friend & foe...

Clinic went well today...

We headed down bright and early trying to beat the crowd in the lab since we now have to make our stop there since Camryn is line free. We grabbed our number and headed up to clinic, Camryn was a bit upset by the whole realization that she was going to have a poke for her blood draw. Once upstairs it was pretty quiet, she was still not herself as she was upset, but once she got into her normal routine she was great. We saw Camryn's nurse practitioner B who introduced us to Dr.S a new member of the transplant team. B confirmed that Camryn looked good and that all was going well. I gave B Camryn's paper work for school as it needed to be filled out...we were hopeful that maybe, just maybe Camryn would be cleared for traditional school. We knew this would be a long shot, but we were hoping. B said that she didn't think so but they would talk with Dr.M and see what his thoughts were...

A few minutes later Dr.M comes in and gentle says that Camryn is right where they want her, that she is doing really well and that she is responding just like they'd like her to. He reminded us that this time around (second transplant) things would be different and that the major issue would be graft vs. host disease. With that all in mind Dr.M said no to traditional school, Camryn will continue with her home school program that she did this past year.

Dr.M said that graft vs. host is both our friend and foe...it's our friend in that it is the key to Camryn being well, it is even more important than her conditioning regime. As of right now Camryn is on her anti-rejection med (tacrolimus) to control the GVH she might have. Since she is still on her meds her immune system is suppressed and in order to test her immune system she has to be off her tacrolimus...and as we found out today the weaning process takes even longer in a patient with chronic GVH. GVH is our friend in trying to heal, keep Camryn well...we get that, we certainly do and honestly we will and have done everything within our power to keep our little girl healthy...so we get it in our heads.

Our foe...the reality that this is what is keeping her from enjoying the normalness of childhood. Her medicine is what is keeping her from her immune system being ready for shots and such. But, we know that GVH without medicine can be raging problem and that is something we do not want.

So, GVH is here to be with us for awhile even without a visible rash...it's here to keep fighting to help Camryn be well.

But our hearts...

My heart sank as Dr.M said no, I get it I really do; but we were beginning to allow ourselves to dream of the "what ifs". You know at some point I really should stop that! It's another year...of a dream delayed and really on my sane days that is okay. But, on days when the back to school ads come out and other little ones are heading to school and my sweet girl will have to wait, again...that's when I feel like enough is enough. I am tired of our isolated life...yes, we do things here and there, but church and school are not okay yet and really those are two things we miss the most.

So today, I'm sad...but, again it's a challenge in trusting my Lord to deal with this mess in my heart. I do not get it all, but I do trust Camryn's doctors and I believe beyond a doubt that they are doing their absolute best. So there are no doubts or questions there. My questions and doubts loom largely in my own heart...wondering if our hearts can take more isolation. I wish I had the words, but for now I'll continue to trust the hands that have brought us this far and the ones that will carry us through.

It's messy, it's hard...

After all we are battling a friend and a foe and even our own self's you get tired. It is so amazing to see Camryn and how far she has come this past year, we are thankful...truly we are. But, the road is just long...longer than we'd ever imagined it to be.

That being said in our hearts we are packing some dreams away for another day, it will come in a matter of time. I wish I understood it all clearly enough to make my heart get it...but, in time the perspective will shift again and the reality of right now will take focus and we will praise Him for what is. I will not pretend to be okay with these dreams delayed, quite frankly I am tired of them; but when I really sort it out and really consider the alternatives I am okay.

And I guess sometimes it's quite alright to not be okay with all of this...it's a journey we never wanted, we never asked for. And at times we wonder where in the world the past four years have gone? How did our lives come to be this life? I know that at some point, some way the beauty is there...some days it is crystal clear and those days it's as if I'm looking through broken glass. But, He is weaving a beautiful story...I may not like it all the time and sometimes the story feels to be both my friend and my foe.

Thankful my Savior is big enough and good enough to deal with my messy days and my clear days...days when I see the friend and days when I see the foe.

And honestly I cannot wait until the foe is no longer...but until then,

We wait with hope.

good-bye's...

On Friday we said our "good-bye" to part of Jason's sister's family who are moving to Colorado. I won't lie it wasn't easy, but it was especially hard for Camryn. She had to say good-bye to James, her best friend.

Throughout this journey Camryn's cousins have been her social network, her friends and since she was little her best friend has been James. He has always and will always hold a very special place in her heart...the bond they share is priceless. On the ride home she cried and cried, not understanding it all and just heartbroken for having to say good-bye to her James. It was difficult knowing what to say to her little heart...the usual, we'll see them again's and we'll talk to them often's just don't cut it. Camryn's heart operates a bit differently than most six year olds. Her world is small and she really does not know how she'll get through without James. He means so incredibly much to her...

As I sat Friday night thinking about it I could imagine that if at six I had to say good-bye to my cousin Steven (who is very much to me like James is to Camryn) I know that my heart would just ache too. I very much believe Camryn envisioned going to school with James and just growing up with her best friend at her side. And if I'm honest I did too.

But, life has a way of changing on us when we least expect it.

Camryn is doing better, but she'll miss them all...especially a little guy named James. I wish good-byes were easier, but they're not.

I guess the anticipation for Christmas will be that much greater, because I think perhaps the greatest gift might just be James, Tori and Jackson walking through the door. :)

We certainly know that what we've had and have as an extended family has been a great blessing and I know that these past four years of Camryn's journey would have been much more difficult on her heart without her cousins, all ten of them.

Grateful for the time we have had and eagerly anticipating the time we will share as it will be that much sweeter...

a day with wyatt...

Today was an extra-special treat, I got to spend the day with Wyatt. Camryn went to our dear friend C's house for some craft/play time so it was a day with Wyatt.

After we dropped Camryn off Jason and I took Wyatt to the park for a bit...it was a treasure. As we watched Wyatt so tentatively climb the equipment we both smiled as he was navigating life without his big sister. Time passed and slowly but surely Wyatt jumped right in and by the time to go he was doing all sorts of things on his own and quite proud of himself.

As Jason and Wyatt were playing I sat and just watched, imagining for a second what our lives would be without our little guy. How differently would it look? But, most of all the enormity of the gift wrapped in Wyatt...yep, I could not keep the tears from welling up. As Wyatt smiled, giggled, ran I caught myself over and over again thanking the Lord for this amazing gift...a gift that I could never say enough "thank you's" for.

We grabbed some lunch and headed home...it was a bit weird to just have Wyatt with us, but it was very special to be able to just be with him. After lunch Jason headed out to go golfing and Wyatt and I ran some errands. It was such fun! We chatted...laughed...and I cherished ever single second of it! Over and over again Wyatt would say, "Mom"..."yes, Wy"..."I love you."

I wonder sometimes what Wyatt's life would look like had his big sister never gotten sick. Wyatt has a very small life, he really doesn't have too many friends, he is very shy and timid around new people...he like Camryn has not had a normal childhood. And at times I just wonder...

Amongst the wondering is also my undeniable blessing.

Wyatt honestly fills a spot in my heart reserved for him. He completes a piece of my walk with my Lord unlike anyone else...he is my own personal megaphone from the Lord screaming at my heart, "I am never finished writing your story...I am way ahead of you...I love you."

Over and over while pregnant with Wyatt I wondered about this baby, I prayed that the Lord would allow me time to be their mommy and the grace needed to love this little one while their big sister was sick. It is a precarious balance loving a sick child and a healthy one...I begged the Lord to allow me to know that He was a part of this little one's life and that He would carry this little one and me through.

And He has...

Wyatt and I share a bond that runs deep and on days like today I just stop and am in awe that my Lord wrote a love letter to me in the life of my little boy.

I love my Wyatt with my whole heart and many times it's as if his little life gets lost in the shuffle of his big sister. And at times I hate that, I really do...

But, the Lord gently reminds me that Wyatt's life is His to write and He has big plans for Wy...after all Wyatt already has saved his sister's life.

And everyday Wyatt reminds me of my Savior's love...

this 'n that...

Been a little bit of this 'n that this past weekend...

After Camryn's line removal she is doing great! Saturday morning she slept in and got some much needed rest. Most of Saturday she was quite sore, not complaining that the site hurt; but, more just very cautious and not wanting anything to hurt the site. As the day went on she was doing better and better.

Saturday evening was spent outdoors, the kids played and played...it was a wonderful evening! Bike rides, baseball, running through the water mister, watering the yard...lots of summer fun. I absolutely love summer evenings when the cool breeze picks up after a hot day...the ease of life, the pace of the evening, it was a lot of fun. I didn't take a single picture, guess I was capturing the moments in my mind's eye...the moments were priceless.

The evening ended with a summer rock concert by none other than Camryn & Wyatt rockin' out in the driveway singing at the top of their lungs, it was awesome! I love their spirit, the innocence of youth...gosh, to be so young at heart.

Sunday, Camryn and Wyatt enjoyed some time at Grandma & Papa's house while Jason and I headed out to help his sister pack up some things to prepare for their move. I have to admit while packing my nephews' room that it was very bittersweet...I love those boys so much and the thought that their life is moving to a new *place* was a bit surreal. Plus, I really hope J's legos make it there safe and sound! :)

All and all life is moving along nicely, hopefully there will be no trips to UCLA this week as we went 3 times last week. Camryn is doing well and we are thankful...took a look at her site today and it's healing. Her poor skin has taken quite a beating from all the adhesive tape and remover over the past months, so it is pretty sensitive, hoping it heals up quickly to give Camryn some relief. She is more and more active and having lots of fun! In fact today, while I was helping my mom clean out some things in my old room we found a dress of mine size 5 so Camryn wanted to try it on...yep, fit her perfectly and my mom could not believe how much she looked like me in it. I'm going to try to find a picture of me in it...and then take one of Cam, it's fun sharing things of my childhood with her. At times I think she is a bit like me, she loves treasures...she loves things that were mine, or my mom's. There is a lot of fun sharing your past with your little ones...I enjoyed it very much.

Wyatt spent the day getting his hair cut and running some errands with his Daddy, boy did he enjoy that. And I must admit I love when Wy gets his hair cut...so darn cute! We are beginning our preparations for Wyatt's fourth birthday...I simply canNOT believe he will be four. Wow...we are starting to get things together and begin that fun...I love me a party and it's always fun celebrating the gift of Wyatt, I love it!

Well...that's our life these days, pretty basic and pretty great. Plus, our nightly routines are simply great now...no shots, no line changes, just medicines, it's a bit more normal and we love it!

Yep, doesn't take much for us to be thankful around here.

hard.over.finished, like a champ...

It's been a long day...a hard day...it's over, it's finished...and Camryn is a champ.

We started the day early at 5:30am in admitting to get all the paperwork in order to head down to pre-op to get ready for Camryn's 7:30 *procedure*. As we waited it felt oddly surreal to be sitting there with Camryn in her pajamas...I can honestly say that one of the hardest feelings as a parent is watching your little one be wheeled away, I hate it. As the clock ticked and we made it down to our pre-op curtain area Camryn was doing well, no real tears and whenever the nurses or doctors asked why she was there she quietly said "to get my line out." Everyone was very impressed with Camryn's attitude and "grown-upness"...sometimes I wish she didn't know so much, but there's no avoiding that.

At 7:30 the marching music played and off Camryn was wheeled to her procedure room, the doctors was kind enough to let Jason and I walk back with her as they had yet to put her under. As we walk Camryn got more and more nervous and by the time we got there she was a mess...with tears streaming down her face she said, "I'm so tired of all of this...I want this to be over."

Over.

I kept a stiff upper lip and console her little heart as best I could, finally the relaxation juice kicked in and she was off to dream land. We walked out and I cried...as I walked the same hallway in which I walked over a year ago as Wyatt was in surgery, my mind filled with memories and I was just heart broken.

I want this to be over.

Jason and I quietly headed upstairs to the waiting room, not too many words as we both knew that we were on the verge of losing it...we are tired. As we sat and waited we watched the clock...they said about an hour. About 8:35 Jason's phone rings and it's them, Camryn was done; as we got up to leave the resident surgeon walked up to walk us down to Camryn. As he talked us through the surgery and such he was so kind and gentle...he kept reassuring us that Camryn did great. The line came out fine and they had to give her one stitch, but she was doing well.

As we walked up to the recovery area and I saw our curly little one huddled in a ball I wanted to scream, "when is enough, enough?...when can she be finished?" Camryn told the nurse she heard her mommy and sure enough there we were...she was crying, coming out of anesthesia and just a mess. We gently held her hand and stroked her hair, she wanted to go home...

Thankfully the doctors and nurses were fully aware of Camryn's journey and were very gentle and caring with her. We did not have to stay too long in recovery and were able to go without much difficulty. As we walked out I hoped that we would not have to come back and that for maybe a moment we were finished.

Camryn's cardiologist wanted her to have an echo after her surgery to check on her blood clot, we had one scheduled for 11:00am as we were not sure how long surgery would take. After leaving the OR we headed to get Camryn some breakfast and kill some time. As she was eating I had the thought to call the echo lab to see if by chance we could get in earlier since she was finished earlier...and true to the form of our team lately they said "absolutely". Once Camryn finished her cereal we headed upstairs to the lab and were getting the echo done super fast.

The echo concluded that the clot is still there so the cardiologist prescribed baby aspirin and wants another echo in a month to check on things again.

Once all of that was finished we headed home...

Our little champ. Honestly, her little body and heart have dealt with more than most and yet she does it with such grace. She hates every bit of it, but you know today I saw the grace of Jesus with her...without a doubt the Lord has given Camryn over and over whatever is necessary for each day, each moment.

We are ever so thankful that our little champ is done with her line...that it's over, finished and that maybe some things will be easier from now on.

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Thank you for praying for our sweet girl...your thoughts and prayers throughout this journey are precious to us.

tomorrow it is...

Got a call today and guess what?

Tomorrow at 7:30am Camryn will have her surgery to remove her line. We will have to be there at 5:30 since the surgery will be in the main hospital since Dr.D could not get a time scheduled in the out patient surgery center. It will be a pretty fast procedure and hopefully Camryn comes through just great!

After the procedure we will hang out for a bit and then head to the echo lab for an echo on Camryn's clot to see the verdict...gone, smaller, moved?

Prayers are much appreciated. Our girl has been through so much and we are hopeful that yet again she does great!

I'll keep you posted...

fourteen months later...

Today we made our second trip down to UCLA, yep two days in a row! We met with Dr.P the cardiologist to discuss possible options for Camryn's clot...our fingers were crossed that Lovenox shots would no longer be on the list.

As we talked with Dr.P we gained some insights on Camryn's clot:

* the clot hasn't really changed at all.

* the clot is very close to the line.

* the clot is in the right side of Camryn's heart, meaning that if it broke off it would go to her lung, which is much better that the left side...which is the aorta and goes everywhere in your body.

* the clot is a concern, but not a major one

* that the doctors had all talked regarding treatment, did I tell you I really love Camryn's care at UCLA

And last but certainly not least...

Camryn is no longer on Lovenox shots! Yes, after fourteen months of nightly shots in her poor little thighs tonight there was no shot.

As we talked with Dr.P he said that he would talk to Camryn's surgeon further and the hope is that when Camryn's line is removed that the clot would come with it. He said that the plan is for Camryn to have an echo after surgery to check and see if the clot is gone or if it moved.

If the clot is gone...no more worries.

If the clot is still there...Camryn is put on baby aspirin and the clot is monitored by Dr.P.

But, Lovenox shots will not be an option then.

Dr.P said he felt badly for Camryn having to be on the shots so long, he really did not feel that continuing them at this point is necessary. Basically he felt that stopping them now (which we would have to stop them before surgery anyways) would be the best option for Camryn. I was very impressed with Dr.P, not just because he gave us the news we longed to hear, but rather because he cared. He had spoken with Camryn's doctors and made the comment, "that she probably doesn't need another doctor." with a smile, but I will gladly add Dr.P to our team.

While Dr.P was talking Camryn was quietly drawing and I didn't know if she was comprehending what he was saying. When we got on the elevator I asked, "Camryn do you know what Dr.P said?" To which she coyly responded with a little grin "no". I said, "he said no more shots...". And I wish at that moment you could have seen the million dollar smile...yep, she was walking on cloud nine as we walked to the car. Giddy as ever, smiling...

The best line...

"Mommy, I'm glad the doctor said no more shots, because they hurt. A lot."

After giving my baby girl shots night after night for fourteen months I cannot tell you the relief of not doing that again. It is a huge weight, a huge relief, a huge praise!

I told Jason I think this step will matter in a huge way for Camryn...because it is a tangible, significant one. She gets this...no more emla, no more alarm to remind me to get the shot out of the fridge, no more ice pack...

No more shots...

one down...

Today we meet with the surgeon who put Camryn's line in eighteen months ago and he concluded that indeed he would schedule surgery for her line to be removed.

Eighteen months...

As Dr.D said, "your line has served you well." And it has. But, I don't think we will be too sad to see it go.

The office will call with a surgery date and we'll go from there. But, for now...

One down, line is coming out.

Now tomorrow meeting with the cardiologist to see about the clot and Lovenox shots.

Thanks for your prayers...please keep praying!

pretty bird...

My mom made a promise months ago...

Camryn and Wyatt are now proud owners of parakeets, that live at Grandma's house.




Camryn and Wyatt has such fun picking out their birds, watching the girl put them in the boxes and hoping that when we made it home they were still alive.

Once we got home we got the cage all situated and my mom put the birds in the cage, maybe I should admit I'm a bit freaked out by holding the birds. :) But, thankfully the birds are safely in their cage and enjoying their new home.

Wyatt decided he wanted a blue bird...



And he affectionately named his bird, BLUEY. Creative huh? So his little blue bird is our new little friend Bluey.

Camryn decided she wanted a yellow bird...which by the way meant that we had to go to two pet stores because the first one didn't have a yellow one. And of course Grandma wanted Camryn to be happy with her new friend.



All sorts of names were thrown out and Camryn decided that...her bird was yellow, her favorite color like her favorite princess, so her bird would be named BELLE.

So Bluey and Belle are our new little friends and thankfully they live at Grandma's house! Perfectly fine with Jason and me...not such a fan of birds in my house. But, my mom...she's game.

Apparently a tidbit of information that I had missed growing up was that my Granddaddy raised parakeets in their backyard. I have always wondered why my mom loves having pet birds, well now it makes perfect sense to me.

soon, maybe...

Yesterday morning I felt as though I worked in a medical office answering phones, scheduling appointments and refilling prescriptions...but instead of it being for a various people it was all for Camryn. Camryn's doctors met to discuss possible alternatives in dealing with her blood clot as well as the possibility of removing her line last Monday. They put the paperwork through to get a referral for a cardiology consult as well as a surgical consult for her line removal. True to Camryn's new insurance group form the authorizations were through in less than a week, so the offices were calling to schedule appointments.

First the cardiologist...we will go next Wednesday to get a consult for her blood clot. Talk with the cardiologist and see if there is an different option than Lovenox, maybe an oral medication, ask some questions regarding the future of the treatment; as quite honestly I think most of the doctors thought this would not be a long-term thing and it's been over a year now. We are very hopeful that something will come of this and change...really ready to end the shots and move on to something else. We completely understand the issue with the clot as it's placement is not a good one, so we get that something needs to be done...we're just hopeful that the something does not involve nightly shots.

Second the surgeon...we will go next Tuesday to meet with the surgeon who put Camryn's line in to discuss taking Camryn's line out. Of course this is a bit nerve-racking as the whole discussion centers on anesthesia, surgery, and losing the access point Camryn does have. But, we are ready...Camryn is ready. Her first central line she had 8 months well, now we are moving on 18 months and the poor girl is ready to be done. Granted she is scared to death of blood draws without it, but at some point this is what is next...hard, but exciting too. The surgery is an out-patient surgery so no overnight stays or anything and the recovery is pretty easy as well. We are hopeful that the surgeon says it's a go and we can schedule surgery in a timely manner for Camryn...she does so much better when things move quickly.

Third the pharmacies...Camryn's medications have not changed of late and therefore that means that her extensive blood testing on her immune system has yet to happen. Which basically means that school in the fall is highly unlikely...sigh. But we know that what is best for Camryn far outweighs anything else. Of course we'd love to get the ball rolling faster, but we also more than that LOVE our little girl healthy! Hopefully at her appointment later this month they discussion will begin on the weaning of medication process...long process, but again what needs to happen.

So the ball is rolling slowly, but rolling nonetheless...

Please be praying for Camryn as she is very nervous about the line removal and all that comes with that...and of course meeting new doctors is always a bit scary for her. We will keep you posted, but thank you for your continued prayers for our little survivor...she's amazing, simply amazing.

happy 4th...

What a happy 4th of July...we certainly enjoyed the fun of the day and were incredibly thankful that we made it a year from last year.

This year we headed to our church BBQ for some fun...it was nice to be there, weird in ways as we have not yet been able to return to normal life at church. But, very nice to be there to see familiar faces, friends and family.

After the fun of the BBQ we were invited to our sister-in-law's parents house for some good ol' traditional family fun. What a blast we had, truly one of the best times in a long time. We had so much fun...what a great way to spend the holiday!

These two are absolutely hilarious, quite a pair. The best of friends...





Camryn is quite taken with Sweet Pea, just loves her so!





And this Little Miss is thoroughly enjoying life these days...and to answer some questions: yes, she has curly, curly hair. She was not born with curly hair in fact she had stick straight hair like me, but after she lost it the first time it came back curly and did the same thing the second time. It is affectionately called, "chemo
curl".



Camryn was also the homerun slugger of the day, her Daddy is pretty excited about her swing and is hoping their might be some softball in her future.



Love this Little Miss so incredibly much...



Honestly, these kids provide smile after smile...what a blessing to be family.



Four Mikels...



Lots of fun hanging out watching fireworks...Devon's parents neighbor is a fireman and he puts on his own fireworks show, with real fireworks. They were loud, but the kids got to see fireworks up close and personal...it was amazing!





Our little patriots...



Being the history teacher/nerd I am it's so fun to see the kids enjoying their 4th of July fun...God Bless America and the fun of them growing up to love their country, I love it!

And of course I love, love, love this boy...



An amazing day, much to be thankful for in our families...a new little one C, a precious little on Sweet Pea, three crazy kids and two little boys always in our hearts.

Happy 4th of July!

distant and yet not too far away...

The past couple of days I have been mulling, pondering, thinking through some moments that haunt me still...moments that for many are long gone. You know the saying, "out of sight, out of mind." It seems through this journey that there are a lot of moments that as a mother I have tucked away for another day. Some days they catch up with me and I have my wits about me to deal with them...other days it's not that easy.

So many distant memories and moments, but they are never too far away...

Thankfully, the hard moments are less and the pace of life has a bit more ease to it. In no way does that mean that life is easy, but life certainly has been harder...much harder.

This past week has been lots of fun, feeling like the full taste of summer has taken hold of us. Thursday, we headed to the beach for another wonderful day. Honestly I think Camryn and Wyatt could just spend days upon days at the beach. They love playing in the sand, building castles, digging holes and just being little beach bums. Camryn got brave and headed down to the water with her Daddy. They stood and jumped in the ways and just laughed and laughed. Wyatt enjoyed eating some snacks with Mommy and watching his sister play. Some days I wish I could just freeze time and capture every smile, every giggle and keep it forever.

Yesterday, I had lunch with my dear friend J...she is amazing. We had a wonderful lunch and it was so nice to reconnect and just pick up right where we left off. In the evening our very good friends K,T & E came over for dinner and play time. It was great, hanging out watching the kids play and just being...it was good for my soul.

Today, Jason and I ran some errands together and had lots of fun...the kids meanwhile baked cupcakes with my mom and enjoyed some time at grandma's house. As we were mindless wandering through various stores we found ourselves in the little girl section and I said, "you know Camryn doesn't need any new clothes, but I love looking at her clothes; because I can. she is still my little girl...she is surviving."

All in all the Lord brings healing moments within those moments when distant memories surround me....

Thankful that even though distant memories come and find me, He is bigger...and sometimes that's all I know for certain.