pics from the week

We've made it to Saturday...almost through our first week. So, in honor of Saturday I thought I'd share a few pics from the week...Hope you enjoy!

Hanging out with Wyatt



Sleepy Camryn after radiation


Figuring out the webcams with Daddy


A Perfect Saturday...the Best Friends hanging out

done...

WooHoo...Radiation is done!!!

Camryn finished up her radiation treatments tonight...it would be a huge understatement to say we are proud of her. We are so incredibly proud that we are planning on surprising her with a little something tomorrow, just to let her know that she's incredible. Simply amazing.

One of the reasons that we are so proud of Camryn is that most five-year-olds are not able to lay still for 30 minutes without moving to receive treatment. Camryn had total body radiation as part of her conditioning treatment to prepare for transplant. Not only did Camryn have to lay still she was alone in a room, that honestly is scary. Radiation is not the most kid friendly atmosphere. Camryn laid on a bed and then the techs molded a air like cushion around her so that she wouldn't fall off the table...while a giant machine beamed radiation beams on her entire body to kill her leukemia cells and also prepare her body for transplant.

Some of the side effects are vomiting and fatigue...both of which I'm happy to say Camryn has not dealt with...she's been doing great. Her doctors are amazed at her and very proud of her..."there is something special about Camryn." We've heard this statement a few times...

And we could not be more proud.

Tomorrow starts chemo and that will be the next step...the next bridge if you will. And we will continue to pray that the Lord protects her...that He would be next to her and hold her so very close. Every time I walked out of the radiation room with my little girl strapped to a table I prayed...

Lord,

She was yours before she was mine...Please hold her tight...Please be near her as I cannot hold her now...Hold her, never let her go.

And He hasn't yet.

And He hasn't let go of Wyatt either...because daily I pray for him as He walks this journey too. Hard to believe he was so little the first time...I know that I will struggle when they wheel him into surgery and I'm sure that the same prayer will be on my lips...

Trusting our children to Him...Holding them loosely as they are gifts...and not one day was promised.

just the coolest...

I have to give a huge shot out to our friends R & K for their very generous gift to Camryn...a laptop, with a webcam so that Camryn and Wyatt are able chat throughout our long hospital stay.

Tonight was our first chat and it was just the coolest thing ever...

Camryn asking Wyatt all sorts of questions and Wyatt entertaining us with his antics. It was simply wonderful.

Oh how I wish that we were not chatting via webcam and that we were under the same roof...but, thanks to modern technology we are able to "see" each other. Not my ideal, but then again none of this is ideal.

But if this is as good as it gets...then it is the coolest!

Thanks again to R & K...your gift means so much to a 5 year old and a 2 year old, but more to two parents trying their best to keep their family connected!

happenings so far

We are getting settled, starting to find our routine and as oddly as it sounds it's becoming normal. Yes, normal...

Yesterday radiation went really well...the morning session went well and again the techs did everything to make Camryn comfortable. They brought in glow in the dark stars and planets and hung them on the walls to give Camryn something to look at during treatment...and you know Camryn really enjoyed it. She got a little flashlight to use and look at them while everything gets set up for her...honestly, as non-kid friendly as radiation is the techs are trying their best to make it easier on Camryn and I am thankful.

During the day Wyatt got to come visit and yes that was by far the highlight of the day! Camryn had lots of fun showing Wyatt all the ins and outs of her hospital room. She was proud to show Wyatt how to call the nurse, how to order food and where everything was...it was quite cute. They both hopped up on the bed and watched a video together (pics will be posted soon)...they were too cute. My parents brought Wyatt down so while Jason and I got some lunch the kids hung out together...and Dr. M came by for a social visit and played with the kids, having fun with Camryn's bed. Yes, Dr.M knows the way to patients hearts...be their friend.

Wyatt and Camryn played the Wii for a bit and just enjoyed the afternoon together...Jason took Wyatt home later and Camryn crashed and slept for 2 hours. She was beat from her visit with Wyatt...but, oh it was such a fun time!

Last night Camryn had radiation again at 10pm...it was late and honestly a little weird to be the only one's down in radiation; but all went well and Camryn again did super.

Jason talked with Dr.M yesterday and he was so surprised and pleased that Camryn was doing so well with her radiation. He thought for sure she would need to be sedated as it is very hard for kids to lay still...but so far Camryn's done so well, we are so proud of her!

Today has been a good day too...radiation went well this morning, Grandma Mikels came to hang out with us for awhile and then Grandma & Papa Wilson came by. So, Camryn had visitors and she has really enjoyed her day. Now, it's just me and her and she's watching some tv and resting...this is becoming her slow part of the day. It's nice to have a few down moments.

Wyatt has also had a good day today...he got to go over to my friend T's house for the day to play. A big thanks to T for taking care of Wyatt today...It means so much. One of the things that is really hard with all of this is being divided and having to balance care of both Camryn and Wyatt. But I am so thankful for our families and friends who help us figure out all the details.

We are doing alright...hanging in there day by day. Transplant is a week from today and that will be our BIG day...the day of much anticipation. The day when numbers start moving in positive directions...

Only 3 more radiation treatments and we are very thankful...with each day bridges are being crossed and we are thankful.

The Lord continues to guide us and care for us in all things...

days down...

Two days down...how many more to go? I'm not sure, but at least we've begun the process.

Camryn's radiation treatment got bumped back to 10:30 this morning as opposed to 6:00, so I was able to be down there with her and Jason. Camryn was nervous, she's never done this and I could tell she was a bit overwhelmed. The techs were very nice and gentle with her, which was helpful...Jason and I walked away to the waiting area. I teared up...just so not wanting to do this again with her...just wishing that she would be okay. The procedure would take 30 minutes, and yet it felt like an eternity.

The tech came out half way through to let us know that she was doing okay, a little fidgety, but okay. The second half was a bit rough on her as she had to be strapped down so she wouldn't move as much...the tech said Camryn teared up, which just made my heart break. I wanted to run to her in that moment...hold her and never let go. But, these are necessary steps and we do our best to encourage Camryn...protect Camryn...and be strong for Camryn.

After radiation was through she was fine...she wanted to go back to her room and just be left alone. We headed back and she ordered her lunch, which was a good sign. We ate some lunch and then had a surprise...

Nurse Charlotte and Nurse Allison came to visit...yes, this was very special for Camryn. While chatting with them she played Wii bowling with Allison and just enjoyed having them come. I am continually thankful for the care they give Camryn and us...we are indebted to them...

We played some, got Camryn's line changed and headed up to the playroom for a bit. All in all it was a nice afternoon...

Later this evening Auntie Heather came to visit and I know that was a very special time for Camryn...she loves having her visitors.

Tomorrow brings a new day and we continue to settle in to our routine and find a balance of life at home and life at the hospital. Thank you for the sweet comments, emails and thoughts...they are so encouraging to us as we travel moment by moment.

And the highlight tomorrow...Wyatt's coming to visit Camryn...yep, that is a much anticipated event!

Pics to come I promise.

settling in

Today came...funny how I really thought in some way it might never come. But, it did...

We headed down to the hospital early afternoon to get settled in. Camryn had a great attitude as we headed to admissions and then upstairs. We started walking down the hallway and there were the familiar faces...all smiling and waiting for Camryn to arrive. Lots of hi's and smiles...and we found our room.

Our room is much bigger than it was in February which is very nice, since we'll be there longer than a week. It's nice, we have a bit of a view and lots of open space for Cam to walk around and play...which if things go like they did last time, Camryn will do.

In fact her nurse said that there was a Nintendo Wii in the hallway that she could move into her room to play...yep, Camryn and Jason jumped at that chance. When I left they were playing together...yeah, the Wii will get lots of use!

After checking out the room Dr. Dave and Dr.K came in to give us the information about tomorrow and starting meds and such. It was nice to have familiar faces caring for Camryn.

Since Camryn didn't need to be hooked up yet, they allowed us to take her to the cafeteria and eat dinner. So we jumped at the chance and walked downstairs, got our food and ate outside on the patio...it was a nice treat. We were very thankful for just that small little thing.

We headed back upstairs and just settled in a bit more. I had copied a bunch of pictures for Camryn to hang in her room so we did that together...the cutest comment was when choosing where to hang a picture of Wyatt Camryn says, "I want to hang my best friend here so I can see him every day...even when I go to the bathroom." Yes, Wyatt's picture is on the bathroom door. It's cute!

After while I headed home to catch up with Wyatt. If I'm honest this is a hard part of the journey...a divided family. It's hard to walk away from Camryn and Jason and yet it is so hard to leave Wyatt too. Wyatt and I are hanging out and he is keeping me company which is very nice. The first time around Wyatt was a month old...now he's 2 and he is chatting with me and just being my little shadow. It's nice.

I'm sure once the silence and darkness settles in it will be hard...that always seems to be when it all comes flooding in. But as I was driving home with tears streaming down my face as I listened to music...I was reminded that HE will never let go.

And I found comfort there.

Camryn has her first round of radiation tomorrow at 6:00am...yes, bright and early. Please be praying for Camryn...this is a whole new step for her. We are nervous just not knowing what to expect, but we trust...

That He will never let go...

good - night

Lots of thoughts...lots of tears...

Had a hard time saying "good - night" to Camryn and Wyatt...hard time imagining that it will be weeks until I get to say those words to both of them together. Over the next weeks it will be in person to one and on the phone to the other...and always on the phone with Jason.

Just having a hard time with the simple words...

Good - night

the glory of it all...

Ever had those seasons when an album, song, lyric just settles in your mind and heart and just seems to fit? Well, this season in my life it's been David Crowder Band's album Remedy. I've listened to it over and over...and each song evokes something different.

Today as I was driving home from the grocery store it was this one...

At the start
He was there
He was there
In the end
He'll be there
He'll be there
And after all
Our hands have wrought
He forgives

Oh, the glory of it all
Is He came here
For the rescue of us all
That we may live
For the glory of it all
Oh, the glory of it all

All is lost
Find Him there
Find Him there
After night
Dawn is there
Dawn is there
And after all
Falls apart
He repairs
He repairs

Oh, He is here
With redemption from the fall
That we may live
For the glory of it all
Oh, the glory of it all
After night Comes a light
Dawn is here
Dawn is here
It's a new day, a new day
Oh, everything will change
Things will never be the same
We will never be the same

Oh, everything will change
Things will never be the same
We will never be same

Today I got a surprise...My friend T delivered the Middle School yearbook and it is dedicated to my family, but more specifically Camryn...



Tears flowed as I looked at the page, yellow and pink (Cam's favorite colors)...pictures of Camryn from her first battle...pictures of Camryn during her two and half years post-transplant...pictures of Camryn fighting for the second time. And that's when I saw it a quote from a letter I wrote to my students when I left in February...

"This life is full of hurt and pain and if I could, I would save you from it all, as I wish I could Camryn. But one thing I do know is that the Lord will get the glory...He will win!"

I believed this in February and I believe it now three months later.

That the Lord will get the glory...for there is glory in all of it, because He is there. He is there...you know the comfort that comes from that statement?

These next weeks are daunting...there is a lot to consider, there is a lot to fear, there is a lot to anticipate, there is a lot there. But, HE is there too...

And that makes all the difference.

blessings...

What started out as a very tense beginning of the week, waiting for the contract to come through between the insurance and hospital has turned out to be such a blessing...we've really enjoyed this week.

Having this week has really taken the "edge" off of going into transplant...the anticipation has lessened and we are just ready to get it all started as opposed to being anxious about it all. Camryn is ready to go too...she's ready to get this process underway to get her better. Really that's all she wants is to be better...she's tired of being sick. And really I don't blame her, she's tired and she just wants to get started. Funny, how we were so anxious about Camryn being okay with going back into the hospital and she is more than okay...she is ready.

We've been able to enjoy some family time...and that has been a complete blessing. Jason has been off this week so we've been able to get some odds and ends done and just enjoy being together. It has been wonderful.

Honestly, we've caught our breath...we've let it all catch up with us and we're okay. Transplant will not be easy, there will be hard days and good days...it will be long; but really we want Camryn better so if this is what it takes than so be it. There really is no use fighting it anymore...this is the path we have in front of us and to be able to see that is a blessing.

Last night we were able to celebrate our nephew Jackson's birthday with him, previously we didn't think it would work out as we were most likely going to be in the hospital; but we were able to and it was wonderful. Camryn and Wyatt got to hang out with their cousins who mean so much to them and it was priceless to see them just enjoy the moment. Then after dinner and cupcakes we all headed up to the Big Village to see James perform in the kindergarten Spring Sing. We hadn't told Camryn too much about it as we didn't know if she'd be able to go...but being delayed made that possible and she LOVED every second of it.

Yes, we were delayed...but the blessings came nonetheless.

Today we headed down to clinic just to touch base and make sure everything is lined up for Camryn to be admitted on Monday. We were able to see Dr.M and that was nice, we had not seen him since Camryn's fish test with her 1.3% results so it was encouraging to hear Dr.M's perspective on things. As he said, "Camryn is at the best possible situation going into transplant. She has a very strong remission."...Praise the Lord! Dr.M went on to explain that 1.3% means that there were only 4 leukemia cells in 300 cells...AWESOME! Dr.M was very encouraging and was excited to get the process started for Camryn as well...we all are.

As we were getting ready to leave Dr.M asked if we could pray for Camryn...amazing! As we sat in a little exam room at UCLA I was teary eyed, thanking the Lord for the many people He has used throughout this journey. We are so incredibly thankful...

Driving home Jason and I were talking about the moments when we can clearly see the Lord guiding us...clearly see Him navigating the steps ahead, opening doors, closing others. I can still remember the day at Cedars when it had been determined that Camryn would need a transplant and discussing the options of Children's Hospital or UCLA...the Lord made it clear that UCLA was His plan for Camryn. As I talked with Dr.K and she mentioned Kristen, Dr.M, the fellows and such I just knew...UCLA was the place for Camryn.

And it still is today...

Because as we were at clinic today and Camryn was chatting with her "friends" (her nurses) they were telling her that they would be coming to visit her in the hospital, that they would see her...and that means the world to her.

There are many blessings...many. And honestly, sometimes we fail to see them...we are looking at the right here, right now and we miss the big picture. The many things the Lord is moving and doing that matters minutes, hours, days, weeks, months, years from now...

As one of my favorite authors writes...

God knows everything about everything and everyone. His eyes race back and forth across the cosmos faster than we can scan the words on this page. There is not a bird flying through the air or perched on a brach that escapes His field of vision. He could start with Adam and name every man, woman and child who has ever lived, descriving every deatil about each one. To Him, pitch darkness and midday are on and the same. Nothing is hidden from Him. He wrestles with no mysteries. he doesn't need to wait for a polygraph machine to decipher the truth. He sees clearly, and comprehends all He sees. He's never known what it is to have a teacher, a role model, an advisor, a therapist, a loan officer, an adjuster, a doctor, or a mother.

God's rule and reign are unrivaled in history and eternity. He sits on an everlasting throne. His Kingdom has no end. Little gods abound, but He alone made the heavens and the earth. God has never feared a power struggle or a hostile takeover. He doesn't have to watch His back. He has no equal. No peer. No competition.

~ Louie Giglio

Those are the blessings...God is big and yet He is mindful of us and He knows all there is to know about us.

Perhaps that's the greatest blessing of all...

monday it is...

Today everything came through with insurance so we are good to go...although Camryn has a little cold and so the doctors have decided to just wait until Monday to give her a chance to be done with the cold, before all the meds start.

So the plan is for us to go to clinic on Friday for her doctors to see her and just touch base before Monday. Then on Monday we'll head down in the afternoon to get settled and then Tuesday radiation will start for four days and then chemotherapy for four days, a day off and then transplant on June 4th.

A week later than we had thought, but these few days at home have been very nice...it I'm being honest. It's been wonderful to just be a family of four...to enjoy sleep in mornings, running errands and just time together. So what is a delay has certainly been a blessing for us.

Now we know for certain that Monday is the day...

Thank you for your continued thoughts and prayers. We are thoroughly blessed by the comments and emails that are so encouraging.

Thank you...

delayed

**Update: We heard from Camryn's doctors and it looks like she'll either be admitted this Thursday and start chemotherapy on Friday or be admitted next Monday with radiation first. If she is admitted on Thursday than her transplant will be on Friday, May 29th. If she is admitted next Monday than transplant will be on Thursday, June 4th. We will find out tomorrow afternoon the final plan.**

Today was supposed to be the day...the day of admission to the hospital...the day our lives would be changed for likely 8 weeks, and now we're

Delayed...

Looks like there is a hitch with insurance and such, nothing major at all...everything will work out fine. But, with the little hitch comes a changed in scheduling as the process of radiation, chemotherapy and transplant is pretty much set...

So it might be an admission later this week or we wait another week for admission next Monday...either way it's not really our call.

I'd like to be frustrated...I'd like to beat my fists at the sky...but, I can't. Because inasmuch as I would like to a peace came...

Not a day sooner or later than what the Lord wants

As I was telling Jason the change I said, "the Lord knows, the timing is His." Honestly, those were not my words...my words would have been frustration, tears, annoyance and yet He met me today...

Trust me...I hold everything, everything in my hands.

Yes, even insurance companies and university hospitals...

So it really doesn't matter in the grand scheme of things if it is today, tomorrow, two days from now or another week...

Delays don't bother Him...after all He's got all the time in the world.

making the most

I really don't know how to start this post...there are a million different things I want to say and yet so much I just can't quite put into words. I would love to say that things are easy for us right now, I would love to be able to say that the tears have not come, but simply that's not true. The tears have come...and I except them to keep coming the next few days.

There have been a lot of moments when I think "this is the last time for awhile...", it's hard to know that your life will change for most likely 8 weeks. Today Jason and I talked through the first couple week's schedule...working out who will be with Camryn, who will be with Wyatt. As we were talking tears just fell...there are no words to express the thoughts that overwhelm my heart. Trying to balance, juggle, maintain...our lives as best we can, it's just hard.

And yet we are trying to make the most...the most of the days we have, knowing that our lives will change for the next 8 weeks and truthfully even longer.

Yesterday me, my parents and the kids headed to Disneyland for the day to celebrate my mom's birthday...we had a very fun day. Really I knew that this would be the last time Camryn and Wyatt would enjoy Disneyland together for a long while, so I wanted the day to be really special for them. Jason and I decided to surprise Camryn with an appointment at the Bippity Boppity Boo Boutique, where she got to become Sleeping Beauty. Camryn was so excited, she enjoyed every minute. Wyatt wanted something CARS...so we headed to the store and he found a Rookie that was just to his liking. They had such a special day...













One of the highlights of the day was on our way out of the park I found our nephews Blake & Ethan's brick...tears came as I looked at their precious names and smiled. These two little boys mean so much to us, they taught us much while we held them here and they hold hope for us...hope for heaven.





Making the most of the days, knowing that our family time is limited...we walked today with our family for our 5 miracles...Riley.Mia.Juliana.Blake.Ethan. We walked for premature babies...for babies to have their 9 months...we hope, we walk, step by step...

The Four Mikels


Mia.Riley.Juliana


Wyatt & Dede


The Mikels Gang


Trying to pose a picture...


Cam & Ry...10.20.06 miracle girls


Wy & Ry...the best of friends


Quite a Trio


As you can tell we've had two good days and yet in the midst it's hard to ignore the realities of Monday. My heart is heavy and it aches to know that we are doing this again...can't really ignore it any longer.

Tonight we took Camryn to Target to get a few things to make her feel good or as good as one can feel about going to the hospital. Camryn picked out a pink suitcase to carry her stuff and all the snacks one could imagine...a coloring book and other odds and ends. It was fun to see her pick out things and yet so heartbreaking to know that she will have to endure a hell unlike any other. The balance is hard being strong for Camryn so she isn't scared and just wanting to scream that all of this is overwhelming.

When we got home she wanted to pack her stuff and we did a little...tomorrow we'll finish up. Jason and I want Camryn to feel as comfortable as possible while away from home...and yes, Wyatt got a few things too. Because it may not be entirely obvious Wyatt is going to have quite a challenge over the next weeks as well. We all will.

As we tucked Camryn in...she prayed something like this (forgive my paraphrase)

Dear Jesus,
Thank you for my day. Please help me feel better and have a good day tomorrow. Thank you for the blessings and help me sleep. Thank you for my family.
Amen

So simple...so sweet...so perfect.

As we kissed her goodnight she said, "We'll always be together...you and me and Daddy and Wyatt....always."

And that is making the most...

Believing even in the midst of the circumstances...

Believe.

quick update...

Spoke with Camryn's nurse practitioner today and the cardiologist team and the hemoc team determined that it was not necessary to remove the blood clot near Camryn's line. Therefore, they recommended that she start Lovenox shots once a day when she is admitted on Monday.

So, that's where we are...enjoying our days together and trying to find the peace only HE can bring.

real proud

It's all becoming more real...hospitalization, radiation, chemotherapy, surgery, transplant...all of it.

Today was the clinic appointment that I had been dreading...Wyatt's pre-donor appointment. Wyatt's never had any real health issues, sure he's had his immunizations, but he doesn't frequent the doctor; so we were a bit nervous to see how Wyatt would do with everything. On the schedule for Wyatt today was an extensive blood draw, chest x-ray and ekg...all things he has never done before.

Wyatt did great with the blood draw, but we lucked out and had Nurse Charlotte do it for us...I know I've said it before, but no one does lab draws like her, she's the best! Nurse Charlotte made the comment that she thought Wyatt might be a fighter so Jason held him tight and Dionne was brought in to hold his arms and legs. And you know what...he was incredible. Wyatt watched the whole thing and only said, "Ouch"...and then watched his blood draw and commented that it was red. Yes, he was incredible...reminded us a lot of another incredible two-year-old that we know very well.

The chest x-ray was going to be a challenge at least that's what Jason and I thought...again Wyatt proved us wrong. He bravely watched Camryn get her chest x-ray and he did everything he was supposed to. Sat still, turned, raised his arms...everything. Again reminded us of that same two-year-old...

For the EKG Wyatt had fallen asleep on Daddy's shoulder as the wait was long, very long...so he was asleep for the most part, but when he woke up he laid still and did exactly what he was supposed to and you know what it was a beautiful EKG...normal!

To say we are proud of our little guy would be an understatement...he did everything he needed to and never once fought it...took it all in stride and was amazing. Wyatt was so strong, brave and amazing...honestly, he just left me speechless. The doctors and nurses were so happy to meet Wyatt and were very thrilled to see just how well he does things...I'm sure he reminded them of a little girl they met when she was two-years-old.

Today Wyatt reminded us of his sister in so many ways...

Camryn had a pretty uneventful day at clinic...no lab draw for her as she had extensive labs last Friday and they looked great. All Camryn needed was a chest x-ray, which she did like a pro and it looked really good. Well, I'm not a radiologists, but from my view it was good.

As we were at clinic Jason and I signed various consent forms for both Wyatt's surgery and Camryn's transplant...we heard all the pros/cons of treatment and the plan. It was a lot to take in as it was very real...to hear things again I flashed back to the day we first met Dr.M and talked with he and Kristen...yes, this is all becoming so real.

As we finished up signing the papers Dr.A and Kristen went over some results from Camryn's ECHO from Friday. It appears that the doctors see a shadow which is a blood clot near her heart...it is not new as the doctors went back and looked at her ECHO from February and it was there then. The clot looks to be near her line and so they explained some different options of treatment and that they were waiting to hear from the cardiologist what his opinion was. As we were there at clinic finishing up other things we were told that the cardiologist wanted another ECHO more focused on the clot itself...so Camryn and I headed to the hospital and the Ped. ECHO Lab for an ECHO. Camryn did great and I sat and watched as the cardiologist and the tech looked again and again at the clot to determine where it is, how big it is, etc. The cardiology team was meeting today to determine their recommendation of treatment and the hemoc team was meeting today to determine their recommendation and we wait to hear the final decision.

The clot is not serious at this point, it is more about watching it and dealing with it so that it does not become a problem. So, I'll update when we know more.

All in all we are really proud of our little ones today, they did great! We cannot believe that we are days away from being admitted and starting this stage of the journey again. It's hard.

Although we know that none of this is a surprise to the Lord, today as we sat dealing with various tests and such I just kept holding to the promises that HE is walking with us...HE will never leave us or forsake us. HE loves us...

Thank you for your continued prayers for Camryn...you might have noticed that we now have a button for our blog...thank you Auntie dede for creating that for Camryn. We will continue to post and keep people updated via our blog as we journey through our days in the hospital...thank you for walking with us.

Thank you...

explaining

Last night as Camryn and I were tidying up her room while Daddy had gone to get us some dinner we had a little chat. It went something like this...

Me: Cam, Auntie Donna and Makenna are going to come down to see you. Makenna wants to see you.
Camryn: Why? Where is Makenna going?
Me: Well, sweetie remember how you have to get some more of Wyatt's juice?
Camryn: Yes, they are going to take Wyatt's juice and give it to me through my line.
Me: Yes that's right. Well, you have to go into the hospital to get it. You'll have to stay there for awhile.
Camryn: My new hospital?
Me: Yes. Mommy and Daddy will stay with you and you'll be okay. You'll just have to be there while your doctors give you medicine and then Wyatt's juice.
Camryn: Who's going to visit me?

We talked through her list of people she wanted to see her while she is at the hospital. We talked through the issue that she will have the same doctors, nurses and such. I answered her questions the best I could...

I was praying through the entire conversation as I know it's going to hurt her to leave home and be in the hospital for maybe 8 weeks.

When Jason got home she boldly said..."Daddy I have to go to the hospital again, but I'll be okay. You and Mommy will be there and my Grandmas and Papas."

No tears...No fight...simply Camryn just took it in stride.

Please continue to pray for us throughout this week. I won't lie it's a struggle for me to just take it day to day, moment by moment. I find that I am clinging to the minutes, hours and days so tightly. I do not know what hospital life really holds for us and the balancing act of the four of us will be difficult.

There is a lot more explaining to do with Camryn throughout the next weeks, but I know that HE will meet us. The Lord always does...maybe not in the ways I expect Him to, but He meets us nonetheless.

Always...meeting us
Always...holding us
Always...carrying us

Always.

richly blessed

My thoughts today are drawn to the women in my life who have walked the journey of motherhood in various ways...

Thankful for the gift of love they have given me and my children and the model they have been to me throughout my own journey of motherhood.

I am immensely thankful for the journey of motherhood...the ups the downs, the joys the sorrows, the days of ease and the days of hardship. All of it, for it's in the journey that we learn what love is...

I am thankful for my mom...I am thankful for my mother-in-law...My sister who has always been my second mom...My aunts who helped watch me when I was young and who left imprints on my life...My grandmothers, one who I loved here on earth and I miss so incredibly much even twenty one years after saying good bye, and the other who I never met, but have loved for all that she gave to my mother who in turn gave to me...My sister-in-laws...My friends...

My heart was very overwhelmed today realizing that we have one week until Camryn is admitted into the hospital and our family of four will begin to juggle life. And yet as I watched my children today I am thankful for each of them...



My Camryn Lee...my oldest, never in a million years did I comprehend that my heart could be as full as it is with her. She means the world to me...and I honestly am so proud and grateful that she is my daughter.

My Second...today my heart was drawn to the little one I never met and so incredibly thankful for the 12 weeks I got to carry them with me. Holding on and believing for the day I'll hold them for a lot longer.



My Wyatt Jason...my youngest, oh how my heart smiles with him. What he gives me with his love and smile I count myself most richly blessed by my Wy Man. What a blessing he is in my life...a gift.



They make the journey worthwhile...simply I am blessed and I could not ask for more.

whew...one long day.

Looking at Camryn's schedule today on paper would make you tired...actually doing it, well it was exhausting.

Camryn started the day with a dentist appointment and did great. Dr.S was very pleased with how her teeth looked and encouraged her to keep brushing and taking care of them. Camryn was proud to show Dr.S her missing tooth...he smiled and encouraged her that she was doing well. No cavities...no problems, Camryn did super!

We headed home with some play time with Wyatt as our day was very full. Camryn and Wyatt played and enjoyed their morning together...we went outside and played for awhile which was nice. We enjoyed our time together. Our friends Cassie and Carson came over with lunch and it was so nice to have their company...thanks for visiting!

Wyatt went to Grandma Mikels to hang out while Camryn and I headed to clinic and the other appointments. We hit some traffic and realized that going in the afternoon isn't nearly as easy as the mornings.

We got upstairs to the procedure area for Cam's extensive blood draw and let me say, I've never seen a lab sheet more filled out. Wow, they weren't kidding when they said extensive blood work. Like a pro Camryn did what she needed to and we finished up. Of course Camryn was glad to see Allison and Nurse Charlotte for a bit...always a treat for her.

Next on the list was the auditory exam...wow, this was much more involved than I imagined. Camryn did great and was complimented for being a well-behaved, polite, bright little girl. She listened and followed directions well...all in all it went well and the doctor was pleased. I did learn today that some chemotherapy and radiation can cause high frequency hearing loss...so we'll be following up with the auditory clinic after transplant. Thankful all is well today.

We were running late and I was praying we would make it to the Heart Clinic for Camryn's Echo in time...we got to the desk and thankfully, it was okay. The sweetest lady did Camryn's Echo and it went super. Camryn did great laying there still although she was getting very tired, but who could blame her?

Thankfully she made it through...Wyatt enjoyed his day. Wyatt has a blast with his Grandma and Riley; so thankful that he had a great day. Hard to juggle all of it, but thankful that today is over.

Hopeful for a restful weekend!

"official results"

Get ready to be amazed...

Camryn's official pathology report (aka fish test) shows her leukemia cell percentage at...

1.3%

Amazing isn't it? We think so.

From 32% to 16% to 1.3%...guess that arsenic trioxide stuff really works!

We are just praising the Lord for His immense care of Camryn throughout her two rounds of arsenic as it is pretty intense medicine. We are thankful her heart held up well and she showed no other side-effects...immensely thankful!

Tomorrow now is officially a very busy, full day. Camryn and I will head to the dentist in the morning for an exam, as she needs a dentist to sign off before transplant. Then in the afternoon we'll head to clinic for an extensive blood work up before transplant, then upstairs for an auditory screening as Camryn's hearing has to be cleared before transplant. And then we'll wrap up the day with an Echo as this needs to be done before transplant as well. Whew...it will be a long day.

Then we'll enjoy our weekend!

Thank you for praying...thank you for the sweet encouraging comments praising the Lord for His amazing work.

Sometimes words fail me...but, we are continually praising Him for his continued presence in Camryn's care from the littlest of things to the biggest of things.

And yes 1.3% is a BIG thing...

Thank you Lord...thank you.

amazed...

Today as we waited to hear the news from Camryn's doctors as to whether she would be admitted in May or June for transplant, I was praying that whatever outcome would be best for Camryn would come. That if she needed another round of arsenic then that was okay...if she needed that to have better odds so to speak then that was okay. After all, we've learned to take whatever comes day by day.

Well...

Camryn's doctors called and it looks like her leukemia cells percentage is at 1% or lower! Can I say AMAZING? We were hoping for somewhere around 5%...so to hear that it could possibly be at 1% is just awesome. Camryn's doctor called and asked Jason if he was sitting down...because the news was so good!

These results are not official as the pathology reports are not completely ready, we should find out those reports tomorrow. But, on looking and talking with the pathologists the doctors feel the news is really good.

We are excited...in a way that is not all that exciting. This means that Camryn will be admitted on Monday, May 18th; start her radiation treatment on May 19th and then transplant would be May 28th. It's hard to be excited, but we are very thankful to get the process started to get Camryn well.

Honestly, I really don't think we ever thought we'd hear that her percentages were that low...we really had prepared ourselves for hearing that Camryn would need one more round of arsenic. Now, we shift gears...we've got a week and a half.

There are a long list of things running through my mind now...we have a date, a definite path, we have a plan. So we begin to prepare...

Today as I was waiting and trying not to let my anxious thoughts to get the best of me I cleaned out Wyatt's dresser and used my label maker to label where his clothes are and such...after that I hit Camryn's closet. Yes, I was a mother possessed. I had to work out my anxiety or it just might have gotten me. Luckily our niece Riley came over to play with Camryn & Wyatt so that was also a very nice distraction.

My heart was heavy just thinking of what's to come, but you know what...there is no way to anticipate all of it, there is too much. We'll take it one day at a time...

For now we go on Friday for some preliminary tests for transplant and then next Tuesday Wyatt will come to clinic with Camryn to do his part.

Please be praying for our family as we begin to work out schedules and plans for the next few months. I won't lie it will not be easy for us to juggle Camryn's care and Wyatt's care, but the Lord knows...He carries Camryn through and He carries Wyatt through. Please pray that as we enjoy our days at home we cherish them...we hold on to the time we have and not be overwhelmed by emotions.

Thank you for walking this journey with us...

One of my prayers throughout Camryn's first journey with leukemia was that the Lord would leave us amazed at who He is...that there would be no question as to who gets the glory. Well, today...

He left us amazed with percentages that can only come from Him through unlikely medicines...

All Glory To Him.

quick update...

Thank you for the many who left comments, emailed and text me today...your thoughts and prayers are appreciated greatly. Camryn did great with her aspiration and biopsy. We had a long day of clinic and then procedure, but all in all it went well.

We wait until tomorrow for results, but it seems like the doctors are leaning for a May admitting and transplant. So we will see what tomorrow holds...I promise to update!

But, I thought I'd leave you with the comforting words of Dr. Joe today before Camryn's aspiration..."We're gonna get it this time...She did so well last time, she'll do great again...We're gonna get it this time."

Praying we do!

a whole new step

Today Jason and I were about as proud of Camryn as we have ever been...she left us incredibly proud and amazed.

We met with Camryn's new radiation team...yes, this is a whole new step for us. Radiation was never part of Camryn's protocol before, but now it is. I won't lie I was anxious about everything...just starting a new phase and trying to keep my emotions in check so as to not scare Camryn. I learned long ago that Camryn responds off of mine and Jason's emotions; so we both tried to think positive and assure Camryn.

We arrived at the radiology clinic and checked in at that point they asked if Camryn was NPO (basically if she'd eaten anything) I said no. I racked my brain to try to remember if when they called to confirm they had told me to keep her from eating...they had not so that didn't start the morning off to well. I did not realize that Camryn would have to be sedated for the consult...I was nervous. After we talked with the doctors my nervousness was lessened as they thought maybe at 5 Camryn could lay absolutely still for the CT scan they needed in order to prepare her radiation dosages.

The doctors talked about the immediate side effects...vomiting, nausea, fatigue. Really the normal list that comes from chemotherapy and such...this wasn't too overwhelming. The doctors assured us that Camryn could have anti-nausea medicine in order to help her through. They discussed the procedures for radiation as an in-patient as Camryn will not start her radiation until she is admitted to prepare for her transplant. The purpose of the radiation is to kill any remaining leukemia cells and also to prepare Camryn's marrow to receive Wyatt's marrow. All of this makes sense to us clearly...we get it...

But, that doesn't take a way the hurts of the long-term effects. It's in the long-term effects that I find myself in tears...considering outcomes and explanations that will given one day to Camryn just absolutely breaks my heart. As a mother I feel so completely helpless...I want to save her from potential heartache and I can't. So today as the doctors discussed long-term effects with us my eyes filled with tears...but, I had to do what I've done so many times before. Trust. Simply trust that this path is not a surprise, nor is it new to the Lord...He is carrying Camryn as He is carrying us...He is holding us through and He will be there 5, 10, 15, 20 years from now when we have to explain to our precious baby girl why...

After the talking and listening we went to the CT scan...we explained to Camryn that if she could lay still she would not have to have the medicine that puts her to sleep. Camryn clearly did not want to be put to sleep so she quite confidently says, "I can do it."

And do it she did...

Camryn laid perfectly still for her CT scan and did not once seem afraid. She did everything the doctors and techs asked of her...Jason and I stood by watching amazed at this little girl...amazed at who she has become through all of this.

When we began this journey Camryn was not even two yet...and now she is five. She understands so much more...in fact today as the doctors were talking she crawled up in my lap, covered her face with her blanket and just shook in fear. She was scared...but her fears do not immobilize her. Camryn was going to do what she needed too, even if she was scared. Camryn has an indescribable trust...and in fact we walked away and I couldn't help but be amazed at the grace her Heavenly Father lavished on her today.

As we got off the elevator there were our friends J and D and we all chatted as we walked out...as we were walking I heard a lady very loudly say, "Look at that little boy...isn't it sad he has cancer." Mine and J's eyes met and we smiled...yes it is sad, but do you have to make a scene? And yet the ironic thing is that the little girl running in front of D chatting up a storm...yes, she has cancer too.

No one would ever guess...no one would ever know...

But we do, we know that there is a whole new step awaiting Camryn and while it inches ever closer we wait...

Tomorrow will be a full day with a clinic visit and aspiration...please be praying for tomorrow. Camryn will be sedated which is always a bit nerve-racking for us, but we trust...

Trust that even though this is a whole new step it's not new to our Father...

He knows, He cares, He loves, He holds...He is. He is everything we need Him to be...

Trusting that tomorrow...and the days after.

trusting...

There is so much flooding my mind from this weekend...had some really rough moments and some really good moments. I realized that truly some day are easier than others...and I would like to be able to choose which days are easy, but I don't get to. I wish I did...

Saturday morning as the kids were snuggled up on a Saturday morning with Jason and I in bed Camryn looks at me and says, "Mommy I love you for taking me to the doctor. You're my best friend."

As I sat there and just watched Camryn and Wyatt I realized that I am incredibly blessed...yes, even now. I know sometimes I feel like I am so weary and that the next steps will be too difficult that we won't be able to survive them. I know sometimes wonder why? I know that is a needless question as there is no clear answers...but, I wonder nonetheless.

Honestly, walking this road again is hard. Yes, there are pros and cons for knowing what's coming. On one hand knowing makes it a little easier to understand and anticipate. On the other hand knowing makes it hard, very hard. We know what's coming ahead...we know there will be long days, incredibly long days.

And yet I know that my Lord loves me deeply, holds me tightly and listens to my aching heart. He will be with us every step of the way...He will lavish His grace upon us. He will hold us in the midst of the storm as it is a storm...there is an end. Even if the end feels so very far away.

Tomorrow we meet with the radiation doctors...please pray. Both mine and Jason's hearts are heavy as we step into a new part of this journey.

Knowing that we are held...trusting and holding tight to that.

it's official...

Camryn has lost her first tooth!

Jason and I had decided that we would really work on getting her tooth out this weekend...lots of pep talks, lots.

This morning Camryn's tooth was really loose and I was trying to encourage her to wiggle it. True to Camryn's form she says, "Mommy, I can't loose my tooth yet, I don't have a tooth fairy pillow." Do you know it's not easy to come by a tooth fairy pillow on a moment's notice? Knowing that my mom saves everything and I mean everything I knew she'd have my tooth fairy pillow as it was given to me by my Grammy. So, we called Grandma and Grandma did what Grandmas do best...saved the day.

My mom brought my little red tooth fairy pillow over today and Camryn was beyond thrilled...step one accomplished, now for her tooth.

Well, tonight she was scared...in fact as I was talking with Camryn about how brave she is she said through tears, "but, Mommy I've never done this before." Isn't that amazing...this little girl has endured more than any 5 year old I know and yet she is still fragile and timid. She is still just 5.

Jason being the most amazing Daddy in the world took her in the bathroom and they had some cute Daddy and his little girl time. He was the sweetest, encouraging her to wiggle her tooth and be brave. All of the sudden they both are yelling for me and Wyatt to come see...and there Camryn was with a little toothless grin.

We all cheered and she got the biggest smile on her face. A smile that we cherish...

So, tonight while you are sleeping the tooth fairy will visit our house and make a little girl a believer in all those fairy tales of childhood. And I'm thankful she's here to live those dreams...grateful for another day.