NOvember

I am thankful for No's this month.  Sounds crazy right?  I haven't done the daily thankful for challenge but I think it's pretty obvious that I am grateful. But here is my list of No's for NOvember.

• NO more chemo
• NO hospital this month
• NO crazy MRI results
• NO days out of school
• NO more appetite stimulant
• NO more hair falling out
• NO more doctor appointments....well, not really, but many less than before :)

Life feels weird right now.  I feel in many ways we are in between worlds: normal and active treatment.  Trying to figure out how that works and staying insanely busy with work, school, extracurriculars, holidays, etc.

Happy Thanksgiving!  

Rocking in My Sparkly School Shoes and #9 and Feeling Fine

There was a lot of fear and anxiety leading up to the first day of school.  I was geared up for tears, the need for sticker charts, bribery, stuffed animals, bribery, tears, bribery, etc.  Calleigh was really nervous while attending 4K and we never could pinpoint the reason.  After lots of reassurance, new outfits, and Mommy and Me bracelets in case she felt scared, August 17 finally arrived....with no tears.  Calleigh absolutely loves school!  She is reading, has made a few friends, and most importantly has been able to be a normal 5 year old for the most part.  She has two amazing teachers who are her personal cheerleaders and encouragers everyday, in addition to a whole faculty and staff who cheer her on.  How lucky are we??

We have been in school 4 weeks and she has not missed a day yet.  She has won Art Student of the Day and received the first blue jewel on her clip for exceptional behavior.  Some days it's easy to not think about the past 15 months every minute of the day.  We're like everyone else, trying to get to soccer and dance, working around my grad school schedule and lots of meetings.  And it has been awesome.

We've also moved into our new house and are loving it.  All of the big stuff is done.  It's the little details that are taking so long.  We have great new neighbors who have welcomed us to the neighborhood.  It has been an easy transition for us all.  We are blessed.

Monday brings her last inpatient chemo for this protocol.  In 30 days she will be done with chemo.  It seems surreal.  We won't be throwing a big party because honestly I'm afraid to "jinx" it.  We're just going to go quietly back into our crazy lives where we have too much to do.  

After her treatment ends I probably will not be updating frequently because we feel the need for a little distance from all of this.  I'll still post pictures on my own site and update when big medical things come up, but we're ready to regain a since of normalcy with all we share with the public.  It's really hit me lately how many people know Calleigh because we have had a LOT of strangers coming up and talking to us lately.  This by no means indicates that we are not grateful everyday on our knees for your continued prayers, simply that when Calleigh is older, we don't want her to feel like she's grown up in a fishbowl.  

Again, THANK YOU THANK YOU THANK YOU for being our rock and support system.  We're definitely not done.  She has years of appointments, tests, and procedures ahead of her and we covet your continued prayers.  

I refer back to what God spoke to me when this all started.  

"Let us hold unswervingly to the hope we profess for He who promises is faithful." Hebrews 10:23

We give ALL the GLORY to GOD for our blessings.

 No First Day Jitters!

 The creepy mom on car duty taking pictures through the window :)

 K5 is hard work!

Yes, she picks out her own clothes everyday :)

Moving Forward

We waited 21 days for answers.  That was the longest most painful days of my life.  Thankfully, Calleigh's surgery was remarkably easy for her and she is recovering well.  Most gratefully, we found that the spot was normal ventricular cells and not tumor; therefore, we can continue her original treatment plan.  We are so blessed to have such wonderful medical professionals.  I was very angry that they recommended surgery, but we had to know and they care so much about her and only want to see her well.  Friday after her oncologist and I talked she texted me a picture of her fortune that said "Good news will come your way today" and that she had already received her good news that day.  We can breathe again.  We can focus on starting kindergarten and buying our new house.  It hit us really hard this time.
Our prayers were answered this time, but as our paster pointed out God does not always answer our prayers the way we want.  We have had those times too: initial diagnosis, surgical side effects, etc.  But even though we did not get the answers we wanted, He covered us and carried us through.  I asked why a lot during the last 21 days.  I was also angry, jealous, heartbroken, etc.  We are normal parents who only want our baby to be well.  I do not want anyone to get the impression that we glide through this without questioning.  Those who know Lance and I well know that about us.  What we have done is rely on each other and our faith.  We believe that all of this has a purpose in God's plan.  We go in Monday for Round 8 of chemo.  She will only have 1 more round after that!  Let me offer another word of caution.  Just because she receives her last chemo does not mean that this is over for us.  As Lance says, we will deal with this for the rest of our lives.  So many cancer patients have lasting side effects and post treatment issues that require many more appointments, meds, procedures, and more.  Please never assume that this is the end.
Prayer requests moving forward:

• Round 8
• Future MRIs
• First Day of Kindergarten!!!  Pray for her teachers and for her to be comfortable and make friends.  I don't want her to be seen as the "cancer kid."  A lot of parents in groups I belong to call their child their "ck."  It drives me nuts!!  Yes, she was sick, but that is only one aspect of her.  She is just a "child."  That's my special ed background coming out.  I just want her to feel like one of the kids.  She recently told us she felt all grown up.  I hope she regains some of her childhood this year.  
• Moving into our new house
• Counts to stay up to stay well during this treatment and miss no more school than necessary.  

Thank you for praying us through this!

Monday

A couple of weeks ago Calleigh had a routine 3 month MRI.  There was a tiny spot they noted.  To follow up last week, she had a spinal MRI and a spinal tap.  They were trying the most noninvasive measures to determine what it was.  Both of those were clear which is good news.  There is nothing in her spine or spinal fluid.  Let me be clear that we do not know what this tiny "grapeseed" is.  Our prayers are that it is nothing, but if it is something, her treatment plan would  need to change.  This is NOT an emergent procedure, but we do not want to wait longer for answers.  Calleigh will have surgery on Monday to remove the spot.  It is a less intense and risky surgery but of course there are always risks.  We absolutely do not want to do this, but it could potentially effect her long term so we are trusting the doctors.
We will probably be in the hospital a few days.  Her surgery is at one on Monday  and we are asking people to not come during the surgery.  I know for many it is a comfort to have friends and family around and I guess I am just weird but we prefer to wait in as much peace as we can have.
Pray that this is nothing and we can continue on our current path.  We are of course disappointed, defeated, angry, etc, but like everything else, we will take it as it comes and believe God has a purpose in all of this for us and for Calleigh even when we cannot fathom what that may be.

Sweet Endings

This week marks the end of Calleigh's K4 year.  The last few weeks of school have been very difficult.  Calleigh was hospitalized for eight days with two respiratory viral infections and one bacterial infection in her port.  We were able to come home last Wednesday, but I had to continue to administer IV antibiotics through her port 3 times a day.  Glad that's done.  She was so sick and felt so bad.  We were trapped in the room with precautions.  She lost a lot of strength just sitting in the bed for over a week.  Thankfully she has felt well this week and seems to be getting her strength back....just in time to go back in the hospital Monday for another round of chemo...round 7 of 9.  We are in the last 3rd of her chemo treatment.  It's getting weary for all of us.  Her body is tired and it takes it longer to heal after each treatment making her more susceptible to illness.  I'm glad it will be summer and my schedule will be more flexible with what has to be done.
K4 Graduation was Tuesday and it was perfect.  My heart hurt so bad this year watching other students do the things she was "supposed" to do and what I had planned.  Her graduation was a victory for us as a family that we have not postponed our lives or hid from the world during all of this.  I flat out ugly cried all through graduation....at my place of employment which was something I have tried not to do this year.  I have tried to be very upbeat and professional all year long and not show emotions in front of others, but Tuesday was not that day.   I also realized we made the right choice bringing her to HSM.  As some of the teachers were emotional with her during the ceremony, I thought to myself, "She is really important to them and they care so deeply for her."  I was so very grateful in that moment and cried harder.  Thank you to Jessica Westmoreland and Beth Kennerly for all they have done for her this year.  You will never know how grateful I am.
Her graduation ceremony is posted on YouTube for any who would like to view.
K4 Graduation

 Diploma

 Receiving her PE Award

My butterfly

We survived the school year!  The social worker at the hospital tells me she will never forget the first thing I asked her after Calleigh's diagnosis...I asked the doctors plenty of medical questions, but my question for Amy was "Please tell me I don't have to quit work!" School has been my outlet and kept me sane.  Friends and colleagues, thank you for bearing with me this year.
Another sweet ending for us is the sale of our house.  We started praying about selling our house after Christmas and tossed around the idea for a while.  In early Spring, God placed some people in our path to lead us to feel we should list our house.  We worked with a wonderful realtor and the house sold in 3 weeks.  We should close next week.  We have found another house and we are just moving up the road but it will not be done for a couple of months so we will be staying with family.  We are blessed and feel like we are getting a fresh start and a new beginning.
Finally, this week marks the end of May and the end of Brain Tumor Awareness month.  I wish it ended for me June 1, but we'll be in the hospital receiving chemo.  Please remember those who suffer from cancer all year long and if you are able, donate to raise funds for pediatric cancer research to help us find safer treatments for our kids.
As always thank you for your prayers and support.  We literally would not have survived this almost year long journey without you.  Pray for us as we look forward to our fresh start and the end of treatment.

We Go Gray Everyday

Tomorrow is May 1 and Relay for Life.  I don't remember what I was doing on this day last year, but I know I did not think about brain cancer and honestly I probably didn't care that much.  I celebrated and honored two students of mine that had cancer at Relay last year, but never dreamed I would be in that position myself.  As you know on June 24, 2014 that all changed.  I learned very well that cancer randomly chooses it's victims.  On May 1, that brain tumor was there, it just hadn't made itself known yet.  We live and breathe cancer everyday.  I never forget it's there even for a second.  It leaves nasty little reminders of its presence everywhere we go.  There have been many disappointments and things we just have to accept, but also there is joy, faith, and blessings.  We serve a Mighty God and He has been faithful through this.
I had the idea to ask Calleigh what she thought about cancer tonight as she ate her shrimp and mashed potatoes.  I thought I would also make my own little list to share.


Cancer from Calleigh's Perspective
Mom: What does it feel like to have cancer?
     Calleigh: You're throwing up so bad
Mom: How does having cancer make you feel?
     Calleigh: Sad
Mom: What do you think about cancer?
     Calleigh: I don't like it when I have it.
Mom: What do you wish?
     Calleigh:I wish it would go away soon.  I don't have any hair, but it will grow back soon. 
Mom: Is cancer scary?
     Calleigh: No (Then we've done our job.)

Cancer from a Parent's Perspective

• You feel more helpless and vulnerable than ever before in your life.
• Your heart feels like it breaks over and over again.
• Friends do not understand you and you no longer understand them.
• The petty stuff in life makes you angry and you have little patience for people who are wrapped up in that.
• You speak a whole new medical language.
• You try not to cry in front of your child.
• You have to shave your daughter's head yourself and it is heartbreaking.
• You watch other parents lose their children and feel an unholy terror.
• You have to advocate for that child.  We are the parents you don't want to see coming.  We will ask you every question we can think of until we are satisfied with the answers.  
• You never take the little things for granted.
• Everyday is a celebration.
• You are more grateful than you have ever been.
• You find new faith in God.
• You have to "let it go.

So please Go Gray in May, spread awareness, celebrate the survivors, honor the angels, but also think about it a few times the rest of the year.  Those of us who live with it, don't have the luxury of stopping June 1.

Calleigh returns to the hospital on Monday for round 6 of 9.  2/3 of the way done!!!  Her counts are dropping lower each round and she has required transfusions and hospitalizations.  Please pray that she tolerates this treatment well and she is able to feel well enough to go back to school and graduate with her 4K class.

And she became a beautiful butterfly!

Overdue Update-Lots of Praise

I haven't blogged lately about Calleigh and I apologize.  We needed a little time and space.  We had a lot of things scheduled and planned for March and we really didn't feel like sharing them.  Last Friday Calleigh had her first post-surgery MRI.  Lance and I didn't tell anyone until it was over and we had the results.  Thankfully we had good results.  We are so grateful to God.  So this meant that her treatment plan will continue as scheduled.

Monday we went for round 5 of 9.  This is a six week round and we will go in again at the beginning of May for round 6.  We are over half way done!!  As long as things continue to go well we should finish in early September.  Calleigh did well again.  Another praise!

We've also been working hard to make sure Calleigh was healthy enough to start school and that we had all the information we needed for her to start.  Again I was afraid to say too much, fearing that "the other shoe would drop" but today was her first official day of 4k--told you I would have my first day of school!  It was definitely not what I planned but was even more special.  A special thanks to Mrs. Westmoreland and Mrs. Kennerly for making her first day special.  You guys are amazing.  I want to also thank my HSM family.  They have been rooting for her and for us since day 1.  They love her too! The support is overwhelming.  I thank the Lord everyday to do a job I absolutely love with such a wonderful group of people.

Life is settling into a busy little pattern.  I've gone back to school starting another degree, racing season has begun, and we have a calendar full of appointments to keep track of.  Thank you for all who continue to remember us and pray for us daily.  We feel your prayers.

We give God the glory for having brought us this far.  Hebrews 10:23