Monday

A couple of weeks ago Calleigh had a routine 3 month MRI.  There was a tiny spot they noted.  To follow up last week, she had a spinal MRI and a spinal tap.  They were trying the most noninvasive measures to determine what it was.  Both of those were clear which is good news.  There is nothing in her spine or spinal fluid.  Let me be clear that we do not know what this tiny "grapeseed" is.  Our prayers are that it is nothing, but if it is something, her treatment plan would  need to change.  This is NOT an emergent procedure, but we do not want to wait longer for answers.  Calleigh will have surgery on Monday to remove the spot.  It is a less intense and risky surgery but of course there are always risks.  We absolutely do not want to do this, but it could potentially effect her long term so we are trusting the doctors.
We will probably be in the hospital a few days.  Her surgery is at one on Monday  and we are asking people to not come during the surgery.  I know for many it is a comfort to have friends and family around and I guess I am just weird but we prefer to wait in as much peace as we can have.
Pray that this is nothing and we can continue on our current path.  We are of course disappointed, defeated, angry, etc, but like everything else, we will take it as it comes and believe God has a purpose in all of this for us and for Calleigh even when we cannot fathom what that may be.

Sweet Endings

This week marks the end of Calleigh's K4 year.  The last few weeks of school have been very difficult.  Calleigh was hospitalized for eight days with two respiratory viral infections and one bacterial infection in her port.  We were able to come home last Wednesday, but I had to continue to administer IV antibiotics through her port 3 times a day.  Glad that's done.  She was so sick and felt so bad.  We were trapped in the room with precautions.  She lost a lot of strength just sitting in the bed for over a week.  Thankfully she has felt well this week and seems to be getting her strength back....just in time to go back in the hospital Monday for another round of chemo...round 7 of 9.  We are in the last 3rd of her chemo treatment.  It's getting weary for all of us.  Her body is tired and it takes it longer to heal after each treatment making her more susceptible to illness.  I'm glad it will be summer and my schedule will be more flexible with what has to be done.
K4 Graduation was Tuesday and it was perfect.  My heart hurt so bad this year watching other students do the things she was "supposed" to do and what I had planned.  Her graduation was a victory for us as a family that we have not postponed our lives or hid from the world during all of this.  I flat out ugly cried all through graduation....at my place of employment which was something I have tried not to do this year.  I have tried to be very upbeat and professional all year long and not show emotions in front of others, but Tuesday was not that day.   I also realized we made the right choice bringing her to HSM.  As some of the teachers were emotional with her during the ceremony, I thought to myself, "She is really important to them and they care so deeply for her."  I was so very grateful in that moment and cried harder.  Thank you to Jessica Westmoreland and Beth Kennerly for all they have done for her this year.  You will never know how grateful I am.
Her graduation ceremony is posted on YouTube for any who would like to view.
K4 Graduation

 Diploma

 Receiving her PE Award

My butterfly

We survived the school year!  The social worker at the hospital tells me she will never forget the first thing I asked her after Calleigh's diagnosis...I asked the doctors plenty of medical questions, but my question for Amy was "Please tell me I don't have to quit work!" School has been my outlet and kept me sane.  Friends and colleagues, thank you for bearing with me this year.
Another sweet ending for us is the sale of our house.  We started praying about selling our house after Christmas and tossed around the idea for a while.  In early Spring, God placed some people in our path to lead us to feel we should list our house.  We worked with a wonderful realtor and the house sold in 3 weeks.  We should close next week.  We have found another house and we are just moving up the road but it will not be done for a couple of months so we will be staying with family.  We are blessed and feel like we are getting a fresh start and a new beginning.
Finally, this week marks the end of May and the end of Brain Tumor Awareness month.  I wish it ended for me June 1, but we'll be in the hospital receiving chemo.  Please remember those who suffer from cancer all year long and if you are able, donate to raise funds for pediatric cancer research to help us find safer treatments for our kids.
As always thank you for your prayers and support.  We literally would not have survived this almost year long journey without you.  Pray for us as we look forward to our fresh start and the end of treatment.

We Go Gray Everyday

Tomorrow is May 1 and Relay for Life.  I don't remember what I was doing on this day last year, but I know I did not think about brain cancer and honestly I probably didn't care that much.  I celebrated and honored two students of mine that had cancer at Relay last year, but never dreamed I would be in that position myself.  As you know on June 24, 2014 that all changed.  I learned very well that cancer randomly chooses it's victims.  On May 1, that brain tumor was there, it just hadn't made itself known yet.  We live and breathe cancer everyday.  I never forget it's there even for a second.  It leaves nasty little reminders of its presence everywhere we go.  There have been many disappointments and things we just have to accept, but also there is joy, faith, and blessings.  We serve a Mighty God and He has been faithful through this.
I had the idea to ask Calleigh what she thought about cancer tonight as she ate her shrimp and mashed potatoes.  I thought I would also make my own little list to share.


Cancer from Calleigh's Perspective
Mom: What does it feel like to have cancer?
     Calleigh: You're throwing up so bad
Mom: How does having cancer make you feel?
     Calleigh: Sad
Mom: What do you think about cancer?
     Calleigh: I don't like it when I have it.
Mom: What do you wish?
     Calleigh:I wish it would go away soon.  I don't have any hair, but it will grow back soon. 
Mom: Is cancer scary?
     Calleigh: No (Then we've done our job.)

Cancer from a Parent's Perspective

• You feel more helpless and vulnerable than ever before in your life.
• Your heart feels like it breaks over and over again.
• Friends do not understand you and you no longer understand them.
• The petty stuff in life makes you angry and you have little patience for people who are wrapped up in that.
• You speak a whole new medical language.
• You try not to cry in front of your child.
• You have to shave your daughter's head yourself and it is heartbreaking.
• You watch other parents lose their children and feel an unholy terror.
• You have to advocate for that child.  We are the parents you don't want to see coming.  We will ask you every question we can think of until we are satisfied with the answers.  
• You never take the little things for granted.
• Everyday is a celebration.
• You are more grateful than you have ever been.
• You find new faith in God.
• You have to "let it go.

So please Go Gray in May, spread awareness, celebrate the survivors, honor the angels, but also think about it a few times the rest of the year.  Those of us who live with it, don't have the luxury of stopping June 1.

Calleigh returns to the hospital on Monday for round 6 of 9.  2/3 of the way done!!!  Her counts are dropping lower each round and she has required transfusions and hospitalizations.  Please pray that she tolerates this treatment well and she is able to feel well enough to go back to school and graduate with her 4K class.

And she became a beautiful butterfly!

Overdue Update-Lots of Praise

I haven't blogged lately about Calleigh and I apologize.  We needed a little time and space.  We had a lot of things scheduled and planned for March and we really didn't feel like sharing them.  Last Friday Calleigh had her first post-surgery MRI.  Lance and I didn't tell anyone until it was over and we had the results.  Thankfully we had good results.  We are so grateful to God.  So this meant that her treatment plan will continue as scheduled.

Monday we went for round 5 of 9.  This is a six week round and we will go in again at the beginning of May for round 6.  We are over half way done!!  As long as things continue to go well we should finish in early September.  Calleigh did well again.  Another praise!

We've also been working hard to make sure Calleigh was healthy enough to start school and that we had all the information we needed for her to start.  Again I was afraid to say too much, fearing that "the other shoe would drop" but today was her first official day of 4k--told you I would have my first day of school!  It was definitely not what I planned but was even more special.  A special thanks to Mrs. Westmoreland and Mrs. Kennerly for making her first day special.  You guys are amazing.  I want to also thank my HSM family.  They have been rooting for her and for us since day 1.  They love her too! The support is overwhelming.  I thank the Lord everyday to do a job I absolutely love with such a wonderful group of people.

Life is settling into a busy little pattern.  I've gone back to school starting another degree, racing season has begun, and we have a calendar full of appointments to keep track of.  Thank you for all who continue to remember us and pray for us daily.  We feel your prayers.

We give God the glory for having brought us this far.  Hebrews 10:23

Happy Birthday!

Five years ago, Calleigh arrived at 2:35 am.  When I held her, I knew she was who I had been waiting for.

February 26, 2015

Dear Calleigh,

I'm writing this on February 26th about the time I went into labor with you five years ago.  Eight months ago today you had your first brain surgery and we received your cancer diagnosis, so the sobering thought hits me that today could be very different if that week in June had played out differently.  I'm so grateful that today we made a snowman, took a nap together, built Legos, and planned what you would do at daycare tomorrow for your birthday.  Without you I cannot breathe.  Happy Birthday, Princess!!  You are everything I dreamed for and together as a family we can do anything.  I am so proud of you.  You have big things ahead on the horizon and I cannot wait to see where life takes us next.  

Love, 

Mommy

She Leaves a Little Sparkle Wherever She Goes...

Beauty Comes from Within

Calleigh had the unique opportunity to be photographed by photographer Rick Guidotti. We were selected as one family to participate though Kidnetics where Calleigh has therapy. I love the whole message behind his campaign of Positive Exposure. As a special educator I felt that part of my job was to educate others about my students, to see the child who loved animals, made me laugh, or gave the best hugs. The disability was always second to the child and I believe every child has purpose and a strength. It was my job go bring that out. I have the same philosophy with Calleigh. She is not defined by her cancer, side effects of surgery, etc. She is first and foremost a beautiful creation who has a purpose in all of this. I'm thankful for this opportunity for others to see her and other children the way we as parents do.

News Coverage of the Presentation

Upcoming for Calleigh
Round 4 of chemo
At some point in the next month or so another MRI
Her 5th birthday the end of the month!!!

She's having fun at daycare and I am enjoying having her close to me during the day.

Thank you for your prayers!!

Joy

Over the past week we have been happier than we've been in a very long time.  Why?  Because we choose joy, gratitude, and thankfulness in the midst of every ugly thing we have to face and we see the beauty, the second chances, and the finish line. We were devastated when our plan was put on hold, but God truly did have our best interest at heart.

Just like that tiny plant pushing toward the sun, our hope has been renewed. After talking with doctors about making plans for Calleigh's future school days, they agreed that the best option for her right now was to be around a small group of kids on a regular basis and that once the flu season is over she can go to school with me. She will have her first day of school and we will get to see her graduate 4k. We get a piece of real life, of normalcy, and we get back a little of what we thought was gone and oh how grateful we are. God has blessed us and rewarded us for remaining faithful and bearing witness to His greatness. Make no mistake, this is not from earthly doctors or our will, but by the grace of our Father. He has held us and continues to hold us through this storm and is bringing us through this fire and we will emerge different, but better by His promise. 

Thankfully, Calleigh did well receiving her third round of chemo in the hospital last week. She had fun and enjoyed putting together a Lego set she picked out the night before we went in. I think that will be our new chemo tradition. 3 down, 6 to go. Please pray for her counts to continue to stay in the safe range and for her and those in close contact with her to remain well. 

Calleigh starts daycare Friday. Pray that her excitement continues, that she feels comfortable, and that she has fun, like any four year old should. 2015 will be a year of celebration. 

1. A fifth birthday next month!!

2. A first and last day of k4. 

3. Starting Kindergarten. 

4. More post-graduate work for me. 

5. Time with family. 

6. A ten year wedding anniversary. 

7. Summer. 

8. The end of chemo!!!  (We will have a party this year and every year as her second birthday). 

9. A make a wish trip. 

10. Disney!!

Can you make a list?  Can you find joy in the everyday?  If not, ask us how. It starts with Jesus.