lucky day +13

Today is Day +13 and you know it was a lucky or rather I should say a blessed day. Wyatt and I headed down to the hospital bright and early as Wyatt decided not to sleep in today...so we headed out to see Camryn and Daddy. Called Jason on the way and he said that Dr.C had already been in and was hopeful that Camryn's counts came up again...her labs were not back as of that moment.

When I got there Jason said that our Nurse Chelsea had said that Camryn's hemoglobin and hematocrit had both risen slightly on their own...awesome! But, her white count labs were not back yet...

We started chatting with Camryn and Daddy...Wyatt opened a gift someone had sent for him and they started playing. Chelsea came walking through the door and said, "I have a great lab sheet for you today!" Camryn's white count is at .45 and she has the first glimmer of an ANC at 100! Everyone was so excited today...the doctors nurses everyone made a very big deal out of reach a 100 which made Camryn feel good. I think for the first time she started to see that she is getting better. Plus, she knows when she reaches 500 so can schedule a private playtime session in the play room...so that's an incentive for sure!

Camryn's also holding her transfusions well, which is a very good sign...you have to be able to hold transfusions before you can go home. We aren't there yet, but the fact that she is doing that now is awesome! We are so thankful that her counts continue to hold strong. Go Wy's marrow Go!!

Camryn and Wyatt enjoyed the day together doing puzzles, playing cars, talking, taking pictures...yes, it was quite a day. We were very thankful that Wyatt is able to come down, every time he comes it encouraging Camryn so much. He truly is her best medicine in more ways than one.

The other highlight of the day? Eating...Camryn hasn't eaten in a long time, her stomach after chemo and radiation couldn't take it and then her throat pain set in. But today she took her first bites of cereal...and again it was a much celebrated accomplishment. Have I told you how much I love the staff at UCLA? They truly care and know what the transplant kids need...and positive reinforcement is the biggest thing. Now, Cam's not eating too much...but it's a start and that's all we ask. Baby steps...

Tonight Camryn had to have a CT scan to check for any sinus infections, she has a runny nose so the infectious disease doctors want to cover all the options. Jason said that all went well and Camryn did what she needed to...so that is done! All that was left tonight was her Lovenox shot and then hopefully bed. Camryn's had a full day and needs a good night's sleep.

Wyatt's sleeping for the night...if you think of it would you please say a prayer for our lil guy. He is struggling...the last few days lots of tears, melt-downs and such...he just wants his family here at home. And I don't blame him...it's a lot for his two-year-old understanding. We just love our Wy so and we are thankful for him in so many ways...I am hopeful that Camryn's time in the hospital is on the shorter end and soon we'll be a family of four under one roof. Until then we continue to trust Wyatt to the Lord as much as we trust Camryn to Him.

A level of exhaustion has poured over Jason and me...we are tired, it is emotionally and physically exhausting to walk this path. We are trying our best to find rest and renewal...but it's hard. The weight of all of this seems heavier than we can bear at times...but, we continue to get up each morning, hopeful for good news. And we trust the journeys of the day to the Lord, but there are days when I think we are both just struggling not to lose it altogether. And in those moments the Lord quietly reminds my heart and mind of things that are so right and true...He speaks to my heart in the quiet moments and sometimes it is His companionship that gets me through those dark, hard times.

Just like today...I was listening to my ipod on the way home and one of my favorite songs comes on. Honestly, it was the that got my through Cam's first transplant...so I share it with you, hopeful that it speaks to your heart. Because I know that we are not the only ones walking a difficult path...countless people are and to each of you I hope that the Lord meets you wherever you are...

Strength will rise as we wait upon the Lord
We will wait upon the Lord
We will wait upon the Lord

Our God, You reign forever
Our hope, our Strong Deliverer
You are the everlasting God
The everlasting God
You do not faint
You won't grow weary

Our God, You reign forever
Our hope, our Strong Deliverer
You are the everlasting God
The everlasting God
You do not faint
You won't grow weary

You're the defender of the weak
You comfort those in need
You lift us up on wings like eagles

day +12...being last and boring is good

In the hospital world that we are living in these days being last and boring is good...let me explain.

When doctors round the usual order is from greatest need to least need...meaning the children with the greatest need for explanations, changes in meds or in critical situations see the doctors first. Well, we've been last this week...the doctors are taking care of pressing needs...and right now nothing is really changing. This is where boring comes in. We are boring this week...no med changes, nothing new to add...just waiting.

Today we saw another increase in numbers which is awesome, .34...slow and steady! Camryn is doing well today, she's been off her pain meds and hasn't needed any as of yet. Which is a very good sign! She also is remaining fever free...which is wonderful. Camryn does have a clear runny nose so the doctors ordered a nasal wash today...yeah, that wasn't so fun. Camryn hated that, but thankfully it didn't take too long. We will wait 24 to 48 hours to see if anything shows up. So really medically speaking it was a slow, boring day.

Camryn enjoyed just hanging out today with me and Daddy...it was a nice day. Nurse Charlotte came to visit and as always Camryn enjoys seeing her...they've got quite a bond. It is very special, I love it! Camryn is very excited for tomorrow as Wyatt is coming to visit! Actually they both are thrilled!

Wyatt enjoys getting to go visit Camryn and we are so thankful he can visit and keep her company. Wyatt's been doing well too...he is enjoying some good time with his grandparents and from all reports is just the sweetest boy ever. Wyatt continues to roll with the punches and does well with his ever-changing schedule...wish it were different for him, but we are thankful he is doing so well. Hopefully not too much longer.

We are thankful...there are rough moments though, moments when the tears fall. Moments when I'm not sure we can take another step and we do. But, only through the strength of Him...He is holding us. Even though today as I left I cried...just weary and tired of walking away, but I know that as I walked down the hall way to the car and drove home HE carried me...

Just as He is carrying us...day by day.

"slow and steady..."

Heard this quote today from Dr.C...the doctors are liking what they are seeing in Camryn's numbers. Slow and steady...this is ideal and so far Camryn's following right along. Yesterday .13, today .22! We are now officially termed as engrafting...meaning Wyatt's marrow is setting up shop and producing new cells. Woohoo! Dr.C was very encouraged and said the less I have to say to you the better...Camryn is doing well and we'll continue to watch her counts throughout the week, and for signs of GVH. We've started to see some which is good news...it's coming naturally and we are praying that continues. For today the signs were all positive.

Camryn's doctors also officially discontinued her PCA (morphine pump)...YAY! Camryn is now off of pain meds and doing fabulous! She has not complained of pain at all, a true tribute to Wyatt's marrow producing white cells. Go Wy Go! Her rash and scratch on her nose are healing nicely as well...

All in all today was a positive day, so we'll take it!

Because we know that not all days are like this...in fact the doctors were very late rounding because they were discussing new diagnosis and treatments with a new family. Oh, how my heart aches for them...and as Jason said, "From where they are standing this is completely overwhelming and never ending." It's true...I don't know any details, but I ask you to pray for Camryn's fellow hemoc buddies as all these children are fighting and dealing with this that are simply not fair...but we know someone who is much bigger than all of that.

Today as Jason and I took a walk just to get some sunshine and enjoy the day...I looked at the blue sky that has been covered in June gloom lately and just breathed deeply. Thankful for today...I had a very rough time going to sleep last night, there are just those lonely, dark and quiet moments that everything comes...and I prayed that today, a Monday the start of our fourth week would be one of renewal...

And it was...Camryn enjoyed the day. Oh she hates it here, but she makes the best of it...she is learning to grin and bear it. I'm incredibly proud of her, Jason and I both are. There is so limit the love and admiration we feel for Camryn...she is truly a gift from the Lord.

Physically Camryn is doing well, emotionally she is struggling...I have shared bits of her struggle, but it's very difficult for her. Inasmuch as we are praying for her physically, we are also praying for her emotionally...this all takes it toll, on no one more than her. But we know that the Lord continues to protect not only her body, but also her heart.

Day +11...we start our fourth week...slow and steady and isn't it...

Slow and steady wins the race?

Fighting, Hoping, Surviving...to win!

day +10...easier?

You know I thought last week was going to be hard, but there's a gut feeling I cannot seem to shake that says this week is going to be hard too...I guess there really is no easy, easier or easiest in this war we are fighting.

Camryn and Wyatt had a very nice day together. Camryn was much more up for playing and messing around than the last time Wyatt was here, so that was fun for them. They played and teased and acted very much the sister and brother they are...it was cute. Although I will say that maneuvering her pole and lines makes it a little rough; but they do the best they can. Cam got very quiet when it came time for Daddy and Wyatt to leave...it just hurts her to not be home. To watch them walk out the door and want to go so badly and really not understand why.

You know it's almost as if Camryn is really experiencing isolation this time...when she was 2, she knew nothing different really. She got leukemia when she was 22 months old and what almost two year old really remembers life before? So for her first transplant really all she knew was hospitals and doctors...family came to visit...friends wasn't developmentally there...church nope, just play time. Camryn didn't know what she was missing...

And this time around...

She knows exactly what she is missing and it hurts her.

Tonight as I sit here waiting for her shot to come...while she is fast asleep wishing I could just tell them to forget about it, but I can't. I don't want to wake her with screaming...but, this is her life for now. This is not normal five year old life.

I think the weariness is beginning to take it's toll on all of us...the novelty of it all is wearing off. Tomorrow marks three weeks here and as much as I'd like to think we're half way there...I can't let my heart go there. Maybe once I see counts...but right now it honestly feels like the biggest, baddest, scariest hurdle is in front of us and all of us are tired.

Camryn did have a wonderful day...so I'm holding on to that while trying not to burst into tears over the last few hours. She was really tired, but fighting, forcing and trying to patiently deal with her is just emotionally draining. I finally got her to take her med/water combo and about 3 minutes later she threw it all back up...how's that for positive reinforcement? She did it...and then felt awful. As much as I just wanted to cry and grab her and run away I knew I can't and won't...this is where healing is happening even if it is ever so slow. There are some counts there .13 to be exact and that's an improvement from yesterday, so we are encouraged. We'd like to see a doubling of that tomorrow, and the next day, and the next...until we see those magic ANC numbers coming. And the magic ANC number? 500.

And all the while we wait for those numbers we watch for signs of GVH which should gradually increase as numbers increase...so today we were on alert for rashes. And that should be our first sign...there is also a strong possibility that an "engraftment fever" might come. Well, I'm praying it doesn't...Camryn has done so well thus far with fevers. Just praying...

All in all this journey while it is going *well* isn't easy and it doesn't really get easy...I told Jason last night that I think the first time through transplant I was so naive...fully believed that we would get through, kill the leukemia, be in isolation (which would be hard, but wouldn't last forever) and our lives would move on. That it would only be a bump, all be it a huge bump; but a bump in the road. Well, this time it's completely different. The word relapse hangs in the air, the air is a lot thicker and it's hard to catch a deep breath. Everything feels heavier...and it's not easier.

And it drives me to the feet of my Savior...to cry out to Him for it's only Him that can heal, restore, mend. Through my tears I find that there's not much more to say than...

Savior...

Hold us, Lead us, Mend us, Mold us...continually reveal yourself to us. Cause us to rejoice in the good and release the bad. To hold loosely the gifts of each day knowing that each day is a gift in and of itself. Never asking for more than You, for in you it is enough.

Jesus you have carried me
When I could not stand
Jesus you have carried me
It's all been part of your plan

Jesus you have carried me
It's your footprints in the sand
Jesus you have carried me
It was always in your hands

~ Jeremy Camp

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a HUGE thank you for all who donated today...there were over 50 people who came out to support our family and Camryn. My heart just smiles knowing the love being out poured for Camryn.

Thank you!

Also, quite a few of you have left comments asking where you can send things for us...if you would like email (jdcmikels@yahoo.com) me and I can get you the information. I'm sorry I haven't been the best about returning comments...my time is divided and it's hard for me to catch up! But, thank you faithful readers and even more so faithful prayer warriors!

Good - night to another day...

day +9...the week in pictures

Here's our third week in the hospital in pictures...there aren't too many as most of the week was spent with Camryn feeling pretty lousy...

But here are some highlights...

Camryn with her new haircut...she was feeling pretty horrible here, but managed a small little small. Isn't she the cutest?



This is the change of scenery for Camryn...she moves from her bed to her blue chair. Notice her IV pole...yep that is what we have to navigate to the bathroom at night. Isn't she the cutest little sleepy girl ever?



YAY...for a visit from Wyatt. Camryn was pretty knocked out from the pre-meds for her platelet and blood transfusion...but how sweet are they? Honestly, these two make my heart just smile.



Sleepy Camryn...yes, she's lost her hair now. Isn't she peaceful in the midst of the storm?



Camryn, Wyatt and Grandma working on a puzzle...this was a good day!



My favorite pics...



Yes, in the midst of all that is hospital life Camryn can still give us a smile. She is our precious girl...LOVE her so.



Camryn all mummyed up for her bath...she loves getting all wrapped up in the towels. I told her she looked like my little Eskimo...cutest ever.



How Camryn spent most of today...up in her blue chair playing on her computer. She had a very good day today...she was much more lively and talkative. Plus, the highlight? She can stick her tongue out...yes, I know not the best habit. But, for about a week her tongue hurt so bad she couldn't do it...so today that was the accomplishment.



That's our week...tomorrow Wyatt and I are heading down to spend Sunday with Camryn and Daddy...plus, people will be donating blood at our church for Camryn!

What an awesome day...thanks to everyone who is participating in giving Cam the gift of life...what a precious, priceless gift!

THANK YOU!

day +8...a family hug

The four Mikels have something we like to call a family hug...the four of us wrap our arms around each other and put our heads together and smile, laugh and enjoy family...well, today was our first family hug in a long while and it felt really good.

Wyatt came down to the hospital with Daddy today to visit with Camryn and me...boy was he a breath of fresh air for Camryn. Although Camryn wasn't much for playing at first as she was getting a blood transfusion and was pretty knocked by the benadryl; but soon enough those blue eyes perked up and her and Wyatt enjoyed the day together. They played with the flashlights, watched tv, played on the computer, played puzzles and just hung out. I would say that they had a very good day...

This morning as Dr.M and Dr.W came to visit we chatted about how well Camryn seems to be doing...Dr.M said he couldn't be more pleased with her progress and truly it's wonderful to hear. Seeing Camryn so very sick is difficult and hearing that she is making progress in the right direction is awesome. As we wait for more counts to come in we approach the next hurdle...Dr.M talked with me today about this hurdle, GVH. But right now Camryn continues to do better than well...with only one antibiotic running, while most of the time there are at least two or three by now. We are praying and hoping that we can get an absolute neutrophil count (ANC) of 500 before any fevers come...or better yet no fevers at all!

Camryn had a bit of a rash on her face and a scratch on her nose that were pretty red this week, and today they are much better...a tribute to those white cells working. Our bodies are truly amazing!

All in all Camryn is doing well...still very hard moments, but she is five enduring what no child should ever have to...so we'll cut her some slack. Camryn's hair has officially fallen out...she's got her darling little bald head. I won't lie she is very self-conscious about it...she is embarrassed, and sad. She asked me today if she looked the same when she was two...I told her I would bring her pictures tomorrow and she could check them out. Trying our best for her...when she was two she wasn't as aware of all of it, but at five she is very aware and knows that she looks different from everyone else.

Dr.A also stopped by today just for a social visit...he was very encouraged by Camryn's progress and said that we should see numbers soon as marrow comes in so much faster. I told Jason that when I got home I would check out Cam's lab sheets from her first transplant and see when we started seeing an ANC...well, it was on Day+17 when we started seeing numbers...and we are hoping to maybe see number at Day+10 or so...I guess they aren't kidding that marrow is faster, it's much faster.

We are pretty anxious to start seeing numbers and to get through the next hurdle...I think we are slightly, beginning to see that there might be light at the end of the tunnel. Oh, we are no where near going home or anything like that; but we are starting to see that the days are passing and Camryn is fighting...we'll get there.

There have been countless ways that the Lord continues to reveal Himself to us...even though Camryn is doing better the tears still come. As I was driving away today I just broke down...I'm tired, we're tired of our disconnected, disjointed life. Tired of only tucking in one child at a time, tired of talking via video chats and cell phones...just tired. And yet we are thankful for those things...thankful that we have people willing to help with Wyatt to make it possible for us to be there with Camryn. Thankful that we are able to take care of our children as best as possible...thankful for the video chats, thankful for the cell phones. I guess it's more tired...just tired.

This is a hard road, not really knowing who can identify with it all...trying to realize that you are in a different club than most...trying to be thankful for a day in the hospital while the world you knew is moving without you...realizing that isolation is here...and we will struggle to find a new normal again.

Then this quote came to mind...

There is something about keeping him (God) divine that keeps him distant, packaged, predictable. But don't do it. For heaven's sake, don't. Let him be as human as he intended to be. Let him into the mire and much of our world. For only if we let him in can he pull us out. ~ Max Lucado

And it's true...allowing the Lord to meet us, to realize that He is walking with us. That the days come when we are ready to crumble, He is there. And the days when the sky is a little bluer He is there too...

Because He loves us...and He is real.

As real as anything and everything...

Including our family hug...

day +7...a week...signs

Today marks a week since transplant...amazing. Honestly, this has been both the longest and shortest week of our lives; either way if feels good to be here...a week.

This has been a rough week, Dr. M wasn't lying when he said that this week would be rough...Camryn has been in some severe pain and just miserable. It's been extremely hard watching her suffer...and not having a clear reason why? At some point I wonder what her little mind thinks...How did I get here? Why am I sick?...and truly I don't have good answers. But, for now she is hanging in there...she is fighting things and not wanting to do things, but that's Cam. She fights and fights within herself to do what she needs to.

And yet...

As I wrote yesterday we started seeing little signs of hopefulness...and it continued today. Last night as I took Camryn to the bathroom in the middle of the night she said, "Mommy my neck isn't hurting anymore."...YAY!!!!! So, we eagerly awaited Dr.M and Dr.W this morning to see what they would say. Dr.M was so pleased to hear that she had not pushed her pain button yesterday expect once during her shot...he was hopeful. Then he asked Camryn and she confirmed that she was feeling better...and he was thrilled. They looked at Cam's mouth and confirmed that it appears to be healing...work white cells work!

So it appears that Wyatt's marrow is engrafting and sending out white cells. Amazing, miracles! It will be a few days before we see any counts on lab sheets due to the fact that the white cells are not waiting around to be counted, they are heading to her throat to provide her healing...Amazing. We are moving in a positive direction...and healing is starting to take place.

Now as Wyatt's marrow engrafts we wait for signs of graft vs. host disease, which honestly is the next hurdle. Camryn's doctors would love to see some naturally, but if not then they will alter her meds to induce some...since Camryn is a relapsed transplant they would like to see signs of Wyatt's marrow kicking Camryn's leukemia cells out...and out for good! So we are not done yet...but we've crossed another hurdle...in a race where there are a lot of them...Please keep the prayers coming. As Dr.M said...Keep Praying!!!

Our evening has been good, Camryn has been going non-stop. It's wonderful to see those blue eyes sparkle...it's wonderful to hear that laugh, see that smile. It's wonderful to see our little girl. Camryn and I did four puzzles...we enjoyed our time together...she is feeling better.

And the highlight of the night...she drank a half a cup of water! Now that may not seem big to you, but it is HUGE for Camryn...her throat was hurting so bad she couldn't get anything down and tonight a half a cup of water! She was excited so she had her nurse go get 2 of her other favorite nurses so she could share with them. Truly, the night nursing staff has been amazing with Camryn, she loves them.

Cam is fast asleep and I just watched the Lakers win...so we'll say good-night to another day and pray that we'll continue to turn the corner tomorrow.

Please keep the prayers coming...the Lord is doing amazing things.

He is good.