Monday, August 20, 2012

What Does It Mean?

We are used to MRI's, blood draws, infusions and unfortunately we have become used to bad news.  Last Friday, Bailey had her 'every 3 month MRI' and yet again we got news that Bailey's tumor is not responding to treatment.

We have been on chemotherapy since March 2011, and have little to report, other than we have TWO tumors inside Bailey's head, that seem insistent to stick around. 

The "nasty tumor" decided to change shapes on us.  Yet again, leaving the doctors telling us "We aren't sure what this means."  Not very comforting is it?

There is no life, without change.  These doctors may tell us that they do not know the reason for the changes in Bailey's tumor...But WE choose to believe the changes are bringing us closer to a deeper understanding of Love, Hope and Faith!

While we are disappointed that we don't have MORE GOOD to report--medically, we still hang on to the LOVE that we have as a family.....The HOPE that everything will work out for the best and the FAITH that God knows exactly what HE is doing, and that in times of doubt and hopelessness -- We continue to draw closer to HIM.

We are okay. There is SO much other GOOD to focus on.  

We had an AWESOME Summer, filled with Rockies games, Nuggets games, the Zoo, LOTS and LOTS of swimming, splash pads, movie dates, BBQ's, and late nights.  We are grateful for a new school year, and the changing season.



Brooklyn showing off her sign language "K" for Kindergarten.

I knew this day was coming.  I've seen 5 "first days of Kindergarten", so I kind of knew what to expect.  It was a BIG deal for each of my kids.  But this day was different...Still a BIG deal...But this was the FIRST day for my LAST kiddo...So more of a big deal for ME. :)

I expected tears...You know, the overly emotional mom who is hugging and kissing her kid, as the teacher tries to pry us apart...but the tears didn't come.  Instead, I felt this enormous sense of pride.  SIX happy, THRIVING children all in school!  YAY!

There are moments when you are proud of your kids (everyday)...Then there are moments when that pride turns in something more.  I don't think there is a word that describes the feeling, but my heart was swelling with an overwhelming sense honor. 

Honor in that I feel like I have REALLY amazing children...And that I get to be their mom!  

Thursday, August 16, 2012

Back to School

We went school supply shopping and I couldn't believe the list of stuff these kids "needed"!  It seemed like we were preparing for the end of the world!

As we loaded up the cart with highlighters, backpacks, pencil sharpeners and colored markers, I couldn't help but fill with so much pride and joy!

All SIX of my children will be headed to school this year, and as much as I say I am excited for the school year to begin, I am also a bit sad when I think about how fast time goes by.

It's been a wonderful Summer...Filled with camps, swimming, sleeping late and those "I'mmmm Boorrreed" days.  

Bailey will be heading back to school with a tumor that has now decided to change shape...What this means for sure, we don't know....But she is also going back to school with the positive attitude, she has carried with here the entire time she has been on chemo.  I'm so very proud of her!

She will also have a new look! 

Braden is officially in High School!  He is excited and nervous about it (weren't we all?)  We have had several meetings with the school, to make sure Braden is in the right classes and that he is comfortable navigating the ENORMOUS hallways! 
He has an MRI in September to check on his optic nerve tumor and also the plexiforms that scatter his spine.  So far, neither have presented a major issue...and we are praying it stays this way!

Riley is 12 going on 25, I swear!  She wants to grow up too fast, and sometimes this takes my breath away! She will be a 6th grader this year and will continue with playing the violin as well as GLEE and Drama.  I cannot believe how fast this girl is growing up!

Rachel, my little bundle of spunkiness will be an AMAZING 4th grader!  Where has the time gone?  She's excited about 4th grade because she says "4th graders get more recesses!"  (Ha!  I would be excited too!)  Rachel will start Occupational Therapy and continue to receive sensory help in school.

Riker is a 2nd grader....And as HE puts it..."I'M SOOO EXCITED!"  Riker has always loved school and has done very well.  He likes reading and math and has tested above grade level in both!  Riker will continue in Karate and will soon move up to a purple belt!  He loves to show off his moves!

Brooklyn will be starting Kindergarten!!!  AMAZING!  I know that I will shed a tear when she actually goes off and my house is quiet....But I am so proud of her!  She is very smart and very ready to be in school!  She is looking forward to ,"meeting new friends and becoming super smart!"

Friday, August 10, 2012

It's early morning at the Children's Hospital...

 The unspoken tension in the car, on the way here was high...Bailey and I both know this feeling well.  The "what ifs" rolling around.  The holding of our breaths, until we hear that welcomed term..."STABLE!"

Lord....We are READY for some GREAT news today.

Sunday, August 5, 2012

Whirring Thoughts

Help me, Lord, my God. Save me according to your unfailing love." 
(Psalm 109:25-27)

I love the book of Psalms.  I could read it all day.  It's hard to wrap my head around the love that the Lord has for me....Even on my bad  REALLY bad days...
But  I don't think God's love is really meant to be understood.

 I am sitting here, in the quiet. My brain is whirring and many thoughts are coming to me...
Thoughts of Bailey.

Will she be okay?  Will surgery be the BEST option for her?  There is so much to consider!  So many potential outcomes.  How do we know what is best?  She is 16 years old, and already has faced so much.  I truly hate that the DR. basically "put the ball in our court", in regards to surgery...Can't he just tell us the best path to take?  Hmm-  That's kinda the way God works, isn't it.

There is so much more going on in the life of Bailey.  Her biological father told us this Summer that he was going to 'give her up'.  Meaning allow Rich to adopt her and her brother.  Bailey actually smiled at the thought of this, which left me feeling confused.

Thoughts of Braden.

I got a phone call from the Children's Hospital the other day.  They were calling to schedule a MRI of Braden's brain and spine.  Oh yeah... Braden.  With all of the issues going on with Bailey...and the fact Braden has been doing so well...I almost forgot, totally that he needed his 6 month scan.  

The phone call caught me off guard.  

Braden's last MRI discovered Plexiform tumors in his spine.  Right now these tumors cause mild pain...And do not limit him at all.  But I know all too well, to not get comfortable in this place.

"Stop fighting, stop resisting, stop complaining and start trusting your sovereign Heavenly Father; refuse to worry."

~Chip Ingram

Thoughts of Brooklyn.

I haven't really talked much about Brooklyn and her "issues"....'Cause they are really MY issues.  Brooklyn was diagnosed with Vitiligo last winter.  Vitiligo is a skin condition (Just what we needed...ANOTHER skin condition!) that causes the skin to lose pigmentation...making white patches appear anywhere on the body.

When you compare Vitiligo to Neurofibromatosis...I'll take Vitiligo hands down...But I still find myself angry and worried.  Like ..."Are you kidding me?  She's free and clear of NF, but now has to deal with THIS?"   It's really maddening...

Rich says I am overreacting.  And I probably am.

Stop Fighting, stop resisting, stop complaining---And what's that part about worry?