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. 

New Year, Fresh Start

I hope you all had a wonderful Christmas.  We were very busy but took some much needed time to spend together with family and just the three of us.  I think everyone was much more at ease after receiving the good news from her pathology report.  We actually got two weeks off from the doctor during break and Calleigh had a two week break from therapy.  I just let her rest.  She works so hard everyday I felt like she deserved time to rest and continue to heal.  Calleigh had a big Christmas.  I don't think Santa realized how much he had brought her until he unpacked it from his sleigh.  Her favorite Christmas gifts were Wonderheart CareBear and Hungry Hungry hippos.  She's enjoyed playing with Play-Doh and princess legos since Christmas.

We were all ready to say goodbye to 2014.  This has been the hardest year of our entire lives.  I hate this year with a passion.  I grieve. every. single. day for what it did to Calleigh.  But I also celebrate how our faith in God is stronger, our marriage is stronger, and our commitment to beating this fight is resolute.  With all hopes our chemo journey will end this year in the fall.  

Calleigh will go into the hospital next Monday for her 3rd round of chemo.  This will be the first B round she will get.  She will be in the hospital for at least three days.  Please pray for her that she remains calm and for us that we can comfort her and keep her entertained.  She gets tired of staying there and wants to be home.  Please also continue to pray that this posterior fossa syndrome will be resolved this year.  I am claiming that she can be fully restored and I am drawing a big circle around her issues and giving them to God.  

We read this Sunday and it is so true.  He goes before us in all things and will make a path.  I know we would not be here and most definitely Calleigh would not be here without the grace of God.  He has his angels surrounding her and carrying her through.
Please continue to pray for us as we get back into the routine of school and then for Lance as he begins traveling again in February.  Please pray also for us all to remain healthy, but especially Calleigh so that she is not compromised more than necessary.  Happy New Year!

Blessings and Gratitude

We knew that the pathology would take some time, but based on what the surgeon thought he saw, our oncologist decided to proceed with Round 2 of chemo.  We were admitted almost two weeks ago for Calleigh's second "A" round of chemo.  She did well, just like last time.  No nausea or vomiting and we were able to come home within 24 hours. 
Playing the waiting game for the pathology has been very difficult.  We have worried constantly.  I have alternated between fear, anxiety, anger, depression, and everything in between.  Every waking moment of this time was agony waiting for the phone call.  Although we expected positive results, we also didn't expect to have a second surgery and scary MRIs so we felt like we had to prepare ourselves for the worst.  The house may look festive, but I didn't feel very "Christmasy."  Seeing everyone else enjoying the holidays made me very upset because I felt I could not. Frankly, I was jealous.  Lance held me up quite frequently during these days as I felt scattered and unable to focus.  A very big thanks to him for keeping me together. 
Finally Friday the oncologist called and said that the pathology report reflected their initial impressions were correct.  The "growing" spot was radiation injury and not tumor.  This is such an answered prayer because we would not have had many options had it been recurrent tumor.  So we are clear to continue our current treatment plan.  We will go in for Round 3 in January and then we will be 1/3 of the way through her chemo. 
We feel like we can breathe and relax a little now.  We can enjoy the holidays with our family, especially Calleigh.  She is excited for Christmas and asking why it takes so long to come.  I love the holiday traditions we have as a family: our tree full of special ornaments, shopping trips to Charlotte, the Blackwell lights, our elf Sparkle, and on and on.  I received my Christmas gift already and we are so blessed that Calleigh is here and able to celebrate with us. 
Thank you for continuing to pray for us and support us through this journey. We may bend, but we will not be broken by this.  We hope you have a wonderful Christmas!

Some of our family pictures done in November by our friend Amanda Morgan Photography.  Always a pleasure to work with her!

She's been so good.  Such a brave girl and works so hard everyday.  I hope we can make her Christmas everything she wants it to be.  

Post Surgery Update

We are home!!!  Calleigh did great with the surgery.  I was terrified that she would not wake up or wake up immobile as they were working close to her brainstem.  She is weak, but walking, talking, and eating.  We are praising God for a smooth and seemingly successful surgery.  Couple of neat things to share.  The CRNA that worked with her a lot during radiation came to sedate her....on his day off.  Thank you Mr. Mike! She walked in the room with no tears and laid on my shoulder singing as they put her to sleep.  It is horrible to have to send your child to surgery, but was made easier for us by the fact that she had no fear.  Secondly, she waited under sedation in the recovery area before going into surgery.  The recovery nurses, one of whom is a friend of my sister, gathered around her and prayed over her before she went into surgery.  Finally, the Nurse Practitioner that works with and scrubs in with her neurosurgeon, prayed over her constantly during the surgery.  The magnitude of prayers that surrounded her during this certainly carried her through successfully and help account for her quick bounce back.
Calleigh was anxious to come home, but with the permission of the doctors and at her request we made a quick stop for Chips and Salsa and to go to Build a Bear to get Clarice the Reindeer as a prize for her bravery.  What brain surgery??

I know that many of you are wondering about pathology.  It has been sent off to the original pathologist at Johns Hopkins for final path, so it may be well over a week before we have a final answer, but based on what Dr. Troup, the surgeon, and Dr. Bryant, her oncologist, feel they see, we are continuing on the same original treatment plan.  As of right now it looks like best case scenario and in the words of Dr. Troup a blessing that we went back in because now her post-op MRI is clean.  Please pray for additional scans to remain NED.  We will be admitted December 1st for her second round of chemo.  We are ready to help her gain strength and enjoy Thanksgiving with our families.  We definitely have much to be thankful for this holiday!!

Hebrews 10:23  We claim it as the promise for our family!!!!

Update

We received Calleigh's most recent MRI results this week. The small spot has grown. It will either be tumor or radiation necrosis. Either way it has to come out. So Calleigh will have surgery again on Monday at 8am. It will basically be the same surgery as before. Please pray that she comes through the surgery well and recovers quickly. Most importantly please pray that what they see will simply be radiation necrosis and we can continue with her current treatment plan. Thank you for all your love and support. We feel defeated but still have faith. Hebrews 10:23

Round 2

Calleigh did absolutely amazing with her first round of chemo.  Although her counts did drop, she did not get sick and we were able to do as we pretty much wanted.  An additional praise report is that her hearing remains normal.  There is no damage from the chemo showing at this point.  She's enjoyed lots of outings with Mrs. Denise (who we are so grateful for), lunch with Daddy, shopping, going to a race and Halloween...just like any other four year old.  She's been working hard on her school work and is now reading and can write her last name.  We're working on writing numbers 1-10 and she loves patterns.  She is excited for Thanksgiving and to eat Turkey.

Glinda the Good Witch

 Cleaning Don's Car

Field Trip to New Prospect Fire Department

I wanted to update because next week is round 2 and I have some specific prayer requests.
1.  Calleigh's MRI is Friday.  Please pray for a clear or unchanged scan.  We now fully understand the term scanxiety.  We are praying for peace and calm for ourselves and for her.  We did not tell her anything about the last scan.
2.  Calleigh will be admitted Tuesday for chemo and stay at least one night.  Please pray for a good experience again with minimal side effects.
3.  Please pray for her as the winter months/flu season sets in.  If you've been sick or anyone in your family has been, please try to steer clear of all of us.  You will not hurt our feelings!!  We want her as healthy as possible.
We have also started a new type of therapy to hopefully help regain control of the facial muscles.  This is not only to help her make expressions, but also to not make eating so tiring.  Again the condition that causes all of this is posterior fossa syndrome.  If you are interested, here is a link for more info:  Posterior Fossa Syndrome

This graphic explains the areas that can be impacted.  Luckily, we do not suffer from all of this as it can be a very debilitating condition.  

In light of this explanation, one more request.  It hurts my heart to talk about this.  When people tell me how sad it makes them to see her not able to smile, I may not show it, but it breaks my heart.  Those are the times I want to just cry.  Calleigh is not defined by her smile and if you think she is, I'm sorry that you don't know her.  Yes, it is an outward expression of her personality, but it is not what makes Calleigh special.  It does not show her determination, tenacity, strength, resilience, joy for life, intelligence, warmth, kindness, and sass.  Calleigh is not gone and sometimes the questions make us feel like some people think she is.  I've even debated whether or not to stop posting pictures of her altogether and asking others to do the same, but I'm not ashamed of who she is.  She inspires me more than anyone on earth.  We celebrate everyday that she is here.  As parents there are so many aspects of this that are so horrifying and heartbreaking.  I wish you never know this pain.  BUT we are trying to carry on normally.  Cancer does not define our lives right now.  It's raising a four year old and finding God's purpose for us.  Will her smile return many of you have asked?  I don't know and that's all I can say.  We're done talking about it for right now as we want to focus on the positive and not the bad.  It's too painful.  Thank you for always being so respectful and caring of our feelings and Calleigh's.  For those of you who don't know her very well, this is Calleigh .