learning...

I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next.

~Gilda Radner

It's almost February...and this is where I find myself. Realizing that I too wanted a perfect ending, but learning now that they don't exist. Beginning to really wrestle with some memories of these past four years...incredibly hard to believe it has been a four year journey. And yet, we are no where near the end...

This week has been difficult...

My aunt has leukemia as well, she has been battling it in an amazing way...this week she was struggle with her marrow not making blood. She had an aspiration this week and we await the results. As you can imagine this all just hits too close to home...and it's been difficult.

The insurance fiasco...feeling helpless and yet fighting with as much as you had for Camryn. To realize that there is much left to fight for, that our little girl deserves the best treatment possible and that she needs our advocacy.

Starting a new semester at work...means that the calendar is inching ever closer to the day I walked away a year ago and never came back. It is surreal to look in my lessons plans and see everything stop; but be hopeful that maybe this year will be different.

But I'm thankful that we are learning to take life as it comes, to try not to get too far ahead of ourselves. To try to make the absolute best of where we find ourselves because every moment is a gift. Are there things that trigger the tears and are difficult to see, experience? Absolutely, I would be lying if I said otherwise. But, I am learning that with every missed moment I feel there are a hundred others given. I just have to be ready to experience the moments given for what they are now. Because for right now the view is hazy, but quite honestly I don't know in the muddy waters of leukemia if the view ever fully clears. I believe we are just learning to breath deeply and hold on and find hope right now.

Because we don't know what is going to happen next...

Today we headed to our family's favorite place, the beach. The kids thoroughly enjoyed building sand castled and just playing in the sand. It was a beautiful day...the water was very rough, so Camryn and Wyatt were content to watch from shore. But, it was a breath of fresh air...we breathed deeply and we let life just be.

Because sometimes that is the best you can do.

good news...

Today did not disappoint...

The call came this afternoon from our insurance company that they were overruling the denial and granting our appeal. So, Camryn stays with her doctors and nothing changes far as her care now.

Thanks for those of you who have been praying for us, it's been a very crazy week. We are so very thankful for the "yes" we got today. To even begin to imagine moving Camryn to a new hospital with new doctors and nurses was almost too much to bear. We are so thankful and grateful!

quick update...

Yesterday was quite a day spent trying to navigate the insurance fiasco, crisis, mess; really pick any adjective. We made the call to our pediatrician who was furious about the denial and said that the group had changed management, etc. I spent time searching via the internet for potential primary care doctors if it comes down to the fact that we must change groups in order to stay where we are at UCLA.

When I got home from work there was a message from a Sr. Case Coordinator at our insurance company who is handling our appeal. I thought she would do the usual it will be 45 days and such; but you know what? She said that they would have an answer for our appeal TODAY! Guess that is pretty expedited! I gave her the further information she needed and she said she would be in touch...gave me some hope.

So that's where we are...waiting to see if the appeal is accepted or denied. If it's accepted all stays as it is with the big insurance company taking on Camryn's case; if it is denied we switch groups and go from there.

Thanks for the encouragement...the thoughts and prayers! I so appreciate them!!!

sigh...

Today has been one of those days when in a few hours things go from good to bad and you're not quite sure what happened?

Camryn had school this morning and that went great! Wyatt enjoyed reading books with Grandma & Papa, the books were new ones that Papa graciously shared his gift card to buy. When I got home all was well...

We then headed over to hang out with our friend T & E...we absolutely love time spent with them. As the kids played and played with E; T & I got to chat and it was wonderful! I cherish time spent with E too, she is coming to the age Camryn was when she got sick and truthfully I almost can't believe it. It will be a joy watching E grow and I love, love, love her mommy and daddy too!

As we headed home I called Jason to let him know we were on our way and that's when the good started moving to bad. Jason explained that we got a letter in the mail today denying Camryn's referral to UCLA. We had a bit of an insurance fiasco in the fall and we thought we had finally worked through it. We had to switch plans, groups, etc...and now we were denied. I almost just lost it.

Jason was on the phone for awhile and finally I joined him; guess there is just something about a mother and her little one. I cried explaining that my child had not one but two bone marrow transplants and that it was not an option for her to wait forty-five days for care.

Thankfully the representative was kind and he helped us figure out some options and we are going to pursue those tomorrow. If you could please pray that we get this resolved quickly and thoroughly in order for Camryn's care to not be interrupted. We are less than 300 days post-transplant so it really is not an option for Camryn to just wait this out.

So with a deep breath we venture in and try to figure out the best options and a way to care of our little girl. And did I mention that it is almost February? Guess I should just be ready for all of this huh?

Trusting that the Lord is a lot bigger than any insurance plan...

day +236...tuesday

WOW...two hundred and thirty-six days since transplant...

A lot has transpired in those many days, but thankfully as the days pass the countdown to a year is inching ever closer. Camryn is doing really well...and we are so thankful! Last time her appointments went to once a month we didn't make it through the month...for now we are half way there. Two more weeks and we'll make it through an entire month without incident...we are so thrilled for these past two weeks and so very hopeful for two more just like them.

Tomorrow Camryn has a home lab draw so like always we are anxious to hear about her labs and see how she is doing...after all the numbers don't lie.

So for this Tuesday Camryn did not have to go to clinic and did not have school...she was one happy girl today! Don't get me wrong Camryn enjoys school, but she does like to have her *free* day so to speak. We continue to just say thank you to the Lord for His continual work in Camryn's body...in her bone marrow.

Not much new to report...both Camryn and Wyatt are doing well. They are enjoying life as kids and having fun to the fullest! It is nice to just be for awhile...

The next few weeks are full of moments and memories that are very hard, but we are so grateful to be where we are. Yes, at times the heaviness is still there...Yes, there are moments when I fight the tears...Yes, the L-word (leukemia) stops me in my tracks. But we are grateful to be at day +236 again...and we will continue to take it day by day, believing, hoping and surviving!

Thank YOU for your continual thoughts and prayers for our family.

a date with a really cute girl...

Today I had a date with a really cute girl and it was one of the best dates ever! It was spontaneous...we just looked at each other and I said "You wanna go?" To which she said..."Yep!" And off we went.

But, before we could go she had to change out of her dress up dress and put on real clothes...a few minutes later she comes out of her room with a green Tinkerbell shirt, a green skirt. She was so proud, she did it, she chose her outfit and she was like a little teenage girl finding just the right thing. I gently told her it was pretty chilly so we should find a jacket and maybe some leggings? We found just the thing and put on her new Vans that she is really proud of and off we went.

As we were in the car driving we started chatting about her birthday and what she would like. Jason and I had planned on maybe buying her some new bedding as she has mentioned really wanting that. As we chatted we started talking about posters, curtains, blinds, rugs and I just smiled. My little date and me were in our own little world rocking out to Taylor Swift and talking about all things girly! It was priceless...

We arrive at our destination and go into her store first and oh my quite a shopper she is...checking out everything, looking for the deals and trying to find just the right thing. After that we hit two other stores. In the first one she told me I really should think about buying a different color sweater..."how about red, green or yellow?" or "you should really get this safari dress mom!" While I got her advice on which purse to buy...she gently instructed me, "that the square one can hold more stuff...and you know mom you like square purses better, almost all of them are square!" I was dying! My little fashionista for sure! We headed to our last stop and checked out some jeans for her Daddy...as she looked at them she commented, "but, they look like they are going to rip right here...Daddy needs good jeans Mom, not jeans that are already ripping!" HA!

As we walked out of the store she looked up at me and said, "Mom, wanna cookie?" Yep, this is a girl after my own heart...we got a cookie, picked up take out on our way home. And totally savored a Taylor Swift sing-a-long on the way home...yep, we might be the next American Idols. :)

Got to spend a date with the best girl in the world...

My Camryn Lee

a lull...

I feel like we are in a lull and I'm hoping that it is not the lull before the storm.

I don't know why it is but with every passing day, as February inching closer my heart gets heavier and I have to catch my breath.

I was looking at the calendar trying to *plan* some little activities for our family of four to make the world not feel so small and there they were 2/7...2/17, the days forever etched on my heart when the bottom fell out of our world not once, but twice.

This February will mark four years of this leukemia journey...four years. Not a 100% sure what my heart will feel on that day. Thankful for our family having made it this far? Hurt that Camryn still is battling a disease that is just so unfair? Grateful that Wyatt is here bringing with him a gift unlike any other? Angry that this circle seems unending? Hopeful that maybe one day all of this will not be as defining as it is at this moment?

I'm not sure...but, I know that I struggle walking through these days. Oh if I could tell that mommy four years ago that she will never see the world the same.

Because she doesn't...

Believing that in this lull HE is carrying us through as HE has done time and again...even in the storm.