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...