Sunday, December 27, 2015

Just Be Held

We hope you had a very Merry Christmas!!!  We sure wish cancer treatments & side-effects could stop during the holidays, but it just doesn't work that way.  "Just be held".  That's what Caleb has needed the past few weeks.  His family, too.  He has done his best to try to enjoy & cherish time with family throughout the holidays, even though most of the time, he wanted to be alone in a quiet room... often asking to just be held. 

It has been an interesting month for Cal, with a lot of ups and downs since Thanksgiving. He caught a virus that made his blood levels plummet.  They've been so low, he had to miss school & stay home & away from crowds the past month.

Even walking up the stairs at home caused him to be short of breath, because of low red blood cells.  Luckily, a blood transfusion helped give him a boost & some added strength.   

A friend of our darling cousin, Gerri, made this wonderful & comforting "Caleb's Courage" quilt, which has been an important reminder to him.  It helps empower him & reminds him to be courageous on the hard days.  Thanks, Lesa!
Driving home from the hospital after that transfusion & all-day hospital stay was tough.  It brought back too many memories of leaving the medical center, as the sun goes down over Houston & the Christmas lights flicker to life.  It reminded me of the rough beginnings of Caleb's treatments and how vulnerable he still is.  As I fought back tears and Caleb was in and out of consciousness, one of his favorite songs came on & he began belting out the tune.  Soon, my tears, along with Zachary's, turned into smiles.  As the band, Casting Crowns sang, "Your world's not falling apart, it's falling into place.  I'm on the throne, stop holding on, and just be held".  Driving home, I held tight to the wheel, but I stopped holding on to my own understanding about why Caleb has to endure so much.  I just sat and felt the arms of Jesus around me.  It felt safe & secure.  Zach said he felt the same way.

Because of Caleb's low levels, he had to revert back to weekly appointments & blood draws.  Luckily, Texas Children's does everything it can to distract kids during the holidays!    

We had a wonderful visitor, who really brought out the boys' creativity.  He's a local college student and writer, who helped them come up with a fascinating story.  It was amazing how he lead them in the right direction to bring about the most beautiful and funny story - with life lessons along the way!
"The Great Fishy Adventure" is about their pet turtle & leopard gecko.
The art department at the hospital also encouraged Zachary to learn a new form of art, which he really enjoyed!

Caleb also got to visit his precious friend, Arda, in the hospital.  
Arda was actually strong enough to get disconnected from his IV pole & walk to the cafeteria with us! Thank you for your continued prayers for this little cancer fighter.  We are still lifting up this beautiful family!  Since the boys often get lonely while their friends are at school, they communicate through FaceTime and play games online together.  I think that's powerful camaraderie.
Luckily, right before Cal became home-bound, he got to participate in a "Reader's Theater" at his school about the Christmas Story, and he was really excited to serve as the Narrator.   

We are so happy he got to experience that, as he was disappointed to miss his Christmas Program at school, as well as all of the Christmas parties.  It's such a magical time of year to miss out on and we can tell that his "cabin fever" is running high. 
Caleb also got to enjoy playing in snow, that we created for our Scout's Christmas party! 
He had so much fun throwing snow balls and sliding on the ice.  We miss hearing him giggle & are relieved that his laugh is starting to make a come-back!!!
Another special moment - even though he felt bad & we had to carry him to the car - he got to go to the Houston Texans game and get an "up close and personal look" at all of the Texans players again!   
Those are some fun & BIG "high-fives"!  
He even got to be there with his Oncologist from Texas Children's Hospital. It was really exciting for him!  Caleb loves football and watches intensely!  The experience is all thanks to the Candlelighters Childhood Cancer Family Alliance and Texans' player, Kareem Jackson.  His sister battled leukemia, so he reaches out to young leukemia patients.  What a great guy!
As you can imagine, being home-bound means catching up on a lot of schoolwork! 

Luckily our saving grace, Mrs. Tammy McDonald, came back to the rescue!  It makes it so much more fun for him to do a large amount of school work with her, and she really helped keep him up-to-speed, so that he will be ready to start the new year. 
Our Christmas cards were a bit different this year.  When we were getting family portraits taken, Zachary grabbed his shoes on the way out the door - not realizing they no longer fit!  As if that wasn't a big enough mess, Caleb overheats a lot because of his medications, so we had to put ice packs under his sweater. 

He also had to take a lot of "water breaks" to stay hydrated.  We didn't realize our photographer was snapping a few of those funny shots, along the way! 
When we got the pictures back - there were some we were proud of - but our favorite ones turned out to be the unexpected candid shots.
While they were meant for our humor only, we realized - they were so transparent - they were a more true picture of our everyday lives!  Balancing cancer, along with everything else going on in our lives, makes it always feel like we're a beat behind.   
This tells the "true story" of the drama we went through that day, with Zachary limping around the Arboretum, & we just burst out laughing, when we saw them.  Zach encouraged me to make "silly cards" this year, and I agreed.
It also reminded me a lot of social media, where it often looks like everyone's life is perfect.  We all put our "best foot forward", right?  

The perfect example is the front of our Christmas card. Everyone is all lined up - neatly in a row - and happily smiling. 
Then you open the card - to find old shoes that don't fit & a crazy looking family.  That's us.  That's REALLY who we are. 
Nothing ever seems "just right" when you have a sick child.  More days, than not this month, we haven't felt much better than a tired shoe.  We can either feel sorry about that or we can rely on God & our faith & make the best out of every miserable situation. That's what we strive so hard to do. 

Laugh - be silly - be so very thankful for the good in our lives - & there is a lot of good - and look forward to healthier days. 

On a super happy note - Santa & Mrs. Claus came to visit us at the house!   

They gave lots of TLC to the boys.  (Thanks so much to Cathy Pellegrino for helping bring this dream to life!)
Santa also gave happy greetings, to our dear friend & huge Caleb supporter, Christine, for her birthday. 

As we wrap-up 2015, we can't believe Caleb only has ONE MORE YEAR of treatments!  To help build his strength, doctors took Caleb off of all chemotherapy for 8 days.  Caleb called it a "Christmas miracle"!!!  He's back to daily chemo now - but half the typical dose, this week.  

 Caleb got some very special reminders for Christmas to stay courageous throughout his battle.  

Thanks to my parents for wonderful symbols of courage.
As the year comes to an end, we hope you'll remember to just stop "and be held" when you need it most.  "When you're on your knees and answers seem so far away, stop holding on and just be held.  Just be held".  Hopefully we can share something that helps us - that will also bless your life, if and when you need it.  

When you need to "loosen your tie" and could use a helping hand, please remember that God is always there.
Thank you for blessing our family by being in this long cancer fight with us.