Monday, July 23, 2012

summer lovin'...

where in the world is summer going?  how is it already july 23rd?  my word, time is flying so quickly...cannot believe that school starts in a month!  wow...
we are enjoying summer completely.  there have been lots of highlights.


here are a few:

  • for the love of the game - who knew that a little boy would fall completely in love with a sport at age 5?  well, our wyatt did and there will be no turning back.  wyatt ended t-ball and has missed it a lot.  he faithfully watches the dodger games almost every night.  he asked if we could repaint his room dodger blue...so we painted it gray and blue, it's darling - i love it!  wyatt is very proud of his room, he loves it!  it is all things dodger and our little guys bleeds dodger blue.  wyatt also has discovered baseball cards and has begun his collection this summer.  it is too cute watching him organize his cards, talk through the teams and players, and love to see who he gets as he anxiously anticipates getting a dodger (of course!).  he loves baseball, in fact we'll be getting this quote for his wall..."there is but one game and that game is baseball."
  • guppies - at the beginning of summer jason and i hoped that the kids would really learn how to swim this summer.  we decided to get to the pool as much as possible - many thanks for our friends who have graciously allowed us to invade their pools.  at the start wyatt was timid and wore his floaties, i really wanted him to shed those things as i hoped that he'd gain confidence and want to swim on his own.  jason and i worked with him, but if you know wyatt than you know that he isn't the most teachable of kids by his parents, oh he does fabulous with other teachers just not us. :) camryn did well, she enjoys goofing in the pool doing dance moves, side dives (she made those up), and just splashing around.  because of camryn's physical limitations she's not going to be an olympic swimmer, but i'd hoped that she'd at least gain more confidence to swim and begin to hold her own in the pool.  as the summer as passed they both are doing so well!  we decided to try swim lessons at the ymca and that's been a huge confidence booster for them.  they like it and have done really well, camryn being the little social one, and wyatt being mister competitive and wanting to do the best in his class.  either way they have developed well and i'm so proud of them.  in fact wyatt shed his floaties and there is no going back, he is doing so well.  and camryn is thoroughly loving her new found independence, i'm so happy for her.  it's been lots of fun in the pool.
  • clean out - so every summer i tell myself we are going to do the great clean out...and we have.  we cleaned out wyatt's room when we painted and rearranged his furniture.  then camryn's room was next...i really am not fond of camryn's room for a variety of reasons.  one, camryn has a lot of stuff and she is attached to it.  two, i've never been happy with the way it is arranged.  three, camryn is a pack rat...she saves everything.  so, cleaning out her room was a bit more work and it took a lot of patience, but when it was finished she was so thrilled and i was too!  our closet was next and we got rid of a lot...bags and bags.  as i was going through my clothes i was really convicted that i have enough.  of course who doesn't love a new shirt or something...i just was reminded that i have much to be grateful for and that i really am not lacking, at all.
  • milestones - camryn is off her medicine, which has been the great mark of this summer.  honestly never thought she would arrive here and it is so wonderful to see her enjoy this moment.  camryn is going into third grade, not sure how that is possible?!  she really has turned into a crazy reader...she reads all.the.time.  the library has become a favorite spot this summer as she reads books so quickly, so how cool is it to go get some more for free?  she loves it!  wyatt has really grown this summer...he learned to swim, learned to ride his bike without training wheels, and hopefully will master tying his shoes soon!  he is an achiever, once he knows he can do something he takes off and never looks back.  
  • blessings - one of the biggest blessings for us is that jason and i are off work in the summer, we get to soak in the days with the kids.  sleep in, hang out, and just be with them...i cherish it.  it is a blessing to watch them and think about where they were last summer and where they are now.   so much more independent, so much more grown-up, so much more active.  it's truly the greatest blessing.  
we thank the lord for all he continues to give us, and remind us of.  three years ago i really didn't dream these days were possible.  it was hard to dream again and now this dream is life...our life.

incredibly grateful.

Monday, June 25, 2012

no.more.medicine...

to be honest i never thought this day would come...


camryn lee was taken off all her meds but one this past friday.  and the one that's left...that one for only 4 more weeks to wean her system off of it.


wow.


we knew on tuesday that the doctors were running test, but we hadn't heard from them so we just continued on with life like normal and figured they'd call if any thing needed to change.  


friday afternoon we headed to see brave with auntie dede, riley, peighton, tina, and eisley...it was lots of fun!  as we were leaving tina's house heading to the theater jason called...i picked up and he said dr.m had called.  dr.m called and let jason know that camryn's immune system test was super great!  normal numbers are 600 - 1200, they expected cam's to be somewhere in the 200's due to the immuno suppressant drugs she has been on.  camryn's number 850...well within normal range, which caused the doctors to pull off all her meds.  


i probably don't need to tell you that this is a HUGE step for camryn.  her system is recovering and her immune system is fully recovered.  an amazing step.  one not taken lightly.  camryn has taken various meds daily for over three years...some of the meds were taken every.single.day. for three years.  her system recovered and now it's strong enough to fight on its own.


the body is truly an amazing thing.


as of now camryn is as close as she's ever been to a normal kid...she has longed for that since the beginning of the second journey.  and now, she is thrilled to brush her teeth and go to bed...no more medicine routine or any of that.  she is excited as can be!


the lord has truly blessed camryn this year...sept 2011 - june 2012 have probably been her best.  she has grown and experienced life as she has longed for.  and as her parents we could not ask for more.  she's living.  she's thriving. she's surviving. she's hoping.


but most of all...


she's grateful.  there's a piece of this journey that camryn is beginning to grasp...the piece that not all stories end this way.  the part where death becomes a reality, the part when you don't get to come home...in her 8 year old understanding she is beginning to see that jesus made her better, and in that she is thankful.  her faith in jesus has grown...and honestly, that is an amazing gift.

Wednesday, June 20, 2012

what's up medically...

so instead of trying to catch up chronologically, i decided to catch you up on what's new and then during the in between times catch up on the old happenings...


camryn had her regular tuesday clinic appointment this week.  i took her as it was jason's last day of school and 8th grade graduation.  i'm not nearly as good at clinic as jason, he's the pro...camryn told me numerous times that i was not doing what daddy does.  but, we survived just fine. :) 


we saw the fellow dr. c and she said camryn looked great and that the team was considering lowering her cell cept (gvhd med) again.  this was good news.  we talked about any graft vs. host disease flare ups and i confirmed that there really hadn't been any.  the few signs were some skin flare ups, but those were easily resolved with the topical creme her dermatologist dr.s had prescribed.  this was great news to dr.c.  dr.m came in to see camryn and the two of them spent about 10 minutes goofing around and just being them.  have i mentioned i love dr.m?  he told me that they were going to lower her med to once a day, which is a very low dose.  and the plan was in july to take her off of it completely...woohoo!  then he also said that they were going to run extensive blood work to check camryn's immune system and if her b & t cells were where they hoped them to be then they would discontinue all her meds.  all.of.them.


i probably don't need to tell you that this was the best news.  the thought of being done with meds, well it seems so unlikely; but the reality that is just might be means so much.


it means that camryn is really doing well.  that her system is really functioning on it's own and it is doing fabulous!  that she is in fact 3 years post transplant, and "it's about time the meds went away", to quote dr.m.  


we finished up at clinic and that was that...as we walked down a hall we've walked literally hundreds of times i smiled.  i knew behind many of the doors families were struggling, dealing with unknowns, hearing news that breaks their hearts...and yet, i smiled.  we'd been there and when there i clung to the hope that we'd be here.  and here we are...


then today camryn and i headed to ucla again to meet with her cardiologist (an annual appointment).  her cardiologist is great, i really like him.  he apologized for us having to drive down to ucla two days in a row...but, was happy to hear he was not our only appointment today.  he was happy because our appointment with him was truly uneventful.  i like dr.p...he tells it like it is, no beating around the bush.  he talked me through camryn's last echocardigram and the fact that her clot was still there.  he said that in fact it was the same size it was when it was first seen, and that 3 years ago it seemed old and now it's even older...basically, it is not a concern.  dr.p is the one who stopped the lovenox shots...he now took camryn off of baby aspirin.  dr.p feels it's not necessary...in his opinion and the opinion of every one who read camryn's echo the clot isn't going anywhere and if the body has not absorbed it by now, most likely it won't.  


so, no more aspirin...good news!  better news...another echo in a year and most likely a phone consult because her heart looks and is so healthy!  after all the chemotherapy this is great news!


after saying bye to dr.p we headed to the pulmonary function lab...


camryn had to have a pulmonary function test.  this was a new one for camryn and really i had begun to think she'd done most every possible test.  this was odd for her...she did okay, but not great.  camryn has a hard time blowing air out and a hard time holding her breath...all things that can be affected by medications.  anyways, her doctors will see the results and decide what to do...i'm not sure what they do.  but, it's something that has to be watched in camryn.


i guess you don't pump one's body with all the junk she's had and walk away untouched...so, there's a long list of things to watch.


but, for now...we'll watch our kitchen counter be less and less full of medication and for now that is enough.


enough.



Saturday, June 16, 2012

a few pictures...

so, i had 448 pictures to upload.  can you say a little behind?  


i put some in the header as i'm playing with a new free photo editing site, i'm not in love with the format...but, it'll have to do for today.  i'll see if i can make the pictures smaller and a better format for a header.  but, for now there's some new pics of the dynamic duo.


i promise that one of my goals this week is to begin posting all the updates and now that i have pictures they'll be that much better. :)


hope you have a great weekend...

Wednesday, May 23, 2012

i'll be back...

Okay, okay so it's been F O R E V E R (said in the best Squints voice from Sandlot). Don't you just love that movie? I digress... A few people have been asking when I am coming back to the land of blogging. The simple answer is soon...the complex answer I needed a bit of a break. After about 6 years of faithfully journaling Camryn's story through leukemia, Wyatt's birth, and our daily lives...I needed to just live that life. That might sound a bit crazy, but it's the truth. There's a lot to catch up on and I will do my best to get you all caught up on the life of the Mikels, that is if there is anyone reading anymore...oh well, I think I'm finally back because I can be. I began feeling that I was living life trying to think of a blog post, how crazy is that?! So, the past few months off has given me a breath of fresh air so to speak. My writing juices are back and I feel as though I actually have something to say. A lot has transpired over these months, but mostly all of it has been NORMAL. Dare I say it, we've been living the life that we've longed for, for almost 6 1/2 years now. Both Camryn & Wyatt are doing super well in school and I will be doing posts for both of them to highlight their amazing years in school. Medically Camryn is doing fabulous...truly much better than I ever dreamed possible. I guess in some ways life came and it felt so good to just live that life... So, I'll be back...I am back and slowly but surely I'll give you a glimpse of that life.

Tuesday, December 6, 2011

tuesday...

Even though time is passing and Camryn is thirty months post transplant, she still heads down to UCLA for once a month clinic appointments. I am hopeful at some point the appointments will be fewer, but for now we will appreciate the health she does have and not ask for more.

Today's appointment went well...Camryn and Daddy headed down super early, because last time they went they hit horrible traffic and the whole morning was spent stuck in traffic and then delayed at clinic. So, they headed out early and got to clinic is great time! Camryn saw B, her nurse practitioner and Dr.M...of course we love the visits when this happens. They both confirmed that Camryn looks great! Her labs came back super as well...so grateful for her health.

Dr.M commented that she is right where they want her to be and that the chronic graft vs. host disease she is experiencing, will subside at some point. Research says that it won't last forever, but for now this is what we are dealing with. Camryn's skin is a mess, she looks like she has horrible eczema. The doctors said the weather isn't helping at all and to keep her super moisturized, so we will! I have to say that I am so thankful for the very sweet group of girls at school with Camryn...never once have they said a word about her skin or her scalp. I love these little girls, and I am so thankful for them!!

They are referring Camryn for a dermatology consult to have her scalp looked at further, but for now that's the extent of the issues...we are just thankful for her health.

Jason made the comment that while they were at UCLA he saw parents in various stages of the journey...and my heart paused. Inasmuch as I am SO thankful Camryn is doing well, the journey is never forgotten. I know there are children even at this moment who are on the 3rd floor fighting for their lives, children waiting for donors, parents receiving news no parent should ever have to hear...and my heart aches.

As I watched Camryn run her lap around the field with her PE class my heart smiled, there were many days when I wondered if ever. Would we ever get these moments? And the harsh reality is that we know far too many parents who don't and that breaks my heart.

Yes, we are thankful...but, incredibly humbled that Camryn is doing well. The Lord has taught us much throughout this journey and today He is gently reminding me...

Never forget...you were not the only parents walking in those shoes.

Monday, December 5, 2011

beautiful things...

All this pain
I wonder if I’ll ever find my way




I wonder if my life could really change at all
All this earth




Could all that is lost ever be found
Could a garden come up from this ground at all


You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us




All around
Hope is springing up from this old ground
Out of chaos life is being found in You






You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us






You make beautiful things
You make beautiful things out of the dust




You make beautiful things
You make beautiful things out of us




You make me new, You are making me new
You make me new, You are making me new
You are making me new




You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us




You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us




You make me new, You are making me new
You make me new, You are making me new


~ Gungor