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.