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!