Pain and gratitude

Tonight as Todd and Gracie were out shopping and Tyson was asleep as I worked in the kitchen cooking/cleaning my mind and mostly my heart went out into the realm of close friends/family I have that are currently suffering and enduring much pain and hardship.  I of course thought of a sweet boy who has the same type of leukemia Gracie does and today had the longest/most chemo intensive day we had a clinic in all of her treatment.  He had to fast from 9-3 spending almost all of that time at the hospital.  He’s 3.  He’s amazing, he’s a fighter, a hero.  He’s battling the beast and I pray every day he will win and Gracie too.  I pray for other little cancer cuties fighting the same thing to.  He heart hurts and aches for the kids and their siblings and of course their parents as I know exactly how they feel, or mostly.  I’m sure we  all process it a little different.  I thought of sweet Jace who has passed on.  He would be 3 tomorrow.  He’s amazing and he’s another hero of mine, so is his Mom.  They teach people every day what matters and what doesn’t and how to be strong and have faith and rely on the Lord.  I thought of my best friend growing up, my cousin who has been through many difficult things but recently lost his son he had waited years for after being chosen to adopt and the baby didn’t make it.  We got married within a few months of each other our trials have been very different but maybe similar in some ways.  I was blessed with two children quickly and have watched my baby suffer and feared I might lose her, he has longed for a baby in his arms and my fear is his reality.  I hope they will be blessed with a baby soon.  Please check out their adoption blog here and pass it on to anyone you know considering adoption.  They will make amazing parents and I look forward to the day when I see him tenderly loving his child along with his sweet wife (who will never be seen without a smile on her face, seriously what better trait than that for a mother).  

The list goes on of course, it seems each person has their own trials and many so painful and heart breaking.  But of course soul building, bringing us down to our knees so the Lord can raise us up into when He knows we can become.  As much as it hurts to think of the pain each of these friends and others suffer, I felt a sense of gratitude.  I have been blessed to have such strength to surround me.  To have friends with great courage and strength; faith and hope.  Who suffer and don’t deny God, but turn to him for succor.  They drop to their knees and in moments of desperation and great pain, plead for God’s help, and he gives them strength to take one more step, and sometimes take one more breath. 

And gratitude most of all that we have a Heavenly Father who loves me and all of us.  He listens to every word we pray and answers those prayers in the timing that is best for us, and in a way that will help us most in become what He knows we can become. 

Gracie dancing!

Whew...a catch up!

So it turns out I'm WAY behind on blogging...but I have spent a lot of wonderful time with my kids this week:)  So I guess its' a fair trade!  I'll bag the real catch up b/c with all that's going on I know I'll never catch up before we move, and there's a lot going on before that so here's a quick list of updates!
1. Todd graduated!!!!!!!!!!  Ok well, he walked!!!  And he will graduate in 4 weeks officially!  It's seems totally surreal and unbelievable!  I've spent my entire life in school!  He has worked so hard and earned every piece of this degree.  Introducing our new (almost...but only b/c he put his family first) pharmacist!

We are very proud of you Todd!  I am still hoping to get a family picture with both kids...Tyson was asleep during each picture session or not present, but both kids have been with us through this process and I really want to document it:)  However I'm thinking of doing some pictur es when my parents are here (the week he's actually done)then we can get one with them to.  Of course our families and friends have been a major support this year particularly in allowing us to complete this major accomplishment.  So thank you to both sets of parents and everyone else who has helped us. 

2.Tyson turned 9 months old (yes, now almost 10)-he's turning into a big handsome boy right before me very eyes and I have loved this last week with him.  Yes, he's busy and into EVERYTHING:)  But this past week has been a great one with the kids and I've loved watching learn so much this week.  On monday he said "mama" for the first time  I remember when I went in to go get him after a nap.  When Todd went in the next morning he said "dada" he doesn't always get it right but it's very cute when he does.  He's also saying "nana" often.  He has gotten up on his knees with his crawling instead of army crawling as he has been and is now pulling himself up, on everything:) Yes, he's had many falls and bonks.  I have to watch him close b/c he loves cords and putting his hands in the electric heat vents (yikes) we try to barracade him into an area and he typically uses the barracades and stands up on them and often pulls them onto himself (like the racecar track).  One of his favorite toys now is Gracie's doll house which he loves to pull himself up on and stand up.  She of course runs over and says "no, tyson, no buddy" hmm...I wonder where she's heard that?  Or "no bubba", yes I admit I say that I'm not sure why it just comes out.  He has slept through the night (last night from 8 pm to 7:15 am) and he is just incredibly handsome and totally fascinated by everything around him.  He absolutely loves Gracie's "I Am a Child of God" movie and I read him an animal book before each nap and bedtime and help him feel the fuzzy fur, he always lets out a little laugh with the first page, a kitten.  At his 9 month appt he was 31 inches tall (off the charts, no surprise there and 22 lbs 13 oz.  And best of all...HEALTHY!!   I am so, so grateful he's healthy and happy.  In fact most the time when he climbs up on things I can hardly feel tired or frustrated that I have to move him again or stop him from getting hurt b/c I'm so grateful he's healthy and growing and developing well, it is such an incredible blessing. 

First bike ride...both both kids I think!

Climbing Gracie's doll house.

3. For the very first time in OVER a year our whole family has a shedule/routine. I know right who knew a person could be so grateful for a schedule. It involves me running nonstop from morning to night but feels SO good. Seriously it's amazing. The whole deal from wake up, to breakfast, nap, laundry, lunch, cleaning, play time, more naps, snacks, chemo, dinner, bedtime:) Yes we eat dinner now at 8 or 8:30 pm but I LOVE IT!! It means no more pre bed time snack and family dinner...minus Tyson who is in bed minutes before we eat. So even though we love him so much, we can actually kind of sit and eat and talk. Last night he slept from 8 pm to 7:15 am. Amazing and a big deal for him and all of us. And we even have some exercise scheduled in...plus we're sleeping more, or at least I am:)

4. Clinic and Gracie passed her mark of only having 14 months left of treatment.  Now we are close to 13.  She is growing up big time...and look at her hair!  We love it...and as always she got more comments on clinic, they all love her cute hair and everything else about her.  She is talking up a storm, knows her alphabet and counts from 1-12 then skips to 18:)  She can sing several songs.  I think today she sang almost all of I am a Child of God, and knows most of the Itsy Bitsy Spider-both favorites of hers.  She has really liked Little Miss Muffet lately and her comments make us laugh EVERY day.  She is funny.  Today at church (we are enjoying taking the kids to church and goign together) she pointed to a member of the bishopric and said "prophet"  then she told Todd pointing to the Bishop on the stand "that mans the Bishop".  She wanted to go up on the stand so she convinced Todd to take her up and bear his testimony, it was cute.  She loves doing "cheers" with any cup/glass and when we pulled out our glasses with sparkling cider she insisted on having a  special glass, with milk.  We really enjoy talking with her at dinner.  She knows she is two and her first and last name.  She talks of different family members and friends often and still loves and needs to cuddle regularly.  In the morning, after nap and as soon as Dad gets home.  She takes her medicine like a champ.  Holds it herself sucks it out of the syringe then says "yay" and starts clapping as we all follow her cue and join in!  She loves to be outside and reading books especially "Bernstein Bears".  Every night when we read scriptures we pull out her child version of the Book of Mormon and try to read a new story, but to no avail she each night repeats "the brass plates" until we again read the story of the brass plates after laughing at how funny it is she wants to hear it again and how persistent in not being willing to hear another one.  When she wants something explained to her in a pictures she points to it and says "eh-eh-eh-eh" over and over until we tell her what it is.  We passed her 2 1/2 year mark in April and she is definately a sponge and repeats things we say every day. 
She was a ROCKSTAR at clinic!  The poor girl threw up...again right when we pulled into the parking stall the whole way I was glancing back in the mirror cause she looked green to me, I guess my mother's instincts were right this time, but I thought we were safe when we got there and after distracting the whole way when I was telling my friend where to park, she was so kind to come with us and hold Tyson and entertain him so I could focuse on Gracie she threw up.  But, she was the best yet with her port access.  I was in total awe.  She started a big fit initially then totally calmed down, I loved the nurse.  We've never had her before and she gave her pictures of her dog and kids, such a great idea so I asked Gracie questions about the pictures the whole time and she would answer them.  Yes she was answering questions (of course binky in mouth) while she was having her port touched and needle poked in it.  Usually it's a huge ordeal and she is totally angry the whole time...what can I say I'm proud of her, AGAIN!  She's amazing!  Her counts were right on track to stay on her same chemo dose in the range they want it.  Lower than last time, but it's normal to fluctuate.

Clinic Stats

WBC: 2.1 ( ithink)

Hemoglobin: 11.7

ANC: 900

Platelets: over 200,000

Weight 36 lbs 9 oz

Height 3' 1"

Now for some pictures:)



Her fun little bug catcher that she uses to "catch flowers", she loves picking flowers and playing at ther park.  Oh and climbing stairs.

Loves her sunglasses and her eyes seem sensitive to the sun, she often asks me for them and says it's bright.

Wish we had a piano, this girl LOVES pianos and music and dancing.  We went to the LDS temple visitors center and really enjoyed it.  They even let her play the piano:)

She found her swimsuit bottoms and came out wearing them on her top, I thought it was so funny!

She wants to wear the funniest combos sometimes, oh and always has to have a clean pair of socks after her bath at night and in the morning when she gets dressed.

Outside in the sprinklers!

I love these because they remind of her she loves them and her happy with them make me think wishes and dreams can come true.

Our pretty princess on graduation day!

• 5.  We went to a carnival sponsored by the CCA and it was such a fabulous event.  I was a little worried when we got there she turned and hid in me and then Tyson started crying.  But by the end she was the happiest I'd seen her in maybe ever.  She danced her little heart out, seriously with no regard for anyone else around her.  I got a few videos but never have luck posting videos so we'll see if we get them up.  It was a night of joy for me watching her dance and be happy and live life like a normal healthy child:)
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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. 





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.

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:)

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.