take me out to the ballgame...

There's a little boy in our house who loves the Dodgers...



Wyatt loves baseball...he has a Dodger schedule and frequently checks it to see if a game is on. And if a game is on he has to know who is winning, who is hitting, and all sorts of other things. He knows the Dodgers line-up by heart...in fact today when we were playing baseball he went through the batting order and instructed his sister who she was pretending to be. Of course he was Either, he favorite...all about the lefties.



These two boys love baseball...and it is hilarious to listen to them *argue* in the drive-way about how to hit the ball, how to pitch the ball, to watch the ball. Yep, I'm sure these two will have many baseball moments in their future.



We were given Dodger tickets by our friend D, many thanks! He has great seats and we had tons of fun on Fernando Venezuela night. Notice our blanket? We all got Fernando blankets...Camryn was impressed by this Fernando person. I told her that he pitched for the Dodgers when I was her age...I don't think she quite believed me. We had tons of fun eating, watching, and of course rooting for the Dodgers.



We love LA...and I love these three and our family's love of America's favorite past-time. Yep, we love Dodger baseball.

a long day...

Last Tuesday Camryn and I headed to UCLA; she had a clinic appointment and a therapy appointment. I thought I had been super smart and scheduled them for the same day...in theory that would have been a great idea. In reality it made for a very long day.

We got to clinic super early...we saw Dr.J first, we have literally watched Dr.J grow up if you will. She is a third year fellow and had the unfortunate opportunity to first meet us on the day of Camryn's relapse. Dr.J has been and will continue to be a great friend to us, we have enjoyed her presence and her love for Camryn...it is a gift. Dr.J got caught up on everything and said that Dr.M would be in to see us in a few minutes.

As we talked it was nice to again have some reassurance about how well Camryn is doing in spite of the steroids and such. Yes, Camryn is still on steroids. Her dose has not been changed as of yet...she is showing signs of some acute and chronic GVHD so the doctors want to get her numbers right where they should be.

Dr.M came in and confirmed that there would be no change in medicines this week...we are on a weekly blood draw basis now. Funny, that we really are doing well with everything, but Camryn is getting poke every week. Ironic. Dr.M said her numbers were much improved and stabilizing which was great news. He said he was so happy to see her numbers doing so well. It really is a tension to hear "she is doing really well" and yet our counter is still full of medicine.

All in all it was a good appointment...Camryn is doing well far as leukemia and cancer. Her nemesis now is that which is making her well. Ironic, but a gift.

After we got done at clinic we went to the lab and got blood drawn...Cam's a trooper and doing so well with this every week. She hates it, she fights it, but she does it. That has been her battle cry throughout this whole thing...

I don't want to, but I will.

We got done and headed up to the UCLA book store...we needed to do something to pass the time. We shopped around, got a snack, people watched, looked around UCLA a bit. So funny growing up a Trojan fan and yet so comfortable in the Bruin world. We sat and chatted a bit, read a book, called Daddy. After while she was tired so we headed back towards the hospital. We came upon some little fountains...

Cam said, "Mom remember these fountains? This is where I came when I finally got to go home...Look Mom the sign says "Garden of Peace"...these are nice fountains, I like them."

And I remembered...a frail, bald, fighting little girl who so badly just wanted to go home...

And now she is a curly hair, steroid puffy, brave little girl who so badly just wants to be well...

Some things only slightly change.

We walked to lunch and enjoyed a Mommy - Daughter date. It was such fun, but both of us were tired, weary...just something about juggling UCLA life that does that to us.

Finally we headed to therapy...it went well, but Camryn was tired. Thankfully, her therapist was super understanding and was very good to her. Cam had to have a new hand brace made for night-time so that was pretty easy. She is still making great progress in therapy and we are super pleased.

Finally it was time to head home...after a total of six hours we were home. It was a long day...

And sometimes long days aren't good for my heart. Lately I have felt completely overwhelmed, pretty much since Camryn went back on steroids. It has been a battle between head and heart. Lots of things creep in to bother me, things that on any other day wouldn't even catch my eye. But, I was tired...I am tired.

Not physically tired, but emotionally weary...there just never seems to be a moment when we can escape the realities. And sometimes I would like to.

But, this is what it is. I was thankful for Easter...the hope it brings was a welcomed refreshment for my heart and mind. Remembering and realizing that HE is alive, HE knows, and HE cares...

After a long day on Tuesday I was reminded that no matter where the journey leads that Jesus is carrying us through...

Because HE loves us.

the golf trip...

Camryn is an aspiring golfer, really she is. She has wanted to "play" golf for quite awhile now. Her daddy bought her a set of kids clubs, complete with a bag and everything...so she had all the right stuff to golf, just hadn't had the big opportunity. We are excited to let her pursue golf as it is a sport that she can physically play now, some of her muscle tone has been lost and it is difficult for her to do some things; but golf we thought it would be perfect.

Well, Jason's dad is an avid golfer, would golf everyday all day if he could...so the golf bug is big in the Mikels family. Both Jason and his brother are golfers and would love to go more than they do, but alas they had jobs that don't have such a flexible schedule. :) Anyways, for Camryn's birthday she asked for a golf day with her Grandpa...cutest thing ever.

When she opened her card from Jason's parents there it was a gift certificate for a trip to the driving range with her Grandpa and Grandma too!

We arrange the day Grandma would pick Camryn up and then they would head to the club to meet Grandpa get some lunch and then head to the driving range. Camryn was nervous, she did not know what to expect. Plus, we had to lay out her "golf" outfit the night before to make sure it was perfect. Monday came, and off she went on her golf adventure....

Cute little golfer...seriously I think she could be on the LPGA, what do you think?



Getting the lesson in how to hold the club correctly.



Taking a swing...



Grandpa was proud of how well Camryn listening and followed directions..."she did what I told her to." Good Job Cam!



I love this picture...classic golf shot, but even better her Grandpa looking on with pride. Love this...


**if you look real close the yellow balls are the ones that Camryn hit. yes, she actually hit balls and as her Daddy said, "it's a good sign that they are all straight out in front of her!"**

Now to the putting green...




She might have just sunk that putt...



More lessons from Grandpa...



The two golfers...Grandpa & Camryn



And there are no pictures of Grandma, because she was behind the camera...but, this ice cream stop at the end of the day is a Camryn & Grandma tradition. :)



Camryn had a very special day with two very special people. One of the greatest blessings in my opinion is that Camryn and Wyatt both have their grandparents close by to be with, learn from, and for their grandparents to leave a legacy in. Some of my dearest memories of childhood are with my grandparents and I am so thankful that Camryn & Wyatt are creating memories that will last forever with our parents. Truly a gift.

Plus, a little bit of the Mikels family tradition of golfing was passed down from Great-Grandpa, Grandpa, Daddy, and now Camryn.

Next up...the lefty Wyatt.

cowgirl birthday...

Howdy...Camryn turned 7 and what better way to celebrate the Lucky 7 than a cowgirl party.



We do love us a party in these parts...and it is especially great when you can borrow lots of fun cowboy stuff from your mom and sister. I have to say that it's so fun to plan the parties for the kids, it's one of my favorite things to do with my kids...plan their parties.



Here's our Mikels wild bunch...



And I was proud to remember to snap this picture of the Wilson wild bunch of cousins...often times we get pictures of the kids with their cousins their age, but the older cousins get missed. Not today...love this picture!



Here's the Wild Bunch...eatin' and enjoyin' their day. We created $ sign loot bags, which were lots of fun, thanks mom for sewing them. Camryn loved having her friends here...



The Birthday Girl and the banner...I made the banner, it took awhile; but I was pretty stinkin' proud of myself. Don't you love it when the picture in your mind turns out...that is this banner.



Woody & Jessie (a.k.a. Wy & E)...and as we say, "totally going to use that picture in your wedding video". wink, wink.



And what cowgirl party would not be complete without a cowboy named...Wyatt. To be honest always wanted to do a cowboy party for our boy named Wyatt, such a cowboy name. Maybe someday, but for today it was his big sister's day and he loved it. Well, most of it except the country "gurl" music we played...yes, he isn't a big fan of Taylor Swift, Sugarland, and Carrie Underwood. :)



We had lots of fun...we even rented hay bales, had bottled root beer, and lots of fun! Camryn said when she went to bed..."that was the best birthday ever, thanks Mom & Dad."

And that was enough for me.

seven-years-old...

How did it come to be that our sweet baby girl turned seven?!

Camryn Lee,

Sweet girl we cannot believe you are seven. It was just yesterday we were meeting a sweet bundle of joy and loving you completely. We loved you from the moment we laid eyes on you...you were precious, still are. You have encountered a life that many will never know, you have fought hard, you have battled inside yourself, you have overcome odds that quite frankly had you beat. And now...

You are in first grade and doing great. Loving learning, playing, and being creative. We are constantly amazed at your creativity, your drawing and imagination is amazing. You are amazing...simply amazing.

Even tonight when I came into your room to tuck you in I found myself just staring...staring at the miracle of you. The miracle that God has given to us...the journey we would never have chosen, yet it has made you into a strong, brave, and awesome little girl. We smile when we see your face, even when it is puffy like now...you are beautiful, simply beautiful. Your eyes smile, your big blue eyes...they have captured so many memories and moments that you carry with you. You are older and wiser beyond your years...and now you are seven.

We are proud of you...incredibly proud. There were days when we did not know if we would get this day...and yet you are here and it is never taken for granted.

We love you Camryn...we love you up to the sky, past the mountains, over the ocean, and as far as you can see...and we thank you. Thank you for teaching us what it is to love you well and carry you the best we can...thank you for being the most fabulous seven-year-old ever.

LOVE you,
Daddy & Mommy


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In other news...I could not wait to share...

We got the results of the chromosomal check on Camryn's blood. This was the test Dr.M ordered to rule out a relapse. The results showed that Camryn's blood was male showing a Y chromosome which means the cells are DONOR cells. All that to say, that Wyatt's marrow is working and healing Camryn. And the steroid set back, not a relapse, but rather a flare up of GVH...Praising the Lord!

Tears filled my eyes...imagine hearing your son's bone marrow is at work deep inside his sister. It is a gift, a miracle in our midst that we will never, ever even for a second take for granted.

And from Wyatt...that's a pretty awesome birthday gift. Oh and the Bambi figures he got Camryn were cool too. :)

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And I will post pictures soon of Camryn's birthday party...

twenty-two months...

Twenty-two months ago a little boy not even three-years-old yet was wheeled into surgery to harvest his juice for his five-year-old sister...

And now...

Wyatt is doing fabulous. He is riding his bike, playing outside every moment he can, and rooting for the Dodgers...yep, he's my boy!

Camryn is doing well. She has a bit of war raging in her thanks to her brother, but it's a good fight. And really a fight worth fighting with everything she's got.

So for twenty-two months Wyatt's gift has been fighting inside Camryn...making it's presence known through rashes, high liver numbers, dry scalp. And so the rough stuff, really is good stuff.

Signs that the gift given twenty-two months ago is still very much fighting, working, and healing.

no end in sight...

{I started this post earlier...but, it took me awhile to get through}

I had really hoped to be able to update tonight that Camryn's doctors had decided to lower her steroids, because her liver numbers had improved so dramatically; but that's not quite how the day went...

I took the day off today to be Camryn's mommy and do what I do as her mommy, take care of her. I had intentionally scheduled Camryn's therapy this morning, early as it would work well with my work schedule. But, when steroids came into the picture and the doctors wanted to see her this week, today was the day. So, I took the day off and did what mommy's do...

Camryn is on week three of therapy and doing wonderfully...she is gaining some range of motion in both arms and elbows. In fact the great accomplishment today was being able to hold out her arms straight in front of her without her elbows being bent...I know it doesn't sound fantastic, but if you could have seen the look on Camryn's face you would know just how fantastic it truly is! Camryn's therapist P took a lot of time today to work on Camryn's left arm. I was so proud of Camryn...she did everything her therapist asked of her and she continued to work really hard. After therapy she was tired...I wish I could have just taken her home, but really our day at UCLA was far from over.

We headed to the lab to get labs drawn so that the results would be back before we saw Camryn's doctors. The lab wasn't too crowded and thankfully we got right in, and even more importantly the lab tech was awesome! He got Camryn's blood draw done in no time, even in the midst of a crying little girl. As we walked into the lab I realized that Camryn was not next to me...I turned around and standing in the door way was Cam, tears in her eyes and saying, "I am NOT going in there...when will this all be over?" Thankfully it was over quickly, but I know she wasn't really talking about one lab draw...

She is ready for all of it to be over.

Our appointment was for 10:30 so we hung out, got a snack and enjoyed the beautiful day outside. We shopped in the gift shop and just enjoyed our time together...Camryn is an amazing little girl and days like this remind me what a gift she truly is.

We headed up to clinic and got checked in, saw Nurse Charlotte and just waited for the doctors. It was fun to see our friends in the procedure center, we chatted with Charlotte and everyone. Sometimes it's nice to be a "regular".

B, Camryn's nurse practitioner came in and said hi and explained that Camryn's liver numbers had come down; but they were still high. We talked about how Camryn was feeling, her rash, her skin in general, and other topics of Camryn's medical life. B said that Dr.M would be coming over to talk with us and I was pleased. Ever since last week and the news of steroids we have been battling a constant thought in our mind...

"Is this the beginning of the end..."

Dr.M came in and he and Camryn went through their regular routine of giggles, laughs and smiles. These two have quite a bond, it is as if no one else is in the room. Dr.M explained his plan and his take on what is going on with Camryn. His plan is to keep the steroids the same through this week, and increase her tacrolimus (anti-rejection med). He hopes that increasing her tacrolimus will enable them to lower her steroids this coming Wednesday. Dr.M's plan is to wean Camryn off of a high dose of steroids as soon as possible; he said best case would be to be on steroids for small dose every other day. My heart sank a bit, to be honest I long for the day when my kitchen counter is empty of medicine bottles and our nightly routine does not include upwards to 5 medicines...but, that day is far off, really far off.

Dr.M asked how Jason and I were doing and I teared up, and started to cry. I said it is hard to not let our minds go to the place of worst case scenario and relapse. Dr.M and B listened as I said that this road just seems so long. That having been through two transplants it is just too much at times. Dr.M is the kindest man...he smiled and listened and said, "you don't have to say another word. I'm sorry." I talked about how Camryn is almost two years post-transplant and it was two years post her first transplant that things started falling apart...and it is hard to battle not worrying. Dr.M talked about how where Camryn is now is much better than where she was two years post her first transplant. The difference?...GVH now our foe.

It seems that our foe has changed from leukemia to GVH, but oddly this foe is saving Camryn from a relapse. So GVH is really a double edged sword...there is good and there is bad.

Dr.M talked about how GVH is the key for keeping Camryn healthy in terms of battling her leukemia. And that her GVH is controlled...her doctors are letting it come and watching it closely. He asked if I remembered our conversation when Camryn relapsed...I said I did, that conversation is forever etched in my heart. Dr.M told me then that this time around would be harder, much harder; that now we would be dealing with GVH.

GVH is the craziest, most annoying, and really disheartening thing...and yet it is a gift, a treasure, and it a savior of sorts.

Dr.M said that it is rare, incredibly rare for someone to relapse while having GVH...GVH is the sign that the graft is working...that her transplant is still working and she's doing well. And yet, here we are almost two years post-transplant and dealing with meds and all that comes with it...we are doing better than before, but at times it doesn't feel like it.

My conversation with Dr.M was a gift, often I would ask the Lord if Dr.M could be there when I needed encouragement, and again he was. I am certain that Dr.M is a gift to Camryn, that the Lord knowing what was in front of her gave her the most amazing doctor to hold her hand every step of the way.

Because as Dr.M said, "I know it bothers you to think of relapse...it bothers me too."

Dr.M ordered some preliminary tests to test Wyatt's graft and just "check on it" to see how it was doing...Dr.M expects the tests to be good. And yesterday we found out that the first one was...thankful.

And the words that mean the most...

"Dana, you know me. You know if I thought for a minute that Camryn was relapsing I would tell you. I would never hide that from you."

And those words were a treasure from Dr.M

Another treasure given to me by an amazing doctor was a friend. Dr.M explained they had a patient P, who had three years of chronic GVH and Dr.M thought that his mom might be an encouragement to me. He asked if he could put us in touch and I said yes. Thursday night J called and it was as if I was listening to myself for the first time...we talked for 45 minutes and it was a gift. I found someone who gets it, who knows how incredibly frustrating it is, and how precarious each day is. Someone who gets me....a fast friend. J said she'd call in a couple days and I find myself looking forward to her call...thank you Dr.M for knowing that I needed a tangible mother who is walking this very journey with me.

There is no end in sight, not for a long time so I'm going to stop looking for one. The best I can do at this point is take each day as it is given, knowing that there is no magical day when Camryn's life will be normal...today is normal, the new normal that is life as we know it.

I am tired, but I am encouraged...Camryn is getting better and better. And today she and her little brother are gifts beyond measure...

Even without an end in sight...today is enough.

Simply it is enough to see Camryn's smile and hear Wyatt's voice...