sprouting in springtime...

Look what we've got sprouting at our house...

Camryn's first "big" tooth...read, Camryn's first permanent tooth



This morning as I was helping Camryn brush her teeth I noticed a little something...a tooth! I was shocked, never did I anticipate her loosing her teeth after just turning 5. I asked her if her bottom front tooth was loose and she wiggled it and burst into tears. Obviously, she was not quite ready to have her teeth fall out. So, we explained and tried our best to make it not scary; but to no avail. She's scared...and we are trying to make it very exciting, a rite of passage if you will...a big girl step.


Flowers in flower pots...





This afternoon my mom bought the kids the cutest little flower pots to plant some flowers in...so, we decided to have some fun this afternoon and plant our seeds. Hopeful the seeds start to sprout soon...the kids are very concerned about their little seeds. Guess they'll take good care of them, well at least for today. :)

Kids in need of some watering...









Camryn has been eagerly anticipating the arrival of a water guard for her central line so that she can enjoy some fun in the warmer weather...running through the sprinklers. Well, as you can tell she got to enjoy that today...the water guard bandages arrived. So...Jason and I thought we'd let her have a little taste of summer a wee bit early. Camryn loved it...Wyatt not so much. Wyatt did enjoy sun bathing on the driveway. Honestly, these two kids make me smile...they are the cutest!

Kids busting a move...





Wyatt and Camryn are both into dancing, singing and performing...it's quite a show. Well, today Wyatt and Camryn both wanted to show me their "rad moves"...and let me say they were rad!

As you can see we had a very fun day...these are the days I cherish and treasure deep in my heart. Thankful for today...thankful for the love and smiles that my children and my husband bring me daily...

Thankful for the little sprouts in springtime!

common ground

Finding people who can identify with your journey can be both maddening and wonderful...talking with someone who is also watching their child endure things they never should is both comforting and frustrating.

That is where I found myself this morning as Camryn and I were at clinic...there is a little boy who is currently also a regular coming everyday for the next 6 weeks, he had a stem-cell transplant and after a year of remission he too relapsed and is now on a journey very different from ours and yet very similar. As Camryn was getting hooked up and the little boy D was getting hooked up they were chatting about videos and such...meanwhile D's mom and I chatted. We had met before (about a month ago), but we both briefly caught each other up on our stories...

As we talked I found myself so incredibly drawn to this complete stranger J, she really listened, asked real questions, understood...and she showed an amazing amount of empathy.

Camryn's procedure lasts about 3 hours whereas D was done in about 30 minutes and then he heads to radiation...but for those 30 minutes I felt a common bond with J and I have to say it felt really good.

It felt good to not have to be strong...to not guard my words...to not abbreviate things (not wanting to bore people with the medical jargon)...and to listen.

As J talked I was immediately drawn to their journey...she spoke of the year post-transplant as the "best year of their life". That now things were very tenuous and unsure...that being thrown back in this is not something she ever thought would happen again. Are you beginning to see why I felt like I was listening to myself?

At the end of the six weeks D heads to New York for a month long treatment and as his mom said..."hopefully that will do it...it has to." Yes, they are fighting a fight where the options become less and less with every relapse. That things are not so easy the second time around.

I've been praying a lot for D and his mom J today...I have no idea much more of their life then their cancer journey, but for what it's worth it really doesn't matter. We have a common bond...we share a journey few understand...

As J said to me today, "Doesn't it get old coming here every day? Don't you feel like this is all you do?" And the answer is yes; but there isn't anywhere I would rather be if this is what it takes to get Camryn well. It's a hard road...

But, I'm thankful today for a moment to have some common ground and be able to really sense we are not alone...

This isn't just happening to us...

To Camryn...

And that's what becomes maddening and frustrating, there are just far too many children and families dealing with realities that are incomprehensible to some and yet all to familiar. I wish for D and his mom that this wasn't their journey...as I know they too wish that for us.

And for the common ground I thank the Lord, because with every friend we meet He brings encouragement, strength and hope.

fourth week

Yesterday Camryn started her fourth and final week of this round of arsenic...YAY! Hard to believe how quickly time is passing and how routine things become, even things you don't necessarily want to do. Our family has found their groove so to speak with daily clinic visits and procedure center treatments...we are "regulars".

Today, being Tuesday is always a bit more eventful than the other days in the week...so Camryn and I both look forward to Tuesdays, probably for entirely different reasons. For Camryn Tuesdays are visitor days...lots of people coming and going...lots of action in the procedure area. Camryn likes that...she likes the change of people coming and going...she likes to see the various doctors, nurse practitioners, and patients come and go. Plus Nurse Charlotte is there on Tuesdays and you know that is just the cherry on top...Camryn loves Charlotte!

For me Tuesdays are a day of visitors too, but it's the day I can touch base with doctors and just be reassured that we are all on the same page. I like seeing the Camryn's doctors and nurse practitioners as it's my chance to ask questions, seek advice, ask for clarity, or just plain have people get it. I think that is what I like the most...on Tuesdays I feel that everyone there gets it...it's comforting.

Camryn had her EKG this morning and let me say the lab was full. They were on #73 and we were #99...yeah we had quite a wait ahead. As we sat there Camryn did well, but I could tell she was anxious and just getting upset with the wait...probably not great emotions of stress for a 5 year old getting an EKG. The longer we sat the more I just mulled over words of a song I heard last night...just playing them over and over in my head...Third Day's Mountain of God..."even though the journey's long and the road is hard..." I knew that we'd be okay, yes it's not ideal to sit and wait through it, but it wasn't the end of the world. A few minutes later a familiar face was standing in the doorway and motioning for Camryn to come back...they were on #89. We got up and the lab tech we love took us back and got us the fastest EKG ever. And you know what? Normal sinus rhythm and Normal ECG! YAY!!!

The doctors were very pleased as Camryn continues to tolerate the arsenic well and she is doing exactly what she should be doing...her lab sheets keep showing good signs that the arsenic is continuing to work and keeping her leukemia cells from attacking her clotting factors...Praise the Lord!

We also confirmed today that Camryn will meet with the Radiation Oncology team on Monday morning to begin the process of preparing Camryn for the radiation she will receive once she goes in-patient for transplant. This is a prayer request for us...we have not yet traveled the radiation road and it is very new to us. I've talked with a few moms who's children are currently receiving radiation and have a bit better understanding. But, our prayer is that Camryn does well with a new team of doctors and she gets through the radiation well.

Other than that, clinic is the same each day...there really isn't much new to report. Next Tuesday is Camryn's aspiration at noon, so if you think of her please be praying as she will have to be put under and have her marrow checked. We should get her results next Wednesday so I will keep you posted...really we'll just have a final answer whether we go to transplant in May or in June. So, that will be welcome news to just have a more definite plan.

We are hanging in there...taking it day by day. Trusting that the Lord is carrying us through and believing that He will continue to...

Moment by moment.

flashes of hope...

"Now faith is being sure of what we hope for and certain of what we do not see."~ Hebrews 11:1

Hope...

Over the course of the last few months there have been moments of hopefulness...moments when the storm clouds break and the sunshine breaks through...moments.

I wish I could say that I had these hopeful moments all the time and I was just a walking, breathing hopeful person...I guess truth be told I'm a realist. Not that I do not hope, but I tend to dwell much more readily in the realities of the now. But, yet as my husband reminds me often I do not and did not ever do this when I was teaching...no, I saw potential for growth and believed in that potential throughout the months the student sat in my room...and when they moved on, I still believed. I guess the problem comes to myself...I am inherently pessimistic person when it comes to me...

Can I withstand this storm raging? I don't know...I must admit that this time around my armor is a bit more damaged from the arrows of the first battle in '06. I don't feel as strong as I once did...I wish I could say differently. But, these days things can bring me to tears in a heartbeat...in fact they did today.

I battle within myself to be stronger...keep it together, don't show the signs of weariness...just keep smiling and hoping. Because after all isn't that what people want to see?

Do we really want to see the broken shells of people? I know it's hard, believe me after walking the journeys it's hard to really see the brokenness of people and not want to turn away...not want to look away and hope that the next time you look it's better.

Yet, the Lord provides within the storm and gives me flashes of hope...literally.

Back in February when we were in the hospital an organization called Flashes of Hope came to take pictures of the children in the hospital and their families and give them hope...

To give the kids a make-over...comb their hospital bed hair, or do a little make-up...honestly whatever just to make the child smile. After you've spent time in a children's hospital you know that smiles are not always easy to come by. So, they came and took Camryn's pictures...





















These...these are my flashes of hope. In the midst of the storms this face helps me through each day...you see in the things the Lord provides He gives me flashes of Himself...hope.

I am thankful...just simply thankful.

helpful little wy

Tonight was bath night at our house and usually this is a very involved process as it means a central line dressing change for Camryn...

But, tonight was going to be tricky...my partner for bath time and line changes was not home. Jason had Open House at school tonight which meant I was going to fly solo...which is okay, but not ideal.

We made it through bath time just fine. Wyatt took his bath first and did great...Camryn was next up and did well too. The tricky time was coming...line change. As I got Camryn situated and the numerous supplies needed in order Camryn asked, "Mommy who is going to fan my line?" Let me explain...while changing Camryn's line dressing we have to clean it and it stings a bit, so Daddy always fans it to just make it better. Don't know if it really helps or not, but mentally Daddy's fanning does wonders. I was at a loss...I said, "I don't know Cam, maybe Wyatt can help us."

So, we asked Wyatt if he wanted to help...he just stood there staring at Camryn's line in wonder...mind you he has seen it many times, but usually it's in a manner of staying away or being careful. I think Wyatt was shocked we were asking for help.

After thinking it through Wyatt jumped in and helped and it brought tears to my eyes...

He sat next to Camryn and fanned her line and told her it was "Ok, Camryn." The love that he has for her was so easy to see...

Wyatt loves his sister...and she loves him.

I'm so thankful tonight for my helpful little Wy, he was a lifesaver.

Truly, he is a lifesaver in more ways than one.

LOVE you Wy.

it's His...

Today I was reminded of something so clearly while at clinic with Camryn. All things are His.

Camryn had her Tuesday EKG this morning and after the ups and downs last week with her EKGs, we were praying today's was good. As we got to the lab the techs all smiled and Camryn climbed up on the table and did exactly what she was supposed to...yep, she's a pro at this. As the EKG ran and was printed, my heart was anxious...for Camryn's heart. The tech didn't say a word so that only served to heighten my anxiousness...Camryn finished up and the tech handed me the copy to take to the doctors. My eyes immediately scanned the page for the word "Normal"...and it was there, not once, but twice. "Normal Sinus Rhythm...Normal ECG"...yes, I smiled.

We headed upstairs and we kindly greeted by the super nice lady behind the check-in desk...she says hi to Camryn, asks about her Daddy, checks in to see if we had a nice drive down. Honestly, this lady is the nicest. We headed to procedure clinic and got our regular spot...yep, Camryn is a creative of extreme habit we have to sit in the same curtain area every time. If we happen to be late the nurses reserve it for her...yep, she's a regular.

I ran the EKG over to the clinic side for one of the doctors to sign off...Dr.A was so pleased that he quickly signed it off. Camryn got her arsenic running and all went well. As the arsenic was running we got a copy of her lab sheet and let me say this...it was fabulous! Camryn's levels are the best they've been in a long time...it was awesome. I quickly called Jason to tell him, I was beyond excited. I know that for now this is what we want, good strong levels and soon enough the lab sheet will look entirely different; but for now I will celebrate the good and leave the rest for another day.

Camryn especially enjoyed laughing and joking around with Allison, Dr.M and of course Nurse Charlotte. I was smiling at her as she joked around with Dr.M playing with his stethoscope and such...seriously this is the best doctor ever. Camryn loves Dr.M...they have a very special relationship. And it's not hard to see why...as Camryn was chatting with Allison and Nurse Charlotte, Dr.M and I chatted. He is such a special man, honestly he is such a comfort for me and Jason. As I was chatting with Dr.M and he was asking if we had any questions; he said something that I have been mulling over and over in my head....

"it's His time...If I had my way we'd be working to get you guys home from transplant soon, but instead we're not there yet. But it's His...Camryn will not get there a day sooner or a day later then what He has planned."

And it is...it's His.

Dr.M smiled and then said that Camryn looks so great and she is doing so well...it's so wonderful. And then he went on to say, "We all just love her." Again my heart smiled because they do...they absolutely love her. Camryn is not merely a patient with a number and file; she is a 5 year old fighting a fight that if any of her doctors or nurses could they would take from her in a heart beat. Camryn's family at UCLA has become her treasure, she knows their schedules, she knows they care, she feels safe and she knows she matters. There is no greater gift to a child who's world has been turned upside down than knowing that they matter...that they matter greatly.

Honestly, to a parent of a child who's world has turned upside down there is no greater gift either. To know that Camryn is getting the best care possible, that she is in hands that care so deeply is such a comfort. And it's His...it's His gift to me.

There is no plan B in all of this, it's His plan and inasmuch as I would love for it to be different, it's not. I am not the one who holds the world in His hands, who breathed life into each of us, who creatively knit us all together as uniquely as we are...not that's not me.

At times I do feel like Job, oh I know that Job endured more than I could even imagine to be humanly possible...but, I feel like Job when the Lord speaks to him in the ending chapters of Job and Job responds...

"I know that you can do all things,
and that no purpose of yours can be thwarted." ~ Job 42:2

While looking around at the broken pieces, wondering, questioning...I know. I know that the Lord can do all things...He can and will according to His plan. I guess the struggle really comes when His plan does not align with mine...and oh that happens so often.

I would love to be half way through transplant...starting to really think and work towards coming home. Yes I would love that. I would love for Wyatt to be through surgery and done with his part...but, I still have to wait for the day when both my children will be admitted and in the hospital. When I will have to be two places at once...that day is coming. But, oh how I wish it was behind me.

Yet, it's not...there are hard days ahead and He knows that. He knows the outcomes that run through my heart and Jason's heart...both of us afraid to speak them into words as though if we do they might actually happen. But, we've learned a lot throughout this process...what we want...what we think...just really is that. What we want.

And yet it's all His...

From the very beginning of our journey with Camryn there is a struggle within to let go, to surrender our daughter and trust her to the Lord's hands. Some days it's easier than others to surrender this whole journey. Some days it just aches and hurts so deeply.

The other day I went up to my classroom to get some things for my long term sub in order...and I cried. I cried as Jason and I walked away...I had such high hopes for this school year...after a 10 year wait I was teaching the subject that I have longed to teach since beginning college...yes for 16 years. I was excited to have these 8th graders again as I had taught many of them as 7th graders and I loved them. The year was going to be rough teaching two new subjects, but it felt as if things were moving in the right direction...

But, I don't need to tell you that everything changed.

I cried to think that what I longed to do was not there now...I miss my students, I miss my teaching peers, I miss all of it. Not because I lived and breathed teaching; but because if I was there I wouldn't be here...

And yet it's His...

Our lives have taken some turns that we didn't expect, but for what it's worth we have a good life. We love each other, we cherish each other and we lived today...we love the Lord and beyond that the rest is just details.

So for tonight I am resting in the promise that it's His...all of it, every single bit of it...

"I hereby command you: Be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you wherever you go." ~ Joshua 1:9

weekend break

After Friday and my heavy heart I was hopeful for a weekend break...2 days without clinic. Yes, that is what weekends have come to mean.

This weekend was the break that my heart needed...

We were able to spend the weekend enjoying our life now, this weekend was a bit of a break of the normal. We were able to just be...

Be a family with a broken heart and yet able to go on.

Be a family with two little ones who have yet to fully realize what the future holds.

Be broken...Be upset...Be happy...Be able to laugh...Be scared...Be whole.

This weekend allowed us to just be able to realize that even in the midst of the storm, even in the midst of the heaviness, even in the midst of the future that is coming HE is greater.

He continues to hold our hearts ever so gently as we navigate these paths...

Tomorrow we start another week and I will admit it's always hard, but HE continues to be faithful...

heavy...

All of this is getting heavy...so heavy. I feel at times if I let it, all of this could drown me...

We spent 5 hours at clinic today. Everything was absolutely fine, it just took that long to get everything rolling and going...5 hours that were long and heartbreaking.

For 5 hours as I tried to entertain Camryn and not lose my mind with the fact that we were sitting in clinic; I watched countless children and families come and go...

For 5 hours I saw looks of despair, relief and a million other emotions. A young teenage girl walking back to her curtain area with tears streaming down her face as the arm of her doctor was wrapped around her. Parents of a two and a half month old excited that their little one didn't have to have another shot until October. A young boy who has lost part of one arm trying to manuever a tray so he can play with his mini skateboards. A young mom of a little one who is screaming uncontrollably as the nurse is accessing the little one's line. A family as they listened to the doctors explain new meds and procedures. A little girl who wandered over to Camryn's curtain area to say hi, while she waited for her blood transfusion. Another teenage girl who we first saw on the day of Camryn's relapse who was walking and talking, but today she was slumped over in her wheelchair.

Yes, it is just heavy...

The in house school coordinator stopped by to give me kindergarten summer work just to give Camryn something to do and also begin to prep her for kindergarten. As Camryn flipped through the workbooks she innocently asked if they use these books at the Big Village where she is going to kindergarten.

Or the conversation last night between Camryn and her cousin James about going to school together so they can play on the playground and Camryn asking me when she starts at the Big Village. All the while James telling her excitedly that they will be friends at school and they will be together.

Yes, it's simply heavy...

Wondering how all of this came to be again...wonderings that have no answers, but still my mind and heart wonder. I know there are no good answers, at least none that make sense to me...but, I wonder where all of this leads...

And it's all weighing heavy tonight.

a memorable, magical day...

What a day...truly a memorable, magical day!


Enjoying the carousel


Look what Daddy got me!


Dancing in the street parade


Daddy and Wyatt enjoying Dumbo


Oh how I love these two...


These three make the world go round.


C is for Camryn


Big Sister...Little Brother


I just love this picture...


I am thankful for such a wonderful day to cherish in my heart for Camryn's 5th birthday...

Thankful...for such a great day!

realizations

I am beginning to realize that this is only really the beginning...

The realities of what Camryn is facing, what we as a family are facing are long...very long. There is just no quick way to do things...things are not entirely simple...things are not entirely easy. They just are.

I am beginning to realize that nothing is really a given...

Today Camryn had her normal, routine EKG which she has twice a week and so far they have been fine...that wasn't the case today. Camryn did great getting her EKG and was a trooper through it...when the lab tech handed me the copy for the doctors my heart sank. Even to my untrained non-medical eye I knew that it wasn't a good EKG. So we headed upstairs...heart heavy wondering what this will mean? Will they DC her arsenic? Will they adjust the dose? Is her heart really in trouble?

Her doctors took one look at the EKG and sent us back to the lab for another one. Maybe it was a bad read? So, we went...and thankfully the second EKG was much better. And her arsenic ran as normal. Dr.M decided to have the cardiologists review Camryn's EKGs and determine if adjustments need to be made in her arsenic dosage.

All in all she had a good day at clinic, after we got through the little unexpected bump in the road.

I am beginning to see that we are not in the minority...

On any given day at UCLA there are many children coming for treatment and after you become a regular you realize that you are not alone. That really there is not minority...there are too many children fighting for survival. Too many children having to endure things that are unthinkable...too many. Today at clinic the procedure center was full and they were double booked on children receiving chemotherapy, transfusions and medications...far too many. There is no minority, there are many kids fighting and Camryn Lee is one of them.


I am beginning to really see with my heart what this journey is teaching me...

This journey is not easy, quite frankly it's down right frightening at times. There are ebbs and flows, moments of absolute sorrow and disappointment...and moments when the grace of my Father is lavished on our lives in ways that leave me speechless. I will not pretend to know why Camryn has cancer...that will be a question that will forever be left for my Father. But, I do know that there are moments along this journey that my heart has learned something that I don't know if I would have ever learned. I've learned that life isn't always a neat little package. I've learned that I cannot do everything on my own. I've learned that it's okay to be broken. I've learned that I must rely on my Saviour. I've learned that you can be a good mom and a bad one all at the same time. I've learned that fear cripples you. I've learned that the Lord is bigger than ALL of it...and quite simply I have a lot left to learn.

I am really learning to appreciate the little things...

At clinic today Camryn was cared for by people who are going about their careers, just doing their job so to speak. Yet, they do their jobs with such grace and dignity and love that I am amazed by them. They care for Camryn in ways that I just cannot repay...and more than that they care for Jason, Wyatt and me. They care for all of us and I'm thankful.

Good lab reports might seem little, but they are huge and I am thankful for the numbers on the page. I'm thankful for lab techs that take the time to consider a five year old who has to have EKGs. I am thankful for our life at UCLA...it's a little thing, but I am so thankful that in the summer of 2006 we chose UCLA.

The simplicity of life...that beyond all the stuff life is fairly simple. And I appreciate those things that just seem to happen when you need them too...those moments when friends call exactly when you need them most. Yep, the little things...

I am learning that the Lord is faithful...

There are many details to figure out throughout this journey and there will be more once Camryn officially goes into transplant; but for now the Lord is in the details. He is moving things in ways that only He can...He is opening doors and windows...He is holding us.

I am really learning that all of this is real...

For so long one can walk with the Lord and never really walk with the Lord. We say the right things, we do the right things...but the depth of our faith is about a puddle. We fail to go deep with God...I know I did and do. But, if anything I am learning that I need to go deep with God; for it's in the depths that He is to be found. The Lords love for me runs deep and it's not about to change...therefore, I need to dig my love for Him deeper so that when the circumstances of life come...He is my anchor. He is my rock...He is my foundation...

I am realizing that in my life the Lord is far surpassing any expectation I have...I dream little, I dream in a box if you will. I have been known to limit God...

And you know what?

God is busting through any and all limits I've set...He is a boundless God, which means He is able to do anything...

Anything?

I've known that in my head, but my heart has been slow. I've always felt that the Lord needs my help, my consulting, that in some way He needs me. How arrogant am I?

If anything I need Him.

I have come to realize that these words are so true:

This is the air I breathe
This is the air I breathe
Your holy presence living in me

This is my daily bread
This is my daily bread
Your very word spoken to me

And I I'm desperate for you
And I I'm I'm lost without you

This is the air I breathe
This is the air I breathe
Your holy presence living in me

This is my daily bread
this is my daily bread
your very word spoken to me

And I'm, I'm desperate for you
And I'm, I'm lost without you

And I'm desperate for you
And I'm, I'm lost without you.

...and without Him I am nothing. I guess that's what I've come to realize afterall.

5 years old...

Honestly where does the time go? Seems like just yesterday that Camryn Lee came into our world...at 9:54am on April 12, 2004. Our lives changed that day, changed in so many ways...we became parents of a darling baby girl...she became our world.

For 21 months we watched Camryn grow and develop in so many ways, she was our little sweetheart and we loved her with every ounce of our heart.

Then something changed...not our choosing, but Camryn became a child with cancer; and when that happens your perspective of days becomes entirely different. Each passing month became full of meaning...every moment. Camryn turning two, three, four and with each passing birthday there was hope that she was beating this cancer and she was living...and it looked as if we were making our way to five without a hitch.

You see five just seemed to be a right of passage if you will...leaving toddler, preschool life behind and becoming a school age kid. Beginning to step into another phase, stage and we've anticipated this day for a long time.

And today came...

Not quite like we had envisioned...but, it came even though we thought we'd be moving forward with the coming of five. We are now watching Camryn again fight the fight of her life...no, not quite what we envisioned.

Today we decided to take Camryn to her most favorite place in the whole wide world...Disneyland. Camryn was so excited to wear her birthday button and have cast members say, "Happy Birthday" all day...she could hardly wait.

I won't lie, I was a bit torn about not going to church and doing all the Easter things that I've always done...but, this year it just felt different. I was sad to not have Easter my way...I know it's selfish, but I wanted Easter the way I'd envisioned it. But, when Camryn relapsed and things shifted dramatically so did our plans. Since Camryn's levels are holding well her doctors gave her the go ahead to celebrate her birthday at Disneyland...so that became our Easter...celebrating the life of our dear sweet girl and the Lord who makes life possible.

Camryn had a blast, she enjoyed every second of her day and it was a treasure to watch her just enjoy the life she had today. We were a family of four celebrating the life of our Camryn...yes, today was exactly what we needed. To celebrate her life, not dwell on the other stuff...but for one day just celebrate her.

We ate food, shopped, rode rides, watched parades...yes, it was a full day. We are tired, very tired...but, it will be a birthday we will never forget. **I'll post pictures tomorrow, a bit too tired today.**


Camryn Lee,

You never cease to amaze your Daddy and me...you are enduring things that you don't deserve and oh sweet baby girl we wish we could change it. We wish we could make it all go away...but, we can't. So we trust you to Jesus' hands, we hand you over knowing that He intimately created you, He loves you and His hands are better equipped than ours to hold you. We have loved you well and we will continue too for always...you have taught us much in your five years of life and I thank you. I am proud of you Camryn, your Daddy and I both are. You are a little girl of strength and determination...you fight and you push and at times it drives us crazy. But it keeps you going...you push us to keep going.

Our sweet girl you have a gift...you make people feel so special with you. You love people deeply and dearly...you cherish time spent with your family and friends. Keep loving those around you...keep giving to them, filling their hearts with a love which is amazing.

We are proud of you...we count ourselves most richly blessed to call you our daughter...our sweet little girl.

You mean so much to us...

Love,
Daddy and Mommy

You see tonight I tucked in my five year old and wondered where the time went...and my prayer is that on April 12, 2010 I will tuck in my six year old and admire the strength that got her through this fight...

You can do it baby girl...you've done it before...you're doing it now...and you'll do it again.

renewal

Easter...the time of year for renewal, the time of year when the world seems to be a little more alive. After the season of winter the renewal of spring of Easter comes.

The last few days have been hard, I'm finding that it's a whole lot harder walking this road a second time. I know what's coming and I know what much of it means; and it's scary at times. I was talking with Jason last night with tears on my cheeks about the first time around...

The first time around there was a hope given in the midst of the circumstances we found ourselves...a new baby was coming. Inasmuch as it was hard to be pregnant and dealing with a child with cancer, there was an unsaid hopefulness of the new life coming. I won't lie it was extremely hard to deal with both emotions of fighting for life and new life coming...conflicting emotions.

This time the hopefulness isn't as tangible...yes, hope is there. It's always there...we love and believe in a risen Saviour and hope is endless in Him. But, in the tangible ways that I can see every day...it's a little harder.

And then Easter comes...

Today we spent the day at my sister's house enjoying some Wilson family traditions. We ate good food, opened Easter baskets, had an Easter egg hunt and enjoyed our day together. It was wonderful...truly, wonderful.

On the ride out to my sister's I was gazing out the window of the car at the big blue sky with white puffy clouds and I wondered at the beauty of it all. A beautiful day of life...that's the hope.

The hope of tomorrow...the hope of a risen Saviour making it possible for us to spend eternity with Him.

As I continued to gaze out the window the thought kept coming...for me, He died for me.

For me...in the midst of the circumstances that we are living, the tears that are cried, the worries, the anxiousness...He died for me. It's a personal death inasmuch as it is a personal reserrection. He lives for me...He lives in relationship with me...not in the past, nor in the future; but today. He walks with me today.

So, as we enjoyed our day together I couldn't shake that this is for me...not selfishly, because it was for all of us. But, that my relationship with Him is personal, intimate and mine.

My heart is a bit more renewed than it was earlier this week, a little lighter and I thank Him...thank Him for dying for me and living for me and renewing me.

Here's a few pics of our day...

Camryn showing off her finds...


Wyatt doing his hunting


Camryn takes her Easter hunts seriously


Caleb, Josh, Makenna, Camryn & Wyatt...LOVE these kids


The Dynamic Duo


Wyatt and Makenna...they are best of friends


Our darling Easter girl


May each of you have a blessed Easter holiday full of hope and renewal...may you hug those you love tightly and thank the Lord for his many blessings.

The blessings of renewal...

tuesdays...

I've come to love Tuesdays, they used to be just another day in my life week...but, now they are so much more, well meaningful. Not that my daily life wasn't meaningful, it was and quite frankly there is a huge void from me missing my daily life; but now Tuesdays are the days when we see Camryn's doctors and see her levels.

Today Jason was off work so he took Camryn down to clinic and gave me the morning off so to speak...I got to spend the morning with Wyatt. Wyatt and I had fun...we slept in, snuggled in bed, watched Thomas the Tank Engine, ate breakfast, went to the park to play, and then met Camryn and Daddy for lunch. The time with Wyatt was so special to me, I really enjoyed just being with him...although I found myself thinking thoughts that I've never thought before. As we were at the park I avoided talking to the other moms, because quite frankly I didn't want to talk to other moms...I didn't want to say I have 2 kids and that one is at the hospital receiving chemotherapy. I guess I didn't want to make it awkward for them...because I know it's awkward for me.

I see little kids running and laughing and I looked at my watch and realized that in that very moment arsenic was running through my daughter's veins to save her life...it was weird to wrestle with emotions.

Wyatt and I met Camryn and Daddy for lunch and it was nice...Camryn bounced out of the car and was just so alive. She amazes me, really she just leaves me speechless sometimes...I feel like she should be so very sick. And she is, she has cancer...she is not in remission...but, don't tell Camryn that. She is living her life daily to the fullest! And it's wonderful...

After lunch Camryn and Wyatt headed over to my parent's house to color Easter eggs and just hang out with Grandma and Papa. I came home to help Jason clean out our garage...yes, a task I could do without. I seriously look at the garage as out of sight, out of mind...but I know it matters to Jason so I got to work. We worked throughout the afternoon and it was nice to feel a sense of accomplishment, to get something done.

I picked the kids up as Uncle Robby, Auntie Dede and Riley were coming over to hang out tonight...eat pizza...play the Wii. We had lots of fun...I especially enjoy watching Wyatt and Riley, they just make my heart smile. As always it was nice to be with the Mikels...we sure do love them.

Our day was full...very full, but very blessed. I am thankful for our days and the journey that brings up through each one...would I like the circumstances to change? You betcha. But, they haven't...and quite frankly they may never change.

Today at clinic Jason talked with Dr.M, we had not talked with Dr.M since Camryn's last aspiration and we anxious to hear his take on things as Dr.M is Camryn's "lead" doctor. Dr.M explained more fully wanting the percentage of leukemia cells less and why...which all makes sense to us. As of right now we will continue with 4 weeks of arsenic and then another aspiration probably the first week of May. Depending on how that looks it will go one of two ways...if her aspiration shows a plateaued percentage, meaning that the arsenic really hasn't changed anything then we'll go to transplant. If her aspiration shows a decline in the percentage of leukemia cells then if it is below 5% then we'll go to transplant, if not...4 more weeks of arsenic.

The doctors want the BEST possible scenario for Camryn's transplant...they want as much of that dang disease to be gone as possible. And if the arsenic is killing it, well then let it work.

I won't lie...it feels very weird to feel like it will be 4 weeks...now 8 weeks...to even think of 12 weeks before transplant completely amazes me. I feel like the road just keeps getting longer, but honestly I guess the road will never get shorter...this is a long road.

The Lord is reminding me that He is constantly in every detail...every one. He is found in the beauty of the world, He is found in the love of my family, He is found in everything...although sometimes I just don't see it.

I wish my vision wasn't so blurred right now...but, I will continue to hold on to what I know...

I know He is good...

After all two weeks off of arsenic and Camryn's levels are really good...they are holding well.

Yes, He is good...

Today as a little boy climbed and went on the swings, I smiled wondering if anyone there would guess that he is a bone marrow transplant donor.

He is good...

Tonight as I watched Wyatt and Riley in the bath I wondered at the journey of these two and just smiled...

The Lord holds us in His goodness...

I cry out for your hand of mercy to heal me
I am weak, and I need your love to free me

Oh Lord my Rock
My strength in weakness
Come rescue me Oh Lord

You are my hope
Your promise never fails me
And my desire is to follow you forever

For you are good
For you are good
For you are good to me

He can be trusted...He loves us more than we can comprehend...He gave His own so that we could have life...

How good is that?

the birthday party

Sunday was the day...Camryn's birthday is on Easter Sunday this year and forever ago I decided that Palm Sunday would make a nice "Easter" party day. Well, Palm Sunday did not disappoint...

Camryn wanted to have an Easter party in every way...eggs, baskets, candy, balloons, colors...all of it. What fun we had enjoying our family and our close friends that are like family...just celebrating the life of a little girl that leaves me in awe. Yesterday if you happened to pass our front yard you would have seen kids running, playing, laughing and enjoying life. And among those kids you would find an almost 5 year old girl with short hair and if you looked very closely you might catch a glimpse of her bandage from her central line; but otherwise there is nothing that makes Camryn stand out from the rest. She is a child who loves the life she has been given, every bit of it. Oh I'm sure if she were older she would probably argue that she could do without cancer...yeah, I'm pretty sure she would give that away. But, her life outside of that part...well, she LOVES it.

She loves her family...she loves her life...here's a few of the pics of our day.

The Birthday Girl


Wyatt and Grandpa


The Kids


Happy Birthday Camryn


Camryn LOVED her Pablo card


Jackson doing The Superman


Wy & Ry...these two are the best of friends


Happy Birthday Sweet Girl


Wyatt & James


Thanks to the many people who encouraged me throughout the days leading up to Camryn's party, I appreciate your thoughts and prayers. I won't lie I had difficulty getting to Sunday...many tears shed, but the day itself was amazing. I enjoyed it very much, loved seeing Camryn just enjoy her family, to celebrate the 5 years of life...

And dream?

Dream of more to come...dream of life, whatever that life might look like. To celebrate the life Camryn's been given and to cherish that...even if it's difficult, even if it's hard...to celebrate.

My favorite holiday of all is Easter, as a little girl I loved picking out my Easter dress, shoes and getting all dolled up for church. Easter baskets, candy, eggs...yep, I'm a sucker for all the traditional Easter stuff. But you know what...I love Easter for what it means. The glory of it all...the Resurrection...the hope.

When I stop and consider this week, Easter week and all that it means for me as a Christian and lover of my Lord I cannot help but consider the emotional journey Jesus was on this week. From the triumphal entry, His last words, the Last Supper, the weeping in the garden, the beating, the cross...the emotional range of Jesus' heart in as much divine was also human. He cried real tears...His heart ached...He had anguish...He was broken, bruised...and yet, He took the steps necessary to endure the cross.

The journey from Friday to Sunday is one that I cherish...the beauty of the cross, the scandalous nature of the Son of God crucified for sinners, for me...and yet, the glory to come. The glory of Easter morning...He is alive.

Easter holds immeasurable hope for the lost...hope for me. So, I only think it is fitting that this year Camryn's birthday falls on Easter Sunday. There is hope...there is an ending in glory. Yes, there will be tears, yes there will be moments of utter confusion...remember the disciples running, scared and hiding? But, oh the glory...oh the glory of the empty tomb...the glory of our Saviour's face.

"...Let the same mind be in you that was in Christ Jesus, who though he was in the form of God, did not regard equality with God as something to be exploited, but emptied himself, taking the form of a slave, being born in human likeness. And being found in human form, he humbled himself and became obedient to the point of death - even death on a cross. Therefore God also highly exalted him and gave him the name that is above every name, so that at the name of Jesus every knee should bed, in heaven and on earth and under the earth, and every tongue should confess that Jesus Christ is Lord, to the glory of God the Father."

~Philippians 2:5 - 11

I serve a risen Lord...and I will continue too. For I know that even in the moments of despair, He cares, He is there. For He knows the pain of life...and of death...

But, oh the glory of hope.

May we celebrate the lives God has given us and the hope that lies ahead...

Our home eternal.

cracked vision...broken dreams

Today I began to see it...I began to see why I have really been struggling the last few days. I mean it's been a struggle since February of 09, no really February of 06 for that matter. As I began to really see it, as feelings came into focus as they were swirling around within me; I felt as though I was dealing with shattered pieces of myself...

We are celebrating Camryn's 5th birthday tomorrow and honestly that one event has got me lurking in the shadows. I won't lie, Camryn turning 5 was a very big deal to me...I say was because attached to 5 was that we'd made it through post-transplant stuff to get her to 5 and ready for school. All throughout our journey through leukemia the first time I kept holding on to 5...let's get to five and maybe then Camryn could partake in a normal childhood.

Now, that's gone...

Gone for good...you see Camryn turning 5 isn't quite what I had envisioned, it isn't nearly what I had hoped for.

Tonight Jason and I were talking and I was sobbing...trying to put words to my thoughts. But, we really saw something as we talked...something that I really began to see what the last few days have been so incredibly difficult.

I don't know what to dream...

As a mother you dream big dreams for your children...you plan, you hope, you do all of that. You imagine their future...you imagine the steps they will take...the friendships they will make and all those things...

And right now I don't know what to dream...

You see I had all those dreams for Camryn, after walking through 2006 I had finally come to the place of allowing myself to trust and believe and dream again. And now it's gone. So, I left wondering what do you dream now?

Jason said it best..."we dream simply for life."

Yes, we are dreaming for life...breaths...for tomorrow. As simplistic as that sounds it's all we can dream for now...I wish I could dream bigger dreams. I wish I could allow my heart to let go and dream big again, but I can't. You see with 5 approaching I'm having to let go of all that I had for her...and it hurts.

I told Jason tonight that the only birthday party that we've had with Camryn without leukemia looming over us was her first birthday...every birthday since has been marked in some way by leukemia. I guess that's why I was so excited for 5...ever since we found out her birthday was actually on Easter this year we've been dreaming, planning and it was fun.

We had plans of a big Easter egg hunt with family and friends...our big extended family and our friends, Camryn's friends she has made while being in the world again. Well, we still will have an Easter egg hunt, but the guest list is much smaller...which is okay. Just another reminder that things are just not what we thought they would be.

There is a window in your heart through which you can see God. Once upon a time that window was clear. Your view of God was crisp. You could see God as vividly as you could see a gentle valley or hillside. The glass was clean, the pane unbroken.

You knew God. You knew how he worked. You knew what he wanted you to do. No surprises. Nothing unexpected. You knew God had a will, and you continually discovered what it was.

Then suddenly, the window cracked. A pebble broke the window. A pebble of pain.

Perhaps the stone struck when you were a child and a parent left home - forever. Maybe the rock hit in adolescence when your heart was broken. Maybe you made it into adulthood before the window cracked. But then the pebble came.

Was it a phone call? "We have your daughter at the station. You'd better come down."

Was it a letter on the kitchen table? "I've left. Don't try to reach me. Don't try to call me. It's over. I just don't love you anymore."

Was it a diagnosis from the doctor? "I'm afraid our news is not very good."

Was it a telegram? "We regret to inform you that your son is missing in action."

Whatever the pebbles form, the result was the same - a shattered window. The pebble missiled into the pane and shattered it. The crash echoed down the halls of your heart. Cracks shot out from the point of impact, creating a spider web of fragmented pieces.

And suddenly God was not so easy to see. The view that had been so crisp had changed. You turned to see God, and his figure was distorted. It was hard to see him through the pain. It was hard to see him through the fragments of hurt.

You were puzzled. God wouldn't allow something like this to happen, would he? Tragedy and travesty weren't on the agenda of the One you had seen, were they? Had you been fooled? Had you been blind?

The moment the pebble struck, the glass became a reference point for you. From then on, there was life before the pain and life after the pain. Before your pain, the view was clear; God seemed so near. After your pain, well, he was harder to see. He seemed a bit distant...harder to perceive. Your pain distorted the view - not eclipsed it, but distorted it.

Maybe these words don't describe your situation. There are some people who never have to redefine or refocus their view of God. Most of us do.

Most of us know what it means to feel disappointed by God.

Most of us have a way of completing this sentence: "If God is God, then..." Call it an agenda, a divine job description. Each of us has an unspoken, yet definitive, expectation of what God should do. "If God is God, then..."

* There will be no financial collapse in my family
* My children will never be buried before me.
* People will treat me fairly
* This church will never divide
* My prayer will be answered

There are not articulated criteria. They are not written down or notarized. But they are real. They define the expectations we have of God. And when pain comes into our world - when the careening pebble splinters the window of our hearts - these expectations go unmet and doubts may begin to surface.

We look for God, but can't find him. Fragmented glass hinders our vision. He is enlarged through this piece and reduced through that one. Lines jigsaw their way across his face. Large sections of shattered glass opaque the view.

And now you aren't quite sure what you see.

~ Max Lucado

That's exactly how I feel...my dreams have been shattered, the window of my heart is splintered in a thousand different pieces. The pebble cracked the window in 2006 and another on in 2009...guess my window is doubly shattered you could say.

I can see God...I can feel God and I trust God with it all. Yes, with all of it. But, he is harder to see...He is harder to feel...it's just harder. But, oh so much deeper.

Through my shattered window a depth has come in my relationship with the Lord that can only be marked with a shattered window...because it's simply not easy. Life just isn't easy...and the redefining happens and right now I feel as though the Lord is leading me to redefine everything.

And I mean everything...hopes, dreams, expectations, all of it...and it's hard to let go.

I know and believe that even in my tears, my frustrations, my cries He will meet me and even if my view is altered...HE will never be.

He is the same...yesterday, today and tomorrow....

Guess maybe my dreams don't matter anymore...for maybe tomorrow's dream is eternity.

tears...

The tears have flowed freely that last two days, not sure what it is...

But being a parent of a child with cancer just rips your heart in two...

And right now my heart just aches...

therapy

Anxiousness gives way to craziness...

Actually these past few days I have been partaking in therapy, not the kind you pay for; the kind you set you mind to in order to "work" some things out. My house has been my palette for therapy, seriously I am going crazy trying to clean it, organize it, just do anything I can to it inside and out.

I feel like I have to do something with all the thoughts, emotions, feelings, worries, anxiousness, etc...that build up inside of me. I have to find an outlet or quite seriously my mind might go crazy.

Today while I was driving I just teared up amazed that we really are going through transplant...really? Sometimes I see that little girl riding her bike and loving life and it kills me that there is a hell that awaits her. I want to grab her and run away and pray to God that this disease will leave her alone. I see her smile and I just want this nightmare to be over...but I know it's only really beginning.

It hurts...

I guess that's why I need therapy...but, the real therapy is what God has for me. The dialogues throughout the day...the moments when I want this whole thing to end...the tears that fall, all of it. He meets me in all of it, every single bit of it.

So my house is clean and my heart is aching; but I guess that's me finding an outlet for this heartache I feel.

Praying the Lord will continue to be with us as Monday we start another 4 weeks of arsenic treatment...but, before that that He will be with us as we celebrate Camryn's 5th birthday this Sunday with her party. Her actual birthday is on Easter...so may He allow us the grace to celebrate her life, and not worry too much about the future.

At least not too much...