Sunday, April 29, 2012

Month 5 of Maintenance- clinic

Well of course clinic was this week...and due to my 1 year post it got put off.  We went to see Dr. L on Tuesday and sadly little Gracie threw up on the way.  Seems to be a new thing she does with more frequency than she or we like.  The poor girl, as we were driving on the freeway and it was just Gracie and I and our last event of pulling over was AWFUL I used my calmest, sweetest most comforting voice and told her it was ok and she didnt' have to throw up anymore and many other such attempts to avoid pulling over before our arrival.  She was amazing and made it without throwing up more than once. 
Her counts were PERFECT!  I'm so thankful.  I think she's never going to just endure the port access without at least a little fight, but I can't blame her I'm 25 and still hate it!  And i have had nowhere near the trauma she has.  Maybe it's more of a good thing than bad, hopefully she'll always stand up for herself and what's important to her and not just get walked all over :)  Either way she's amazing, beautiful and as always I can't express what an honor it is to be her mother. 
Clinic Stats
WBC: 2400
ANC: 1200
Hemoglobin:12.1
Platelets: 274,000
Weight: 36 lbs (a few oz)
Height: 3 ft 1 and 1/8 inches according to the nurse :)  As they said she's starting to grow in height in maintenance even though she only grew maybe an inch or less through all of front line treatment.
Of  course I had my nice list of questions for the Dr to answer, which she did.  It's our new routine... a month is a long time to go without seeing the Dr for us, but I personally love it.  Even though we love our oncologist. 




Tuesday, April 24, 2012

A year ago...

It was a Tuesday evening one year ago...April 26 but a Tuesday so close enough that I received the very worst phone call of my life.  It was then I first heard the word leukemia used in relation to ANY child.  But of course that child was MY child.  My only child.  My 18 month old pure, innocent girl.  My Gracie girl, my life.  Someone asked me at the park on Monday in a random of all conversations if I cried when she was diagnosed.  The honest to goodness truth is no.  Every thing I would have thought I would have done in the situation I didn't do.  I didn't cry when the Dr told me on the phone.  I didn't cry that night in the hospital while they were drawing her blood for hours.  I didn't cry April 28, 2011 at 5:00 pm when the Dr and Resident came to give us the official diagnoses.  Yes, she did have leukemia.  I have thought at times...I wonder if people thought I was crazy.  I wonder if the Dr's and nurses are thinking why in the world is this pregnant woman not crying?  Don't pregnant women cry over everything?  Well surely a cancer diagnoses for a 1 year old warrants a few tears.  I didn't cry because I was numb.  In a sense.  It was utter shock.  I couldn't think about the reality.  I just lived on adrenaline, faith and the prayers of the hundreds of people praying for us.  My heart felt like it was bleeding, but I didn't cry.  I knew I had to be strong.  I had a half developed baby inside of me and an 18 month old fighting for her life.  I think I often felt I didn't have time to cry.  I never went into any other room that first week except a couple times to the fridge...which only lasted a day or two until the isolation excluded that to.  I didn't meet any other kids with cancer.  No other cancer moms.  I didn't cry on anyone's shoulder, not even my husbands.  There was no time, no thought for it.  No conscious thought for what I needed or wanted, only how I could help protect and care for these 2 sweet angels so dependant on me.  I remember feeling too young, I was 24.  But hard to complain, if anyone was too young it was Gracie.  18 months is far too young for cancer.  I grieve the loss of so much of her innocence and childhood.  I wish so often when she cries in pain that I could say "it's ok, mommy won't let anything or anyone hurt you".  Each time I try to say those words I can't, a piercing feeling comes into my heart and I think of the numerous times I've held her as her big beautiful eyes saw nurses, dr's, needles, and more coming at her.  Heard her scream Mommy, and Daddy as we held her in attempt to  save her life.  But she doesn't know that.  I wonder what her little mind thinks during and after these things.  I wonder how she can trust us at all.  Yet she does.  She still has some innocence and so many childlike traits.  Her smile and laughter turn my world rightside up.  We've weathered as a family in one year more than I ever expected to in 10.  I've learned SO much and it seems there must be so much more to learn, because our journey's not even half way over.
People refer to this as a marathon.  My most visual of our marathon is that we thought it was only a half marathon and feeling extremely well trained or ready to win the race.  We knew we had to run fast, there was NO choice.  So we sprinted.  And Todd and I each grabbed a child running as fast as we could.  We ran and ran and ran, sweating and feeling worn out each mile.  But we kept going, we had to.  The kids got heavier and harder to carry, but we had to finish together.  Along the way we had friends and family at every mile mark cheering us on and helping us make it one more mile.  We hit the 13th mile and thought thing would get easier...we were tired and hadn't expected the extra 13 miles.  We still have a long way to go to get there and at times we stop running, but we don't stop.  Sometimes we walk, and sometimes we crawl on our hands and knees.  But we will hit that finish line one of these days...and when we do we will arrive victorious even if our arms and legs are covered with scratches, bumps and bruises even some bleeding wounds.  And when we arrive our muscles with be sore, but STRONG.  Stronger than they've ever been. 
I wish I could thank each fan along the sidelines who has helped us keep going and get through the rough moments when we needed a boost yet again.  For each family member and friend.  We have been incredibly blessed.  The Lord is mindful of us even in our darkest hours.  Our children are our life, and lots of work.  But we love them more than our own lives and they are teaching us what no one else could.  I feel worn out, and often wish our marathon was over.  But, there will be bright spots along the way where we will appreciate the view we have obtained.  As I'm typing this sweet Gracie walked in and said "Mommy, sad",  yes I do cry.  Then she walked over and got a tissue and wiped my tears.  Is it worth it, the answer is an astonishing "YES"!  She is worth every tear, every pang in my broken heart...and of course so is our sweet Tyson.  Tomorrow ( or make that tonight...hard to distinguish between the two we still get very little sleep) we will take one more step in our marathon and every day after that.  And when I fall on my knees again to crawl I know my Heavenly Father will send someone to reach down their hand and help drag me to my feet one more time. 
A year has never been longer, or more difficult.  But I suppose that means we've never had greater reason to rejoice in another year because we have survived.  Which to me is my most notable accomplishment in my life so far.  And it won't be long before our sweet Daddy graduates and we start our first REAL job together...our family of four!  I'm grateful for the "health" we all have at this time.  And pray every day for even greater health in the future.  Thank you, thank you to all those who have helped us in any way on our journey and to those who continue to help and will help us through the remainder of it.  And most of all I'm grateful to a loving Heavenly Father who has given me peace that none other could at times I needed it most.

Thursday, April 12, 2012

Easter

Happy Easter!  We had a simple enjoyable day.  Last year we bypassed Easter (except my great friend Jodi pulled through for the Easter Bunny for all 3 of us when we got home from the hospital).  We had just gotten home from our trip to Utah and Gracie wasn't feeling so hot..surprise she had leukemia and we didn't know it.  Two days later we were admitted to Doernbecher for  the change of a lifetime.  Point being I loved being able to enjoy celebrating Easter with my little family and enjoy easter baskets, a little easter egg hunt inside and even coloring a few eggs.  Our friends Jeremy and Mitzie even dropped by and brought cupcakes which Gracie LOVED:)  Grandma and Grandpa Bucher were here in the morning and headed home that afternoon.  Quite a lot of visitors for us in a day:)  Enjoy the pictures.  It was nice to reflect on the glory of the Resurrection and our Savior Jesus Christ. 
 





A VERY common occurence.  Gracie loves hugging and laying on Tyson.  She does it several times every day.  He handles it well...but pulls her hair every time she usually laughs until the grip gets too hard then says OWW until I loosen his tight fist.  He has a pretty tight grasp.  Love these kiddos:)

Sunday, April 8, 2012

8 months/15 months

April 5 has come and gone.  Tyson hit his 8 month mark!  He's sweet as can be.  So handsome and starting to get up on his knees and think about crawling but lacks the arm strength...won't be long before he's stronger than me though:)  He's a big, tall handsome boy.  We love you Tyson!
Gracie adores him and gets him laughing uncontrollably it is definately a moment in time I want to freeze and stay in forever.  If I could choose something to surround me for eternity that would probably be it listening to the two of each other giggling like crazy at absolutely nothing! 



Gracie is down to 15 months of treatment left.  Sounds short and long at the same time just depends on who I decide to compare my life to...which I try not to do but I start to feel guilty when it seems so long and I realize a good friend won't be done for 3 years.  It's all a matter of perspective but I'm grateful to count down every day and try to have faith and not fear the future.  Easier said than done especially for a cancer Mom or Dad. 

Look how long here hair is getting.  It's really coming in and feels like we actually have to wash it now.  Crazy!  She's enjoying a few hair bows/bracelets from an easter package from Gma and Gpa Hurst and Julie.  She LOVES hates and seems detests headbands.  Not sure why but I guess we all have our likes and dislikes.  I actually think she gets a bit of comfort from her hats.  Glad for anything that gives her comfort.  We went out in the backyard to swing and went down the slide many times this past week!!  Fun fun!
Oh and Todd and I went out of town to look at a job this past weekend.  Hard to believe it doens't feel real but I've told many people my emotional response to change and difficult things seems delayed a few months now due to inability to process everything.  So I'm sure I'll be moved and maybe have a friend or two before I can fully digest whatever happens:)  Crazy life!  Nice to get away for aday or two even if it was mostly driving and doing "interview" stuff. It was my first night away from Tyson and my first night away from Gracie to other than when she was in the hospital or sick and I went somewhere to sleep for the night to survive.