days like this

Ever had days when you wonder when they will get better? They start in such a way that you wonder if it would be better to just got back to bed and literally start the day over...but, you can't.

Today was one of those days...

Tuesdays are always a bit of a rush for me and Camryn as we try to get out of the house before 7:00am to make it to clinic in time to get to the lab before it gets too crowded. Well...we didn't quite make it out of the house early. It was one of those you keep forgetting on this in the house mornings...plus, my keys got locked in my car.

Yeah, it was that kind of day...

Thankfully, we got the spare key after much searching. Why can't I always remember where I keep it so I don't forget? Ironic isn't it.

We were on our way to clinic, got to the lab and they were on number 71 and our number was 91. Yes, twenty people to wait through. All I can say is that Camryn is a trooper, she did great! Absolutely wonderful! We finally got her EKG, headed upstairs and made it to the procedure center.

As we were in the procedure center there were lots of people and lots of talk about transplants, weaning off meds, appeitates, steriods, cyclosporin...and this was with other patients. As I sat there my heart just went numb...is this really the world we are entering again? The world of tons of meds...tons and tons of doctors appointments...unknown outcomes...really?

Camryn did super today...she got her arsenic like a pro and helped the nurses flush her line and was her now normal talkative self. We saw the doctors and they agreed that Camryn looks wonderful, she is herself in so many ways...I'm really beginning to see how truly sick she was. Honestly, it's hard to think that in a few weeks another round of chemo will run through her body and knock out all the levels we are working so hard now to keep. Ironic isn't it?

Jason and I anxiously await Camryn's levels every Tuesday and Friday, we like to see how she's doing. We have gotten very good at reading lab sheets...very good.

Camryn's levels look really good today...in fact they look fabulous! Her white count has come up significantly over the last few days. We are very encouraged...in fact the elevated white counts brought the highlight of the day...

Since we live in So Cal and Disneyland just happens to be one our families favorite places...and in honor of Disneyland's free admittance on your birthday we had planned on going for my birthday this coming Sunday. Once Camryn relapsed we decided that was no longer an option and we'd just figure out something else to do.

Well, Jason after hearing Camryn's levels called her nurse practioner and asked about Disneyland. Taking a chance that they might say yes...well, they did. So on Sunday we will head to Disneyland...I am so excited! Camryn's team felt that it would be a fun outing before she has to go into transplant. Jason knowing that I wasn't having the best day surprised me with the news...as well as surprised Camryn and Wyatt.

Jason was telling me this evening about a co-worker of his that said something that made sense...sometimes you need to take the little small things and hold on to them. On days like this it is the little small things that get me through...

Days when I just want to stop...stop this nightmare...stop these realities...just make it all stop.

Days when I just want the world to understand that even though Camryn is doing so well right now...there is a long hospital stay that awaits her and her body will have a fight unlike any other.

Days when I can't seem to take another step...

And then the small things come...

A dear friend Kelly came to visit us today. Honestly, I love this girl so incredibly much...she has added so much to my life and I am forever grateful for the almost 18 year friendship we've had. She brought bright smiles and love for Camryn and Wyatt in the midst of a crazy day...I was simply thankful. Thankful that she decided to come over today...

A piece of cake from Dr. M...yes, Dr. M and Camryn have a friendship over cake. It started long ago when Camryn was in the first time...and it has continued. So in honor of Camryn bringing him cake last week, he brought her cake today. And that just made me smile...that he cares for her. I was thankful...thankful for the doctors who care for her.

A laugh, smile and fun with Camryn and Wyatt...I am very thankful for the smiles that the kids are bringing me these days. I know that these days will hold some incredibly memories and moments that will get us through transplant...that will hold us together.

The Lord will hold us throughout this journey as He already has and He will continue to. I know that the Lord held me fast today...because He holds me in His hands.

This song kept playing today...

It's hard to stand on shifting sand
It's hard to shine in the shadows of the night
You can't be free if you don't reach for help
You cant love if you dont love yourself

There is hope when my faith runs out
Cause I'm in better hands now

It's like the sun is shining when the rain is pouring down
It's like my soul is flying though my feet are on the ground
So take this heart of mine there's no doubt
I'm in better hands now

I am strong all because of you
I stand in awe of every mountain that you move
Oh I am changed, yesterday is gone
I am safe from this moment on

There's no fear when the night comes 'round
I'm in better hands now

It's like the sun is shining when the rain is pouring down
It's like my soul is flying though my feet are on the ground
So take this heart of mine there's no doubt
I'm in better hands now

It's like the sun is shining when the rain is pouring down
It's like my soul is flying though my feet are on the ground
Its like the world is silent though I know it isnt true
Its like the breath of Jesus is right here in this room

So take this heart of mine there's no doubt
I'm in better hands now
I'm in better hands now

In Better Hands ~ Natalie Grant

On days like this I believe, I know, I trust...that I am in better hands.

The hands of my Father...

3.15.02

Seven years ago today Jason and I were married...in so many ways it's hard to believe we have been married that long; and it others it seems like it was just yesterday.

Jason and I had planned to go out of town this weekend...but, in light of our circumstances now that is another thing that was "change" so to speak. Instead we spent the afternoon/evening together...shopping, chatting, eating...just being.

We had a wonderful day...really it was such a nice change of pace for us. We spent most of the day just chatting about life, about where we are...we tried not to focus on what is coming. At one point I just said, "Can we talk about something else?" The realities of our lives are hard to escape...but, for today we were able to celebrate our life together in the midst of the circumstances we find ourselves.

Seven years ago we said our I Do's and we vowed to walk through life together...never in a million years did we dream our married life would bring us here. But, it has and we are better for it. There is no one I would rather have by my side...no one.

Jason...

Thank you...thank you for who you are. For your strength, courage and positive outlook on life. You challenge me to see the world through different eyes...to hold on, even when I want to let go. Thank you for dreaming...for believing...for loving me.

I love you...

Always,
me

broader than it seems...

Another week down...honestly, time is passing relatively quickly and Camryn is getting through her arsenic treatments well. We have one more week and then we begin to prepare for transplant. I remember thinking that the arsenic weeks would be so long...now only one more.

Yesterday while we were at the procedure center and arsenic was running through Camryn's veins I was struck by something...childhood cancer is broader than it seems.

You see when Camryn was first diagnosed Jason and I did not personally know any other young children with cancer...it seems to strike so unexpectedly and in isolation. I remember my eyes being opened as we started chemo and such at Cedars...I remember seeing countless little kids and hearing their stories. As we walked through Camryn's first diagnosis and battle with leukemia...my heart was impacted by countless children and young adults who handled this disease with such grace and dignity.

Then Camryn started to get better and we started to return to our "normal" life, leaving our cancer world behind...we would still make our monthly trips back into cancer world. But day in and day out we were in the world of health...

Now, we are back in cancer world and my heart just breaks...Friday I saw countless children and their families getting blood draws...hooking up to IVs for chemo...talking with doctors. And I realized that Tuesday's clinic is for bone marrow transplant kids...Friday's clinic is for other type of cancers. Yes, this childhood cancer world is broader than it seems.

In our normal world...people aren't fighting this, but in our cancer world we cannot escape it. We begin to realize that we are not alone in this...there are many children fighting the fight of their life...there are many families struggling to keep it together...there are too many...far too many.

It is easy for our perspectives to become narrow...for our lives to be "easy" so to speak. For bad things to happen to other people...but, not in our circles. You know I was there once, but February of 2006 blew that all away.

I became a member of a group I never wanted a membership of...parents of a child with cancer. But, may I share something with you? It is through this journey that I have found a perspective I would not change. Oh, I would never ask for this journey...I would never choose it again. And if I could I would banish this disease from Camryn's life for all time. But, I can't...oh how I wish I could.

This is where we find ourselves and we are learning to appreciate what we've gained...leukemia has taken much...but, the Lord has given much. We are not less because of cancer...we are more because of Christ.

Our perspective is broader than it seems...because we are walking a journey that forces us to encounter people who are walking too...and I pray that Christ meets them where ever they are at.

As He is meeting us...and molding us into the people He desires us to be. Oh there are days when I yell and scream within myself and want answers...because my life looks so different than I would have ever wanted or even dreamed. I want things that I cannot have...

But, Christ love is enough and it is broader than it seems. His love is boundless, unconditional and available for me, for us. Even in the midst of this storm...His love is the anchor...

Yesterday as I was taking a walk my mom and I were talking about how well Camryn does with everything. How she has taken to her new schedule and everything so well...How she just does what she needs too. Where does the strength come from? The answer...The Lord hates this disease...He hates this war raging in Camryn's body. We live in a world that is fallen and broken and cancer strikes...but in his boundless love He provides. He carries Camryn through...He gives her strength for each day. He is the one...it is through Him that Camryn is able to live.

Yes...life in Christ is broader than it seems.

pictures

Here's a few pictures of our day outside...actually we've spent tons of time outside the last couple days and it has been wonderful!

Our little home run hitter


He bats left and throws right...Daddy likes that!


Darling girl


We're starting him young...


Riding her bike...yes, her legs are better!


Really, can't say I'm grateful enough...grateful for the last couple days. Yes, there have been tears, but there have been many more smiles, laughs and just good family time.

I'm so incredibly grateful that we have these weeks together at home to just be together...to enjoy the longer evenings of daylight...to enjoy the warmer weather...to enjoy our home...to just enjoy. To enjoy the life we have now for what it is. Yes, even in the midst of the storm we will praise...

Praise Him for another day.

quote...

"God whispers to us in our pleasures, speaks in our conscience, but shouts in our pain, it is His megaphone to rouse a deaf world."
~ C.S. Lewis

Found this quote on a scrap of paper on our desk that I was cleaning up today...wrote it down many, many years ago...funny how it found me today.

The Lord is moving...moving pieces of my heart, beginning to prepare me for what lies ahead. He is shouting in my pain...He is causing me to rely on Him in ways that I never have before. He is allowing me the grace to walk the path in front of me...He is shouting to me...

I hope He gives me the strength to listen, no matter where the path leads...

cupcakes...bikes...baseball...oh yeah, clinic

Aside from going to clinic today the day felt really "normal"...honestly, it felt as though we had stepped through and we were out on the other side.

Camryn decided that she wanted to take cupcakes to her most favorite nurses and doctors today...now it had to be a Tuesday because that is when Nurse Charlotte is there along with her doctors. So, last night we made cupcakes and we took them to clinic today. Honestly, my heart just smiled as I thought to myself that even in the midst of all of it...she appreciates those who care for her. She has such a special heart...one that I treasure.

As we were at clinic we had quite a lot of visitors...I've come to like Tuesdays as they go faster since there are a lot of people to chat with and see. Camryn did great getting her HKG (as she calls an EKG) done...it should a slight issue, but the cardiologists checked it out and gave Camryn's doctors the green light for more chemo. We saw the doctors who were so pleased with how Camryn looked...honestly they could not get over how much improved she is. They were pleased to hear that she is not on her pain meds and is up walking...moving and being much more active. All in all the consensus is that the arsenic is doing its job and we'll stay the course.

At this time the course is for Camryn to have a bone marrow aspiration on March 24th and if all is a go then Wyatt would go to clinic on March 31st to meet with the doctors and have his blood work done. Then about the second week in April it's go time. Now, all of this could change; but for now this is our plan...and oddly it feels good to have some sort of plan in place.

Later this afternoon when Jason got home from work the kids wanted to ride their bikes. Now, let me say that a week ago Camryn could barely walk...so the idea of her wanting to ride her bike made me smile. I honestly didn't think she would actually do it. Well...she did. She rode her bike all over the drive way while Wyatt just ran around. Seriously, that boy loves to run. They had a wonderful time...for a moment I caught myself just soaking it all in. The smiles, the laughter, the fights...all of it and it filled my heart.

After bike riding wore off Jason, Camryn and Wyatt turned to baseball...I got out the tee and off they went. Oh my goodness what a sight...the three of them playing ball. Of course Camryn had to lay out the plan and the rules and Wyatt well...he just wanted to get the game going. They had such fun...Camryn our little right hander and Wyatt, well he's batting left. Yeah, maybe we have a southpaw.

Honestly, today just felt so good...felt good to just be. To walk away from clinic knowing that this is the road for us now. Yes, I don't like it...in fact it's so hard for me to really consider what all of it means. But for today we walked our road one foot in front of the other. We did what was in front of us for today...and you know that's about all we can do.

I was reminded tonight as I hung out with my sister-in-law that really that's all we can do...take one step at a time. Do what is in front of you now and leave the rest? Well, leave the rest at His feet.

It is hard for me to let go...it is hard for me to release...some days are easier than others...

And today it was a bit easier.

faith...hope...love

Giving and taking...allowing and restricting...yes, these thoughts have rolled through my head and heart this weekend.

This past weekend was a difficult one for me, honestly it was not a complete surprise as I knew that things would eventually catch up with me...and they did.

Saturday a flood of moments and plans that we had made for the next few weeks came...because they are not to be. We are having to adjust what we were going to do and are finding it hard to really plan anything at this point. I guess the future is so unclear at this point...so how does one plan?

Hardship came in ways I didn't quite expect, but it came nonetheless...tears flowed freely on Saturday as I wrestled with our life now. I in no way want leukemia to define us...but, oh how it limits us. I guess those limitations of old are becoming reality again and accepting that has proven harder than I expected. After all this isn't the first time...

Sunday Jason went to Sunday School and I was reminded that church is so very far away...that going as a family is so incredibly far off. And you know what I had come to the place where I enjoyed going again...and now it's gone.

Sunday we also had the wonderful privilege to celebrate our nephews Blake & Ethan's birthday...to remember, honor and love them. We had to go early as Camryn can't be around large groups of people, but what a blessing it was. We cherish the time we spent with Rob, Devon and Riley...truly, our hearts were full of love. Camryn & Wyatt let balloons go to honor B & E...and it was so special. Wyatt didn't understand it all, but Camryn did. You see to Camryn, Blake & Ethan are her cousins who are enjoying the presence of Jesus now...and we'll see them soon. Camryn absolutely adores Uncle Robby, Dede and Riley so the day was so very special to her.

Treasures...




When we got home I had a message that my cousin Steven who is more like my brother had his baby girl yesterday...oh how my heart was thrilled. Steven means so much to mean and for him to be a Daddy just made me smile.

Yet...as I sat on the couch tears fell. Tears of grief mixed with joy...tears of fears. You see last night I had my first real cry of all this...I just let it come. I am scared...scared of what the future holds. Scared of Camryn being so very sick...scared of the realities. Because not everything works like we want it to. The tears came as I struggled to find words...words didn't come, sobs did.

Jason held me as I just cried...cried to be walking this journey again. Realizing that my years of motherhood have been forever marked by this dreaded disease...trying to release, let go and yet...feeling the desperate need to hold on.

As I woke up this morning for another week of clinic visits and arsenic treatments...I felt the Lord so clearly. It is as if He said hand it over Dana...let the tears fall for in the tears I hear your heart. As Jason said last night the Lord hates all this as much as we do...in fact He does.

Today the Lord has held me...and I have felt His peace even in the midst of the storm raging within me. I can't quite understand all that is in front of us...I can't see clearly...

"For now we see in a mirror, dimly, but then we will see face to face. Now I know only in part; then I will know fully, even as I have been fully known. And now faith, hope, and love abide, these three; and the greatest of these is love." ~ I Cor. 13:12 - 13

Faith, Hope and Love...clinging to these three.