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

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!  

One week down

As of today Calleigh has finished 7 radiation treatments.  Twenty-three left to go!  She is over halfway finished with the portion of the radiation that covers her brain as well as her entire spine.  After day 13, they will focus solely on her brain where the tumor was located.  Thank you to those who are praying daily for her.  Our church has started a prayer chain where people have signed up to pray all throughout the day.  She is definitely well protected by prayer.  They expect that we will start to see some side effects in about another week, such as fatigue and nausea.
The first couple of days were hard for Calleigh because of course this is all a little scary.  These days she bounces right into the office, heads to her room, and tells them how she wants her vitals taken.  She's dancing in the hall for the nurses and being sassy with the anesthesiologist.  One of the technicians painted her radiation mask to look like Ariel.  She loves it and is begging to bring it home.  She will get to keep it when she is finished.
We are starting Occupational Therapy this week.  I am praying that we can resolve the few issues she has quickly and make a complete recovery.  We are so blessed that her case of the posterior fossa syndrome is so mild.
Tomorrow we see the oncologist again and she will receive her first push of chemo through her port.  This type has no side effects.  She will have one dose per week until she finishes her radiation.  We will have a month's break and we will start the intense chemo after that.  We anticipate that to be the beginning of October.  She probably will not finish with her chemo until September-October of next year.
Please pray for us as we are trying to find someone to keep Calleigh during the school year.  We want her to have consistency in our home even though this year is probably going to be chaotic.  Lance is trying to start going racing some again and I know it is hard for him to be away from her.  Please pray for him.  I am also preparing to return to work.  It feels like leaving an infant all over again.  We pray that we will be effective in our jobs at work and also as parents.
The fundraiser for Calleigh has just been amazing.  Thank you to all who have purchased shirts, bracelets, and car decals.  We were able to go to church Sunday and it was very emotional for me to see everyone wearing their shirts in support for our family.  We are so grateful.
People have been asking how we are doing, feeling, etc.  We are of course stressed, but we still have a sense of peace about this.  We have had to "let go and let God."  This is nothing we can control or plan.  It's still unbelievable that we are in this situation, but we have to keep moving, getting up, going to work, appointments, and living our lives.  There is no other option.  So we are doing the best we can to be "normal" and carry on.  Calleigh is stronger than us all.

Cancer picked the wrong princess!

Vacation 2014

We enjoyed a much needed vacation in Charleston and were able to do many of our normal things. We visited the beach and pool, collected every seashell on the Isle of Palms, and ate at some of our favorite places.
Thank you to Brooke Martin for the tshirt fundraiser she started for Calleigh. Thank you to Katie Van Antwerp and Clayton's Screen Printing for making this happen. We are so excited to see the final product.  Thank you to everyone who has purchased shirts, bracelets, and decals. I hope one day Calleigh will understand the depth of your support for her.
Tomorrow Calleigh begins daily radiation treatments for six weeks. Please pray specifically for her that the short and long term side effects will be minimal. Her treatment in all will be over a year and as much as we dread the effects we are ready to get started so we can beat this and move on.
Thank you for your messages and prayers. We feel them everyday.

Beginning Treatment

Last week was an full of emotional highs and lows.  I think we finally have an understanding of how Calleigh's treatment plan will play out, but the reality of it all is also finally setting in.  We were told to cut her hair short because her radiation treatments may make it fall out.  That was certainly a tough day for her and for me!  I am so grateful for our stylist Melody who got her a doll and styled her hair just like Calleigh's.  I'm sure she feels such a loss of control as we tell her what she must do and drag her from place to place.  We also told her about her condition after meeting with radiation oncology.  The conversation happened over cookies and we were open and honest with her.  We used the words cancer, port, and chemo.  We explained that her hair will fall out and she wanted to see pictures of other little girls without hair.  She says she does not want a hat or a wig which is not suprising!  I told her she could wear a crown everyday if she wished.  She wants to wear a headband with a bow, so we picked out several soft headbands and two new flowers to wear on them.  Her resiliency amazes me.  It makes me able to hold back my emotions in front of her.
This week we have another set of appointments.  Monday is an audiogram and vision screening to establish baseline levels.  Tuesday they will make her mask for radiation and Wednesday she will have a spinal tap.  She will start everyday radiation treatments on July 23rd and will have to be sedated each day for them.  She will finish these treatments the week of Labor Day.  Please pray that The Lord will place a hedge of protection around her body during these treatments to minimize the effects of radiation.  The side effects of radiation are frightening and I am having such a hard time feeling ok about them.  But the side effect that I am most grateful for is survival, so the benefit in this case outweighs the risk.
I thank God everyday that my little girl is here and I am praying that she emerges on the other side happy, whole, and healthy.  I've been reading Hebrews and everyday God is showing me something to get me through that day.  Hebrews 10:23 sticks out to me right now: Let us hold unswervingly to the hope we profess, for He who promised is faithful.  We are claiming that God has control of this situation and placing our faith in Him to restore Calleigh to health.  

Oncology Appointment

Calleigh had her first official oncology appointment in Greenville today.  It went well and we were pleased with how the doctor took time to answer all of our questions.  Her case of medulloblastoma is classified as "standard risk."  Even though Calleigh's tumor was completely removed we have to "mop up" any cells that are left floating around.  So Calleigh will undergo radiation treatments and then chemotherapy.  We are scheduled to meet with the radiation oncologist tomorrow afternoon to learn when her treatments will start but we anticipate that it will be within the next couple of weeks.  She will receive 31 radiation treatments with one weekly chemo treatment during that time.  All of this is expected to be outpatient.  Following the radiation, she will have about a 5 week break and then we will start chemotherapy.  She will have 9 cycles of chemo that will vary in length. For each round she will have to be hospitalized for 1-3 days with the initial dose in order to give her fluids and monitor her condition.  She would also of course be hospitalized for any infections, fevers, etc.
We received a lot of information today and my head is spinning a little!   Lance and I talked as we ate good behavior ice cream again this afternoon and we both feel at peace with this.  We have no idea what next year will look like for us and for people who like order and concrete plans this is a little difficult for us.  (I've already created a tabbed notebook to keep myself organized!)  We will get through this because we have to.  Calleigh is my whole life and I know I talk about her to the point of being annoying.  Sorry coworkers and friends, but she's the best thing I've ever done!  I will fight for her with every breath in my body.
We are hoping to get away for a few days before her treatments after having to cancel two vacations we had planned this summer.  :(  I think we could all use a little time on the beach.  We have one standing appointment next week and two more to be scheduled.  Please pray for us during the time of uncertainty and as we explain to Calleigh about what comes next for her.  I've never been so thankful for my education and experience working with children.  It's honestly prepared me to help her understand, push her when needed, and be the mom she needs right now.
Thank you for all who pray for her all over this country and even in other countries.  Being bathed in prayer has certainly brought us a measure of peace and sense of security.  We appreciate each one of you who loves her and have loved on us during this time.

Neurosurgery Follow-up

We saw Dr. Hodge this afternoon. He was the neurosurgeon who performed Calleigh's surgery. He removed stitches from her drain site and checked her incision. Everything is healing well and he seemed pleased with her increase in oral motor skills. He expects that if she continues to progress this quickly that she will completely recover. We received the final pathology report from Johns Hopkins and she is officially diagnosed with medulloblastoma. They will discuss her case before the tumor board tomorrow so hopefully we will have some idea of a treatment plan at our Thursday appointment with Dr. Bryant. I feel at peace with her diagnosis. I read in Hebrews this morning:
"Today, if you hear his voice do not harden your hearts as you did in the rebellion.”
I feel like God is telling me to let go of this and give it to Him and I'm learning hard lessons of not being prideful and relinquishing control. 
Calleigh talked the doctor'a ears off. She asked him why he had no hair and then said she was ready for ice cream. She's getting stronger everyday!

I ordered this the day of her surgery after we received the initial pathology report. Gray is the color for brain tumors. 

Thank you!

Thank you to everyone for allowing us some quiet time at home over the past few days.  We've tried to get back in our normal daily routine.  Lance worked some, we got our pets back (yay!), and we've tried to create a sense of peace for Calleigh.  She's done remarkably well.  We've visited neighbors, blown bubbles, played on our swing set, gone to a neighbor's birthday party, visited Nana's house for the 4th, and eaten at a few of her favorite restaurants per her request.  I'm also working on sending thank you notes to everyone for their love and support shown to us during this time.  I've tried to keep a record of everything that was brought or sent to the hospital.  If for some reason you do not receive a card from us, please know that it is not from a lack of gratitude.  The days ran together and as we went up and downstairs for tests and moved rooms I may have missed recording something.
I want to say a special thank you to our families and close friends for being there when we needed them and also giving us time alone to think.  You brought us food, clothes, did our laundry, cared for our pets, checked our mail, etc.  We will never be able to repay you.
I know that I've mentioned that Calleigh needs time to heal and I'm sharing this with you now to ask for your help.  She has done so remarkably well during this surgery and is recovering well.  She did develop what is known as posterior fossa syndrome as a result of the surgery.  No one knows why it happens or how to prevent it.  This can affect speech and motor function.  It can be very severe leaving children unable to walk, talk, and even swallow.  We are lucky that Calleigh's case is mild.  Her speech is a little difficult to understand right now and she speaks softly due to some oral motor issues.  We hope to begin occupational therapy soon.  Let me stress that her cognitive abilities have not been impaired in any way and that this condition can be recovered from over time.  She is aware that things are different and seems to get a little overwhelmed if around too many people.  I beg that if you see us out in public that you treat her as you always did and please understand if she seems shy and does not want to talk or does not respond to you as she did before. I could not bear if her feelings were hurt by the words or actions of others.  Lance and I try to limit our conversation about her condition and treatment in front of her because she understands so much and we do not want to confuse or scare her.  Please do not ask us questions about her condition or treatment directly in front of her.  She is still very scared and unsure as a result of her hospital experiences and we do not want to frighten her anymore.
We have two appointments this week.  Tuesday we meet with her surgeon to check her incision and receive the final path report.  Thursday we meet with her oncologist and will hopefully learn more of what her treatment will entail.  I will try to update after these appointments.
A good friend reminded me of one of the stories of Peter.  Peter wanted to walk on water and when he looked up he did, but when he became fearful and looked down, he sank.  I'm trying to stay afloat and focus on the positive even though it is hard at times.  Thank you for your love, respect, support, and understanding throughout all of this.  We could not do this without you.

Home Sweet Home

We were discharged today and made it home!  We are looking forward to sleeping in our own beds, using our own showers, and most of all, giving Calleigh a sense of normalcy.  We will follow up with surgeons and oncologists next week.  We plan to rest and relax and try to re-establish our routine.  I know many people will want to visit and we would love to see you if Calleigh is up to it.  She became very overwhelmed the last couple of days in the hospital and became very frightened (understandably) by what was going on. She needs some space as she tries to process what has happened and what will come next.  Calleigh still has a lot of healing to do.  Please give either Lance or I a call and we will let you know when you are able to visit.  I can never thank you enough for all your support.  We know we have a long road ahead but we both feel a sense of peace and know that God will use this for His glory.
Now that we're home I thought I'd share a few pictures of Calleigh and our family for those of you who do not know us personally.  Thank you everyone for prayers.  We have felt them!