a few pictures...

I uploaded new pictures...thought I would share a few.

* Camryn made this drawing of herself. I think it's simply great! She drew it, hung it up, and all on her own. It was so cute...I love it!



* A self-portait of us on our anniversary weekend.



* We drove up the coast and even in the rain, it was absolutely beautiful. I love California...so peaceful, so amazing.



* The note I found tonight on my dresser...precious. Camryn went on an overnighter at church last night. We were nervous as it was her first outing like this, but she did great! She LOVED all of it...the games, crafts, movies, food and just feeling like a normal little girl. A precious gift after a hard week. This not is not one of sadness, rather I cherish it as Camryn is beginning to come into her own and her world is expanding and it is a gift.



* And because she had so much fun at the overnighter she wanted to sleep in her sleeping bag on her bed. She loves her sleeping bag that her Daddy so sweetly bought her when he knew that she was going because she didn't have one.



Hope you are all having a great weekend...we are enjoying it, after a hard week. Thankful that joy comes even in the midst of the clouds...

{happy} birthday...

Yesterday was my birthday and although it was a happy on, later in the evening there was a bit of a dark shadow looming over the day making it not so {happy}. Let me explain...

Camryn and Jason went to clinic this morning for Camryn's monthly appointment, they saw one of the newer doctors to the team. They agreed that Camryn looked great, except she does have a few more spots of eczema type rash that have developed over past month. They prescribed hydrocortizone cream to help take care of it and hopefully in a month it is cleared up. They also ordered a chest x-ray as Camryn has a cough that doesn't seem to want to go away. After clinic Camryn and Jason headed to the lab and then to the x-ray...lab went well, x-ray was clear. Yay!

They then headed to In and Out for some lunch as Camryn had a therapy appointment scheduled for later that morning. We are trying our best to schedule her appointments on the same day if we can due to the drive to UCLA and such. After lunch they went to therapy and it went super well! She is doing great with therapy...making progress which is great. Her therapist is very pleased that she is doing so well in only a few weeks. As I write this Camryn and Jason are working on some of her therapy work...sometimes it's easy and sometimes it is a battle. Tonight a battle. (sigh)

They came home and enjoyed the afternoon with Wyatt while they waited for me to get home so we could go out to dinner for my birthday. My birthday had gone well, as well as it can when you have to work on your birthday. :) But, really the day was moving well and I was ready to get some dinner.

The phone rang.

UCLA Telecom on the caller ID.

I won't lie my heart sank...but, we answered the phone and it was B, Camryn's nurse practitioner on the other end. She explained that Camryn's liver numbers were really high, far too high; so they had decided to put her on steroids starting as soon as possible. My voice got shaky, and B said, "I am so sorry."...I was and am heartbroken.

We headed for dinner, but I probably don't need to tell you that it wasn't exactly the happy birthday anymore. After walking this road with Camryn and going through relapses twice our minds automatically go to a place which is very dark. Jason and I both get edgy and start thinking the absolute worst...and the question that was looming like the elephant in the room...

"Was this the start of a relapse?"

We made it through dinner, but I did have a good cry. I hate steroids, hate the side-effects and just hate what they do to Camryn. And Camryn hates them too. She knows exactly what the steroids do and she doesn't like herself on them. How can it be that an almost 7 year old has identity issues? It breaks my heart. Before we went to bed I asked Jason if he would call the next day and find out just what exactly is happening, because I could not just keep my mind from going in circles. He said he would. But, yes I fell asleep in a pool of tears on my birthday...not so great.

But these are the realities...

Jason called B again and asked a few more questions and then asked the question about relapse and the answer was "No, all her other levels are solid and strong...she is doing well. Nothing points to a relapse at all." She went on to say she understands our fears and affirmed the journey we've been on. I am thankful for the doctors and people at UCLA. Jason called me at work and I breathed easier...the elephant could now leave the room.

Yet, all of these feeling resurfaced a lot of feelings and things that I feel as though I have worked through...but, when something like this happens the feeling rears it's ugly head. I get scared...really scared. And the reality is it is hard to know just what to say...

We live in a very precarious world...when I found out about the steroids I emailed my close friends asking for prayer, because really I was not doing well at all and I needed them to know that I could use help. And true to my friends, they were there and I am so thankful. But, it is a world where life changes in one phone call. And yet, we all live in that world...just some of us have lived it really and some haven't known the reality of it's pain.

I can honestly say that I'm not completely okay with everything...but, I am trying to focus on the good in the midst of the rain. Trying desperately to hang on to that which I know and leave the other questions for another day. I read the other day about putting your hope in someone instead of something...and that is where I feel I am right now. I cannot put my hope in lab sheets, medicines, or even doctors...because no matter how great they are they pale in comparison with the greatest hope of all. Jesus Christ.

Again and again I am learning to put my heart and life in his hands...and finding my hope in him, because he has overcome it all. And he is my Lord, always...

Last weekend while Jason and I were walking on the beach a song came and I was quietly singing it to myself...

I have a Maker
He formed my heart
Before even time began
My life was in His hands

He knows my name...

~ Tommy Walker

And even more than that...He knows Camryn's name. He knows the journey of her heart, and He knows that taking these steroids is hard, painful and just plain upsetting to Camryn. Because he knows her...

So, it wasn't the happiest birthday ever...but, it was a reminder that Jesus is the same yesterday, today and forever and he cares for me. He cares for us.

weekend report...

Friday morning Jason and I headed up the coast to Pismo Beach for our anniversary...it was a super fun get-a-way. We stopped in Santa Barbara, did a little shopping, ate some lunch and enjoyed time together. Then we set off up the California coast...yep, I love the central coast of California. The green rolling hills, wildflowers gently blowing in the breeze and on the other side the beautiful Pacific...yes, I love the coast. We got up to Pismo and enjoyed walks on the beach...a local dinner...and some nice time just us.

Last year we were going to get bikes for our anniversary, but that didn't happen...has that ever happened to you? You have plans and then somewhere along the way they just don't happen. Well, not this year...we got bikes and we took them up the coast with us. It was quite an adventure...many thanks for K&T for letting us borrow your bike rack!

We headed up to San Luis Obispo on Saturday morning for breakfast and then over to Avila Beach...unfortunately the rain that was forecasted came and we weren't able to ride our bikes too much that morning. But, as we headed home it seemed that we were out running the rain, so we stopped in Carpenteria and got lunch and enjoyed a rain free bike ride. We had lots of fun!

As we drove home we stopped a various little places along the way...we picked up some fresh strawberries that Wyatt says are the best he's tasted. :) We met up with the kids on the Interstate 5 and 14 merge...Jason and I had joked what if we saw them and sure enough there they were on their way home from my sister's house with my parents. It was fun to see their little faces smiling and waving at us. We sure missed them.

We had a great time...it's always nice to get-a-way for a bit, and many thanks for my parents for watching the kids for us!

Today has been the rainiest day I remember in a long time...we're staying indoors and catching up on life (cleaning, laundry, etc). Of course we are watching some NCAA basketball as well...Go Blue Devils! I also wrote "thank you" cards to two of Camryn's very first doctors at Cedars-Sinai...they are semi-retiring so J our friend at Cedars contacted me to ask if we would participate in thank you books for them. Of course! But, as I started writing I found it hard to figure out how best to say thank you to doctors who did so much for your little girl...and memories came flooding back as Camryn was so little when she was at Cedars and now she is almost 7. Where is time going?

This week Camryn has her clinic appointment on Tuesday and therapy...it'll be a very full day UCLA for her and Jason. If you could pray for Camryn, she has a cough and a cold. Praying her levels are nice and strong...hopeful for a wean of the tacrolimus!

Hope you all are enjoying your weekend...

nine...

Today Jason and I celebrated nine years of marriage...what a wild ride. I am thankful for the nine years and excited for many more. Thankful for the journey with my best friend...the person who allows me to be me, who loves me in spite of myself, and the man who meant what he said 9 years ago to love me no matter what.

Even through a miscarriage, childhood leukemia, a crazy journey of being pregnant while practically living in the hospital...I think it is safe to say he has seen me at my best and at my worst. And he's loved me the same...

I'm thankful for the boy who watches sports with me, makes an NCAA bracket, tapes Duke basketball games, and understands my competitive passion. And I'm thankful for the boy who takes me shopping, understands my love of old things, let's me enjoy the treasures I've collected, and embraces my girly side. Yep, for all I am...I am better because of him.

So thankful...

Camryn had her second therapy appointment today and she did great! Her therapist was super happy with the progress Camryn has made, especially in her right arm. We are trying to be very faithful about doing her stretches every night as we know that is one of the ways that we can keep her therapy at just once a week. We are so proud of Camryn...she really has a good attitude about going and is doing really well at home while stretching. Sometimes I just feel like she's going to give up because of all she's been through; but she is one tough cookie and she amazing me daily. So proud of our little fighter!

Thankful that for nine years Jason has walked by my side and carried my heart through some of the most difficult moments my heart has experienced...and yet we are still us.

Thankful for all that the Lord has given...and anticipating much more for years to come!

first night...

We did Camryn's stretches for the first time tonight and we survived. Camryn did great...I was surprised at how simple the stretches truly were. I was also teaching Jason the stretches as we went along...

Shoulder.

Elbow.

Arm/Wrist.

All in all it wasn't too overwhelming, but it is something to add to the list. And yet for being on the list the stretches are something that I can see will help Camryn tangibly. Oh, her meds help her in ways that my eyes and her eyes cannot see; but therapy I think will help her in ways she can see. And I think that will be a huge step for Cam.

Throughout this journey almost everything has been talked about in terms of "you really need to do this." and the "it will make you better." But, honestly I'm not sure she believes it...oh, Camryn knows she is better. The proof is that she is sleeping in her own bed.

But, beyond that it's an act of faith for Camryn to trust that all these many things she has endured are truly making her better.

Therapy I think will be different.

Even tonight while we stretched I encouraged her to try to reach back further and she was so proud when she could go further with her right arm than with her left. It's the little things...she was thrilled. Because I think she could see it, feel it, and enjoy it.

There is not much enjoyment for a six-year-old when looking at a lab sheet, but when she is able to almost get her elbow to her ear...well, that's a matter of celebrating.

Again, this is never where I thought we'd be...

And after a very overwhelming morning on the phone trying to schedule all Cam's follow up visits, I was at peace. We have to do what we have to do...even when the rest of the world is living differently. We are hopeful that these small steps will equal big results for Camryn even on a long road...

While life is uncertain, God is not.
While our power is limited, God's is limitless.
While our hope may be fragile, God is hope himself.
~ Pete Wilson

>

therapy = long road...

Camryn started another "leg" of her journey today...therapy.

Camryn and I made our way down to a new area of UCLA for therapy, a whole new experience for both of us. We made it down in good time, found where we had to park, walked a bit to the building, and found our check-in spot. The lady behind the desk was super nice and helpful...and I was a bit at ease. Camryn was not. She was nervous, scared about what "therapy" actually means...

We sat a few minutes and Camryn was getting more and more edgy...she just was so anxious. I tried my best to assure her that she would be fine, no medicines, no shots, none of that; just a nice person who would help her with her hands.

As we waited I filled out paperwork...

I hate paperwork at doctor's offices. Oh, I know it is necessary...but, never in my wildest dreams did I ever anticipated checking the cancer box for my child. Or having to list her hospitalizations, radiation, surgeries, treatments, etc. As I fought my tears that yes, in fact I was checking the cancer box for my six-year-old daughter; I could see that little girl finding dates on my day planner that she was looking forward too. Yep, at this point she doesn't quite get it, but someday she will and someday she will be checking that box herself. And that breaks my heart.

After that moment passed a very nice looking lady came and asked for Camryn...Camryn immediately got super quiet and scared. Thankfully the lady who I am sure had dealt with kids before gently asked Camryn to come in with her. We then walked through the door of UCLA's rehabilitation services...wow! There was equipment everywhere, therapist working, patients trying...and so we followed and found our spot. P (Camryn's therapist) began her evaluation...

She asked Camryn to do a bunch of things with her hands and arms. P is a hand specialist...she was great! We talked and she was so very nice...Camryn and I both were comfortable. She stretched and accessed Camryn's hands and arms...

It was determined that Camryn does have some issues with her tendons in her shoulders, arms, and hands. P wants to see Camryn once a week to work on developing some range of motion and flexibility. I was amazed at how little Camryn really can do with her hands and arms...P commented that she was surprised that we noticed a problem, but it is great that Camryn is getting help now. P also evaluated Camryn's legs for a bit and suggested she be referred for physical therapy. As the evaluation went on P showed me stretches to do with Camryn and gave me an extensive list of all our "homework".

After an hour we left and we'll head back next week for a 45 minute session...

And I fought tears...

Not because it was bad, no because it was another thing to juggle and just another thing for Camryn to have to do.

And yet, I know that she really does need this, it will be so great for her.

But, I keep feeling like the road is never-ending, that as soon as it seems there is an end in sight...the end moves further away.

Therapy was good, Camryn did great...this Mommy did okay, but her heart hurts over the long road ahead.

I am beginning to learn that what I was told over two years ago now is oh so true...

"it will be harder this time...but, better we are going to get her well."

Harder yes.

And I just keep holding on to the well part.

exciting news...

Yesterday I got a phone call from the social worker at UCLA, informing me that Camryn had be chosen to be honored by the Parents Against Leukemia group. My heart smiled...

Awhile ago in clinic Camryn was asked to draw a plate to be entered into a competition for a plate to be chosen as the plate of the year. I vividly remember Camryn coloring her plate template, she drew a princess and it was cute and colorful! The lady from PALS was encouraging Camryn to draw as she Camryn share the same diagnosis, acute promyelocytic leukemia. To be honest, I hadn't thought of the plate again until yesterday...

Camryn's plate was chosen as the plate of the year! She was so excited when I got home and told her! She got the biggest smile on her face...it was just what my heart and I think her heart needed.

Camryn will be honored at a luncheon in May, and she will receive a plate and another one will be hung in the display of plates in clinic.

On the walls of clinic are a collection of plates from years past...I have spent countless moments looking at the plates and wondering where the kids are today that drew them. To think Camryn will be added to that collection makes my heart smile...in some small way she can encourage others, what a gift.

We are thrilled...it's neat to have people notice the journey of our sweet girl. And after the hard night on Sunday...the beauty of her smile yesterday was priceless!

hard to explain...

Tonight while Camryn was doing her homework we battled tears...it breaks my heart when homework is a battle. But, really it's not the homework...it is so much more than that.

Some nights Camryn really struggles and I find that all the *stuff* she has to deal with catches up with her at night. At night is when she takes her medicines, brushes her teeth, puts on her lotion, and all the other little things. Plus, she is tired...physically, emotionally, and mentally.

Tonight she just cried and cried because she desperately wants to go to school. She was so sad, because as she says, "I'll never get to go to school." And I'm stumped as to what to say. We have tried to explain it in a variety of ways, but none of them seem to suffice. And truth is I don't know if any answer would suffice.

Some times Camryn gets very edgy and snappy...and tonight I asked her what was wrong to which she said, "I'm just not happy." If that doesn't break your heart...

We went on to chat and really she just wants what she can't have...school, friends, no doctors, no rash, no medicine...the list goes on. She wants to play soccer, she wants to not be afraid. She has a cough right now and she was crying because she doesn't want to be sick...because she'll have to go to the hospital and "stay there for awhile."

How do you explain to a hurting six-year-old heart what everything means when you can't even explain it to your own almost thirty-six-year-old heart?!

So, tonight I tucked her in...gave her a kiss...and prayed that soon she'd be able to get the things she wants. Because that's what her heart's desire is...

And I firmly believe Jesus hears those cries of her heart...

And I hope somehow Jesus can explain it to her in His own way.

Because for this mommy it's hard to explain.

happy birthday BE...

Happy Birthday to our sweet nephews Blake & Ethan...

You blessed our lives three years ago today, never did we imagine the mark that you have made on our lives. We love you. We miss you.

Our lives are richer because of you...

We eagerly anticipate the day we will see you again. Your cousins cannot wait to create trouble with you...laugh, smile and just BE.

We love your Daddy, Mommy, your sweet big sister Riley, and your little sister Peighton...they are incredible and our lives are blessed beyond measure by them sharing you with us.

Lots of love sweet boys.

the big 21...

Twenty One Months...

Funny how when I typed those words my eyes welled up with tears...because Camryn was twenty one months old when this whole journey began. And for the second time she is twenty one months post-transplant. Can I get a woohoo?!

Camryn is doing great...really she continues to amaze me with her spirit and her fight. After the rough start of February we've now made it to March and it feels good. Camryn continues to do well with school...in fact I meant to blog about her report card, but somewhere that post got lost in my mind. Her report card was great and we are so very proud of her...she is reading very well. In fact this week she was very excited to tell us that she had moved on to second grade decodables (little readers)...so, she is reading on second grade level. Math is going well too, she is on grade level and doing very well. I mentioned that her teacher had written a note that Camryn was a reluctant writer...she will write, but does not enjoy it. I'm hoping that maybe Camryn's OT appointment might shed a little light on this. But, for now our girl is doing great...living life to the absolute fullest and completely enjoying the moments she is given daily.

And in the twenty one months a little guy continues to grow and navigate a very different world than most four-year-olds...but, Wyatt does it well. Wyatt is growing...maybe not super tall, but he is filling out and I feel like he is out growing clothes faster than I can buy them. He is getting to be a bigger boy and it's so fun to watch him develop into his own person. Wyatt is a crazy little guy, which very few people see...he is very shy and yet a ham all at the same time. I love the way he loves his sister and the friendship they have...it is a gift beyond measure to this momma's heart.

Next week Camryn goes to OT...I'm actually looking forward to it in a way. I always knew that we'd have a long journey with Camryn beyond just medicine. After your body gets pumped full of all sorts of things there is no telling just what might show up in time. Camryn is okay with going as we've assured her that therapy does not include a shot or medicine, but rather exercises to help her hands work better.

We are thankful...ever so thankful for the moments along the way. Some have been awful and hard; some have been beautiful and easy...but, all of them have been cherished as we have been ever so blessed...