our christmas...

Without further ado...pictures.

Here's a few pictures of our Christmas, it was beyond a blessing and one for which will go down as one of the best yet.

Me and My Crazy Cam


Camryn & Tori


Camryn Lee & Kelly Lee


***Some might wonder why we don't have any pics of Wyatt at church...well, he was fast asleep.***

Camryn & Makenna


Christmas Morning Cuddle Bugs


Camryn Lee


Wyatt Jason


Quite possibly the picture that captures our year..."Thanks Wyatt!"


The Davenport Cousins Arrive


The Mikels Gang Waiting For Presents


Camryn Lee & Peighton Hope


7 under 7


Riley.Camryn.Tori


Wyatt & His Big Cousin James


Quite a Christmas...a fitting ending to quite a year.

blessed christmas...

Christmas has come and gone for 2009...it seems so amazing how quickly it comes and then how quickly it passes. Reflecting today on the blessings of a season today and it leaves me so thankful.

Christmas Eve was spent with my family enjoying a traditional Southern meal...my Mom hails from Texas and cooking is one of her biggest talents in my opinion. So we enjoyed a very satisfying meal and company...it's seems so surreal to me that my nephews are in their twenties and my niece will be 16 this coming year. Talk about making a person feel old. I can vividly remember when they were Camryn's age and enjoying Christmas with them and now watching them enjoy it with my kids just brings a smile to my face. After hanging out for awhile we headed to church for the Christmas Eve service. This quite possibly could be one of my fondest Christmas memories from my childhood...going to church, sitting with my extended family, singing about Christmas, getting a box of candy at the end. Christmas Eve holds some of my most cherished childhood memories and it never fails that sometime on Christmas Eve I find myself right back there and I smile. We got to church and sat up in the balcony away from as many people as possible...funny how the front row of the balcony was the entire Mikels family. I love watching Camryn and Wyatt enjoy their extended family, some great memories in the making.

After church we headed back to my parent's house for more food and presents. Camryn and Wyatt were so excited and helped Makenna pass out all the gifts. They also very much were into their presents and enjoyed the fun of opening...they were incredibly blessed! All the while Wyatt gave us a play by play of each gift, just kept cracking us up with this dialogue. Later we headed home and the little ones crashed after leaving cookies for Santa and carrots for the reindeer. Jason and I had a few little things to do to prepare for Christmas morning and then off to bed we went too. Oh the fun of Christmas Eve and the coming of Christmas morning.

Christmas morning Jason make monkey bread for us, which is going to become our tradition. I feel like this year Jason and I did the best job we have done in creating traditions and memories for our family of four and I have enjoyed it. We opened stockings and presents while the monkey bread baked, then we ate and just enjoyed a lazy morning together. It was wonderful! I absolutely loved not having to race through our morning to get to our next destination. After we got ready and the kids played with some of their new toys we headed to Jason's parents for our Mikels Christmas.

Boy what a day...there are seven kids under seven so it is a full house with lots of Christmas spirit. We hung out, opened presents, ate a good dinner and hung out some more. Wyatt was in a bit of a funk, he was exhausted and just fighting a bit of a cold I think. But, he perked up for presents! Camryn had a blast playing with her cousins, she absolutely adores all of them and truly they are her best friends. Camryn and James played secret spies together and I promise I had flash backs to my days playing with my cousins and it was priceless.

We are beyond blessed this year...

Even though this year in no way went the way we expected it to, it took turns that we would have rather it not. But, we are blessed. Our families which have been a gift to us this year, walking with us through a very tough year for us. Our children who have proven to amaze us constantly with their spirit, fight and love. But as we sat in church I was reminded of Jesus' birth...

His coming into this world...into my messy life to redeem, to give me hope, to give me a future. To turn my pain, my struggles, my questions, all of it into something beautiful with him. Because only in His coming do we have the hope of being with Him and that has been my Christmas gift this year.

This year has been hard, I won't lie...there have been moments of utter desperation and despair and yet moments of great hope and promise. And to know that 2,000 years ago a baby was born to pay for my sins even before they were committed...to love me even when I am unlovable...to save me...to give me more than I will deserve...

To give me life...

I guess you could say that is our biggest blessing this Christmas...Life and life abundantly.

***And yes there are lots of pictures that I'll post soon***

day +201...

Yep, you read that right...Camryn has pasted 200 days! We are so thankful, 200 days that have been a whole range of emotions, but mostly the emotion is thankful!

Last night we went and looked at Christmas lights with some friends and their families, we truly had a wonderful time. Camryn is Little Miss Holiday, seriously this girl has event planner in her future! She loved looking at all the details of the decorations and thoroughly enjoyed the evening. Wyatt enjoyed the fun too, but he spent most of his night on the look out for the Grinch. Wyatt hates the Grinch, he is scared of him. So Wyatt armed with a flashlight was on the lookout and if he saw on he had to keep on eye on him. He was too funny!

We enjoyed the evening...I think this might be one of the best Christmas seasons we have had as a family. The kids are much more into it and they are enjoying some traditions. Jason and I are enjoying creating some traditions and enjoying the fun of family this year!

Today was Camryn's clinic appointment...since both me and Jason are on vacation we decided to both go and bring Wyatt along to see everyone. We headed out bright and early, made it to clinic is great time and saw our usual favorites of friends. Camryn was on cloud nine to have Wyatt with her. We saw Dr. Ed and he was pleased with Camryn and her progress...Dr. A stopped in to say hi and wish us a Merry Christmas. We love Dr.A, he has been a huge blessing to us! We saw Nurse Maureen because Nurse Charlotte wasn't there, but true to Nurse Charlotte form she had a Christmas gift waiting for Camryn. And Camryn had one for her too! These two have quite a bond, I love it! When it came time for labs since Nurse Charlotte was not there we thought Camryn would just do her labs in clinic and not go over to procedure center. Well, we were wrong. Camryn headed over to procedure and asked one of the nurses there if they would please do her labs...it was too cute! Sid said they would and asked her if she wanted to get her supplies together and of course she did. I stood in awe as Camryn went to the supplies, pulled out all the necessary vials, all the right colored tops, the flushes, alcohol wipes, and the stat stickers even...yep, she is in full command of her care and I love it!

We have always known that there was something unique about Camryn in that from a very early age she loved helping the nurses and being completely aware of every detail of her care. And now at almost 6 she is completely engrossed in it and you know I love that the nurses there allow her to be her. As Maureen drew her labs and Camryn chatted with her about her lumen's and their names I just smiled at this wonder I am gifted with in Camryn. She leaves me speechless.

And sitting just a chair away another wonder...Wyatt wasn't fully sure of clinic. He did not want a bracelet, he did not want the doctors to look at him, but boy was he aware of his sister and did not let her out of his sight. I sometimes wonder if he thinks she is staying at UCLA so he stays close to make sure she is coming home with him. As he sat watching all the ends and outs of Camryn's exam and listened as Dr. M came to chat I just marveled at this miracle in curtain area 4...two little kids who just amaze me moment by moment.

Dr.M came to see us and it was great to see him. He said that he wants everything to stay the same throughout this Christmas week, doesn't want to mess with anything so that Camryn has an event free Christmas, medical event that is. Starting Monday Camryn's steroids will be every other day...WOOHOO! And her clinic visits moved to every three weeks...another YAY! Camryn was happy to see Dr.M as he has traveled quite a journey with her since 2 years old...and Wyatt since he was born.

We said our good-byes and Merry Christmases and headed over to the "big hospital" as Camryn calls it. We went to the third floor to deliver the gifts we were given to donate to the Hemoc kids. Camryn was thrilled to share the gifts with the hospital, excited to give to kids who as Camryn put it, "are just like me." We said hello to some of our nurses and dropped off a little treat.

As we headed home feeling incredibly blessed by the amazing people who take sweet care of our little girl. Words cannot adequately express our gratitude...they are our heroes.

Tonight we baked some Christmas cookies and decorated them, although Wyatt had more fun eating all the decorations before they made it on the cookies.

I must admit that I really enjoy the pace of vacation this year...I don't feel rushed, but rather we are enjoying our days together. We are thankful...grateful and appreciating the immeasurable gift of Christmas.

And along the way saying many thanks for 200 plus days...

the most wonderful time of the year...

Today was one of those wonderful days during this wonderful time of the year...

Last night Jason and I had talked about maybe heading up to Ventura and hanging out at the beach for a bit, then I checked on my nephew's basketball schedule and saw that his team had a game today, then my friend E sent me a message letting me know where we could go see Santa without the rush of crowds and it was outdoors, doubly great! So those three things were options today...I really didn't think that we would do them all, but Jason said let's try it! So...

To start with Daddy made us waffles this morning which was quite a treat! The kids and I thoroughly enjoyed them...Yummy! Then we told the kids about heading to the beach and they were overjoyed! So excited! We packed up the car and headed out. Camryn and Wyatt absolutely LOVE Ventura, the sand, the rocks, the swings, all of it...so it was their little piece of heaven today. It was a gorgeous day at the beach, beautiful...





















As we were walking to the car I looked at Jason and said, "That was quite possibly the best day we've ever spent at the beach." To which he nodded, "Yes, and what a great way to start vacation." And you know I couldn't agree more...

But, the day was not over...

We loaded up in the car and drove down the 101 to Cal Luthern University to see my nephew's basketball team play. We got there during the second half which was perfect, I don't think Camryn and Wyatt are up for a complete game. Camryn loved it...she was very into the game, asking all sorts of questions about the teams and cheering very loudly..."Go Joshy's team!" Yes, she loves her cousin Joshy very much...and was quite proud of him coaching! :) Wyatt enjoyed the game, but was a little antsy...yep, he is a player not a spectator. After the game was over Camryn and Wyatt took a walk with their Joshy to see all the trophies and such...yep, it makes my heart smile seeing them love their cousins so much. But as one of Josh's players said, "it's pretty hard not to love Josh." Indeed it is.

We said our good-byes and see you soons and headed home. What fun we had! So thankful for such a fun day, but it wasn't over yet...

We got home, changed our clothes and waited for my mom and dad to pick us up to head to Pasadena to see Santa and the pretty decorations. We had a wonderful time...thank you E for the tip, it was absolutely perfect! We walked and saw Santa, the pretty tree, A Christmas Carol playing on the building...a beautiful evening, guess some wintery weather would have made it perfect, but for So Cal it was pretty near perfect!






We had a wonderful day as a family...truly perfect. It was a wonderful start to our vacation and quite possibly the best day we have had together in a long time. Today felt like *real* life...did not feel like leukemia, cancer life, but our life...

And our life today was just a blessing...

family...

Today I was reminded of a very special family that we are a part of...the VCS family. Village Christian Schools has been a family for me since before I was born, yes you read that right. My parents both worked at Village for forty plus years so I have been a part of Village literally forever! And today I was reminded what an amazing family it is...

Village is a K-12 Christian school so many of the students travel through as "lifers" or for a few years here and there. I graduated from Village as did Jason so we hail as alumni of a very special place. Village is where Camryn and Wyatt too will hopefully attend school and be loved on by some of the most amazing people I know.

But tonight it was not the teachers who amazed me, it was a group of students.

I have taught at Village for 11 years and I have had the privilege of teaching middle school and high school. Being there 11 years has allowed me to teach some kids in middle school and then have them again as high schoolers. It is quite a gift to be able to see how students grow and develop through the years.

Tonight when we arrived home a group of Senior girls had dinner made for my family as their Bible class took on the Christmas project of giving to my family. As I looked at these faces I just smiled...these were my students in middle school and again when they were in tenth grade and here now they stood as Seniors. Their love and gifts to my family leaves me speechless...

I am proud of these students, so proud. Who they have become makes me so proud...truly the Lord has amazing plans for their lives.

Thank you, to each of you. For dinner, for notes, for flowers, for gifts and also for gifts for the other kids at UCLA. Your kindness and generosity is a gift beyond measure.

Much love and many hugs to each of you...I love you!

unhooked...

So this morning I unhooked Camryn from her IV fluids for the last time...hopefully! As of right now we are keeping our fingers crossed that Camryn stays healthy and her tummy cooperates.

Camryn was super excited to be pump free...she's had it for 15 nights. So the thought of tonight "just" going to bed was welcome to her. In fact she sweetly said, "Mom tomorrow morning I can sneak in your room without having to call you to come unhook me...I'm glad I can snuggle with you again."

Me too Cam, me too!

"really awesome"...

That were the exact words of Camryn's nurse practitioner when describing Camryn's labs today. Woohoo!

Camryn did not have to go to clinic on Tuesday and so far we are staying clinic free for the week (knock on wood). So back to our schedule before Camryn's three day stint in the hospital, her home care nurse came and took her labs. I was at work, but my mom said that Camryn was quite the little helper for her nurse. Knowing what supplies were needed and even knew exactly where to go to get the extra flush her nurse needed. Yep, our little girl knows far too much about all of this, but she takes control of her care and I think it honestly gives her a sense of control over all of this.

Camryn's labs were great, awesome...her liver enzymes were well within the normal range. Her hemoglobin, white counts, platelets all were great...we are so thankful!

We are almost through with the IV fluids, only tonight and tomorrow left...we've got our fingers crossed that once the IV fluids end that Camryn continues to do as well as she is. Quite frankly Camryn is doing fabulous! She is eating well, taking her meds like a pro and being active. Yes, she is better and we are hopeful it will continue!

We never tire of good labs...week by week they are our encouragement that Camryn is doing well. She is having a few ups and downs, but really that's to be expected. This journey of transplant is never quick and easy...it's a marathon run and we are only on our first mile. :) Maybe in 26 years we'll breath easy...Camryn would be 31 then, only 3 years younger than me. Yes, I think then we might see the end in sight. :)

But for now at five we will celebrate some "really awesome" labs. As I told Camryn today that her labs were awesome she coolly replied, "Thanks!" Thanks marrow for doing a fantastic job, but more than that...

Thank you Lord for some great labs...You deserve credit for the miracle working in Camryn's marrow!

catching up...

Thankfully the last week has been quite a contrast of the week before!

Camryn has done super this past week and she is well on her way to being a 100%. She still gets her nightly IV fluids and will continue for about four more days...it's going well, not nearly as big of a hassle as I had envisioned. We added the pump to our nightly ritual and I won't lie it's pushed our nightly routine to about an hour getting everything ready for Camryn to go to bed...but, thankfully it's working and she's doing well.

We are very grateful to have our girl back...her smile, her laugh, her spirit, her everything. When Camryn is sick it just brings back so many rough memories, things just don't seem to click and it leaves our family of four just surviving...not really living. We hold our breath and all of us, Wyatt included long for the day when Cam is okay. Seeing her and Wyatt building train tracks all over the house, playing cars and making little videos on her computer just makes my heart smile...and it does me good.

I am grateful that we got through this virus before Christmas vacation, the thought of spending Christmas battling this was enough to bring me to tears. I am having a hard enough time feeling like we have taken steps backward this Christmas, so the thought of a sick Camryn just was too much. But, she is back...helping me wrap gifts like crazy, enjoying the holiday crafts she is doing with her teacher and loving every second of the holiday season. Yep, there is much to celebrate.

Wyatt is doing great...thrilled beyond belief that his best friend is back in action. Loves having his Camryn all better! He is enjoying spending time playing and last night he read me a story...yep, he wants to go to school too! Although Wyatt is very excited for Christmas, he is having a hard time understanding the "Christmas season" and opening gifts on Christmas. Not quite understanding why the gifts just sit and wait....much more of a right now guy!

Jason and I are doing well...the ups and downs throughout this journey get tiresome. We are both very excited for Christmas vacation and some days of just being and catching our breath. Last night we had dinner at our friends house and it was so nice, to be out amongst friends...it was a much needed evening out and we thoroughly enjoyed it. Thanks to M&C for having us over.

We are trying to come up with some activities for the vacation, little things to do here and there. Just to enjoy time as a family...we are excited for the Christmas season! And very excited for 2010...

Another year...sometimes I wonder what it will bring? And other times I'm just thankful for this day. Caught living in the now and trying to not worry about tomorrow...

progress report...

When I got home from work today Camryn handed me a progress report for her first trimester of kindergarten. I stood and just looked at the paper, trying to not cry...as really this is a moment that we didn't know we would get.

Camryn has absolutely blossomed in school. She loves her teacher Miss F and we are so incredibly thankful for Miss F's love and concern for Camryn. Camryn has school three times a week for an hour and a half at a time; working on letters, numbers, reading, writing, crafts and seasonal fun. She has learned much and for that we could not be happier!

When Camryn relapsed and the dream of kindergarten was broken and drastically altered I remember praying and asking the Lord to "just get us through this year". For some reason I felt as though this year would just be a holding pattern of sorts and school life really would not begin until Camryn "went" to school. Boy was I wrong...and boy has the Lord blessed our socks off! To see Camryn thoroughly love learning...to see her desire for school days...to enjoy reading and to find that she has something that is hers. Never did I imagine this experience to be what it has been. It has been perfect...perfect for Camryn.

While Camryn goes to school, Wyatt hangs out in his room playing with my parents. He enjoys watching Camryn work on her homework and loves "learning" along with her. Wyatt has grown much in the last few months as well. I guess that's what time does...just makes them get bigger and bigger.

On the medical front...Camryn went to clinic yesterday and as Jason put it was back to her old self; chatting away to all the nurses and doctors. There were no tears, just smiles and enjoyment of the social event of the week. Camryn's labs came back great! Her white count and ANC had been a bit lower last week so we were very encouraged to see those numbers back on their way up. Her doctors were most pleased to see her bicarb levels back in normal range...a sign that Camryn is doing better. Basically the past week of throwing up has been chalked up to a virus of some sort, most likely the same one that put her in the hospital to begin with. Dr.A ordered a week more of IV fluids just to play it safe and get Camryn well on her way to feeling 100%. Although these days Camryn is going a hundred miles an hour completely making up for the past week. :)

Camryn heads back to clinic on the 22nd of December and hopefully we'll take some Christmas goodies to our friends and "family" at UCLA. We are most thankful for Camryn doing better before Christmas comes...so thankful!

God is good...

He meets us...

Throughout this past week He has met us in ways that seem so unexplainable and yet so needed. I received amazing emails from friends and family...and I cherish them. Emails that caused me to consider the amazing work of my Savior...realizing that in my limited vision things this past week seemed so out of whack. And quite frankly they were, but so was I.

The Lord and I had some deep conversations...I fell asleep a few nights crying...Woke up throughout the night to pray and beg Him for understanding. At the beginning of the week I was angry, I won't lie. All of this struggle seemed so unfair to me. Why was Camryn having to walk down these roads again? Why were we having to make numerous trips to clinic? And have our doctors number on redial?

Life seemed to be spinning out of control and I did not like it one bit. We were at our wits end and it seemed that Jason and I were beginning to really fray, our edges were getting rough...grace did not seem to flow. When you've had the rug pulled out from beneath you, you find yourself doubting if any foundation is sure. The Lord kept relentlessly pursuing me...He kept making Himself known and looking back the tears fall realizing that throughout a week when I did not quite know what to think, He was here. Always...

And looking back I can see that Satan was too...he caused me to fear, to doubt, to second guess everything I know to be true. To cause me to wonder if the Lord really did care...did He?

As I sat and really thought through some things I got a message from my dear friend who challenged me to not fear but hold true to the promise that God did not give us a spirit of fear...but of power! The Lord was not to be found in my fears...He would restore, He always does.

Then today I received the most amazing email from a former student...to say I am speechless would be an understatement, his words of his walk with Christ and the role Camryn's illness has played leaves me to say...

HE meets us. HE always meets us.

As Christmas approaches and the wonder of the holiday is upon us...as I hear songs claiming "it's the most wonderful time of the year" I wonder if the world really knows why it is. He met us...

He came not in the pomp and circumstance most thought appropriate for a king. He came in a humble manger...in the filth and dirt of the earth, to a young insignificant girl and boy...He met us.

Immanuel, God with us...

And He is with us still. Through a horrible week, to a glorious night, through the tears, to the smiles...

May He meet you...as He is meeting us still.

thoughts...

This has been a rough week in our household, many tears cried and many nights spent wondering what tomorrow might hold. Camryn has endured quite a week, with moments of feeling half way okay, but then moments of utter desperation. Wyatt has hated watching his big sister sick, he has tried with all his might to make her smile; but most of all he misses his best playmate ever. Jason and I are tired, Christmas vacation cannot come soon enough. We both need some time to catch our breaths since work started again, but mostly from this past week.



Even in the midst of the moments when Camryn has felt her absolute worst she is a fighter unlike any other. Moments this week were spent with tears streaming down her face explaining that it's not fair that she has to take all these medicines, that this just stinks...and yet she does it. She knows that it is what she needs, even if it is not what she wants.



Oh, this little face who is now closer to six than she is five...where in the world did the time go? How is it possible that this coming February will mark four years of her battle with leukemia? And yet...she captures my heart unlike any other. We would not trade a moment spent with her with anything...she has taught us much and for her we are grateful.



Sometimes I wonder what a story this little face could tell...Wyatt has not had the normal experience that most three year olds do. He has watched his sister take medicines, get her nightly shots, he helps with her line changes, he really has a very limited social life...all for the sake of his sister. He has donated cord blood, bone marrow...he has loved her and loved her well. Oh this little boy brings such hope and promise to our lives, we find ourselves most richly blessed by Wyatt.



How in the world did she get this big? Today has been a good day for Camryn and in light of this past week that is a very good thing. She threw up a little this morning, but since then has been much more herself...playing, chatting, talking up a storm and yes trying to eat. Now her appetite is not anything stellar, but little by little it's coming! We are so thrilled to be seeing glimpses of our little girl back...



Three years old...so much of Wyatt's life is marked by leukemia as it was a part of our lives only four days less than he was. But yet, the Lord's most precious gift to us came wrapped in a little guy named Wy whose smile and grin says it all...this life is to be lived...and God is good, always..




Oh how these two make the ride worthwhile...yes our journey as a family of four has not been anything that we would have chosen, but it has brought us closer. There is a bond unlike any other between these two...and as their mom I could not ask for more. Yes, this is not the dream I had of motherhood; this is not what I ever imagined it to be like...but it is enough, more than enough.



These were pictures taken today at the park. For the past couple weeks I have been wanting to go to try to get a picture for our Christmas card. Normally, I have a picture or two selected but not this year. This year I struggled to think how to capture our family...as we have gone through quite a transformation in 2009. So I thought it best to capture us in the now...in December of 2009. Because as we know lots can change between Christmases...

day +183...six months

Today marks six months since Camryn's transplant! Six months...half a year...what an incredible benchmark to be at without major incident.

Yes, we've had a rocky few weeks with the fever, 3 days in the hospital and now this past week...but in spite of those bumps in the road Camryn is SIX months post-transplant! Praise the Lord!

We are so incredibly thankful to be here today...we know that there are no givens in life, especially in the life of cancer, leukemia. We know that we are not guanteed any number of days, but yet we live day by day. And today Camryn has lived 183 of them...and we celebrate and say many thanks!

Many thanks to:

* Camryn's team at UCLA - quite possibly the most amazing group of people ever. Their love for our little girl never ceases to amazed me, their care, the hours, the concern and belief they have are treasures to us.

* Our parents - for walking this journey with us. It has not been easy and they have been steady sources of encouragement for me and Jason. We could not do what we have done without them.

* Our family - the countless prayers, the countless encouraging words and for being the biggest cheerleaders Camryn has we thank you!

* Our friends - who prove over and over their love for our family and we find ourselves most richly blessed.

* Our blog world - thank you to so many of you who we have never met, but have loved us so. We thank you for the prayers you have spoken on behalf of Camryn.

* Our Savior - without whom none of this would be possible. We thank you Lord for these six months...for the daily walk you take us on and for taking us by the hand five minutes at a time. Day by day, moment by moment...

We are humbled to be here...we are excited to be here...we cannot wait until six more months...

****A little update too****

Camryn has kept her meds down today! And she ate a little dinner and kept it down! Woohoo!

rough patch...

So for the last few days we have hit a major rough patch at our house...

Camryn has not been doing all that well, her patch does not seem to help as it appeared to at first. Between Monday and today we have experienced moments when quite frankly I would just like to throw in the towel and forget. It has been rough.

She is still is experiencing nausea, vomiting and now add to the mix diarrhea...yep, it's a pretty picture at our house. So we called the doctors and made the trip to clinic today to get some IV fluids and labs. At clinic Camryn was much more herself, it was almost as if the IV fluid was perking her up...she was great with Berkley and Dr.A for which I am thankful. Her labs came back great so that was reassuring and her metabolic panel was a little off. Dr.A feels that Camryn is acidic and therefore her bicarbonate is low...so the IV fluid should help. He said that right now we are fighting a downward spiral in that feels acidic makes you feel bad and therefore you do not want to eat, and yet the thing that helps is eating. Dr.A feels strongly that we are dealing with a virus, probably the same virus that put Camryn in the hospital and now it is working itself out of her system (runny nose, cough, stomach and diarrhea). So that's where we are.

Dr.A ordered a home IV pump so that we can give Camryn IV fluids at home for the next few days in order to help her feel better and then hopeful as the virus runs it's course.

We would appreciate your prayers as we navigate this road, I won't lie it is absolutely maddening and we are tired. All of us...

Please pray for Camryn...that whatever is causing this will be done and she would feel better, that her strength would return and that she would be our happy girl, feeling better soon!

Please pray for Wyatt...he is sad to watch his big sis go through this, it bothers him so when Camryn is sick and has to go to the doctor.

Please pray for Jason and me...we are tired, pushed to our limit and just battling thoughts that we would soon like to forget. It is a harsh reality living here and right now we would ask for the Lord's peace and grace for each day.

Thank you for your love, support and prayers...we are so thankful.

a very powerful thing...

A mind of a five year old is a very powerful thing. This is what we have learned over the course of the past three days.

Let me catch you up...

On Friday morning Camryn really didn't eat much breakfast which was not surprising as now with her steroid lowered; her appetite is much smaller. I gave her her 8:00 medicine as she calls her cyclosporin and about 30 minutes later she threw up. I was frustrated with myself as hindsight I knew that she had not eaten enough. We tried to get her to eat a bit more but, that was not happening. The battle was on.

Over the course of Friday, Saturday and Sunday we had moments of no problem eating and meds to horrible moments of tears, throwing up and just refusal of taking meds altogether. Yes, it was a horrible three days. Both Jason and I were racking our brains to figure out if it was truly Camryn being sick with a stomch bug or her mind. I will admit there were moments when I could swear it was her mind...and then moments when it seemed to be that she was sick. Either way by Sunday night it had gotten to the point where she was going to miss meds and there was no making them up at this point.

We made the call...the dreaded call really.

Dr.A called us back. Jason talked with him about her personality, her demeanor, her fever or lack thereof...thankfully, we did not have to rush Camryn down to the ER and were able to make an appointment at clinic today. I cannot tell you how thankful I was when we could sleep in our own beds and go to clinic today. Dr.A said we needed labs and they wanted to take a look and make sure that maybe her GVH had not gotten any worse and maybe moved into her GI system.

Jason and Camryn headed down this morning and I won't lie I was incredibly nervous.

At this point I will admit that whenever Camryn hits one of these bumps the fears, worries and frustration reign supreme. It is hard for me to stay level headed, my mind goes to that place of absolute worst...relapse. That all of these little things is a sign of something much worse. I cried many tears, I admitted to Jason some of the greatest fears I have with Camryn...I screamed at my Lord wanting so desperately to understand *why*. Quite honestly I did not have a pretty three days...

At clinic today Dr.A and Berkley saw Camryn and it was determined that she was fine. Her labs looked good, she looked good...she did get some IV fluids for dehydration for throwing up. They hung out in our all too familiar procedure center with nurses we love so much. Dr.A determined to prescribe Camryn a nausea patch; she wore one in the hospital throughout radiation and chemo. It worked great then...so he was hopeful that maybe that would help her get over her fears and eat and take her meds again.

After they finished up at procedure they went to the pharmacy in the big hospital (as Camryn calls it) to pick up the patches. While waiting they ran into on of our most favorite doctors Dr.K (she has been with us since Feb of 2006) so she knows Camryn well. Dr.K asked Jason why there were there he explained what was going on with Camryn and true to Dr.K style she sat down, put her arm around Camryn and spoke to her so sweetly. Telling her that the patch worked sort of like magic to keep you from throwing up...she was awesome. Doctors like Dr.K are so unique and special, we thank the Lord for her.

Jason called me to let me know and my heart smiled, but the fears don't just leave. I got home and Camryn was a little better, still not a 100% herself. We got her to eat a little bit of lunch and take some meds...she did ok. A little later she took more meds and did well. Ate some dinner and took the 8:00 medicine and did super! She's much more herself...playing, laughing, singing; just being herself.

This journey is a very powerful thing...life has changed dramatically. In a heartbeat it seems things could change and it is hard to live in that all the time. Never quite trusting the ground you are walking on, fearing the bottom falling out. I know I should live in the realities of the Lord's plan and I am. But some days He and I have heavy conversations of reality...of being real. Because this is real...

We are parents to a little girl that has a much longer list of issues than most and I know we are not alone. I know that the Lord is carrying us through...but that doesn't always mean it is pretty and neatly tied up in a bow. It gets messy, it gets ugly and yet it gets beautiful because of Him.

I read a quote yesterday that said something to the effect that "God is in the mix with us." And He is. He knows that struggles of my heart to make sense of all of this, to try to live in these realities that I find myself. To be a solid, steady place for Camryn and Wyatt too. To be real with this...

Because cancer is a powerful thing...but Praise Be To Jesus that He has overcome! Maybe not here and right now, but when the story ends He wins and that is a powerful thing.

Even in the moments when defeat sets in.

many thanks...

The very fact that a man is thankful implies someone to be thankful to. ~ John Baillie

My friend in Tennessee posted that yesterday morning and I thought it was so great I borrowed it...

Thanksgiving seems to be something that we should be doing daily...moment by moment, expressing our thanks for the many things that the Lord has blessed our lives with. And maybe saying thank you for the many things that He has spared us from. But, it is amazing to have a day set aside to "thank" Him, to spend time with family, to celebrate, to be content and yes of course eat.

Yesterday we spent time with my parents at there house, my mom loves to cook and Thanksgiving meals are some of her finest. Now I will admit (and I get much grief for this) I do not like turkey, therefore, the food of thanksgiving has never been the draw for me. When I was younger it was time spent with my family, cousins, aunts and uncles, grandparents...yes, that was what Thanksgiving meant to me. And you know...I am beginning to see in my children a love for the holiday for the very reasons I love it and that is just so cool.

In the afternoon we headed out to Jason's sister's house to celebrate with the Mikels side. Boy did the kids enjoy it. They loved seeing their cousins so much...honestly I think we spent a majority of our evening just watching the kids enjoy one another. They Mikels kids are quite a bunch and really I am so thankful that Camryn and Wyatt have the cousins they do. What an amazing blessing it is to watch them grow up with their cousins local, amazing friendships they will share.

Now, it is the day after Thanksgiving and we are enjoying ourselves. The Christmas tree is up thanks to Camryn's prodding and Wyatt was right there with her prodding us on. The house now is very festive and it's fun. More and more watching the kids enjoy the holidays I realize what a gift they are...

I think to sum it up the best I will quote Camryn's "turkey of thanks"...

* My mom and dad
* My little brother
* My teacher
* Food
* My papas and grandmas
* Jesus for making me better

Doesn't get much better than that, does it?

when the tears fall...

Honestly last week hit me like a load of bricks on Sunday...I've struggled to know exactly how to put my thoughts into words exactly, and I guess sometimes I feel that I've found it and other times that the words are escaping me. Either way a ton of bricks fell and little by little I am digging my way out.

I guess it comes with the territory, but being back in the all too familiar brings back a flood of memories that are just heavy for one's heart. I have heard that smell is a strong sensory emotion and I cannot deny that. Every time we find ourselves back on the Hemoc floor the mere smell of the soap for Camryn's baths can bring me to tears. I vividly remember bathing her during her first transplant her little body; two and a half years old. So little to have to be enduring all of this. And I can vividly remember bathing her at five years old, her hair starting to fall out and thinking she is too little to have to be enduring all of this...

You see anytime we walk the hallway, anytime we pull into the parking lot, anytime we drive over the hill; simply anytime we deal with Camryn's hospital life the memories flood in and my heart sometimes just is overwhelmed.

And even in the midst of the tears I have a hard time understanding...I really do not like all of this. I wish that when Camryn got a fever I could treat it like most parents do, give her some Tylenol and wait it out. I long for a time when Camryn was like most kids I know, when she did not have these realities to live with. Yes, Camryn lives within these realities well, quite honestly I wonder just how in the world she does it. I wonder if she is just blessed with a spirit that can understand things that even I don't. I wonder if maybe the Lord just walks her through life in ways that leave me speechless...

This morning was one of those moments...

Camryn headed to clinic and even though I knew she did not want to go; did not want to be down there again after all she was just there for three days last week...she went without a fight, without a fuss and did what she does best, walked through the moment with grace. Jason headed down with Camryn as I had already missed three days of work last week and we are trying out best to even out of days missed. As they left I just felt a bit of my heart ache that this is her life...and so badly I wish this wasn't so. I wish she did not have to *deal* with all she has too...seems so unfair to me.

A little while later my phone rang and it was Jason with Camryn chatting loudly in the background...her steroids were lowered again!!! She was so excited, plus she was passing along hellos to me from the nurses and doctors she saw today. Yep, she did great at clinic and got to see her *favorites and friends*. Dr.M was pleased to see Camryn and felt that she was doing very well, he was happy that she seems to have knocked the fever, but still has a little bug left over (a cough and a watery eye). Jason asked about going to the Hemoc Christmas Party next week and Dr.M said we could make a cameo appearance for a quick bit and then leave...so we will. We will be able to say hello to everyone and hopefully see a few friends and then head home early, which lately is the way it is.

Camryn is continually doing well...GVH rash is still there ever so slightly, but not spreading or getting worse. The GVH is welcomed, as Dr.K told Camryn today, "GVH is the key for curing the leukemia." And that is a hope we are clinging to ever so tightly.

The holiday season seems to bring tears more readily than others...maybe because last year at this time we were out in the world for the first time at Christmas and it felt so good to somewhat put leukemia behind us. And now a year later we are fully immersed in the leukemia world again...funny how things change so dramatically in a year or even a day around here.

Because the tears fall...

I've had questions, without answers
I've known sorrow, I have known pain
but there's one thing, that I'll cling to
You are faithful, Jesus You're true

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

in the lone hour of my sorrow
through the darkest night of my soul
You surround me and sustain me
my defender, forevermore

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

and I will praise You, I will praise You
when the tears fall, still I will sing to You
and I will praise You, Jesus praise You
through the suffering still I will sing

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

oh yes, You are good to me
You've always been good to me
so trustworthy

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

and I will praise You, and I will praise You
when the tears fall, still I will sing to You
(I will sing to You) I will praise You,
Jesus praise You through the suffering
still I will sing

how faithful and true
sustain me through and through
You are hope and truth
You're my spring of living water
You're my spring of living water

in the lone hour of my sorrow

who springs never fail
be faithful and true
like...
like a spring it never fails
you're my spring never fails

~ Newsboys

I almost wish that the tears would not come so often...and yet when they do they seem to provide some healing. The Lord is faithful and true even in the midst of the moments that I do not understand...

And I know there will continue to be moments throughout our journey when the only response is tears...and many times those tears are happy and thankful tears and sometimes they are confused, grasping and searching tears.

When the tears fall, I am thankful He is there to wipe them...

weekend happenings...

After spending three days at the hospital this week we were looking forward to our weekend together...the little blessings really mean the most. And being home together is quite possibly one of the greatest blessings. We are thankful to have us all home...none more than Wyatt I think. Poor little guy really had a hard time the days that Camryn and I were gone; breaks my heart that these are his realities too. Thankful that there were lots of hours spend playing this weekend...lots of smiles and lots of hugs.

Saturday was spent with Jason and I running to the grocery store while the kids hung out with my parents...Camryn had missed going to Grandma's house so it was nice to for them to spend some time there. Jason and I enjoyed our few moments shopping, it was nice to catch up after our three day whirlwind of hospital life. We chatted, laughed and talked through some holiday thoughts. The afternoon was spent watching college football and just hanging out...whew, what a much needed breather. It was a wonderful Saturday...so thankful!

Sunday...I must admit that Sundays are very hard days for me lately, I think it just makes the realities of isolated life that much more pronounced. Throughout the week isolated life is there, but it doesn't seem to be so glaring, but Sundays; well, there is no escaping it. I really miss our Sunday life...church, friends, social outings and such, I miss that. So lately Sundays have been hard; but I know it's bound to happen...especially after three days of being thrown back into the hospital world.

But today we cleaned the house...and now I'm enjoying it immensely! We also wanted to get things cleaned in preparation for Christmas decorating soon. As you might know we have Little Miss Holiday Spirit in our home so as soon as Thanksgiving is over...she's ready to bust out Christmas! So that's on the list for Friday and Saturday...

Hope you all had a wonderful weekend...and enjoy your Thanksgiving week!

home...

How sweet it is to be posting this from the comforts of our home. Camryn got her release orders today so home sweet home it is for us hopefully for long time!

The doctors came in this morning with news that so far Camryn's cultures were still negative. They would call that lab at 10:00am to confirm negative results as that would mark 48hours...so we waited. Luckily Camryn slept in until 9:30; because once she heard the possibility of 10:00 she was impatient as can be. As we waited it became clear that the doctors would discharge us if the cultures had remained negative...and as of 7:00 they were negative and it was hard to think that in 3 hours something would show up, but stranger things have happened.

As Camryn and I waited she played on the laptop and I read watching the clock move ever so slowly...finally Dr.C came in and announced, "going home!". Camryn got the biggest grin on her face, she was thrilled. I quickly called my dad to come get us, as keeping a car at UCLA at the rate of parking just seems a bit insane. After I made the call I started packing up the few things we had there. Camryn's nurse came in with discharge papers and I signed off, thankfully we did not have to wait for meds and such because Camryn has a full round of prescriptions at home. Her nurse was great helping us gather any supplies we needed for line changes and such...it was great.

My dad made great time and at 12:15 my phone rang and he was waiting for us. We said our good-byes and walked down an all too familiar hallway to the door that leads to the outside world. Camryn was thrilled to be *out* and when she saw my dad she was just happy as can be.

Home...

Camryn and Wyatt have been going strong all afternoon and quite honestly you would never know that she just spent 2 days in the hospital. Even at this moment they are playing hard and going strong! Boy do they miss each other and make up for the days apart a 100%.

We are thankful to be home...so incredibly thankful! So thankful that it seems that it was only a common cold and nothing more serious than that. We know that any fever will lead us back there, so we are praying that no more fevers are in our future for awhile.

Camryn did great throughout it all, but truly she knows better than most that there truly is no place like home.

realizing this is what it is...

Today has been a good day for Camryn, she's been her normal self and it has been so great. She is enjoying being amongst friends, yes her doctors and nurses are her friends...she hates being away from home, but she does enjoy seeing her familiar friends again. I won't lie, I do too.

A weird thing happens when you spend over 3 years with people who care deeply and take such sweet care of your little girl...they become a community to which you owe much. I do not like living hospital life, but I do like what hospital life has given me...it's a weird balance, a weird reality.

Camryn's cultures continue to be negative, yay! Her nasal wash also came back negative on all the respiratory tests: seasonal flu, swine flu and RSV...so thankful. She is doing well with the IV antibiotics and as the nurses say Camryn is on the "big guns"...the broad sweeping, powerful drugs to knock out anything and everything Camryn could possibly have. As of right now Camryn has been fever free since yesterday morning at 10am...so almost 36 hours, only 12 more to go and we'll hit 48 the magic number.

Tomorrow we should hear the official word to get discharged...hopefully! Thank you for your thoughts and prayers...we are so thankful for them.

Throughout this hospital stay I've noticed something about myself...settling on that this is what it is. As much as I want to have this not be our life, it is. As much as I would love to never be here again, I cannot escape that this could be a very real possibility. As I was talking to Dr.A today he mentioned that right now where Camryn is at and her being a relapsed transplant patient they are going to be extra cautious and careful...and I get that, really I do.

There is much peace found when you realize that this is what it is...the Lord will meet us here no matter what. He is here...always. I know I can fight this with everything I have, but really what is the point. Our lives are different than most, but there is a comfort to be found on a lone hallway at UCLA...a group of doctors, nurses, parents and kids who fight what it is with everything they've got.

Yes, these are the true heroes...and what it is, is a precious one sleeping in her bed tonight.

Love you Camryn Lee...so proud of you.

mercies are new...

A new day is upon us and thankfully Camryn had a fever free night. Praising the Lord! She slept super well and got some much needed rest...thankfully she does not have too many interruptions throughout the night.

Right now we are just hanging out, the doctors should be rounding soon and we will get an update on the cultures and such. Right now Camryn is doing well, no fevers so that is a huge blessing...she does have a little cough and a little runny nose, but otherwise she's doing well.

In a few minutes we'll do her bath and get some clean clothes and wait for Grandma Mikels to come...so thankful our parents are close and willing to come give Camryn some company, she enjoys it.

We are doing alright, I had a hard night just feeling like this is a cycle we will never escape and it's overwhelming at times. I really wish at some point a reprieve would come, but for now this is what our life is. Never too far out of the fray it seems...

But, as I opened the blinds today I was reminded that His mercies are new every morning...

And for today that is enough.

never too far away...

Today was one of those days when the realities of Camryn's life surface and there isn't much you can do about it. As I posted earlier Camryn woke up with a fever...101.5. Not too high; but high enough to warrant a call to the Peds Hemoc doctor on call. Jason and I both knew that with that call inevitably meant a trip down to UCLA. As we were driving down Dr.W called and said that Dr.A had said to go straight to the ER to be admitted...we had been hopeful that this visit would just be a clinic visit, but once we heard ER we knew...admitted.

So at 9:00am we arrived at the ER and thankfully it wasn't too crowded with lots of flu like symptoms...and because of Camryn's history they move and they move fast in the ER. We got a little room in the ER off in a corner, away from the general population. Our care in the ER was good, super nice nurses and we especially appreciated how quickly things were moving.

Of course once we got settled in it didn't take long for Camryn's team of doctors to find her...Dr.A, Berkley and Dr.E came in and it was so nice to see their faces and know that Camryn was on their radar. Blood cultures were taken, a chest x-ray, urine cultures...and the waiting begins. According to the doctors it takes 24 hours to get a preliminary reading off the cultures and 48 hours to get a more definite reading.

So we waited in the ER for a bed to open upstairs...at 6:00pm we headed upstairs and thankfully now we are settled in our room. A few familiar faces have stopped by to see Camryn and she has enjoyed that. I like that we are now with Camryn's team and I find a huge amount of comfort there.

Camryn has been fever free since 10am this morning and really she is doing super well...hanging in there. Hopefully 48 hours of antibiotics will do the trick and this will be a minor bump in the road.

All day today I just felt as if these realities are never too far away...there is no where we can run, hide or even go to escape them. They are...and it is so hard. In one moment our lives were thrown into our hospital routine...quickly making calls, submitting sub plans and all of those things. I guess there are times I feel like we are moving well in one direction and then here it comes...realities that are all too familiar.

Well, I better go...got a date to watch the new Tinkerbell movie with a really cute little girl who has endured more than most.

Please continue to pray...48 hours!

fever...er...waiting

As I write we are hanging out in the ER with Camryn. At six o'clock this morning she woke up with a fever...which is no good. We called the doctors and headed down to UCLA.

Camryn is admitted, but we are waiting for a room upstairs...hopefully it won't be too long. Camryn is doing well, she is sleeping now while meds are running. We are so proud of her...she does so well I cannot believe it.

We will keep you posted...we are hoping after some IV meds she'll be lots better! And we'll be home soon.

Please pray for Camryn...and Wyatt too. He cried as we left this morning knowing all to well that Cam may have to stay.

membership...

Last night I realized that we have a lifetime membership to a group we would have never chosen, but cannot imagine our lives without...childhood cancer.

Jason and I went on a date night last night to hear Dr.A's band play in Santa Monica. We had heard some of Dr.A's music while we were in the hospital, so it was quite fun to get the invite and go. Many thanks to T and Ali for watching the kids for us...we certainly appreciate it!

As people were beginning to arrive it became obvious that there was a common thread throughout the people being introduced by Dr.A...parents of children with cancer. We were all sitting together, chatting with each other, recognizing faces and also enjoying the company of some of the nurses too. Jason and I truly enjoyed our evening, but many thoughts ran through my head that to any one outside the *group* we all looked like a group of work friends or something like that. No one would ever guess that we are a unique group, some whose children are doing well and some whose little ones are enjoying the fullness of heaven. It was good to be there...good to realize that we as a family are not alone, yes no one in our immediate friendship circle has a child with cancer. But, there is a world of connection at UCLA that I am thankful for.

This was never a road we would have chosen to travel, none of the parents would ever choose this...but as I sat smiling and laughing with nurses who mean the world to me and listening to a doctor sing who has done more than most I was content. Yes, I would trade a lot to not be living this reality...I would love to go back in time to and erase the dreaded word leukemia and cancer from our lives. But that is not to be.

So, we are learning to live where we are and realize that we are not alone...there are many of us walking through our daily lives, believing and hoping for our children. And there are many who are learning to live without their children....my heart aches for them in ways that words cannot describe...today three years ago a beautiful young woman just a few doors down from Camryn lost her fight. And today my heart is heavy for her mom, her family and the lives she touched...I never officially had the pleasure of meeting her, but C touched my life in a way that I am forever grateful for and her mother too.

You see it is a group, a club and our membership is marked by tears, fears, joys, hopes and so much more...we wear no badges, or signs; but we are a larger group then most know. For it is now walking close to four years in this group that my heart is larger, caring more deeply and much more aware of a group of people and children fighting, believing and hoping.

And the membership lasts a lifetime...

by now...

You faithful blog readers know what Tuesdays are...and if you are really on top of things you know that today was Camryn's clinic appointment. :)

Yep, Camryn headed out bright and early with her Daddy this morning...honestly this girl is just the greatest, most amazing kid ever. Really, I think she is. She bounced out of bed, no tears, no fight...just I'm going to see the doctors today and when I get home then I have school and then I'm going to Grandma's house for dinner. Honestly, this girl is a planner through and through, wonder where she gets that? :)

As I said good-bye to Camryn and Jason again my heart just stops for a quick second. Ever heard that Kenny Chesney song "There goes my life?"...sometimes it's really as if I'm watching a little piece of heart drive away each time. As I turned around to head in the house there stood another part of my heart...my precious boy, Wyatt. Yes, over and over this morning as I prepared for my day I was thanking the Lord for these two blessings packaged in a really great, amazing, miraculous story. I feel a sense of awe and wonder when I think of my two kids...perhaps the most perfect, greatest gifts I have ever been given. And always I'm reminded that I hold them loosely, because they are the Lord's before they are ever mine.

I got to work and went about preparing for the day...I was a bit anxious because I was going to try an activity with my classes and I hoped they would participate well and it would work. But, more than that anxious to hear those words I long to hear every other Tuesday..."She's doing great!" As I was finishing up things in my classroom my phone rang and on the other end a darling little voice announcing..."No more steroids at night!" Can you believe it? At clinic Dr.A decided to discontinue her nightly dose of steroids and begin the wean of her morning dose. On Friday we lower her morning dose and then again next week and hopefully, fingers crossed Camryn will be completely steroid free soon. Most likely her doctors will keep her on a low every other day dose for a while just to keep the GVH in check. And you know I'm okay with that, because even throughout the weaning process so far we are seeing a slight decrease in the side-effects of the steroids.

Camryn's doctors continue to confirm that she is doing great, looks great and really is doing fabulous for being five months post-transplant. They are pleased that her GVH is under control and yet present. That her liver enzymes are well within control. That her body is responding well to cyclosporin. Overall, that Camryn is doing all the things she should be at this point...and doing them well. We got her labs this afternoon and again we are grateful for great numbers...honestly these labs are just such a boost for us. Her numbers are strong...and not really wavering which is fabulous! And to think Camryn has held these numbers without a transfusion post-transplant...Good Job Wyatt's marrow!

Once Camryn got home from clinic she had a quick lunch and then Ms. F came for school today. Camryn was super excited to have a doctors appointment and school all in one day...a busy little bee we have. I was lucky enough to make it home to observe and listen to Camryn and Ms. F interacting "doing" school as Camryn calls it. What a joy! Camryn absolutely loves school...she loves it! In fact the other day Jason and the kids dropped me off at Village for an open house and Camryn responded that she is in kindergarten, not kindergarten at Village; but sort of. And you know what? She didn't complain, or even comment that she wished it were different...she has settled into her normal, and it fits her and she is blossoming in ways that neither Jason or I expected!

Sometimes I really think that by now I should not be surprised by the variety of things that the Lord continues to bless our lives with...that by now I should be more confident, more assured, more...well, more content. I guess after this journey, a pro-longed one at that maybe I should have learned how to be all those things and more...and truth is I've grown a lot and yet there is so much more to learn and grow through...

How do we get to the morning, to the sunshine, to the joy? There is only one way. By waiting for it. We can't hurry the dawn, no matter how anxiously we pace the floor or how impatiently we watch the clock. And so the question is not do we wait or not wait, because waiting is all we can do. The question is, HOW will we wait? Will we wait well...or will we wait poorly?

~Ken Gire

By now...we have waited, and days we waited well and days we have waited poorly...and thankfully we are given grace to begin again and again.

seasons...

Yesterday we headed out to my sister's house to celebrate my niece's 15th birthday...we had a wonderful day! Camryn and Wyatt absolutely love my sister and her family and thoroughly enjoys time spent with them. They had fun walking outside, watching the little cottontail bunnies, feeding the crows...and just enjoying a little bit of country living.

As we were swinging on the porch swing looking out over the valley I noticed the trees changing color and the beauty of the autumn sky...I was struck by the seasons.

Last time we were at my sister's it was the heat of summer, so hot that you really could not enjoy time spent outside as you would practically melt. And now, it's beautiful...

Seasons...

This time last year Camryn was beginning to show signs of sickness coming on...we had made various trips to the ER and clinic and it was clear that her body was battling something. Little did we know then that the something was leukemia. A year has come and gone and with that the seasons...

I never tire of the analogy of our walk with the Lord being like seasons...because it really is. There are moments of pure delight, fun, carefree spirit and just a zest for all that comes. There are moments of preparing, for the storm clouds seem to be forming, a chill is in the air knowing what lies ahead. Then the time of cold, lonely, feeling long, dark...but, yet knowing it will not, cannot last forever...because then comes renewal, a chance to begin again. Yes our Savior walks with us throughout these seasons...as we walk with Him. I love the walk, I love the journey...I have grown and yet, I still am.

He is no where near finished with me yet...there are still days I want to scream at the sky, wanting answers, wanting reasons. There are days when the load light it's almost as if, it is not there at all. Then the moments come when I can almost sense we could be starting again...

Every evening sky, an invitation
To trace the patterned stars
And early in July, a celebration
For freedom that is ours
And I notice You
In children’s games
In those who watch them from the shade
Every drop of sun is full of fun and wonder
You are summer

And even when the trees have just surrendered
To the harvest time
Forfeiting their leaves in late September
And sending us inside
Still I notice You when change begins
And I am braced for colder winds
I will offer thanks for what has been and was to come
You are autumn

And everything in time and under heaven
Finally falls asleep
Wrapped in blankets white, all creation
Shivers underneath
And still I notice you
When branches crack
And in my breath on frosted glass
Even now in death, You open doors for life to enter
You are winter

And everything that’s new has bravely surfaced
Teaching us to breathe
What was frozen through is newly purposed
Turning all things green
So it is with You
And how You make me new
With every season’s change
And so it will be
As You are re-creating me
Summer, autumn, winter, spring
~ Nichole Nordeman

Through it all...maybe He is re-creating us, our family. Teaching us that He will carry us through every season...

super cool...

Every other Wednesday Camryn has a home health nurse come and draw her labs; this saves us a trip to UCLA so we are very thankful. The home nurse is super sweet and Camryn has taking a liking to her so drawing her labs is a quick and easy process.

Later that evening I emailed Camryn's NP to ask if I should call tomorrow and check on any med changes, as I was secretly hoping maybe, just maybe lower steroids??? Can't hurt to hope and check in, right? Camryn's NP emailed me back and said that we were really on top of things as Camryn's labs had just came through the fax...she would call in a bit once they took a look at them. Well, they called and...

Camryn's labs look...FABULOUS!!!

All her levels are holding nice and strong, her NP talked me through the usual suspects of hemoglobin, hematocrit, platelets, white cell count and ANC; all of which were great. Then she talked through Camryn's liver tests...they are coming way down...super great, super wonderful!!! She would call the doctors and see if they wanted to adjust meds at all and then they would get in touch with us.

We waited not too long and Dr.A called and explained that we were to LOWER the steroids...woohoo! Like I've said before Camryn is on a very slow wean, but any lowering means that we are getting there...the day without steroids. So Camryn is on 3mls in the morning and 1.5mls at night and if nothing changes then tomorrow it is 3mls in the morning and 1 at night! Honestly, I cannot wait until the steroids are done and the side-effects start to dwindle...so hopeful!

Camryn is way excited too, she totally noticed that her syringe had less "pink medicine" than it normally does, yeah not much gets by her.

It's super cool...Camryn is doing well and everyday we are one step further from transplant and just given one more day.

five...

Five months ago Wyatt gave Camryn his bone marrow...

Amazing.
Crazy.
Hard.
Blessed.
Impossible.
Tear-filled.
Hopeful.
Thankful.
Forgettable.
Memorable.

The list really could go on and on forever the range of emotions that can be found on any given day throughout these past five months. Sometimes I cannot wrap my mind around all that has happened in the past five months and yet time seems to just stand still as well.

Five months ago we really, honestly did not know where transplant would take Camryn...our family. We were told to expect a much harder road and in ways it has been much harder and in ways it has been exactly the same. And yet five months is a significant amount of time to watch Camryn's marrow begin again...

The first time around maybe we were naive, no we were. We had no idea of what all this really meant...and now we do. Five months and doing well...five months and no fevers! Five months and some GVH mixed with high, strong numbers. Five months of taking each day as it comes...

There are fabulous days, good days, blah days and really hard days...but thankfully throughout each day there is a little survivor and a little donor who five months ago fought hard again...

Praying that the outcome of this transplant far outweighs the first one...praying that Wyatt's marrow and Camryn's GVH just wreck havoc on any and all leukemia cells that might rear there ugly head. Someone asked me "When are you out of the woods? When can you stop worrying about leukemia?" The answer quite simply is we are never out of the woods, in fact we live in the woods so to speak and leukemia, cancer will always be an ugly word...

But, for the past five months we lived without it...and my hope of all hopes is that Camryn never has to live with it again!

Grateful for five...hopeful for many, many more.

day +151...

Camryn has made it to the half way mark to her next big benchmark day +300...and Wednesday marks 5 months since her transplant!

WOW! Time is moving rather quickly...

The other night while changing Camryn's line she asked how long she had her line...we counted it up together and it is 8 months. She had her first line for only 8 months...and now we'll have this one longer. It is amazing to think how far Camryn has come in the past 9 months and really more importantly the past 5 months.

The other day I went back and read through a bit of my journal from her first transplant and I was drawn to an entry about my baby boy Wyatt who was about 6 weeks old...I cried as I read the words trying to explain to Wyatt why I was not holding him all day long. Why I had to leave my brand new baby with his grandmas? I felt a guilt unlike any other...and the tears just flowed freely as I read. Because in October of 2006 the future seemed so unknown...

And now at the beginning of November 2009 the future really isn't much clear. But what is...

Camryn is 5 and a half...Wyatt is 3...

We've come a long way since November of 2006...We've come a long way since February of 2009...We've come a long way since June of 2009...

A 151 days to be exact.

But who's counting?