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 .

Post Chemo Update

It's been two weeks since Calleigh received her first chemo treatment. The rest of this round will only be recovery time for her.  Her counts remained good until this week. They have dropped drastically which is normal and to be expected. This puts some new guidelines in place for us. We are still allowed to go and do as she feels with a few exceptions. One is high crowd areas, such as Wal-Mart. We also must ask that people not try to hug or kiss her right now. It's almost like we are back to those newborn baby precautions we all take. If you or someone in your family is sick we need you to keep some distance from her.  We appreciate all your help as we attempt to keep her as healthy as possible while her counts rebound.  She has felt so good we are trying to avoid sickness at all costs.

Calleigh will have her follow-up hearing tests and doctor visits in early November.  She will also have the follow up MRI to check the area they noticed on the first post radiation scan.  Please pray for normal hearing and an unconcerning MRI as it would alter her treatment plan if we have anything different show up.   She will be admitted again for her second round of chemo around the second week of Novemeber. We are claiming that everything will be fine and we can continue the course!
We had a really neat opportunity come up this week.  Every year the Chapman High School Volleyball team sponsors a game called Dig for a Cure.  This year they chose Calleigh as one of their special guests and the team raised money in her name.  It was also very special to Lance and Ame because we both graduated from Chapman.  It was neat to return "home."  We attended a game last night where they presented her with her own #1 jersey, signed ball, and flowers.  It was a wonderful night.   The girls all loved on Calleigh and everyoe was so welcoming and supportive.  A special thanks to Coach Jennifer Allen for coordinating this and including our family.  As an employee of District One schools it reminds me of why I choose to work there.  It is community, it is family, and it is home.

Thank you for being so supportive of Calleigh and our family.  Your generosity and dedicated prayers are humbling to me everyday.  You just amaze me with how you have selflessly you have given to our family.  We will never be able to thank you enough!  I am so grateful for the many blessings this has brought our way in terms of seeing God at work in our lives and the people we have encountered.

Magical Moments and Moving Forward

Disney is truly a magical place.  We enjoyed six days at the parks and had an amazing time.  I have never been in the fall before and loved all the fall and Halloween decor.  The crowds were not terrible and despite rain I can say that we accomplished just about everything on our list.  Spending that time together was priceless.  We were able to get a disability pass for Calleigh that shortened our wait time and we experienced random acts of kindness everywhere we went.  The compassion and the love people have there for children is so sincere.  A gentleman approached me in a store where I was paying for some items for Calleigh and asked if he could buy her one of the items.  I was stunned.  He had just seen us walking in the store.  Another young boy ran up to us at Epcot and handed me $20 to buy her something.  What a fine young man his parents have raised!  Each cast member took time to speak with her and comment how beautiful and brave she was.  After the Enchanted Tales with Belle, they asked me to leave her autograph book under the seat as everyone was leaving the room.  They then called us back in to have a special meet and greet with Belle.  On our last day Disney employees stopped us and asked us if we would be interested in participating in a Magical Moment.  They took pictures of us as Calleigh led the group into Stitch's Great Escape.  They may or may not use the pictures in a publication but said they would send them to me no matter what.  Calleigh received a stuffed "Angel" (another experiment like Stitch???) as her prize.  My favorite memory will always be the Cinderella at Akershus.  On this trip Calleigh was much more shy and did not talk to the characters as she did before.  This particular Cinderella came by, asked for my chair, sat down, and pulled Calleigh into her lap.  She rocked her, kissed her, and just comforted her.  Many of you may have seen the video I posted of that.  I cried for a good five minutes afterwards.  She and Cinderella have a secret which she still won't tell us and Cinderella told her she would love her forever.  She could have signed her book and went on by but she chose to stop and make a difference.  I tell you these things not because I'm excited about "special treatment" but that they assure me that people have decency and kindness.  I hate the stares, the questions, the sympathetic looks.  I've told her story more times than I can count but I try to keep the perspective that this has a purpose and may have an impact on people.  I can't wait to go back to Disney again.  It truly is the happiest place on earth.
Calleigh did have her first followup MRI Thursday and we received the results today.  It was not completely clean as we had hoped.  There is a very small spot that they are unsure what it is at this time.  It is unlikely, but not impossible that it could be tumor.  So for now we wait.  We do the first round of chemo.  She will be hospitalized Wednesday and stay at least one night.  I am terrified of what they are about to put in her body.  I'm also devastated, angry, fearful, and feeling downright defeated by the MRI results.  Today was not a good day for me and I'm glad I did not get the results till after school.  If the spot is gone or unchanged on the next scan they will be much less concerned.  If it grows, we would have to come up with a new plan.  I did not even want to share this but as Lance and I were talking we know that you genuinely love and care for Calleigh and that you will pray with us for no growth or complete disappearance.
I see so many posts about people reminiscing when their children were small and wishing they wouldn't grow up as the Taylor Swift song says and I used to think that too, but now all I want is for her to grow up.  I want her to go to school, college, fall in love, experience life, get married, and be a mother herself.  I pray for that everyday.
Thank you everyone for the prayers, food, donations, and gifts that you have sent.  With going back to work I have fallen hopelessly behind on writing thank you cards, but your kindness has certainly not gone unnoticed or unthanked.  We appreciate everyone who supports us on this journey.  As September ends Childhood Cancer Awareness month, please know that cancer doesn't end for Calleigh or for any child and their families just because October rolls around.

Radiation is Over!

Calleigh finished her last radiation treatment today.  Lance and I took the day to be with her and celebrate.  She was very excited and picked out a special outfit to wear.  The nurses decorated around the bell and had a bag of presents waiting for her.  The office staff was wearing Calleigh shirts, crowns, and beads in her honor.  They have just been amazing throughout this.  I could not ask for a better experience.  Even the doctor wore a crown.  We saw him today and he felt that she was tolerating everything wonderfully and will not have any difficulty recovering.  We will see him again in about a month for a recheck.  No more daily trips to Greenville!  We also saw her oncologist who thought she was doing really well too.  So it was a day of very good reports.
To celebrate we had lunch downtown and went to the Children's Museum.  Calleigh loved the farm exhibit.  Lance loved the race car exhibit.
Calleigh will have about a four week break.  During that break she will continue to see the oncologist, see the eye doctor for a follow-up, and have another audiogram to see if she has suffered any hearing loss.  Please pray that everything remains within normal limits.  At the end of the month she will have her first MRI since the day after surgery.  We are praying that this will be completely clear.  Shortly after the MRI, she will be hospitalized to begin her first round of chemo.  We continue to hold fast to the hope that God has promised us because He IS faithful!!
We continue to be so grateful to everyone who has prayed and supported us in anyway.  September is Childhood Cancer Awareness month.  I encourage you to consider joining a Relay for Life team and looking into organizations in your area that support families going through experiences like ours.  Here is Spartanburg County we have The Security Blanket of Spartanburg.  It's a very worthwhile cause if you are looking to contribute.  Go Gold this month for all the the little and not so little children who have faced these battles and all those who are fighting still.  They exhibit courage and strength greater than any adult I've ever known, as they face a world they don't understand and still can smile and play.

Calleigh got to keep her radiation mask.  It was painted like Ariel by one of the techs and she was so excited!

The bear hospital

Grocery Shopping

Racing!

The farmhouse