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.

    

   

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.  

Go Take a Hike!

Caleb is beyond ready for his cancer to TAKE A HIKE.  He’s agitated and frustrated and just wants to be a kid again.  It’s almost like he knows he’s in the home stretch. After 9 months of treatment, it’s like being in the 9^th inning… bases are loaded… but he just can’t get to home base.  

He’s ready to go into public NOW.  He wants to be able to ride his bike more without having to stop to rest along the way. 

The great thing about Cal though - he's all smiles when he is on that bicycle.  So funny in his little military bike helmet, topped with artillery.  ha ha.

Caleb is ready to go into the wilderness & enjoy a real hike, that doesn’t include riding on his Mom’s back most of the way.  "You’re getting close, little man, just hold on a little longer", we encourage him.  It seems tougher now that his big brother is out of school, & he sees every day how much energy he's "supposed to have".  He's doing relatively well though, just suffering from a case of cabin fever and “tired legs”.  We’re really working those little muscles and trying to help build his strength back up.

That means fun visits and hiking in area parks, to work on his endurance.  Since his cancer can't take a hike just yet, we're enjoying the great outdoors this summer & enjoying what hiking we can. 

 The boys love Armand Bayou Nature Center in Pasadena.  Fun baby alligators, raccoons, squirrels, & exotic birds to look for!  We even got feet away from a deer, a rare find on a hot summer afternoon.

We also enjoyed a family hike this week at Brazos Bend State Park.  It's breathtaking to watch the sunset & witness hundreds of fireflies lighting up the sky.  Caleb wants to catch them all and keep them forever.  (If only it was that easy.)

 We have done our very best to keep electronics at bay this summer.  

That means a lot more reading and fun games.

Caleb enjoyed Father’s Day with his sweet Daddy

The boys also got to see their Granddad, "Daddy Don".

  They’ll get to see their other grandparents next weekend and are excited about that! It will be good for family to see the great surprise that Caleb’s hair is finally starting to grow back.  

Look at that sweet peach fuzz.  He’s wearing his hat less these days.  It’s so very soft, like velvet.

I adore kissing the top of that little head.  We’re happy his hair is coming back now, so that it will have time to get thicker before school starts.  He’s incredibly self-conscious about it.  It may come and go over the next three years of chemo, but we’re celebrating this milestone, for sure.  It will just add another element of normalcy for him.  Thanks for your continued prayers.  We have one more week to decide which road to lead Caleb down for his next three years of treatment.   We feel confident in our decision at this point. 

Just a quick note of “housekeeping”.  Google changed their blogs a few months ago, and we have never been able to recover the mode of it sending e-mail updates to everyone.  This is a huge inconvenience that no one can seem to figure out on this particular blog.  All of the settings are in place to send out e-mails, informing you that we’ve updated the blog, but they’re not going out to anyone.  If you have an idea about how to fix this, we sure would appreciate it.  When Caleb’s next phase of chemo starts, there probably won’t be as many updates, so it will be super convenient for this option to be available.  THANK YOU & God bless.

Blessed Beyond Belief

Caleb is sailing through his final big phase of chemotherapy!  He took the largest dose yet of "one of the big boy chemos" on Monday.  

We fully expected it to knock him off his little feet.  Here's how he reacted to it:  he got home from the hospital and ran to the yard to play:  soccer, baseball, basketball, then rode his bike and experimented with his new birthday marshmallow shooter and water & dart guns.  Going STRONG for 3 hours.  Unbelievable!

It was a special day at the hospital, and that may have helped!  Double-takes at Texas Children's, as dozens of Houston Police officers filed into the Oncology Department.  They're all pedaling for a cure and raising funds for leukemia and lymphoma.  Caleb had a very special visitor!  

Officer Ed Hinojosa is pedaling in Caleb's honor, ALL THE WAY TO Washington State!

   Please pray for the officers to have a safe & successful journey, in their cross-country relay.  They leave next Tuesday.  One of our precious reporters at Fox 26 covered the story.  You can watch it, by clicking on this link:  http://www.myfoxhouston.com/story/25732188/ride-for-a-cure

Caleb wrapped up t-ball last week with a party with his teammates.  He ended up playing more games, than missing this season, which was a welcomed surprise! 

One of Cal's coaches was kind enough to call him "MVP" of his team at the final get-together.

 More great news!  Our prayers paid-off for Caleb's birthday party and FIRST REUNION with his Pre-School & Kindergarten friends since September!  

We held his party at Camp Allen, a beautiful Christian Camp in Navasota.

I don't think Caleb thought about cancer ONCE the entire weekend!

Caleb loves his little buddies!  :) 

We found out Caleb's quite the Marksman!

Caleb's blood counts were SHOCKINGLY high (close to normal) - the best since treatment began, so he was allowed to be INDOORS with them, without concerns.  It was surreal, to say the absolute least.  Life seemed so normal, witnessing him playing and laughing with other children.  All this, after he'd been sequestered for 9 months!  I think he also did so well during this past treatment, because his party was such a huge "rush" for him. 

Caleb's Oncologist allowed him to ride on this 30 foot high pendulum swing! 

Making up for lost time!

Sock Volleyball at the evening Glow-in-the-dark Party

So fun to see Pre-school friends again.  Lots of laughter!

 Thanks to my best friends for helping "ROCK" the party! 

 

Thanks Christine, Kat, Rosemarie, Shawnie, Caroline, Diana, & Yamile!

Turn out the lights though, the party is over!  David & I have a huge decision to make in the next three weeks.  Caleb will begin what's called his Maintenance Phase in July.  This is when his life will begin to resume some normalcy.  We were surprised to find out that we are in charge of deciding which route to take, as there are multiple treatment options, basically using different dosages of the same medications.  We're told all the plans are expected to have the same cure rate, it's just some are considered much less toxic than the standard care.  Please, please, please, did I mention please, pray for us to make the right decision.  This is something we need to be comfortable with and never, ever second-guess our decision. 

Proverbs 11:14    "With no counsel, the people fall: but in the multitude of counselors, there is safety."

John 5:30   "I can do nothing on my own."

Proverbs 3:6    "In all thy ways acknowledge Him, and he shall direct thy paths."

 Thanks & God Bless!