a year ago...

5.25.09 we were in the process of being admitted to the third floor for Camryn's second bone transplant...



And now a year later...

5.25.10 Camryn went to clinic almost a year post-transplant.

Last year we were embarking on a journey where a year seemed almost too much to comprehend and now here we are...and truthfully it is a miracle that Camryn is where she is at.

Today at clinic Camryn saw Dr. A and her nurse practitioner, she is always happy to see their familiar faces. Both Dr.A and B said that Camryn "looked great", honestly in the world of pediatric cancer most doctors can tell something is not right just by looking. So it is very encouraging to hear that Camryn is looking wonderfully. It was determined that Camryn could discontinue her "swishy" medicine as she calls it, so that's one med down...only roughly 5 more to go. Jason asked about her other meds as once a patient gets to a year sometimes some of the meds are lessened. At this point all the other meds continue as most of them are tied to the fact that Camryn is currently on an immuno-suppressant (tacrolimus); so those meds won't be changing for awhile.

They also discussed the echo that Camryn has yet to get. It was concluded that once Camryn changes medicial groups it will be much easier to get authorizations, so we are hopeful that in June the echo will get done. And maybe just maybe those results will be positive and that would led to an ending of the nightly Lovenox shots which as of tonight have become a nightly ritual...yes, 365 shots. Far as labs Camryn's labs look great, her numbers are nice and strong and just where we'd like them to be. In fact her ANC is at 2300...so her immune system is working, building and growing. Next month her doctors will run extensive blood work to check Camryn's B & T cells and see for sure just how strong that system is. Those results would then impact potentially starting immunizations and such.

A long journey awaits....a long journey complete.

If you were to ask me a year ago when I walked out of Camryn's room for the first time to come home without her for another 35 days, if I thought she could do this again, if her body could handle this, if we could handle this...I probably would have mustered an answer of yes, but deep within myself I did not know. A bone marrow transplant is an extensive medical journey, it is difficult on a patient, on their body and the outcomes are not givens. Having a child with cancer is an extensive emotional journey, it is difficult to parent the child, it is hard to know what is okay and what is not, all the while hoping against hope that your child can do it again. That she can fight with all she has to pull through.

And yet you have a healthy child...a child whose life is turned upside down as well. A child who knows all the medical things as well and lives with the realities that their sister may or may not be coming home. Even this morning as Camryn and Jason drove away Wyatt asked, "Is she coming home?". Yes, even a full year later his heart knows...that nothing is a given.

We are incredibly grateful for the year we have had...

This is not how it should be
This is not how it could be
This is how it is
And our God is in control

This is not how it will be
When we finally will see
We'll see with our own eyes
He was always in control

And we'll sing holy, holy, holy is our God
And we will finally really understand what it means
So we'll sing holy, holy, holy is our God
While we're waiting for that day

This is not where we planned to be
When we started this journey
But this is where we are
And our God is in control

Though this first taste is bitter
There will be sweetness forever
When we finally taste and see
That our God is in control

And we'll sing holy, holy, holy is our God
And we will finally really understand what it means
So we'll sing holy, holy, holy is our God
While we're waiting for that day

We're waiting for that day
We'll keep on waiting for that day
And we will rise
Our God is in control
~ Steven Curtis Chapman

for a moment...

The world was as it should be...

Today was one of those days that felt really normal, felt like our family had not walked the journey we have. For a moment it felt...real, normal and wonderful.

Camryn and I went to a baby shower for our dear friend Amee. Camryn had the honor to be a flowergirl in Amee & Derek's wedding...so Camryn loves Amee. In fact Camryn's friendship goes back to the day when Camryn was little and she would go "bug hunting" with Amee at the boys softball games. Camryn was so excited to go, because of course her Auntie Dede and cousin Riley would be there and she adores time with them. The shower was great...lots of yummy food and lots of wonderful, darling gifts. Camryn had lots of fun with Riley and meeting some other friends. Of course Camryn savors every event...she loves social life. She really had fun getting ready, chatting with the girls and for a moment just being six.

While we were at the shower with the girls Wyatt and Daddy got to go hang out with one of their favorite people Uncle Robby and baby cousin Sweet P. From what I'm told Wyatt loved playing with Riley's toys without Riley or Camryn there...yep, I'm sure he enjoyed playing without the Little Misses there. :)

We got home from the fun and both Camryn and Wyatt crashed for a bit and so did I...we quietly enjoyed the rest of the afternoon resting which was much needed.

Tonight we were invited to our friend Dean's 50th birthday party. It was a non-kid party, but Dean made an exception for some family kids and Camryn and Wyatt. Camryn and Wyatt had a blast! They swung on the swing, ran around the yard, ate yummy food, played with some other kids and loved on the dogs. Jason and I thoroughly enjoyed watching Camryn and Wyatt enjoy a normal outing...chatting with other kids, laughing and being a kid themselves. It was wonderful. For Camryn it was a moment that meant so much, she chatted all about all the way home...it was darling! We had lots of fun....it almost felt as if the world had returned and even if it was for a moment it was absolutely wonderful.

Getting ready for bed tonight Wyatt chatted and chatted about going somewhere and having fun...sometimes I forget that for as small as Camryn's world is, his is small too. Wyatt loved running around and eating tons of food...he especially enjoyed Dean's dog Chip. Wyatt talked and talked about it and how much fun he had. I love seeing them enjoy the outside world...it is a gift.

For a moment life found us...the life of the outside world and it was wonderful. Many thanks to those who made these little moments possible. For an isolated family it means so much.

day +350...

Three hundred and fifty days post-transplant...

Congratulations Sweet Girl! We are so proud of you. We love your spirit, your kind heart and your care for others...sweet girl you've been through so much and yet you continue to care so deeply for others. For all that we have held you through, you have held us...you have taught us to live each day, savor each day and hope against all odds. There are many days when we are just in awe of you...how you daily do all that you have to do, most children have no thoughts of the life you live. We hate all that you have to endure, but we would not trade a moment with you...

We Love You

~ Daddy & Mommy

And there's a little boy who deserves a congratulations too...

Wyatt...

Your gift to your sister is among the most priceless gifts. At times I find myself just in awe of the Lord weaving you together and giving you a perfect 10 out of 10 match for your sister who was so sick. Oh sweet boy, you give and give to us a love and a story that drives us to be thankful. Knowing that the Lord does know that details of our lives, he is involved in our journey...for from you we know that the Lord is never finished...

Love you Wy

~ Daddy & Mommy

a calm...

For all that life brings and all that is crazy about life...we have reached a calm of sorts in Camryn's medical life. This week has almost dare I say it felt *normal*. We have not made any trips to UCLA, we have not had to call a pharmacy, we have not had to schedule things with home health...no for a week all is quiet on that front. And it feels fabulous!

I did do something medically speaking for Camryn, but I'm chalking it up to "things parents of six-year-olds have to do". I called and made an appointment at a pediatrician's office...yes, on June 7th Camryn will be meeting the newest member of her team Dr. L. Dr.L is the same doctor who responded to my email about care and referrals within 10 minutes of me sending it. Never met him, but already feeling that the Lord is opening doors again for our sweet girl. When I called the office they asked if my child had a UCLA medical ID number, of course she does and I am surprised that at this point I do not have it memorized. As I spoke with the appointment desk the lady was super nice and assured me that changing Camryn's care over to this group would really make our lives easier...over and over she said, "oh you'll have less worry and headaches." Really? If only it were that simple, but I'll take it!

But far as the *other* Camryn things it's been a quiet week...

Camryn is almost done with kindergarten, can't hardly believe it. Seems so unreal that she has almost completed a year and seems like it was just yesterday that those dreams of kindergarten were dashed...and now, she's almost done. Her teacher is very proud of her and constantly tells us that Camryn is doing fabulously and excelling in school. Again this causes a deep breathe and a sweet smile to consider that our little one is learning and growing like any other child would be...because with Camryn those normal moments are not givens.

And yet I found myself in tears walking to my car the other day at work as I listened to the little kindergarten students practice for their Spring Sing. The Spring Sing is an annual tradition at Village, I was even a rain drop back in 1981...so yes almost thirty years later those little kids sing their hearts out. I cried as I longed for Camryn to be one of them...sometimes I just wish that all that she has lost would be recovered to her, but I know that this is one that will never be. And I'm learning that with some moments I just have to be okay with that. I do not have to like it, but I have to learn to accept it. It may seem silly, but at this very moment I wish that we had plans tonight to go see her sing with a long list of family joining us. A chance to see our little star shine...

These are the times when I really hate leukemia, I hate it. But for what it is worth I cannot change it. I wish I could...

Of course we are hopeful that September might bring first grade at Village, but there are no promises and that's okay. We will take it one day at a time; knowing that with every day a gift is given and for that we are thankful.

I am incredibly thankful for this calm, even if it comes with a few tears along the way...because last year we were counting down to hospital life and days of separation and transplant. I am thankful to be at a year...being able to look back in order to hope forward...

To know that we do not always get to walk in the sunshine, that some moments are filled with clouds and storms and sometimes all you can hope for is a calm...and maybe at some point the clouds will break and make way for the sun.

Hoping forward that the calm is going to bring some sunshine...

songwriter...

Camryn is our little songwriter, honestly we might have the next Taylor Swift on our hands. ;)

She LOVES to sing and constantly is making up her own little songs...it is precious, priceless and just purely wonderful. I love hearing her sing and make her own little songs about life.

Here is the song she sang to Jason tonight with her guitar...

I love you Daddy, you're my daddy
I love you Daddy, you are my hero
I love you because you are my hero
Because you really are fun
Wyatt really loves you and he loves to play games with you
And you love me and I love you
And we never ever stop because
We're never ever going to stop
I love you
I love you Daddy...

"now here's our duet"

You're the best Daddy I've ever had
You always play softball
Which I could talk to you
I love you
I love you Daddy

~ Camryn Lee

Then she had a little tune for me too...

You're my mommy and I'm your little grown up girl
You're my mommy and I will always be your daughter
You're my mommy, You're my mommy, You're my mommy
Yeah
You named me Camryn and I'm still your little girl
And I always will be your 6 year old girl
Mommy...Yeah

~ Camryn Lee

These are treasures...love her creativity and spirit. Oh and Wyatt makes a rockin' background singer and guitarist...yep, they are a rockin' band for sure!

back...

So good to be back...

I survived my three day adventure with 90+ 8th grade students. We had a great time, saw lots of sites, enjoyed some really cool museums, ate lots of yummy food and walked a lot! Being with the 8th grade students on this trip was a full taste of normal life...it was nice, but I surely missed my life here at home. But, I did have a few tastes of this life while chatting with Camryn's home health nurse arranging lab draws from 6 hours away, or chatting with the medical delivery guy saying he is on his way to my house. I will say that it's no fun trying to figure out schedules and such from 300 miles away, I'd much rather be right here at home dealing with the ups and downs of this life. Made me very thankful that I do not have a job that calls for travel...that would be really hard.

I must say that I enjoyed chatting with a few of my girls about life, not just what we saw during the day; but life. About my life, what I've gained and what I've learned...realizing that they want to understand their own life while hearing about mine. If there is one thing Camryn's journey has taught me is that I am a better teacher when I am transparent. When I let my students see me...the real me, the highs the lows...all of it. For it is when I let them in that they allow me in, and really that's why I'm a teacher.

One of my girls asked me a question that I still am mulling over and over...never got a chance to properly answer her (we got interrupted), but I plan on answering her once I have an answer. Her question? Mrs. Mikels how is it that you come to work and teach us every day with a smile on your face? Please forgive the paraphrase, but it was roughly 10:30 after a very full day. And I have played that question over and over...

And really I don't know...

Well, I do; because I don't do it. I quite frankly do not have the emotional strength to go to work day after day and teach U.S. History to 80+ students on my own; it's Him. It is the Lord's doing, not mine. So I know that part of the answer, but the part that is challenging me is that they see it...my students see all of it. The good the bad and it challenges me to leave them with more than facts and stories, but leave them with a piece of what really matters.

God's incredibly love for them.

I am thankful, incredibly thankful for the three days spent with a group of students who have watched me walk some dark days and some bright days. I am thankful for the moments that they have given to me. I am thankful for three more weeks that I will spend as their teacher and them my students. And I am thankful that a story of a little six-year-old and three-year-old runs deep in their hearts...because they are a part of that story.

Their part?

Healing a teacher's heart and helping her believe that she can teach again even after having her heart broken...

Thank you my dear 8th graders...

::::::::::::::::

And how did Jason, Camryn and Wyatt do while I was away?

Perfect.

Jason got through Camryn's line changes, flushes, medicines and shots just fine. No better than fine, great! They had a good time together, but as Jason said we just don't feel complete without all four of us together. And I think that is the way it will feel forever.

::::::::::::::::

And this week Camryn reaches day +350...and the calendar is inching closer and closer to June 4th.

And we couldn't be happier...no we couldn't be happier.

day +340...

The countdown is under thirty days...yes, we are inching ever closer to Camryn's ONE year post-transplant. In transplant world the anniversary of your "day" is called your second birthday...Camryn's second birthday is on 10.20.06 and I guess now she has a third birthday 6.4.09.

Camryn is doing really well, this week we are clinic free with only a home lab draw tomorrow. She is seemingly doing well and her systems seem to be holding their own. The GVH rash is nice a brown...yes, she has a variety of shades on her torso, none of which are truly a "flesh" color. I am thankful that it is pretty much strictly on her torso, because it does help avoid any embarassment that Camryn might feel from it. No word yet on the echo, the appeal is at the insurance so we wait...isn't that life in the medical world? I guess we should come to expect it by now.

As far as medication Camryn is doing well with her transition back to liquid Tacrolimus, and we have figured out a good schedule to do the best we can with the empty stomach restrictions. For adults it is one thing to take meds on an empty stomach, try that with a six-year-old and it can be down right maddening! We are so thankful to have found a compromise, a happy medium where Camryn handles it well and the medication gets taken.

I am also pleased to report that we have officially changed Camryn's medical group and fingers crossed it will help things work more smoothly for Camryn; not only now, but in the future as well. One piece of this whole insurance drama that I have left out is that the plan is usually in place for a child to be followed up with until they turn 18 at which point they would then be considered an adult. It only makes sense to us as far as we can control it for Camryn to be followed up at that same place that her transplants took place...so yes we are twelve years off of 18, how crazy is that? But, in this world we have to anticipate getting there even if it is a crazy, rocky, happy, long road.

Yesterday while chatting with my hygentist cleaning my teeth about Camryn and her variety of mouth/teeth issues I was enlightened to a few things. My hygentist is super, super nice and has been very patient with me while I skipped appointments because my mind was literally elsewhere for a couple years. She was telling me about some of the effects of radiation on people's mouth/teeth and I was amazed. Now, granted I would rather not be talking about radiation at all, but I swallowed hard and realized at some point as much as I hate it I have to embrace the fact that the more I know the better. We also talked about medications and such and she had some eye opening reasons that Camryn's mouth and teeth are a struggle. I left encouraged...plus, I don't go back for four months and for me that is a personal victory!

Life is really moving along nicely and yet at times it feels like there are few moments of peace. It's as if everyday I get home there is a variety of messages from home health, home nurses, home supplies, pharmacies, oh the list never ends. So I usually spent a few moments every afternoon sorting out just exactly what is what in the medical world of Camryn. But, for what it's worth I can't complain too much...Camryn is doing really well and I guess I really would take a million messages any day to keep her well.

Tomorrow I leave for three days for San Francisco, not really on a vacation...I guess you would call it a working vacation. I am preparing to tackle a piece of normal life...a piece that has been removed since I became a mom...

The 8th grade class trip...yes, I teach 8th grade students and I really do love it. I know some people read that and think that I might be insane and I at times I wonder if I am. But, I am heading out with this group of 90+ for a three day adventure in the City by the Bay. I am excited and scared all rolled into one...

I am completely excited to go, to feel a sense that life is stable enough for me to take off for three days and the bottom won't crumble beneath my feet. Oh I know it could, but there isn't anything knowingly on the horizon...knock on wood! :) It will be nice to "feel" maybe a bit of normalcy, something that I would normally be doing. I am excited as it's a opportunity to hang out with the students outside of school and make some connections before they move on to high school. I also get to hang out with a few of my favorite peers and co-workers which just adds to the fun.

I am scared, never been away alone before...I completely know that tears will come as it just isn't the same walking out the door anymore. I used to really enjoy those few moments away and now I hate it...maybe because for so many days I left a hospital room or left my house saying good-bye to one of my children and always my hubby. I just do not like not having one of them with me...just makes me feel that some how the world is amiss. And really this is the way it should be...

If I'm honest I am glad we are going to San Francisco a city I thoroughly enjoy and a place that holds fun memories for me...Jason and I were just there in March. So it'll be fun...but I know I'll be super, super anxious to get home Friday night.

There is a lot rolling around in my head these days...finding myself in disbelief that this time last year we were preparing our hearts for the realities of transplant and all that comes with that. Wrestling with those memories...trying to let go of some and clinging to others.

Plus, I have almost finished the school year...this is a HUGE accomplishment for my heart. I will exhale on June 8th, the day I officially check out for summer...guess in some ways I've held my breath this year, hoping, believing that maybe just maybe we'll make it through a year.

And as of this point we're about 25 days away...