Monday, February 24, 2014

Wiped Out

Caleb underwent another round of the red chemo today.  "Big Red" has zapped his energy level.  Eating is even too much trouble.  Nothing too funny to share about steroid cravings, as there are fewer this time.  However, his love of mayonnaise has returned, along with eggs & black-eyed peas.

Cal was ready to go home after two rounds of chemo, including Doxorubicin ("Big Red").
Caleb's irritation level is high, but he's doing his very best to keep so-called "'roid rage " under control. 

Shortly after leaving the hospital today, I heard sniffles coming from the backseat.  I got scared he was catching a cold and quickly repositioned my rear-view mirror to look at him.  It was a heart-wrenching scene.  His little cap was down over his face, but I could see alligator tears rolling off of his chin, into his lap.  Caleb is stoic and strong and seldom cries.  I didn't say a word, but pulled into the first parking lot I came to.  I got out, gently unbuckled his seat belt, scooted his booster seat over,  & got in the backseat with him.  His little body just went limp in my lap, but his strong arms gripped my neck so tightly.  I don't know how long we held each other and cried.  I don't even know why we were crying.  It seemed like a culmination of things for him:  Trying to control his feelings from steroids, a new chemo regimen that has stolen his strength, serious leg pains from the treatment, and conversations from medical workers that his hair will fall out soon.  I cried for all of those things too - plus wanting all of this to go away for him, yet knowing it's going to get so much worse over the next three months.

I reminded Caleb about God's important word in 2 Corinthians:
"My grace is sufficient for you, for my power is made perfect in weakness.  Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.  That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. "

 I reminded Caleb to talk to God on the hard days and on the good ones, as well.  It was quite a grown-up reply.  He said, "I know Mommy, I do that all the time.  He always tells me stuff too."  Goose bumps.  I asked him, "What does He say to you?"  He said, "It's private stuff."  More goosebumps. 

By God's grace, we are all getting stronger through the pains of dealing with cancer; even Caleb, who is physically at his weakest.  His conversations with God intrigue me, especially that he feels it's a two-sided conversation.  WOW.  That is one of the most powerful things anyone has ever told me.  Our tears ended with a big squeeze and small, knowing smiles that "everything is going to be okay".  

Thursday, February 20, 2014

Just breathe...

That's what I had to keep reminding myself to do at the hospital, today!  It's not a good feeling when your child's room is "reserved for anaphylactic medications"!  

Hard on the nerves to read the sign, but good to know a well-trained staff is ready to reverse reactions, since it's such a prevalent problem.  Loving nanny Nicole encourages Caleb to eat a snack. 
Armed with multiple Epi-pens and monitoring closely for reactions, Caleb's medical team was prepared to combat a potentially life-threatening allergy from this type of chemo. Our nurse told us to all watch for itching, hives, a cough, swollen lips, etc.  Of course, the first time Caleb scratched his leg, I almost had a panic attack! :-)  He didn't know about possible reactions, so he wasn't doing it to give me a hard time either... although I'm sure he would've loved to do that since he's fairly ornery on his steroids right now.  :-)

Emotions were running high throughout the process.  All you can do in a situation like that is hope for the absolute best and be prepared for the worst.  Oh, and just breathe!  Praying helped a lot, and I believe that's the reason we didn't  have to go to "Plan B".  I hugged Courage the Lion just as much as Caleb did today. :-)

Few smiles this week from our typically enthusiastic boy.
There is still a risk of anaphylactic shock for two more weeks, but an Epi-pen won't leave his side.  We feel confident this is NOT going to happen.  

It's been a tough week.  Even steroids haven't helped much with appetite, as Cal has been nauseous & has had a tough time keeping food down.  I take back what I said.  It would be my HONOR to make him fish and pancakes, with an extra helping of syrup on the side!  :)

Thanks for all of your words of encouragement this week.  As God promises & my mom often reminds me, "This too, shall pass."

Monday, February 17, 2014

A Different Shade of Blue...

Periwinkle Blue!!!  We just got back yesterday from Camp Periwinkle and a special time of bonding, reflecting, accepting, and rejuvenating, just in time for Caleb's harshest round of chemo to begin. 
The Periwinkle Foundation is named after a chemo agent called Vincristine, which is derived from beautiful and powerful periwinkle blue flowers.  This particular chemo usually doesn't cause many side effects, so it's considered a more "peaceful drug".  :)  The organization strives to enrich the lives of families whose children are being treated at Texas Children's Hospital.  They sure enriched ours.

Big brother Zach was out of school for President's Day today & David took the afternoon off from work to be at the hospital with us.  
Our rallying family & a silly game of cards seemed to help our tiny patient.
 Cal's spinal tap went a little better than last time, & he underwent three different types of chemo today. Luckily, he was sedated and slept through them all.

As many patients call it, "The Red Devil" protocol began today.  As I held him close and witnessed the first drops of it rushing into his body, I begin to pray to God to protect him from its ill-effects and for it to heal him, rather than hurt him.  Peace came over me.
Caleb undergoing Doxorubicin (red chemo)
From this day on, I decided that this bright red medicine is more like a life-blood for him.  This red liquid made me think of the blood that Jesus shed for us.  That thought alone made me never want to describe his chemo as the Red Devil again.  Zach thinks we should call it "Red Angels", but we don't want Cal experiencing something that hurts called an "angel", so perhaps it will just be "chemo".  :)

Valentine's Day this year was more about the love of our family, than romance, and it was incredibly special.  It began with this outrageously awesome card from Caleb's school. 
Zach's class presented it to me, and when Zach & I presented it to Caleb, along with many hand-written Valentine's Day cards, the look on his face was priceless. I'll remember it forever.
Check out this one, from a dear family friend.  Thanks Connie.
  Valentine's Day was the perfect day for Camp Periwinkle to begin, with so much love in the air.

We enjoyed smores and fun camp songs.
Zach blew us away, by overcoming his fear of heights.
I didn't overcome mine, so I urged David to push me off.  Didn't have to ask twice.  tee hee.  :)
We all LOVED the zip line.  Such a rush.
David, the real-life Spiderman, scaled the wall.
We pushed ourselves with everything from the ropes course to rock walls, rowing, & horseback riding. 
We met amazing Camp Counselors, from teens to adults, who are all survivors of childhood cancer.  It was touching and reassuring to see how strong they are today and how cancer has positively impacted their lives.  Our fun-loving counselor, Bucky, is about to begin Med School, all because of his experiences in the Texas Medical Center as a young patient. 
Bucky dove into the bean bags, before we put them in our canoes.  :)
He rode his bike all the way to Alaska last year to raise awareness about childhood cancer, & now his team plans to ride this year in honor of Caleb.  We are humbled by this amazing gesture.

When we got home from camp, we felt a bit deflated.  It was hard to drive away from that powerful place.  However, there was an unexpected surprise on our porch, filled with goodies to make Caleb's new regimen easier.  It was labeled with encouraging words & signed "From your brothers and sisters in Christ".  The thought still brings tears to my eyes! 
Whoever is responsible for this thoughtful & generous gesture - I hope you're reading this, so we can say, "Thank you and you made a difference!"  We enjoyed lying in bed today and reading the new special book, "God's Wisdom for Little Boys".  
Cal said the book "made him feel wise and stronger."  Out of the mouths of babes.  :)
Caleb begins swallowing pills again tonight, as the steroids have to make a comeback.  Can't wait to see what interesting food combos he'll come up with this time. I'm temporarily working a different shift and get up at 2:30 am, so this time - he won't have to wake me up to cook!  I'll be raring & ready to go, though I do hope he has forgotten about his past cravings for fish & pancakes.  :)

He'll be back in the hospital on Thursday for yet a different type of chemo.  This requires doctors to closely monitor him with an Epi-pen in hand, as patients are at risk of suffering a life-threatening allergy from it.  We're already praying he sails right through it, like the strong little boy he is.  

I wish I could say he's resting comfortably tonight, but he's quite sick to his stomach.  To wrap up our long day, the loving chaplain from the boy's school called and prayed with us.  He encouraged us to pray like the servant Elisha, to open our eyes to see God, so that our hearts can feel Him.  We do!  Whatever trials or tribulations you may be going through, we pray the same for you.

Monday, February 10, 2014

So Many Prayers...

Caleb is doing great!  Clinic went well today.  He feels good, he feels strong, he’s happy. His counts are way up, and we believe his body is ready for the next heavy-duty round of chemotherapy. 
Encouraging words from Cal's nurse and Child Life Specialist & using a heat pack to warm up his hand before blood work.
We have taken a lot of quiet time the past week to pray for others suffering from the results of cancer.  We're devastated to learn a boy diagnosed with leukemia the same week as Caleb lost his battle.  He was doing great on chemo, but with low counts, couldn’t recover from an infection. 
Plus the adult daughter of one of our dear friends is now under the care of Hospice because of cancer.  Our hearts weep for them, yet both of these families still find the time to give us encouraging words.  We can’t get over their strength.   
Caleb got an amazing new reward system today, courtesy of one of my dear friends I grew up with.  (Thanks Rita!) 
His “Caleb’s Courage” necklace allows him to add a bead every time he goes in for treatment.  Everything from lion beads to super stars, & even bright, smiley faces.  Each bead will have quite a story behind it.  It will be an amazing keepsake for Caleb to share with his own children someday, to show them all that he went through and how many times he went through it. When Rita and I turned Sweet 16 together, we never would've believed she'd be offering this type of support one day.

Next week is HUGE for Caleb.  He will begin the toughest treatment that he’ll have to endure.  We haven’t told him and aren’t sure how to prepare him.  We’re just praying more and hoping he’ll pick up on it.  We don’t want to unnecessarily worry him.  Next Monday, he'll undergo a spinal tap and begin a very powerful chemo.  This is why he recently had his heart tested, to make sure his body can endure it.  It’s a bright red medication that will make his tears and urine turn orange or red.  We know this is going to scare him, but we’re already thinking of funny things to say to make him laugh about it.  Unfortunately, older patients have nicknamed the drug, “The Red Devil”, just to give you an idea of how tough it can be.  The potential side effects and warning labels are too overwhelming to even think about.  

As for specific prayer requests, please consider asking God to help keep Caleb strong enough to comfortably endure the next few months.  Please pray for the Lopez family and the Conner’s, whose hearts are breaking right now.  We know there is a very real God who is watching over all of us.  Thank you for caring about our little guy and these other deserving families.