Monday, September 29, 2014

Recovery Mode

Caleb has finally overcome the latest medical scare!  He's home tonight from TCH, recovering from his spinal tap & day of IV chemo.
The procedure went smoothly today.  His Oncologist has tweaked it over & over the past year to customize it for him.  His all-important counts are on the rise, after skipping chemo the past three weeks and he's out of the "danger zone".

Things have been so grim about Caleb's health updates lately, thought you'd enjoy some humor.  He was extremely entertaining with hallucinations, while trying to "shake off" his many medications this afternoon.  He was worried about me because he thought the room kept filling up with smoke & that I should run to protect myself.  He was also disappointed that "his mommy had FOUR eyes".   Oh my!  It's surreal, because tonight, he doesn't remember any of those funny conversations.  That's a blessing though, because it also means he doesn't remember the spinal tap.

Getting some good Daddy lovin'.
 When Caleb woke up once & for all, he thought I was brilliant that I knew exactly what he wanted to eat!  Of course, he didn't remember that he'd given us his "full food wish list" at least a dozen times before, when he was in & out of consciousness.  (Food has been the topic of choice all day, because he hasn't eaten in almost 24 hours.)  Unfortunately, the medications changed his taste buds again, and he couldn't eat the food he was so excited about, after all tonight.

There are a few challenges ahead that we're praying about.  Caleb will continue the same regimen of chemo for the next few months, so we just have to wait & see if it drops his counts again.  We can't help but be concerned that he might have to face another round of bone marrow suppression, but our faith will get us through it.  If it happens again, his chemo doses will be greatly reduced.

Our other concern:  Caleb has been out of school almost a month.  While the transition of going back is big enough after all he's recently been through, it will also be his first time to go to class while taking steroids.  We're just not sure how he'll handle major food cravings & mood swings, but we know God is on his side & will help him get through it.  A great support team will also help.  He certainly has that!
It's Spirit Week at Caleb's school.  Today, the teachers & students dressed up like Super Heroes.   

Our hearts are touched by one teacher, who says Caleb is her hero.
This REALLY made Caleb smile!  :)
Zachary's class actually got on their precious knees to pray for him recently, including teachers and the Head of school.
  5th Graders, who make school announcements, have been praying for Caleb over the intercom again.

Plus, he was surrounded by beautiful cards from his First Grade class before his procedure today.
 With that kind of support, we can't help but believe that Caleb is going to sail through this difficult week & all of the challenges to come.  God bless you all for caring & sharing.

Monday, September 22, 2014

In the Palm of His Hand

"Wish it could be easy.  Why is life so messy?  Why is pain a part of us?
There are days I feel like, nothing ever goes right, sometimes it just hurts so much.
But You're here, You're real.  I know I can trust You.

Even when it hurts, even when it's hard, even when it all just falls apart...
I will run to You, 'cause I know that You are lover of my soul, healer of my scars.
You steady my heart.

I'm not gonna worry, I know that You've got me right inside the palm of Your hand.  Each and every moment, what's good and what gets broken, happens just the way You plan.
You are here.  You're real.  I know I can trust You.  You steady my heart."

Special friends, who know the pain we've felt & know the sorrow even deeper than us, shared this song with us, "Steady My Heart" by Kari Jobe.  (Thanks Larry & Pat, we love you.)

It helps, it helps a lot to be reminded that God has a plan for everything in our lives, even when we do not or cannot possibly understand what's happening.
Just when we thought everything was going to get easy for Caleb, things got really tough.  In fact, rougher than he's experienced in the past year of treatment.  I have never been as overwhelmed, as this past week.  I constantly remind  myself that we're not supposed to be fearful, and that we have to have faith, but when doctors say, there's nothing else, but patiently wait, it's very, very difficult. 

Caleb's bone marrow had to "kick-in to high gear" and do its job all on its own.  There's not a drug or transfusion he could get for that.  I've never been more scared when he lost ALL of those cells.  It has never happened in his treatment before. 

Luckily, brilliant medical workers were able to help keep Caleb hydrated, when he wouldn't eat a bite for days, and they helped keep conditions under control that were changing by the minute.

Things got really tense, when Caleb went into tachycardia and his heart had a hard time keeping up with all of this latest drama putting a strain on his fragile body.  He could tell by the amount of medical experts working on him - and by the urgency of it all - that this was the most serious thing he had faced to date.  

I was casually lying next to him, holding his little body and silently begging God to calm the storm.  Caleb quietly said, "Mommy?"  I replied, "Yes, Caleb?"... afraid of what he was going to ask.  His tiny voice, "The only way I can die, is if I don't take my chemo pills, right?"  I knew at that very moment that God literally needed to steady Caleb's fast-beating heart.   I begged Him to steady my heart, so that I could help reassure this precious child, when I didn't even know the answers of what was to come.  

I honestly feel traumatized after this past week.  I feel like I will never quite be the same.  I have never felt so helpless or unsure before.  We've lost the innocence of thinking there's always a "fix", because we've lost cancer friends along the way in similar situations.  

I do know that God has placed some amazing people in our lives, who have helped us get through this traumatic storm.  From my incredible bosses, who have given me stress-free time away from work with blessings, to family and precious friends in Houston - to the metroplex, Florida, & D.C... plus all the way from Canada to Scotland - to colleagues, and even acquaintances... you know who you are.  We love you, we adore you, we really couldn't live without you.  Thank you for caring about this child and for taking care of us, when we didn't have the strength to do it for ourselves.  

Thank you, God, for transitioning Caleb from the hospital to the Cancer Center today & for allowing him to be at home, where he belongs, with us tonight.  Thank you for doctors & nurses, who have learned how to fight this disease. 
Thank you to our church family, who is always there.  Thank you to the loving families & faculty at Caleb's school, who were there first to pray over his bedside.  

We ARE in the palm of His hand, and we couldn't be more thankful for that, than we are right now. 

Wednesday, September 17, 2014

Faces of Cancer

Caleb has been in crisis off and on the past two weeks.  He's feeling much better at this moment, because his fever has broken, & doctors now have his red blood cell count under control.  There's nothing ANYONE can do to help bring Caleb's white blood cell count up.  His body & bone marrow have to do that all on their own.  He has zeroed-out in that department.  That means he will literally live in a bubble, until he has "safe levels", because it would be very difficult for his body to fight an infection.  We're leaning on God to help with this one.

We face so many thoughts & emotions, as we look back exactly one year ago, when our 6-year old Caleb was diagnosed with Acute Lymphocytic Leukemia.  One thing we've all counted on the past year is Caleb's extraordinary strength! 

When Caleb was a toddler, we nicknamed him "Tank" & "Bam-Bam", because he was so rough & tough.  He was unusually strong.  We never realized then how that would come into play & be so necessary, later in his little life.  We thank God everyday for his strength. 
August 2013.  Caleb's first Kindergarten event, to meet his teacher.  He looked like the picture of health, but his legs were so weak, he always wanted to sit down.  We didn't know why.

On Caleb's first day of Kindergarten, he thought it was a good idea to take his school pictures lying down.  We, nor his doctors at that point, could figure out why he didn't want to walk.  
A few weeks later, on Friday, September 13, 2013, our lives changed forever.  An Oncologist, I had known and interviewed countless times the past decade through my medical reporting, walked into Caleb’s hospital room with tears in her eyes.  I knew before she ever said a word that he had cancer.

Only a few weeks later, our Caleb was transformed through an extraordinary amount of steroids.  We considered it a blessing to be able to kiss his wonderful, soft cheeks. He is, and always will be, our Superman.

Courage the Lion & Elvis the Lion added new smiles and helped fuel even more courage on the hard days.

By November, Caleb felt so rotten, he completely lost his appetite, and we finally understood how those reserves from the steroids were so important.  
By spring, everything seemed to be blooming, except for Caleb's light brown locks.  "At home chemotherapy" became a way of life for us all.  It was just part of our nightly routine and eventually felt as normal as reading a bedtime story. 
Caleb handled life without hair with dignity.  He preferred to wear caps most of the time, but we loved "all natural" moments, when hair was the last thing on any of our minds. 
"Hero the Lion" often came to the rescue.  Caleb seldom got to leave our home the past year, except for hospital visits.  On most days, he accepted this without complaints, but every once in a while - "cancer" was written all over his face. 

Not for long, though!  This is the perfect example of Caleb's strength.  Even though this was a rough day at the cancer center, Cal was still able to conjure up a smile.  Courage the Lion has always been there, lending a comfortable, silent message of Deuteronomy 31:6 to remain strong and courageous.
Sept. 2014.  One year later, the first day of First grade for Caleb brought renewed hope and was one of the happiest days of our lives.  He felt great.  We loved the surprise of his new platinum blonde, curly hair.

Last week, we faced the second scare of our lives with him, when doctors had to search Caleb's blood for "blasts" or leukemia cells, because of his abnormal results. We feared a recurrence, which would be devastating.  God prevailed.  His cancer has NOT made a comeback.  His chemo is keeping it suppressed. 

We got the next big scare a few days later (this week), with Caleb's first hospitalization (admission), since his diagnosis.  A high fever prompted it all, along with bone marrow suppression.  Another blood transfusion and now we watch & wait for hopeful results that his levels will soon rise.
Caleb has already missed several weeks of school, but his wonderful teacher is working hard to send all of his homework home to us, plus a bonus - his loving home school teacher from last year is helping keep him up-to-date.

We just shared a special weekend with Caleb, before this last setback, celebrating all he has overcome the past year.  We were surprised to hear him say that he doesn't feel one ounce better today than he did one year ago, before his diagnosis.  The faces of cancer have certainly changed month-by-month this past year, but not the way he feels.  That's disappointing to us, but expected.  We hope that changes soon though, and we look forward to three years from now when treatment is over.  On his 10th birthday, we KNOW he'll say he finally feels better. We're thankful for our prayer warriors & brilliant doctors & nurses at Texas Children's.

Finally, a special song to share with you that one of our neighbor's wrote for Caleb.  Her grandson is singing & our Zachary is one of the back-up singers.  Enjoy & God bless. (You can copy & paste the link in your browser.)

Monday, September 15, 2014

Prayer Chain Please

We were asked by Melissa to start a prayer chain.  Caleb is being admitted for complications and they are needing prayers this afternoon.  I don't know the specifics but God does and He will be right beside them wherever they go!

Monday, September 8, 2014

Wind Beneath My Wings

Caleb's not doing so well, & could really use some extra prayers. He feels so weak and tired. 
Caleb even slept through boisterous conversations, when his vivacious brother jumped in the car, after school.
Caleb loves school, so when he wants to stay home and sleep all day, we know something is off.  He had lab work done this morning, and now his Oncologist wants him to get a full check-up tomorrow, so we can figure out what's going on with him.  To show you what a go-getter he is, he's terribly disappointed to miss school, because he wants to be the first in his class to read 1,000 words, and he doesn't want to fall behind.

It's very difficult during times like this, because with this new phase of chemo, we don't know what to expect.  It's a relief that my mom is a nurse and can offer insight, but we all hurt together.  So often, we cherish the moments with our loved ones who are closest to us.  Sometimes they go so above and beyond "the call of duty", they deserve special recognition.  I'm referring to my parents. 

The lyrics of "Wind Beneath My Wings" comes to mind.   My mom went to nursing school right before the "empty nest", and I still remember that song being played at her nursing graduation.  She definitely helps keep Caleb & I soaring.
"Did you ever know that you're my hero and everything I would like to be?"
"It might've appeared to go unnoticed, but I've got it all here in my heart.  

I want you to know the truth, of course I know it... I would be nothing without you. "
I want to say thank you to both of my parents for being there literally night and day throughout my life, but especially the past year.  

Thanks for being at the hospital with us so much through the most difficult days.         (Sept. '13)
Thanks for helping encourage Caleb to swallow all of those pills!  (Oct. '13)
Thanks for always lending a loving, helping hand.  (Nov. '13)

Thanks for coming up with outrageous games to make us all laugh.
 Thanks for going "out on a limb" and purchasing your first camouflage outfit - even though that isn't your style, to make the boys happy at their birthday party.  You were quite the Chef Extraordinaire at their camp!  My friends call you "Wanda Woman" for a reason! You're the real Wonder Woman!  (June '14)

The "Griller Extraordinaire"!  Thanks for cooking for all the boy's friends!  My friends call my dad "Dandy Don" for a reason too.  Thank you for your love and magic energy.
Thanks, Daddy, for the fun fishing excursions to distract the boys and add smiles during this tough year.
"Thank you, thank you, thank God for you, the wind beneath my wings." 

Monday, September 1, 2014

Labor Day Memories

We've been enjoying wonderful "family time" this Labor Day & cherishing our relatively healthy Caleb & of course big brother, Zach.
Our camping trip over the weekend was more challenging than any of us would like to admit, because of Caleb's physical limitations from the amount of chemo he's still taking, but we're doing our best to accept this "new norm".  

The boys wanted to jump on this giant inflatable pillow, but Caleb's legs would only allow him to do it for a few seconds at a time.  He enjoyed every millisecond of it though. 
Caleb tried to ride banana bikes with us.  Though he couldn't make it very far, he did his very best.
Grilling out was effortless, except for "Dad".  :)
We couldn't help but be reminded time-after-time what was going on with Caleb exactly one year ago. We were out of town at Caleb's grandparent's house for Labor Day weekend 2013, & he was feeling terrible.  
He even talked a little friend in to pulling him in this wagon, because he didn't feel like walking, just around the yard!
We ended up in the Emergency Room that night, where Caleb was transferred by ambulance to Cook Children's in Ft. Worth.  It would take almost two more weeks to finally get the right diagnosis. The rest, as they say, is history.

On Caleb's one year anniversary of cancer diagnosis in just a few weeks,  I have decided to start updating his blog once a month, instead of once a week.  Before that, I want to take a moment to thank all of Caleb's Crusaders.  That's EVERYONE who reads this blog.  

Thank you for caring about our little boy!  Thank you for praying for him & lending so many helping hands when we desperately needed it.

Thanks to Bridget Roth, who came up with the brilliant idea to start this blog, to keep everyone up-to-date on Caleb's progress.

Thanks to our precious family & friends who have sent cards to help cheer us up!   I've highlighted our Super Warriors before, now I'd like to thank some new ones I haven't had a chance to mention.

Aunt Glenda, you outdid yourself with the weekly cards, many of them homemade, & so many funny riddles & jokes.
Gail Creel, thank you for making sure that both Caleb & I had cards waiting every Monday- AKA Treatment Day - with a fitting Bible verse & funny joke for Cal.
Aunt Nancy, your beautiful artwork & bigger than Texas cards have brought us all joy!   Julie Browning & Tricia Mayberry, your support, fun cards & care packages have helped more than you'll ever know. 
We realize we have a lot of hurdles to jump the next three years of chemo.  This "Maintenance" Phase of treatment hasn't been quite as easy as we were anticipating.  At the same time though, and by the grace of our Heavenly Father, we do feel like we are OUT of crisis mode, & that's a great place to be.  

God bless you all for your continuous love and support.