Tuesday, September 29, 2015

No two ways about it...

 Two years of cancer treatments down... less than two years to go, and no two ways about it... Caleb refuses to let leukemia slow him down! 
We got surprising news at Texas Children's Hospital yesterday!  Even though Caleb's chemo dosage was increased last month, his numbers shot even higher this month.  (not good).  There's no reasoning behind it, but his chemotherapy must be adjusted to make up for it, so now, he's on a MUCH higher dose.
While it took a few weeks for Caleb to adjust last time, we know he'll do the same this time! He had to come home early from school today after feeling really weak.  

Now Caleb is up to 17 pills at a time.  That's tough for him to swallow.  Can't wait 'til Cal's bedtime routine only consists of brushing teeth and snuggling up with a good book!

I woke up to an interesting sticky note from Caleb this morn.  He watches me do a lot of social media for my job, so he left me an idea for the most unusual hashtag ever.  He thought this would be interesting to "tweet"!  :) 

I don't think he was thrilled when he wrote it, thus the messy writing, but Caleb wants to invent a GOOD TASTING liquid medicine, to help other kids fighting cancer, too.  That sure would be a blessing!  Who knows... maybe drug makers would "take note" of his hashtag? 
 Besides good humor, Caleb is quite the adventurous little boy!  On September 13th, we celebrated his life, since that's the date he was diagnosed two years ago.  He wanted to try indoor skydiving.  With special directions to his "air instructor" to help protect his port, we agreed to let him do it.  

Caleb's the lil' guy in blue.  :-)  He loved it!
There's also a new pizza restaurant that offers a make-your-own-pie concept - and they have options for food allergy sufferers.  This is the first time Caleb has eaten pizza out in years.  His face tells it all.  What a fun way to celebrate all he has overcome the past two years.
Caleb found the strength to zip line with his buddies! (Thanks to the Mize's for the opportunity!)
Yes!  That's Caleb on the top beam, about to swing down.  There is no slowing him down! 

 Did I mention mechanical bull-riding? 
Yes, he tried that, too! 

Caleb loves playing Fall baseball!  He has a great team, and it's a lot of fun for his Daddy to be the coach!  He's very disappointed to miss his game tonight, but he has done well so far, and gotten runs every time he's up to bat this season!  We are so happy to see cooler temperatures heading to Houston, as it almost broke my heart to find him lying under the bench at his last game, after his body overheated.

 We believe Caleb's faith is what keeps him going so strong!  His prayer warriors are playing a huge role in his quality of life.  He entered some of his artwork in Texas Children's art contest for the Periwinkle Foundation.  His love of God shines through for everyone walking down the halls of the hospital to witness.

The third floor bridge of Texas Children's Hospital is filled with special art from patients and their siblings!
Caleb submitted the painting above him - with the cross in front of a sunset.  He told me he wants people to realize that God sent him on a different path than most kids, but a lot of good has come out of his leukemia.
Zachary chose to paint something with lots of meaning for the Periwinkle Foundation.  He says, "Just like bees & butterflies pollinate flowers to keep them growing, chemo - the color of periwinkle flowers - helps keep my brother alive".
Another special donation in Caleb's name this week... as well as another leukemia fighter, Peyton.  Caleb's school mate, Ben Mize, is still making his Soshen (soap plus lotion products) and donating some of the proceeds for leukemia research to Tx Children's.  He donated more per bottle this month, since it's Childhood Cancer Awareness Month.  sosheninc.com is his online store.  We will feature the story of Ben's loving heart and supportive family on FOX26 on Wednesday morning at 9am.

Seems like it takes a village to get through childhood cancer, and we sure love ours.  God bless you each and every day and for every time you add our child to your prayers. 

Wednesday, September 2, 2015

Summer Sighs...

Out with the sunny days of summer and in with the rainy days... where wet stuff is not just falling from the skies... but also from our eyes.  It's been a tough few days for Caleb.

Cal had a spinal tap on Monday, and as always, put on a brave front. 
The start of school often means the spread of germs, so Cal is battling a cold, but he's also suffering from a spinal fluid leak, following his lumbar puncture (spinal tap).  That means a dreadful headache and weakness.  He's so brave, he tried to go to school, but had to come home quickly both days.  Now he's on bed rest, until that fluid can start building back up.

Last night, I was tucking Caleb into bed.  We finished saying our prayers, and I could barely make out the look on his face from the glow of his fish tank.  I asked him if he was okay.  "Mommy, what is happening to my body?  Why did God give me cancer?"  I caught my breath and put on a brave face and tried to keep my voice strong and steady.  "My darling, darling child.  God didn't give you cancer.  God is protecting you while you undergo treatment for cancer," I reassured him.  "I know.  I'm sorry."  I told him over and over how he didn't have to be sorry.  It's so hard to see your child in pain.  

My heart was still so heavy this morning.  Every morning, when I'm getting ready for the news, I'm in the Make-Up Room with the same reporter.  She could feel the tension.  She just put her arms around me and hugged me so tight and reassured me that everything is going to be okay.  It's so amazing to have such a wonderful support system and to get a hug when you really need it.  That one little thing was so big and has gotten me through the day.  

Caleb's body is also having to adjust to a higher dose of chemotherapy.  It has completely changed his taste buds. He can't even stand the thought of his favorite foods from a few weeks ago.  We are trying all kinds of new recipes to make up for it.  It's a frustrating challenge that I know we'll get through.

The other big challenge has been Daddy David's recovery from major back surgery last week.  It was quite surreal for Caleb to be in the hospital for someone else.  He has worked very hard to pamper his dad and make sure he has everything he needs!  You never realize how much your "entire family support system" is needed, until a member or two is recovering & out of the equation for a while.

Supportive sons!
 I believe that we often go through life's storms to get even closer to our Heavenly Maker.  I always rely on music to open my heart and my eyes during these trying times.  This song gives me strength: 

Here I am, down on my knees again, surrendering all.  
Find me here, Lord, as you draw me near, desperate for you, I surrender." 


It reminds me God is our healer!   
Here's some great news to share- Caleb absolutely adores his new 2nd grade teacher and is so happy to be back at school with all of his little buddies.  I think it's so important for a child to connect with his teacher, so that he/she enjoys school and then looks forward to it for years to come.  Now if we can just get him strong enough to go back soon!!!

We've enjoyed some special times together, before this latest downhill jog... including watching one of Caleb's favorite teams - the Houston Astros! 

Caleb even got to play GOALIE (far right, orange shirt) in Zachary's last soccer match. 
Caleb also has a new friend from camp - what a blessing that is!  We met up with him last week.  It's incredibly interesting and even somewhat humorous to hear two 8-year olds compare procedures and chemo horror stories.  They both have an amazing sense of humor about it. 

Have a Coke & a smile?  Caleb sure did with this special delivery from my childhood best friend.  Can you see it?  She sent us our own 6-pack with our names (my high school nickname)  Caleb chose THREE of them... his name, plus the ones that say Strong & Courage.  How neat is that?  WOW.  Love them.  Thanks, Valerie!   xoxo   
We are specifically praying for Caleb to adjust to his new chemo load, to recover from his excruciating headache, and to fight germs from entering his body.

I'm reminded of an oldie, but goodie, song of Amy Grant's:
"When I am worried, and I can't sleep, I count my blessings, instead of sheep.   I fall asleep... counting my blessings". 

I will do that tonight, because I know that God is watching over our little boy, and I know we have our Prayer Warriors on our side.  God bless you all.