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.