Wednesday, January 29, 2014

A-OK



Caleb's blood levels have stabilized, so he was able to receive his much needed round of chemo today, just a lower dose than originally planned.

Cal actually seemed to enjoy watching the bright colors light up on the monitor during his heart sonogram.  Hearing those heart sounds was unexpectedly emotional for me.  It's the similar sound you hear during pregnancy of that tiny heartbeat.  I was glad the lights were dimmed low, as Cal can't stand it when I get sad! All I could think about were the dreams I had for him before he was born and how glad I am that I didn't know then what I know now. I wouldn't have wanted to foresee what he'd be going through his Kindergarten year.
Caleb was relaxed during his medical tests.
We were surrounded by children suffering severely today.  Cal's loving nurse reminded me that Caleb's destiny is his very own (in other words, don't compare his situation to others).  They were reassuring words I desperately needed.  His doctor reassured us even more.  

Here's something fun to share with you.  I didn't know a pair of socks could be so meaningful, but check out these "Note to Self's"!  
They're positive affirmations - phrases to say to yourself to build confidence and train your mind.
When Caleb's at the hospital or not feeling all that great, we think it's wonderful for him to read "I am amazing".  We'd much rather him be thinking that, than "I'm sick."
His other new socks say, "I am strong" & "I am perfectly me."  Thanks to the special Stiba fam for these!  What a find... so unique and appreciated.  Caleb loves them! 
We watched the sun go down over the Texas Medical Center tonight.  Sure has been a long day. The comforts of home have never felt so good.

Monday, January 27, 2014

Life's a Beach...



At least for a moment in time!  :)  Only in South Texas can it snow on one day & be perfect beach weather the next!  Caleb got to finally bust out of the house & enjoy a get-away in Galveston.

The water was too chilly for those lil toes, but a beautiful, warm day was much appreciated.
Caleb is feeling much better now, so your prayers are working!  He's talking, eating, and snuggling again (whawhooo!)  However, his blood counts have bottomed out at their lowest level yet, so he's in a holding pattern for chemotherapy.  We'll try again on Wed.  The "big boy" chemo is about to begin, as if it didn't already seem strong enough.  This next round has a possibility of causing heart damage, so Cal will undergo an EKG & Echocardiogram (sonogram) of his heart on Wednesday to get a baseline before therapy begins. Then, doctors will retest his heart after this round of chemo, to make sure no damage has occurred.  It's a daunting task, but we know & understand why it has to be done.  We've already started praying that his heart will remain free of permanent damage.  It's frightening to think about the side effects to come, but we are trying to live up to Caleb's motto of being strong and courageous.
 
Caleb's life has been so restricted to our home as of late, thought you'd enjoy seeing a few highlights from a very special weekend, courtesy of the Mize family.  Cal got everything from a healing massage to his first "steering experience" on an ATV.  So many smiles and so much laughter.  What a blessing!  His home school teacher was there, along with a few close friends from the boy's school. The Mize's wanted it perfect for Caleb, so they had EVERYONE eat the same specialized food as Caleb.  He thought that was "too cool". 



Here's the caring crew who did an amazing job of creating life-long memories.  Bridget (green shirt) is the precious friend who came up with the idea to start this blog, named it Caleb's Courage, and kept you updated that first month after Caleb's diagnosis, when our hearts were breaking and we didn't have the strength to update you ourselves. Mizes on the back left - Cal's teacher, Mrs. McDonald & hubby on the back right.
Cal gives a thumbs up for his first "official" massage by an expert.  He couldn't believe his good fortune.  

Getting adventurous with dad ROCKS.


What a nice change to "just be a boy" & forget about cancer.
We always try to remember that laughter is strong medicine too! 
Psalm 126:2  Then our mouth was filled with laughter, and our tongue with shouts of joy; then they said among the nations, “The Lord has done great things for them.” We know great things are in store for Caleb, especially after all he's been through and all he'll continue to endure.  We also know great things are in store for all of our friends, family, and even strangers who have done so much to make life better for this little boy.

Thursday, January 23, 2014

All By Myself



 "Just want to be all by myself." That has been our silent warrior's request since Sunday.  Caleb first suffered an incredibly sore back for five days after his last procedure.  We got him out & moving too soon and that seemed to make matters worse. 
 
Before the pain hit, Caleb got an incredible reunion with one of his best buddies from Pre-K.  He was so happy.
Cal has lived in warm bubble/Epsom Salt baths for hours each day for relief. Then on Sunday, that horrible "chemo mouth" made a vicious comeback.  It's fairly common with children taking high doses of chemo.  His gums, lips, & entire mouth are so sore, he can barely eat.  We've tried packing smoothies with protein for nutrition & are just encouraging lots of liquids.  The pain has been so severe, he hasn't even been talking.  His loving, understanding, & patient home-school teacher agreed to his request of "sign language" this week.  
 
Mrs. McDonald offers warm cuddles during reading time.
Outside of "school", Cal has only wanted to lie down in a dark, quiet room alone with his iPad.  He hasn't accepted loving hugs, like he usually adores, or comforting pats on the back.  He hasn't felt like playing his favorite board games, and television has even been too annoying for him.  He has just wanted to face it alone.  It's been incredibly difficult to accept that.  He has lost a lot of weight, and his clothes are getting super baggy.

That being said, I got to enjoy a vacation day at home with him today, & he jumped in bed for cuddle time this morn- that was a welcomed surprise!  We have tried different medications all week to help & finally found the right one!  He ate dinner last night (whahoooo!) and was able to eat solid foods again today.  It's definitely getting better, but we still have a long way to go.  Hopefully we're at a point now to help him get through it all hand-in-hand.  It's much easier on all of us, when we can fight this awful thing called cancer together, versus alone.

Wednesday, January 15, 2014

Woeful Wednesday



Whew, what a relief this long day is almost over!  It's been quite a whirlwind.  Caleb had to have a spinal tap today to get a special chemotherapy injected directly into his spine and just to make sure that no sneaky cancer cells have come back.  The maximum amount of sedation is five doses, but for whatever reason, even the max wouldn't sedate Caleb this time.  Something similar has happened in the past, but he eventually "went under", but not this time!  That means four loving medical workers & I had to hold him down, while he cried out during the spinal tap.  It's truly amazing to witness the skills of his Oncologist, who was able to pull off the procedure with what I called my little bucking bronco.

We were to the point of having to cancel & reschedule in the operating room, when I started to pray really hard.  Caleb calmed down, became still, & just stared at me with silent tears, & it was all over soon.  Wish I had started prayers earlier, but got caught up in the moment of comforting him myself.  Caleb needed Someone much more powerful than medicine or mommy.  I truly believe when you call on Jesus, all things are possible.

Cal slept well on the way home! 
The sedation came two hours too late.
Big brother Zach was so excited to see him, but couldn't wake him up. 
Even funny antics like tickling his nose wouldn't work. 
Once we got home, Cal didn't make it past the first door. 
I snapped this photo, thinking it would be fun to show him later how sleepy he was, but then I quickly realized he wasn't lying down because he was tired.
Caleb was actually very sick to his stomach.  Therefore, we have spent the past hour lying on the bathroom floor together (luckily I had just cleaned it!)  :)  It took a while to coax him into bed, but he's there now and resting a little more comfortably.  Looks like breakfast will be his last meal of the day. 
   
I'm still choking back tears, but refuse to give into them, because I know he won't remember any of this (b/c of his medication) & because we feel blessed that things have been going so well lately.

We want to thank you for your prayers.  They've truly been powerful.  The past few weeks have felt cancer-free!   Caleb has been living without side effects & has been eating healthy meals again.   He's been waking up smiling and sleeping peacefully through the night.  Hopefully we'll slip right back into that pattern, after this tough day.  

Psalms 118  Oh give thanks unto the Lord for He is good, for His mercy endureth forever.  Amen!

Monday, January 6, 2014

Back on Track for the New Year!

Happy New Year, Everyone!  Caleb had a few setbacks over the holidays, as his liver & kidneys were "working in overload" and not able to absorb any more chemo, so treatment had to be delayed again.  After a lot of IV fluids, some good R&R & TLC at his grandparent's home, plus drinking fluids, fluids, and more fluids... he's back on track.  He enjoyed having his big bro home for a few weeks to help pamper & entertain him for his long days at the hospital. 
Caleb's shirt is incredibly fitting:  Brave one.
It's been fun to continue Caleb's "Courageous Like a Lion" theme with special new "friends" to add to his collection! 
A big thanks to "Auntie Caroline" for "Hero" the Lion, who in all of his regal power, helps Cal feel safe.  Plus this jolly giant giraffe is for "big bro", to help watch over lil bro.  :)
Special new ornaments from precious friends & fam.  We will keep these FOREVER.  They will rush back memories of all that we've been through, how much Christmas brought us new hope and happiness, and that we, as a family, survived cancer.

Psalms 34:10  "The young lions do lack and suffer hunger; But they who seek the LORD shall not be in want of any good thing."  Though Caleb isn't suffering from hunger from food, he still hungers for "normalcy".  He misses his friends.  He misses school.  He prays daily that his treatment stays on better track, so that he can go back to school next year.  We all hunger for a day when cancer is in our rear view mirror.  We know the Lord is on our side, so we shall not want for more. 4 months down of treatments... about 40 months to go.  Whew!  Here we go...