Monday, July 21, 2014

Family Camp

Caleb is doing great this week!  He's still feeling strong from his steroid boost.  He's very much in the "shock & awe" phase that he can go to any and all public places.  

When Caleb was restricted to home, he never complained, but he would always ask about what "happened inside there" when Zachary went to a popular entertainment center.  Now he knows!  

 Trying to make up for lost time, Caleb wants to try new antics on the ropes course & play laser tag EVERY DAY.  He takes "seeing the world through the eyes of a child" to a whole new level right now!  So much fun! 

Caleb loves hangin' out close to the ceiling.  :)
The boys had fun celebrating their dad's birthday last week, and we enjoyed a "staycay" together. 

Here's a sneak peek... Look out below! 



video

 

They eventually talked David & I into joining them under that rush of water, but we're still thinking it was more fun to witness it, than experience it, ha! ha! 

It's going to be incredibly quiet around our home this week.  The boys are at "Family Camp" in the metroplex with David's family. 


This photo just in from "camp"... tie-dye t-shirts!
Lots of swimming will be involved...
They're loving quality time with family and just having fun being kids.  We're thankful that we have loving family members to offer them this incredible time.  It's also reassuring to know that Caleb is in competent hands for his daily chemo. 

David & I have "date nights" planned every day this week.  It will be a time to focus on one another, which has been close to impossible this past year. 

Psalm 107:28-30 Then they cried to the LORD in their trouble, and he delivered them from their distress. He made the storm be still, and the waves of the sea were hushed. Then they were glad that the waters were quiet, and he brought them to their desired haven. 

Thank you, precious Jesus, for this reprieve from illness for our family. 

Monday, July 14, 2014

Music to Our Ears



The power of music amazes me!  It can uplift and nurture your senses.  It can help bring peace and happiness.  It has definitely done all of that for our family.  Zachary was invited to sing the song he wrote for Caleb at the amazing venue of Jones Hall, downtown Houston, with the new partnership between Tx Children's & the Houston Symphony.  It was so special for Caleb and our entire family!  

They're decked out in purple, in honor of the Purple Songs Can Fly Studio.  Four cancer patients from Texas Children's Hospital also sang the songs they wrote, including a former American Idol contestant, so that was exciting for Zach!
Zach's sweet, innocent voice and words of support for his little brother even brought tears to the eyes of grown men. 

It may be summertime, but Caleb is still getting support from his school!  Our sweet friend, Heather Mize, was able to gather so many get well wishes from students, that she is STILL sending them to Caleb.  Her surprises cease to amaze us, including this video she & Lisa Cates orchestrated and sent to Cal with perfect timing, to help him get over his medication blues.  Talk about sweet little voices...

http://animoto.com/play/iSYqvsd1XhlDf9FrtcTTIg  
(to watch, you can cut & paste it in your browser.)

Speaking of meds, Caleb is now on the joyous side of steroids, our favorite time of treatment.  The severe food cravings and crabby moods are over.  He feels strong and healthy and super happy.  It's such sweet relief for us all. He's been going so strong all week, we can't keep up with him! 

We were not surprised at clinic today when we were informed Cal's blood counts are holding strong and that he's handling this phase of treatment well so far.
 It helped that Caleb had very special visitors over the weekend.  David's cousin, Rhonda, from Woodson, Texas delivered an unbelievable surprise from the 6th grade class she teaches.  This is a unique situation because there are only FIVE students in her class, in their hometown of less than 300 people!!!
Meet our future - and it looks bright!  These kids are amazing.  They put plans in place of how they were going to raise money in this terrific tiny town.

Soon, they got all the students in their school & everyone in their community on board... to raise money so they could give a donation in Caleb's name! 

They spent ALL YEAR gathering cans to sale to help "Cure Caleb's Cancer".
In true North Texas style, they were able to fill this entire cotton trailer with cans, multiple times!
We are amazed at their hard work, dedication, and giving spirits to a little boy they've never even met.  They even got their mayor in on the project to proclaim it "Caleb Day"!
These incredible children literally raised the money one dime at a time and would proudly turn in their change.  This young man came up with the idea to make bracelets and sell them & has been doing that since October!  

Soon, all students were helping.

They learned how to make the bracelets... 
 Then they sold them one at a time!
 
This young lady hung up posters with Caleb's pictures on them, explaining his diagnosis, and sold more than $200 in bracelets!
What a beautiful feeling for Caleb, knowing these children worked so hard to earn every single penny.   They put all of their funds together for a grand total of $3,097.94!!!  Caleb still can't believe that others are going to be helped because of his cancer.  We enjoyed a special presentation of this "bigger than life" check to Texas Children's.


Cousin Rhonda helped the children make a video throughout the year, and Caleb just got to see it for the first time!  It's full of messages from the students & Woodson, Texas business leaders and families.

  He was very touched by it and wants to watch it over & over again.  Now he wants to meet them, so it will be music to Caleb's ears, when we get that trip planned!  We hope these kids know how much Texas Children's also appreciates their hard work and their donation in Caleb's name.
Thanks to the special people in our lives who go out of their way to enrich Caleb's life.  He feels your love and will be forever rewarded by your love.  You've truly made all of the difference.  You are beautiful examples to our children, and the perfect role models.

I'll leave you tonight with one of my favorite Bible verses: 
May the Lord reward you for your kindness.  Ruth 1:8    
We KNOW that will happen. Thank you & God bless.

Monday, July 7, 2014

Spoke too soon…


I now realize I was beyond overly zealous last week about “the worst being behind us”.  That, after dealing with one of the roughest weeks for Caleb, in months.  We are definitely in a transitional phase.  He's lying in bed with a splitting headache and doesn't want to get up.  He doesn't feel like talking.  I "miss" him. 
Caleb’s new regimen involves him swallowing A LOT of pills.
In the past, Cal always knew he would soon get a break from the meds.   Now, he has to do it for the next THREE YEARS.  He’s very inquisitive, & always wants to know his treatment plan, so we “give it to him straight”.  However, knowing there is not even a tiny break on the horizon has mentally changed it for him.  He's overwhelmed, and with reason!  The side effects of steroids have sparked a terrible case of “roid rage”, so that’s probably making matters worse.  He’s such a little “man”, we know he’s going to accept it soon, and every day does seem to get a little better.  Please pray for acceptance and successful pill-swallowing.  Even with some resistance, he has taken more than 60 pills this past week!!!

We’re doing our part through prayer, new pill charts, and we let him pick out new pill planners in bright colors.  
Flashing lights on his reward system & festive July calendar help make it all a little more "kid friendly".
I wish I could just swallow the medications for him.  I wish he could take a morning or night off.  He can’t.  Not once.  His life depends on swallowing these pills.  All we can do is support him and try to understand how difficult it is.  David & I have taken our marriage to another level, becoming a medical team… making sure we’re distributing all of his meds/chemo correctly.  We double-check one another and go over it again & again, making sure it’s all correct.  It’s a big job, and we don’t take our nursing duties lightly.  

I was looking back at vacation pictures, and this one really made me laugh!
It was almost 100 degrees, and we were warned if we took this long hiking trail, they’d probably have to call an ambulance.  Caleb was sure he would be the exception to the rule!

He wanted to go so badly, to see the most famous rock formation at Palo Duro Canyon, the “Lighthouse”.
We were able to snap a photo of “The Lighthouse” three miles behind he & Zach, but he wanted to be touching it!  (Tiny formation to the left of Z's head.)
 Just seeing the silly picture makes me realize… as determined as this little boy can be, he will make it through this miserable time.  I can’t wait to get “over the hump”, and on to a routine that is comfortable for all of us.
 
Hopefully some day we can take the hike again to get this view of the Lighthouse.  For now, we have a much bigger mountain to climb.
On the positive side of it all, it’s summertime and we have a while to adjust, before school starts!  THAT’S HUGE.  

We have had a few highlights the past week! 

Caleb has barely been in public since pre-school, so no surprise that he wanted his very first “public appearance” to be at his favorite indoor playground, where we used to enjoy Pre-K play dates with his little buddies.
He wanted me to join him in those tiny tunnels at "Stomping Grounds"… that was quite a mommy challenge.
Whew – a better workout, than a gym!  I kept thinking, "Wow, so this is how our hamster feels." 

Caleb also got to see the horses at a magical place called the JoyRide Center, a therapeutic program to strengthen the body, mind, and spirit.  
 He even got to meet the Houston Police Department’s Mounted Patrol and feed peppermints to “Smash” the horse.  Luckily, Smash pulled a smile out of Cal, but that was the only time, all day. 
We got to go to an Astro's baseball game with the Candlelighters Childhood Cancer Family Alliance.  That helped take his mind off of awful medication side-effects. 
We tried other distractions, like one of his “favs” – golfing with dad & big bro Zach.   
Hitting that ball helped release a little steroid aggression.  Anger management at its finest.  ha ha.
Because of steroids, it's no surprise that Caleb’s typical seafood cravings are back.  I finally took a break and allowed someone else to cook it for us! 
When our waitress wrote ‘feed me’ on Caleb’s “bib” – I wanted to tell her – “You have NO IDEA how appropriate that is”, with his highly increased appetite!  I'm trying to steer clear of being "the crabby Queen" though.  ha ha.
One interesting thing to note:  Caleb can finally go INSIDE a restaurant.  However, after eating on patios & away from germs with his compromised immune system the past year, he still only wants to be on patios.  Zach feels the same way.  So, if you’re in Houston and see us sweating outside in 95 degree heat, & we’re the only ones outside, that is why!  Sure hope they get over that one soon.  :)

I saved the best for last… we got to go to church as a FAMILY OF 4, yesterday!
I had envisioned it being a picture-perfect day, but Caleb felt horrible from medication side-effects.  Steroids give him splotchy red cheeks, and it was obvious that his cheeks matched his mood.  The Director of Early Childhood Ministry was an angel, who kept checking on him, and said he did a lot of “observing”, rather than participating in every event, but he was very happy when we picked him up from Sunday School.  That was a relief!  The transition from being home alone to being in a classroom with lively children will certainly take a little time.  We pray he continues to embrace the changes!    

The sermon couldn’t have come at a better time about how to get through life’s biggest challenges.  Whew, emotions really got the best of me.  Couldn't help but think back to how different life was last summer, before diagnosis, the last time we were in the safe haven of church together.  I didn’t even realize how much it had gotten to me, until a sweet couple behind me offered a tissue.  Undoubtedly an emotional day.  I keep reminding myself this is a cancer journey that will have its ups and downs and will last a very long time.  It is far from over,  but we know God's peace pillows the head, when God's promises calm the heart.

    


   

Monday, June 30, 2014

Marvelous Maintenance



It has begun!  Caleb has officially completed all of his weekly IV chemotherapy.  Now he begins what is called the Maintenance Phase for the next three years.  After much research, physician consultations, expert opinions, and meaningful prayer, we selected Caleb's new regimen.  Now we must remain faithful that out of five different options, this is the best for Caleb.



It's a bit on the experimental side, yet it is considered to be safe and effective for Caleb, and most importantly - cure his cancer!!!  The big deal about this treatment - it's expected to help children in middle school & teenagers who are diagnosed with leukemia in the future.  They often suffer terribly from life-long side effects.  Caleb will hopefully help pave the way for doctors to decide if changing "standard care" can help their quality of life. 
  
Cal did well during his spinal tap today.

It was nice for him to have our whole fam with him for his ten-hour hospital stay.


After sedation, we could not get Caleb to wake up for other treatments, but loving medical workers figured out creative ways to help our own little sleeping beauty.
A nauseous tummy kept Caleb at the clinic after-hours.
Looking toward the future, Caleb will now go to clinic every other week.  He'll take chemo pills every single day for the next three years, then he'll get IV chemo, take steroids, & get spinal taps every 3 months. 

Getting every other week off from clinic visits is a huge blessing!  It will help him resume normalcy, & it will also help keep his blood counts higher, leading to a stronger immune system.  It's finally time to start taking him back to public places.  We can't wait to take him to church!  David & I have been tag-teaming in the parking lot (one home babysitting Cal) and going to separate services, but we're ready to go as a family again.

Today was tough reality, following our family vacation that we just got home from last night.  Caleb was a strong lil' warrior, who couldn't be stopped!  
He hiked up the steepest hills he could find...
He laughed...


 He zip-lined through the Palo Duro Canyon, like the courageous champ he is.
He rode crazy banana bikes...

It was marvelous to witness.  I don't think any of us thought about cancer for days.  It is the longest life has felt normal, since his diagnosis almost ten months ago.



Caleb left a message for you, in the dirt of Cadillac Ranch in Amarillo...
That is... after leaving fun, LEGAL graffiti behind.

Then he came home to find a HUGE surprise from his "Auntie Caroline" & "Uncle Gary"... his very own water slide.  Didn't even take time to put on a swimsuit, he was so excited.
Caleb has truly taught us about perseverance.  When his legs get weak, he just sits down (no matter where he is).  He won't allow you to feel sorry for him or get a sorrowful look in your eyes.  He hops up the second he can go on again.  He never complains about anything, even as he battles nausea at this very moment.  I have learned so much from this little boy.  Even though it's been a terribly hard year for us all, I feel like we will be stronger forever.   It's interesting to realize all of the important lessons we've learned from a Kindergartner.
It was incredibly quiet in the car on the way home tonight.  When I stopped at a traffic light & turned around, I saw why.

Cancer is exhausting on the entire family.  Caleb has taught us to make the best of it.  We can just picture Jesus, leaving his footsteps in the sand & carrying not only Caleb, but his mom, dad, & brother, every step of the way the past year.  With you by our sides, we did it!  We feel like the worst is over.  It's OVER!!!!   Hallelujah and AMEN.