started this journey
But this is where we are
And our God is in control

Though this first taste is bitter
There will be sweetness forever
When we finally taste and see
That our God is in control

And we'll sing holy, holy, holy is our God
And we will finally really understand what it means
So we'll sing holy, holy, holy is our God
While we're waiting for that day

We're waiting for that day
We'll keep on waiting for that day
And we will rise
Our God is in control
~ Steven Curtis Chapman

for a moment...

The world was as it should be...

Today was one of those days that felt really normal, felt like our family had not walked the journey we have. For a moment it felt...real, normal and wonderful.

Camryn and I went to a baby shower for our dear friend Amee. Camryn had the honor to be a flowergirl in Amee & Derek's wedding...so Camryn loves Amee. In fact Camryn's friendship goes back to the day when Camryn was little and she would go "bug hunting" with Amee at the boys softball games. Camryn was so excited to go, because of course her Auntie Dede and cousin Riley would be there and she adores time with them. The shower was great...lots of yummy food and lots of wonderful, darling gifts. Camryn had lots of fun with Riley and meeting some other friends. Of course Camryn savors every event...she loves social life. She really had fun getting ready, chatting with the girls and for a moment just being six.

While we were at the shower with the girls Wyatt and Daddy got to go hang out with one of their favorite people Uncle Robby and baby cousin Sweet P. From what I'm told Wyatt loved playing with Riley's toys without Riley or Camryn there...yep, I'm sure he enjoyed playing without the Little Misses there. :)

We got home from the fun and both Camryn and Wyatt crashed for a bit and so did I...we quietly enjoyed the rest of the afternoon resting which was much needed.

Tonight we were invited to our friend Dean's 50th birthday party. It was a non-kid party, but Dean made an exception for some family kids and Camryn and Wyatt. Camryn and Wyatt had a blast! They swung on the swing, ran around the yard, ate yummy food, played with some other kids and loved on the dogs. Jason and I thoroughly enjoyed watching Camryn and Wyatt enjoy a normal outing...chatting with other kids, laughing and being a kid themselves. It was wonderful. For Camryn it was a moment that meant so much, she chatted all about all the way home...it was darling! We had lots of fun....it almost felt as if the world had returned and even if it was for a moment it was absolutely wonderful.

Getting ready for bed tonight Wyatt chatted and chatted about going somewhere and having fun...sometimes I forget that for as small as Camryn's world is, his is small too. Wyatt loved running around and eating tons of food...he especially enjoyed Dean's dog Chip. Wyatt talked and talked about it and how much fun he had. I love seeing them enjoy the outside world...it is a gift.

For a moment life found us...the life of the outside world and it was wonderful. Many thanks to those who made these little moments possible. For an isolated family it means so much.

day +350...

Three hundred and fifty days post-transplant...

Congratulations Sweet Girl! We are so proud of you. We love your spirit, your kind heart and your care for others...sweet girl you've been through so much and yet you continue to care so deeply for others. For all that we have held you through, you have held us...you have taught us to live each day, savor each day and hope against all odds. There are many days when we are just in awe of you...how you daily do all that you have to do, most children have no thoughts of the life you live. We hate all that you have to endure, but we would not trade a moment with you...

We Love You

~ Daddy & Mommy

And there's a little boy who deserves a congratulations too...

Wyatt...

Your gift to your sister is among the most priceless gifts. At times I find myself just in awe of the Lord weaving you together and giving you a perfect 10 out of 10 match for your sister who was so sick. Oh sweet boy, you give and give to us a love and a story that drives us to be thankful. Knowing that the Lord does know that details of our lives, he is involved in our journey...for from you we know that the Lord is never finished...

Love you Wy

~ Daddy & Mommy

a calm...

For all that life brings and all that is crazy about life...we have reached a calm of sorts in Camryn's medical life. This week has almost dare I say it felt *normal*. We have not made any trips to UCLA, we have not had to call a pharmacy, we have not had to schedule things with home health...no for a week all is quiet on that front. And it feels fabulous!

I did do something medically speaking for Camryn, but I'm chalking it up to "things parents of six-year-olds have to do". I called and made an appointment at a pediatrician's office...yes, on June 7th Camryn will be meeting the newest member of her team Dr. L. Dr.L is the same doctor who responded to my email about care and referrals within 10 minutes of me sending it. Never met him, but already feeling that the Lord is opening doors again for our sweet girl. When I called the office they asked if my child had a UCLA medical ID number, of course she does and I am surprised that at this point I do not have it memorized. As I spoke with the appointment desk the lady was super nice and assured me that changing Camryn's care over to this group would really make our lives easier...over and over she said, "oh you'll have less worry and headaches." Really? If only it were that simple, but I'll take it!

But far as the *other* Camryn things it's been a quiet week...

Camryn is almost done with kindergarten, can't hardly believe it. Seems so unreal that she has almost completed a year and seems like it was just yesterday that those dreams of kindergarten were dashed...and now, she's almost done. Her teacher is very proud of her and constantly tells us that Camryn is doing fabulously and excelling in school. Again this causes a deep breathe and a sweet smile to consider that our little one is learning and growing like any other child would be...because with Camryn those normal moments are not givens.

And yet I found myself in tears walking to my car the other day at work as I listened to the little kindergarten students practice for their Spring Sing. The Spring Sing is an annual tradition at Village, I was even a rain drop back in 1981...so yes almost thirty years later those little kids sing their hearts out. I cried as I longed for Camryn to be one of them...sometimes I just wish that all that she has lost would be recovered to her, but I know that this is one that will never be. And I'm learning that with some moments I just have to be okay with that. I do not have to like it, but I have to learn to accept it. It may seem silly, but at this very moment I wish that we had plans tonight to go see her sing with a long list of family joining us. A chance to see our little star shine...

These are the times when I really hate leukemia, I hate it. But for what it is worth I cannot change it. I wish I could...

Of course we are hopeful that September might bring first grade at Village, but there are no promises and that's okay. We will take it one day at a time; knowing that with every day a gift is given and for that we are thankful.

I am incredibly thankful for this calm, even if it comes with a few tears along the way...because last year we were counting down to hospital life and days of separation and transplant. I am thankful to be at a year...being able to look back in order to hope forward...

To know that we do not always get to walk in the sunshine, that some moments are filled with clouds and storms and sometimes all you can hope for is a calm...and maybe at some point the clouds will break and make way for the sun.

Hoping forward that the calm is going to bring some sunshine...

songwriter...

Camryn is our little songwriter, honestly we might have the next Taylor Swift on our hands. ;)

She LOVES to sing and constantly is making up her own little songs...it is precious, priceless and just purely wonderful. I love hearing her sing and make her own little songs about life.

Here is the song she sang to Jason tonight with her guitar...

I love you Daddy, you're my daddy
I love you Daddy, you are my hero
I love you because you are my hero
Because you really are fun
Wyatt really loves you and he loves to play games with you
And you love me and I love you
And we never ever stop because
We're never ever going to stop
I love you
I love you Daddy...

"now here's our duet"

You're the best Daddy I've ever had
You always play softball
Which I could talk to you
I love you
I love you Daddy

~ Camryn Lee

Then she had a little tune for me too...

You're my mommy and I'm your little grown up girl
You're my mommy and I will always be your daughter
You're my mommy, You're my mommy, You're my mommy
Yeah
You named me Camryn and I'm still your little girl
And I always will be your 6 year old girl
Mommy...Yeah

~ Camryn Lee

These are treasures...love her creativity and spirit. Oh and Wyatt makes a rockin' background singer and guitarist...yep, they are a rockin' band for sure!

back...

So good to be back...

I survived my three day adventure with 90+ 8th grade students. We had a great time, saw lots of sites, enjoyed some really cool museums, ate lots of yummy food and walked a lot! Being with the 8th grade students on this trip was a full taste of normal life...it was nice, but I surely missed my life here at home. But, I did have a few tastes of this life while chatting with Camryn's home health nurse arranging lab draws from 6 hours away, or chatting with the medical delivery guy saying he is on his way to my house. I will say that it's no fun trying to figure out schedules and such from 300 miles away, I'd much rather be right here at home dealing with the ups and downs of this life. Made me very thankful that I do not have a job that calls for travel...that would be really hard.

I must say that I enjoyed chatting with a few of my girls about life, not just what we saw during the day; but life. About my life, what I've gained and what I've learned...realizing that they want to understand their own life while hearing about mine. If there is one thing Camryn's journey has taught me is that I am a better teacher when I am transparent. When I let my students see me...the real me, the highs the lows...all of it. For it is when I let them in that they allow me in, and really that's why I'm a teacher.

One of my girls asked me a question that I still am mulling over and over...never got a chance to properly answer her (we got interrupted), but I plan on answering her once I have an answer. Her question? Mrs. Mikels how is it that you come to work and teach us every day with a smile on your face? Please forgive the paraphrase, but it was roughly 10:30 after a very full day. And I have played that question over and over...

And really I don't know...

Well, I do; because I don't do it. I quite frankly do not have the emotional strength to go to work day after day and teach U.S. History to 80+ students on my own; it's Him. It is the Lord's doing, not mine. So I know that part of the answer, but the part that is challenging me is that they see it...my students see all of it. The good the bad and it challenges me to leave them with more than facts and stories, but leave them with a piece of what really matters.

God's incredibly love for them.

I am thankful, incredibly thankful for the three days spent with a group of students who have watched me walk some dark days and some bright days. I am thankful for the moments that they have given to me. I am thankful for three more weeks that I will spend as their teacher and them my students. And I am thankful that a story of a little six-year-old and three-year-old runs deep in their hearts...because they are a part of that story.

Their part?

Healing a teacher's heart and helping her believe that she can teach again even after having her heart broken...

Thank you my dear 8th graders...

::::::::::::::::

And how did Jason, Camryn and Wyatt do while I was away?

Perfect.

Jason got through Camryn's line changes, flushes, medicines and shots just fine. No better than fine, great! They had a good time together, but as Jason said we just don't feel complete without all four of us together. And I think that is the way it will feel forever.

::::::::::::::::

And this week Camryn reaches day +350...and the calendar is inching closer and closer to June 4th.

And we couldn't be happier...no we couldn't be happier.

day +340...

The countdown is under thirty days...yes, we are inching ever closer to Camryn's ONE year post-transplant. In transplant world the anniversary of your "day" is called your second birthday...Camryn's second birthday is on 10.20.06 and I guess now she has a third birthday 6.4.09.

Camryn is doing really well, this week we are clinic free with only a home lab draw tomorrow. She is seemingly doing well and her systems seem to be holding their own. The GVH rash is nice a brown...yes, she has a variety of shades on her torso, none of which are truly a "flesh" color. I am thankful that it is pretty much strictly on her torso, because it does help avoid any embarassment that Camryn might feel from it. No word yet on the echo, the appeal is at the insurance so we wait...isn't that life in the medical world? I guess we should come to expect it by now.

As far as medication Camryn is doing well with her transition back to liquid Tacrolimus, and we have figured out a good schedule to do the best we can with the empty stomach restrictions. For adults it is one thing to take meds on an empty stomach, try that with a six-year-old and it can be down right maddening! We are so thankful to have found a compromise, a happy medium where Camryn handles it well and the medication gets taken.

I am also pleased to report that we have officially changed Camryn's medical group and fingers crossed it will help things work more smoothly for Camryn; not only now, but in the future as well. One piece of this whole insurance drama that I have left out is that the plan is usually in place for a child to be followed up with until they turn 18 at which point they would then be considered an adult. It only makes sense to us as far as we can control it for Camryn to be followed up at that same place that her transplants took place...so yes we are twelve years off of 18, how crazy is that? But, in this world we have to anticipate getting there even if it is a crazy, rocky, happy, long road.

Yesterday while chatting with my hygentist cleaning my teeth about Camryn and her variety of mouth/teeth issues I was enlightened to a few things. My hygentist is super, super nice and has been very patient with me while I skipped appointments because my mind was literally elsewhere for a couple years. She was telling me about some of the effects of radiation on people's mouth/teeth and I was amazed. Now, granted I would rather not be talking about radiation at all, but I swallowed hard and realized at some point as much as I hate it I have to embrace the fact that the more I know the better. We also talked about medications and such and she had some eye opening reasons that Camryn's mouth and teeth are a struggle. I left encouraged...plus, I don't go back for four months and for me that is a personal victory!

Life is really moving along nicely and yet at times it feels like there are few moments of peace. It's as if everyday I get home there is a variety of messages from home health, home nurses, home supplies, pharmacies, oh the list never ends. So I usually spent a few moments every afternoon sorting out just exactly what is what in the medical world of Camryn. But, for what it's worth I can't complain too much...Camryn is doing really well and I guess I really would take a million messages any day to keep her well.

Tomorrow I leave for three days for San Francisco, not really on a vacation...I guess you would call it a working vacation. I am preparing to tackle a piece of normal life...a piece that has been removed since I became a mom...

The 8th grade class trip...yes, I teach 8th grade students and I really do love it. I know some people read that and think that I might be insane and I at times I wonder if I am. But, I am heading out with this group of 90+ for a three day adventure in the City by the Bay. I am excited and scared all rolled into one...

I am completely excited to go, to feel a sense that life is stable enough for me to take off for three days and the bottom won't crumble beneath my feet. Oh I know it could, but there isn't anything knowingly on the horizon...knock on wood! :) It will be nice to "feel" maybe a bit of normalcy, something that I would normally be doing. I am excited as it's a opportunity to hang out with the students outside of school and make some connections before they move on to high school. I also get to hang out with a few of my favorite peers and co-workers which just adds to the fun.

I am scared, never been away alone before...I completely know that tears will come as it just isn't the same walking out the door anymore. I used to really enjoy those few moments away and now I hate it...maybe because for so many days I left a hospital room or left my house saying good-bye to one of my children and always my hubby. I just do not like not having one of them with me...just makes me feel that some how the world is amiss. And really this is the way it should be...

If I'm honest I am glad we are going to San Francisco a city I thoroughly enjoy and a place that holds fun memories for me...Jason and I were just there in March. So it'll be fun...but I know I'll be super, super anxious to get home Friday night.

There is a lot rolling around in my head these days...finding myself in disbelief that this time last year we were preparing our hearts for the realities of transplant and all that comes with that. Wrestling with those memories...trying to let go of some and clinging to others.

Plus, I have almost finished the school year...this is a HUGE accomplishment for my heart. I will exhale on June 8th, the day I officially check out for summer...guess in some ways I've held my breath this year, hoping, believing that maybe just maybe we'll make it through a year.

And as of this point we're about 25 days away...

motherhood...

I received this on Friday...I've seen it before, but it holds much more meaning now.

Before I was a Mom
I slept as late as I wanted and never worried about how late I got into bed.
I brushed my hair and my teeth everyday.

Before I was a Mom
I cleaned my house each day.
I never tripped over toys or forgot words to a lullaby.
I didn't worry whether or not my plants were poisonous.
I never thought about immunizations.

Before I was a Mom
I had never been puked on.

Pooped on.

Spit on.

Chewed on.

Pottied on.

I had complete control of my mind and my thoughts.

I slept all night.

Before I was a Mom
I never held down a screaming child so that doctors could do tests. Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night watching a baby sleep.

Before I was a Mom
I never held a sleeping baby just because I didn't want to put it down.
I never felt my heart break into a million pieces when I couldn't stop the hurt.
I never knew that something so small could affect my life so much.
I never knew that I could love someone so much.

Before I was a Mom
I didn't know the feeling of having my heart outside my body.
I didn't know how special it could feel to feed a hungry baby.
I didn't know that bond between a mother and her child.
I didn't know that something so small could make me feel so important and happy.

Before I was a Mom
I had never gotten up in the middle of the night every 10 minutes to make sure all was okay.
I had never known the warmth, the joy, the love, the heartache, the wonderment or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much love or so much pain before I was a Mom.

I never knew I would love being a Mom.

— Author unknown.

The journey of motherhood has been anything but what I expected it to be...never imagined this journey to be what it is, never thought I would have my mommy heart ripped in two over and over again and yet be ever so thankful at the same time.

Today I looked the gift Jason gave me the first Mother's Day that Camryn was sick...four years ago. I teared up looking at her darling face and thinking to myself...had I known then. You see at that point Camryn was sailing through her treatments and it appeared as if she was beating this enemy well. I guess there is a part of me that wishes that I did not have certain moments of motherhood, but then I wouldn't have this journey with Camryn and for what it is worth I have grown to appreciate things about her that I might have taken for granted. I love her little face...I love those big blue eyes, that dance when she is feeling well and I love that they danced today. I love her spirit...for she has taught her mommy much about what it means to be a mom, what it means to love someone more than yourself...

Thank you Camryn Lee...

Three years ago Wyatt was dedicated on Mother's Day...today I was remembering how much I felt then what I feel now, uncertainty, isolation, worry, fear and yet in the midst there was this ray of hope and sunshine that just melted my heart then and he continues to moment by moment. As I watched Wyatt run around today I just smiled a smile that I treasure in my heart...for Wyatt and I walked an incredible 9 months together before I even saw his face. And now I cannot even believe what a precious little piece of my heart he forever holds. Wyatt has taught me to believe beyond what we can see, that the Lord is carrying us through even before we know it.

Thank you Wyatt Jason...

For these two make the ride of motherhood worthwhile...



And where would I be without my own mom, Jason's mom, my sisters, my aunts, my grandma...the many women who have been my "mom" who have taught me, influenced me and molded me into the mom I am today...

Thanks Mom...

a taste...

The past two days have provided a taste of normal life and it tasted quite good...

And it left me wanting more. A lot more...

There is a fine balance between wanting the normal and accepting what is right now. We as a family have a long way to go until the flood gates open and normal life is upon us, but for what it is worth the taste was wonderful...

And it left us wanting more.

I am not entirely sure when the normal will be back and even if it is feasible to think that maybe this summer it might be. But, somewhere inside myself I cannot let go of the hope that with every passing day it's coming...

The day Camryn can be six and Wyatt can be three and do the things that kids do.

And yet in the shadows it lurks...

The piece of baggage that I think we'll always carry...even when "normal" returns. Can I trust this? Can I live in this and believe this to be true? Or will the bottom give away again? Can I begin to plan and dream again without the lump in my throat of what if?

The shadow of doubt and fear...

And I know that Satan loves to douse it on my heart, oh he loves to rain on my parade and leave me feeling so lacking, so alone. He loves to create the illusion of the shadow that grows and moves ready to swallow me whole. He loves to leave me calling on my God in doubt, after all he loves to create those moments that leave us wondering..."Lord, where are you?"

When you think you've hit the bottom
and the bottom gives way
and you fall into a darkness
no words can explain
and you don't know how you make it out alive
Jesus will meet you there.

When the doctor says, "I'm sorry,
we don't know what else to do."
and you're looking at your family
wondering how they'll make it through...
Whatever road this life takes you down,
Jesus will meet you there.

He knows the way to wherever you are
He knows the way to the depths of your heart
He knows the way cuz he's already been
where you're going
Jesus will meet you there.

When the jury says, "Guilty,"
and the prison doors close
When the one you love says nothing,
just packs up and goes
When the sunlight comes and your world's still dark,
Jesus will meet you there.

When you've failed again and all your
second chances have been used
And the heavy weight of guilt and shame
is crushing down on you...
And all you have is one last cry for help
Jesus will meet you there.

He knows the way to wherever you are
He knows the way to the depths of your heart
He knows the way cuz he's already been
where you're going

When you realize the dreams you've had
for your child won't come true
when the phone rings in the middle
of the night with tragic news...
Whatever valley you must walk through,
Jesus will meet you there.

He will meet you there.

Jesus will meet you there...
~ Steven Curtis Chapman

This song has come to mean a lot to me...because the first two verses have been sung in my life. And He did, Jesus did meet us. And I am thankful that He will continue too, always. He walked and is walking through valleys with us...His love runs so incredibly deep for us, each of us.

The taste was delightful and I am grateful for it as it gives us hope to keep believing that Jesus knows this journey is hard; because with every step we take He takes it with us...

whirlwind...

It's almost as if May came and the insanity of life hit...honestly this week has been insane to say the least. I'm hopeful that maybe just maybe this is the crazy week of the month and then life will slow down. And you know, it's not even like we are living normal life...it's our medical life that has been crazy along with Jason and my working life. No our family life has been pretty normal, well at least our normal.

To update: Still no word on Camryn's echo, going to call tomorrow and see where it stands, but we continue the nightly Lovenox shots...we are hopeful that maybe sometime this month we'll get that echo in. Saying lots of prayers...

We continue to juggle a lot of medications along with refills, prescriptions and pharmacies...as of right now I *think* we have all we need for awhile and will not have to make trips to 3 different pharmacies to get Camryn's medicine. But, what can you do? Thus is the life of a little girl who had a transplant and has seven medications all of which are pretty unique...some have to be compounded (mixed), some are specialty (only available at UCLA), and some are run of the mill regulars (CVS kind)...but for what it is worth it could be worse and that is what I keep telling myself. Yes, even when driving around from pharmacy to pharmacy or fighting rush hour traffic...that this could be worse.

Far as insurance we've decided to change Camryn's group...if I'm honestly I'm really discouraged about it in some ways. Camryn will be leaving Dr.K who has been her pediatrician since she was born and was our first doctor to *know* that the worse was coming with Camryn. I so appreciate Dr.K and I am very thankful that Wyatt will still be with her at least for now...maybe at some point we will have to move him as well, but for now Wyatt will stay. I am very hopeful though as I had emailed the potentially new pediatrician for Camryn and thought I might hear from him in a few days and within ten minutes he had emailed me back and said he was glad to see her and make the necessary referrals...how great is that? I am very thankful that we have options in order to keep Camryn with her team, and the doctors we love so much.

So that's where we are in our whirlwind...hoping that the winds die down a bit and maybe some calm will come. But we are ever so thankful that Camryn is doing well, Wyatt is doing well and some days that is enough...

Like tonight when I got home and heard the giggles from the bathtub and saw the biggest blue eyes and some mischievous brown eyes looking up at me, I smiled...

Even in the whirlwind there are moments that I wish I could freeze in my mind and keep them forever; because what it all comes down to is what is right now...

eleven months...

Seems entirely surreal that Camryn is one month away from ONE year post-transplant, which in transplant world is a very big deal. To make it to a year without any huge set backs is refreshing, granted we still have a month to go, but Camryn is getting there...

Fittingly today Camryn headed down to UCLA for clinic, I went with her because I had already requested the day off for Camryn's echo...unfortunately Camryn did not have an echo today. We are still dealing with insurance issues, but hopefully things can get figured out soon. We are anxious to see what the status of Camryn's blood clot is. When we arrived at clinic everyone said hello, it is so funny to see Camryn on a first name basis with everyone. We headed over to procedures for labs like always...while we waited Camryn read A Very Hungry Catepillar to me. Wow, what a little reader she is becoming.

After labs we headed back to clinic and waited in our room...while we waited we chatted and played a few games, it was fun to see Camryn's life at UCLA. Camryn's nurse practioner came in and that was a welcome visit, we love B she is the best. We quickly chatted about the insurance issues that we are having and some possible things that might help maintain Camryn's care at UCLA. As we were chatting the door opened up and Dr.A came in and checked everything out. All checked out great, it was determined that Camryn's doing well. She is growing like a weed, quite literally...honestly she just seems to be taller and taller by the day. The GVH rash is now subsided, a little GVH remains in her mouth so we are having to watch that, but her prograf seems to be working well and Dr.A prescribed some "magic mouthwash" to help with any pain the mouth sores might be causing.

All in all the visit with B and Dr.A went super...we were ready to go home just waiting for prescription refills when who should we find...Dr.M. As always Dr.M wanted to know how Camryn was doing, he too commented on how tall she is getting. We chatted for a bit, it's always nice to chat with Dr.M. Camryn and I also saw friends that we had met at the Nickelodeon day...the little girl is six just like Camryn. Although her cancer is different it was nice to see them and encounter another smiling face. I am really thankful that the Lord keeps bringing encounters with other cancer moms and their stories...it's humbling, heart-breaking, bittersweet all rolled into one. Challenged by what brought us together as friends, but thankful to get to know them.

Eleven months have passed since Wyatt gave Camryn his juice and as Wyatt said today..."I want it back." To which Camryn replied, "You can't have it back Wyatt...your juice is what is making me not be sick anymore." Wyatt says, "Okay you can keep it."

Quite a journey...quite a story...

Some days are just filled with normalcy and some days the realities for which live are evident in every breath we take. We are trying to find a balance, trying to find a place where our lives fit and yet knowing that right now this is how it is...we don't really fit anywhere. We are different and yet we are the same...it's a rough balance.

Ever so thankful for the past eleven months and what we have learned for a little girl and a little boy about the resilence of the child-like spirit...the gifts that the Lord gives to protect the little hearts that are so precious to Him. Wishing we were almost 4 years post-transplant, but yet knowing that we are really only a month a way from a year.

And yet so thankful for the bright spots of today...

* A great clinic visit...

* Lunch with two of the best gifts a mom could ask for...

* Driving around Burbank for two hours, but finally getting Camryn's medicines...

* Emailing a doctor at UCLA to see if he might take Camryn as a new patient, crossing my fingers that he would say yes...

* Ten minutes later getting an email back that says he would be glad to see Camryn and refer her to UCLA...

* Listening to my little Dodger cheerleader, chanting "Go Matt Kemp...Go Either...Go Dodgers"...

And the absolute cherry on top?

* Talking with Camryn on the way home from UCLA about how she asked Jesus in her life to give her life to Him. Yep, guess it doesn't get much better than that. And really everything else pales in comparison...

Yes, oh so thankful that these past eleven months are not in vain...that somehow, somewhere the Lord is making something beautiful with all of it. Because there was a beautiful little heart chatting away about her love for Jesus...

That is the beauty of it all...

a little bit longer...

Well, today we received news that our insurance group had denied Camryn's authorization for an echocardigram at UCLA and referred us to a pediatric heart center. Our nurse practitioner has been busily trying to appeal the denial as it is important Camryn's echo happens at UCLA in order for her doctors to make a determination on her blood clot.

Long story short...

Camryn will not have an echo tomorrow, and I'm not entirely sure when she will. Thank you for your prayers, please continue...we are so hopeful to stop the dreaded Lovenox shots, guess we will just have to wait a little bit longer...

But, as always these insurance delays and problems make us crazy...I was battling the authorization and Jason has been battling trying to get one of Camryn's liver meds refilled. Guess it's just another day dealing with the issues that never seem to go away. Hopeful all of this can get figured out...we are at the point of completely removing Camryn from her current insurance group and starting at square one with another group more closely connected with UCLA in hopes that we can get authorizations more smoothly and more quickly in the future. Today when I was talking with an insurance lady at UCLA she asked me if I would rather have Camryn with a pediatrician close to our house...I sort of laughed. The last time Camryn went to her pediatrician's office? Fall of 2008 so I don't really think the location of the office is important...keeping her with her team at UCLA is.

Guess we are fighting these battles a little bit longer...

Just wish the end was in sight.

lollipops, nickelodeon, and thoughts...

Today our family was invited to an event at the Nickelodeon studios hosted by The Lollipop Theater Network. The Lollipop Theater Network is a really cool group that shows movies that are in the movie theaters to children who are hospitalized, isn't that cool?! We were invited to come to the event as a guest through our connection to UCLA, one of the hospitals that Lollipop works with.

The event was amazing...we had found out before hand that Camryn would be buddyed up with the girl duo Savvy & Mandy. There was a bit of a glitch in the connecting with Savvy & Mandy, but once everything got figured out Camryn had a blast! The event had life - size versions of the games Connect Four, Candyland, Jenga...it was so fun! There were also lots of other games for kids to play, which was a hit with Wyatt too.

When we got there Camryn got to have her hair done by the a salon from Beverly Hills...she LOVED every second of it! After the hair was done they did her make-up, complete with yellow eye shadow, Camryn was in heaven!





Here's Camryn trying to win at Candyland...so fun to actually move your life - size gingerbread men.





Here's Jenga...lots of fun when it fell over, not so much fun stacking it again!




Twister anyone?



The Elefun elephant...Camryn loves Elefun!



Wyatt's favorite part of the day? The food...enjoying his smoothie to the fullest!



I believe he was rockin' out to the music...could have been Baby, Baby, Baby by Justin Bieber?!




Camryn with Savvy & Mandy on the Connect Four game...



Decorating cupcakes...yep, Wyatt put on animal cookies, marshmellows, spinkles, gummy bears, fruit loops...fun!




Camryn enjoying the cupcake booth...



Getting ready for her "Life" photo...



Yes, that is Wyatt laying in the blue sand...he absolutely LOVED it! It was awesome sand...nice fun at the Crayola booth.



The end of the day...so thankful for the fun of today for the kids that have struggled so. Camryn shared her buddies with another little cancer girl who is four, it was great how they enjoyed their day. While the girls made bracelets I sat and talked with the little girl's mom...their journey is not like ours, we are not battling the same cancer; but it was refreshing and heartbreaking to listen to their story...




Even in the midst of the fun of the day there is a harsh reality...as Jason said as we drove away, "Now we all go back to the hard, real world..." Oh so true. Talking with the other mom was a nice breath for me, yes at moments I felt like my very thoughts were being spoken by someone else...that we are not alone on this journey, and yet so often we feel like we are. The mom and I exchanged emails and I hope to keep connected to them...it's as if the Lord in the midst of the fun said, "I haven't forgotten how isolated you feel...I haven't forgotten how lonely this journey is. See I have introduced you to someone who is walking in your shoes...now be her friend." I also met another mom who's daughter also is at UCLA in treatment...it was wonderful to talk with her as well...just to know that again we are not alone.

I am thankful for people who give and donate to causes that bring a bit of sunshine to children who are fighting diseases that are heartbreaking and so unfair...

I am thankful for connecting with others and hearing that my heart is not too far off, that this journey is long and hard...

I am thankful for two teen-age girls who could have blown off two little girls with cancer, but they didn't...they made their day.

I am thankful for a little boy who thoroughly enjoyed his day in his own way...I believe a blue sand box might be in his future. :)

I am thankful for a little girl who has endured so much and yet is still just a little six-year-old girl...

I am thankful for a daddy who saw his little girl's unhappy heart and tried to fix it and he did...

Thankful that we were able to have fun, to celebrate and just be for a day...

And for those of you counting...Tuesday marks 11 months post transplant!!!

saturday...

Some days it is just a gift to be with the three people you love most in the world. Whether it is running to the mall to find a few birthday gifts or running to Target to get a few necessary items or building a Thomas train track that fills the entire living room floor...whatever it may be, it is simply a gift.

Today was a gift beyond measure...

The smiles, the laughter, the giggles...all of it, was a precious gift.

And even as evening comes and the three people you love most are doing a p90x workout together and you hear the laughter and giggles continue, you thank the Lord for another day...

Another gift...

And some days it's as simple as that.