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!