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 .