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

Counting Down

As of today Calleigh only has seven more radiation treatments left.  We have made a paper chain and everyday we tear off a link.  We've asked her to begin thinking about how she wants to celebrate ringing the bell.  The staff at radiation oncology has been wonderful but we can tell that Calleigh is ready to be done and so are we.  We did have to start her on an appetite stimulant almost two weeks ago.  She has lost quite a bit of weight but is beginning to regain her appetite.  She ate eight chicken nuggets for lunch yesterday and her favorite dinner has been ABCs and 123s pasta with meatballs.  (to each their own) She did regain half a pound this week and her white count is almost back into normal range.  Please pray that she continues to avoid having mouth and throat sores so that she is able to comfortably keep eating and regaining some of the weight she's lost.  Calleigh has been more tired.  She's really needed more rest and is not able to keep the pace that we normally do, so we've had to scale back some on being out and about, especially when we know she's had long days.
I started back to work last week and I believe that it sunk in to her that I was going to be gone everyday.  She has had a hard time missing both of us this week.  It's hard for me to know she wants me to be at home with her, but it's just not possible full time.  She's also always been in school with friends and I think she misses that routine with her peers.  We are so happy that a friend is able to watch her and I rest easy knowing she is in good hands.  By working now, I'll be able to be with her when she really needs me, such as sicknesses and hospitalizations.  I'm so fortunate that I love my job and that I am passionate about what I do.  I'm grateful that I work with such a spectacular faculty.  They are supportive, providing encouragement, comfort, and feeding us very well :) and they are forgiving when I am slightly distracted.   It feels good to have an intellectual outlet and be a part of the meaningful work we do at our school.
We had booked a Disney trip for the end of July before Calleigh got sick.  She did not know and I am glad she did not have to feel disappointment.  When her radiation ends she will have a four week break before she starts her rounds of chemo.  We've rescheduled our trip at the end of that break before she begins her first round.  It's still a surprise, so shhh!  Our trip last year was truly magical and I cannot wait to give her that again.  It was the best trip we've ever taken because we got to experience Disney through her eyes and witness her wonder and amazement.  She deserves a little bit of magic after how brave and strong she's been.
I know this may sound strange to some people but we are happy.  We have so much to be thankful for and grateful for.  But to be honest it is more than happiness.  It's joy and that is a much deeper and stronger emotion.  I think being happy is temporary and situational.  Joy comes from peace and assurance that only comes by the grace of God.  I don't know that I've ever experienced joy like this before.  I've sang a solo in a choir special several times and one of the verses says "Even in the fire, even in the valley, I can have joy and I can have peace."  I've been through several big valleys in my life, but this is the first time I really can say those words with certainty and conviction.  It is possible to smile and continue on with life.  Romans 15:13 says, "May the God of hope fill you with all joy and peace as you trust in him so that you may overflow with hope by the power of the Holy Spirit."
Those of you who pray for us daily, we feel your prayers.  We know we are covered in prayer by so many and what a difference it makes.  I cannot imagine going through a situation like this alone, without God or without his people.
We are blessed beyond our comprehension.  God continues to intercede for us and place people and circumstances in our path that remind us of His love and presence and that just excites me.  This week could have been awful.  Calleigh was supposed to start school.  I even had an outfit for her hanging in the closet.  It was sad that she couldn't go, but I didn't cry.  I saw all of your back to school pictures and I felt comfort knowing that she will get her "first day" someday and it will be even more special than I could ever imagined.  Our family has always joked that I've written lesson plans for her and now I really am.  Between our friend and myself teaching her, I'm not worried that she'll be behind.  She's excited that I've told her I'll teach her to read.  I'm so glad I get to be the one to open that door and share the joy of reading with her.  I get to see that look when she realizes she is a reader.  I can't wait!
I know many things about our situation seem sad and unfair and they are, but please don't pity us, pray for us, that we continue to feel His strength and comfort even when the valley gets deeper.

Almost Halfway There

Calleigh has finished 13 radiation treatments.  She has 17 to go over the next three and a half weeks.  I am grateful that I could be with her for the first weeks everyday as she learned the routine.  The doctor said that we would see side effects within a couple of weeks and his estimate was correct.  Calleigh is still her spunky self running around, driving her car through the neighborhood, and wanting to be out and about.  Her appetite is really suffering and she is complaining of throat pain.  She seems to not be very hungry and getting her to drink enough has become a struggle.  She's very polite about turning food down, but has little interest.  She received fluids three days this week due to lower blood pressures.  Her white count is lower due to the fact that her spine has received so much radiation; therefore her bone marrow has taken a hit.  She's started napping again, not willingly, but necessarily. The most visible side effect has been her hair.  Tuesday night it started coming out in the bathtub and has very rapidly continued to come out.  She was upset at first saying that no one would think she was pretty and special, but seems ok at this point.  I anticipate that it will all come out or need to be shaved within the next few days but we are trying to give her the power to make that choice.
I have tried to prepare her that other children may ask why she has no hair and how she should respond.   If you have children who we see regularly or who are friends with her I encourage you that this may be a good time to talk to your children about this.  I would just remind them that Calleigh had been in the hospital because she was sick and that to make sure she is not sick again she has to take special medicine that makes her hair fall out.  When she's finished it will grow back.  I would not want her friends to be fearful in this situation and anyone to be uncomfortable.  I know she is going to miss being around other children this school year and we want her to look forward to the times she is able to spend with her friends.
Her side effects will get worse before they get better.  Please pray for her comfort and the doctors as they manage her care to keep her as healthy as possible through the next few weeks.
Please pray for me as I return to work next week.  We  have childcare worked out which is a major answered prayer and Lance and I could not be happier!  I feel like I'm leaving my 9 week old all over again, but I know she is going to have so much fun here and be well taken care of.
Even though some could say these are the worst of times we still have things to smile about.  We "get to" take care of our precious daughter and lead her through this.  It is a privilege to be her parents and we are grateful to God He chose us.  I'm trying to stop asking why.  I'll never know and it would not make this situation any easier or give me peace.  I do know that God did not give Calleigh cancer. He takes no joy in seeing His children suffer.  He did know it was going to happen and placed many people and circumstances around us to give us time and resources to handle this.  I can look back years ago and see how He was preparing us for this journey.
Thank you for all your prayers and support.  It's amazing the number of you who have purchased shirts, bands, and decals.  We are so grateful to each one of you!

Don O'Neal's car sporting a Cure for Calleigh sticker this weekend.  We're grateful for the support of the entire racing community!