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.

Monday, August 25, 2014

Classroom Blues

Only because Caleb has been stuck at home learning for a few days!  The school year is obviously going well, because he was devastated to miss class! 

Caleb's blood levels dipped even lower last week, which prompted a few complications.  That means only two weeks into class, he had to take a few days off.   We were really hopeful this wasn't going to happen, especially this soon. 

Caleb is doing well now though & spent the day at Texas Children's.  He got the "all clear" to go back to school, and he's ready for the challenge.
It's heavy on my heart to share this, but Caleb actually wanted me to.  He's really worried because he is struggling to keep up in P.E. at school.  As you probably know, his chemotherapy causes him to suffer severe leg pains and leg weakness.  He wants to "blend in" with the other kids and do what they do, but it's almost impossible for him.  He doesn't want to sit out, yet he doesn't know how he'll be able to do it.  He has three more years of this challenge ahead, so it's not going away anytime soon.  I asked him if I could share this on his blog, and he said I could if I thought people would pray for him.  Bless his precious little heart.  Please help us pray for his strength.  

God always has perfect timing and finds the best way to tell us exactly what we need.  I opened one of my favorite books of all time this week, "Jesus Calling," and received this beautiful message:  "Trust me and don't be afraid.  I want you to view trials as exercises designed to develop your trust muscles.  You live in the midst of fierce spiritual battles, and fear is one of Satan's favorite weapons.  When you start to feel afraid, affirm your trust in me."

I plan to work on my trust muscles and help Caleb strengthen his own little muscles, at the same time.

Don't you love it when Jesus calls?    :)

Monday, August 18, 2014

ABC's & 123's

The Lord is amazing!  Caleb is back in school and loving every minute of it!
He adores first grade and has a new caring & loving teacher.

Caleb's first day of class is one of the happiest days we have ever seen him experience.  He was glowing!   These two bros love seeing each other occasionally in the hallways!
David & I both took off work to experience the 1st day. It was overwhelmingly emotional for us all!

Oh glorious day!
Fresh grooming for class!
I thought it was special when Caleb got his very first haircut in life, but this time was even more meaningful!  He just needed a tiny trim & asked me to do it.  What an honor!  Life really is starting to get back to normal!

We had a little scare on Caleb's blood levels dropping the past week, which is why we're still vigilantly praying for his good health.  It was an important reminder to us that we just can't "let down our guard".

We are appreciative of the amazing children at Cal's school, who are surrounding him with love and compassion.  When I had lunch with Caleb on the 1st day of class, dozens of precious 5, 6, and 7 year old students so seriously explained to me how they've been praying for their little friend.   It touched my heart so deeply and made me so thankful. They had the cutest questions for him and were very respectful.  Several commented on how they liked his new hair and asked why it looks different now.  One asked if she could touch it.  So innocent and sweet.

 It was nice to snuggle up and do homework together this afternoon.  The biggest difference was the 16 chemotherapy pills that I had to add to his after-school snack.  He's handling it all like a champ!  There is no doubt in our minds that it's because of the grace of God and because of our prayer warriors.  Thank you for that. 

Monday, August 11, 2014

Just forget about it!

That's what Caleb and Zachary "told cancer" this past week!

Heading off to Camp Periwinkle!  How cool is this for kids?  Their buses had A LOT of corvette escorts & police escorts, all the way from Houston to Burton, Texas!
Camp Periwinkle was a special time of bonding with others who just know & "get" the ups & downs Caleb & Zach have been through the past year.
One of my former colleagues at FOX26 was there & kept me updated about the boys.  That was HUGE.  A big thanks to David Steinhart for that!  Cal liked playing golf, under his direction!
So much fun to be had... from games, constant entertainment, crafts, and sports!  

Of course, the many chances for an adrenaline rush!
Everything at Camp Periwinkle, through Texas Children's Hospital, was just what the doctor ordered!

Caleb's Oncologist, Dr. ZoAnn Dreyer, was right in the middle of the action, as always, lending love & support to all of the siblings, as well!
It was a great way to end the Summer Break.  The boys go back to school in two days.  We're anxious, yet excited for Caleb. He gets to meet his teacher TONIGHT! 

It's going to be a huge adjustment from the last year, so our prayers will be plentiful!  We pray that the transition goes well and that Caleb finds peace in getting to be around other children and that his new schedule isn't overwhelming!  We pray that he can handle his new responsibilities & be able to keep up with other students.  We pray that he just feels like his old self and not "the child with cancer".  God has brought him this far, and we know He'll help get him through this big phase, as well!