Monday, April 14, 2014

The Gift of Life

We knew before we arrived at Texas Children's today that it was definitely time for another gift of life!

Caleb was in big need of another blood transfusion.  He has been very pale and hasn't felt like getting out of bed the past two days. 

Cal did not get his doctor's approval to play t-ball over the weekend, which ended up being a blessing in disguise - as he wouldn't have had the energy.  He says his legs are "just so tired". He was able to at least get pictures taken with his team yesterday, but he did ask us "How far will I have to walk from the car to get there?"  He made it & with a big smile on his face!  :)

As Caleb was opening some of his mail, he said, "Mommy, you should really blog about this." All-righty then... here we go!   :)  

This is a picture board that highlights one of the biggest distractors of cancer for everyone in our fam. 
Caleb wants you to meet "Little Al", a funny little lavendar pig, who is quite the adventurous soul and comes to visit us multiple times though the mail each week.  He has been very busy "competing" in "the Winter Olympics".

Cal loves Little Al's snow boots and all of his antics.
We never know what Little Al is going to do next! 
He's quite the downhill skier, as you can see.  :)
We were gravely concerned when Little Al had an unfortunate accident...

It was a big crash, but he survived this awful snowbank.
 ha ha. 
 This brilliant idea is all courtesy of one of David's long-time friends, Mike Bleier.  Caleb thinks he needs to write a book!  Thanks for the laughs, Mike.

Caleb also wants you to know how amazing his school is!  They have been sending him cards constantly since September... and EVERY SINGLE DAY the past 3 months, to help him get through the roughest rounds of chemo.

There are no words strong enough to thank Heather Mize for her efforts to mail these day-in & day-out and make sure they arrive on time.  I CANNOT imagine mailing something EVERY SINGLE DAY.  It's an incredible effort that has raised the spirits of our lil' man more than you could ever imagine. 
 Caleb has more amazing pen pals, who've been with him throughout this challenging time, and we'll try to introduce some of them in the days to come.

Speaking of September... it's hard to believe that seven months ago today, Caleb was diagnosed with leukemia.  (Though we knew the night before -the infamous Fri the 13th, it was probably cancer.)  

This was Cal, looking out his hospital room in September.  He had to be wondering - what in the world is going on?  Now he knows. Or perhaps he was just being a kid and thinking - wow, cool cars 9 floors below.  :)
  Our lives have changed so drastically since then.  Our social lives have come to a standstill.  We spend almost every spare second at home, mostly alone.  It probably sounds lonely, but honestly it hasn't been at all.  I can say we've had more happy days than sad ones.  I'll attribute that to the immense support from all of you, who read this blog & pray for us.

Caleb still struggles with his hair loss & studies this lil' guy, who is also a hairless cool dude. 

This is such a great learning tool for children. It's from an amazing young lady who encouraged toy makers to design these Bald & Beautiful dolls for young cancer patients or people with Trichotillomania, like her (which is the compulsive urge to pull out one's own hair). 
 I interviewed Chloe several years ago & never realized at the time how much she'd end up helping our family.  A special thanks to Chloe.  She has turned her struggles into a passion to help others.  I've learned so much from her.  Her story means more to me than ever before, because a few of the boys, who shaved their heads in Caleb's honor, are being made fun of, outside of school, from kids who don't know the meaning behind their bald heads.  It breaks our hearts.  If you ever have a chance, you can watch Chloe's & Emily's inspirational story from one of my newscasts:  

At the hospital today, we sandwiched Caleb between two special prayer blankets.  Every square inch & stitch was prayed over during the making of them.  They make Caleb feel very happy and safe & secure.  A special thanks to my cousin, Gerri & her church for one, and an amazing teacher at Cornerstone Christian Academy for the other.  Caleb's strong faith lets him know that God is helping take care of him, just as much as his loving nurses.

Caleb's nanny Nicole joined us for added support today.
 It's touching to see how much these blankets mean to this little boy.  He takes the prayers very seriously and wants to make sure he's "covered up in the prayers" each night.  The fact that Caleb's faith is so alive in his own little heart has been one of the biggest rewards in this cancer journey.  We may have never witnessed it so clearly, if he hadn't been diagnosed with cancer. 

His attitude reminds me of a song I used to sing in Sunday school when I was a little girl, "Hide it under a bushel - No!  I'm going to let it shine!"  

"You are the light of the world—like a city on a hilltop that cannot be hidden. No one lights a lamp and then puts it under a basket. Instead, a lamp is placed on a stand, where it gives light to everyone in the house.  In the same way, let your good deeds shine out for all to see, so that everyone will praise your heavenly Father."  Matthew 5:14-16

We're going to continue to let our lights shine & also shine the light on the amazing, caring people in our lives whose great deeds deserve it.

Monday, April 7, 2014

It's a GOD Thing!

We were expecting this to be Caleb's toughest time, after receiving daily chemo the past few weeks. 

At-home chemo has become "more natural" for us all & has just become part of our bedtime routine.
David is "the rock" of our family.  His strength, faith, & support have never faltered a day.  I only realize that he is also vulnerable, when I witness the pain etched on his face while administering chemo to his baby boy; realizing the responsibility of giving these medications that will literally save our son's life.
We had been warned that Caleb wouldn't feel like getting out of bed this week.   Cal had different plans for himself.  I tried to keep fear at bay with this phase of treatment (but that was hard!) As my dad has taught me my entire life, most of our fears never come true.  He was definitely right, again!  Our Heavenly Father also encourages us:   "Do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand."   Isaiah 41:10.  It feels as though God has been upholding Caleb with both hands!  He's actually had more energy than he's had in weeks.  It medically doesn't make sense, so we know it's from the power of all of our and your prayers! 

It's also been every mother's dream that Caleb has craved all things green & healthy this week!

Yes, dinner at its finest.

Caleb got to tag along at Zachary's Scout's camping trip over the weekend and actually got to go hiking! 

Cal walked more than a mile.  How can that be?
He was frustrated he didn't make it 2 miles with the big boys, but we were ecstatic to see him go as far as he did! 
Cal's sense of humor is still shining through.  We obviously got left behind from the group, but this is how he said he'd protect me from "Chupacabra" in the woods.  Funny boy.
Medical workers  are "scratching their heads" over his high energy level... especially since his blood levels have plummeted to a new low.  He spent the past 8 hours at Texas Children's Hospital today, getting a blood transfusion & for the first time, he had to receive a transfusion of platelets. 

This should give him a new burst of even more energy.
Since Caleb has hit his lowest level of neutropenia (extremely low white blood cells), he is at the greatest risk yet of infection.  We've been encouraged to wash our hands even more (as if they weren't already raw, ha ha), start scrubbing Cal's fingernails & cleaning surfaces in our home multiple times each day, trying to keep as many germs at bay, as physically possible.  We'll be praying he avoids illness & hospitalization during this vulnerable time.

All-in-all, it was a peaceful time of naps & snuggles & card games today.  We have found a way to make all-day clinic stays pleasant & "our new norm".
We appreciate your continued TLC, concern, & prayers.  It sure feels good knowing God is in control, & that everyone who follows this blog is "on our side".  God bless you all and everyone who is suffering from illness.

Monday, March 31, 2014

You Can't Keep a Good Man Down...

.... including a lil' man!  We were hoping Caleb would make it to the ball fields within the next few months.  We never imagined it would happen over the weekend! 

He woke up Saturday morning & asked if his team was playing.  The next thing you know, we're in the stands & praying for him to safely make it through the game.  He got to put on his Orioles uniform.  WOW.  We still can't believe it.

Let's play ball.

Caleb has barely made it out of the house the past six months, yet he managed to make three points for his team!  Yes, I was the crazy mom in the stands cheering him on, laughing & crying... all at the same time!  We just know the ONLY reason he was out there, on this picture-perfect day... where he's supposed to be... just being a kid... is because of the uplifting prayers from our family, friends, colleagues, and even special prayer warriors we've never met.  Thank you soooo much for that! 

We raced to him after the game and asked him what he thought about it, and he said with the biggest smile you've ever seen, "LEGS SO TIRED!  Where's the hand sanitizer?"  I squeezed his little body so tight, while he insisted we race to the car to get him clean... (This from a child who used to resemble "Linus" from Charlie Brown, with a trail of dirt behind him & carefree about germs)   :)   He's learned a lot about his own care, & we're very proud of him for that!
It really was surreal watching him play. So fun to do something "normal".
Caleb has been able to keep a great sense of humor through it all!  My darling college friend from BU sent a box full of wigs to let the crazy times roll... and they have!  THANKS FOR THE LAUGHS, SHAWNIE!!! 
Wooly caveman.

Chemo at home has gone fairly well.  We learned how to administer it ourselves through the port in his chest. Nurse David (AKA Cal's daddy) takes it very seriously!
It has been hard for Caleb to understand why he has to get chemo at home everyday - he thinks that should be reserved only for the hospital.
 Clinic started out all smiles today, with a visit from a furry friend.
This is the last time Caleb will receive this type of chemo in the hospital, (he's happy we're starting to hit "lasts"), but we'll  administer it at home the rest of the week. 
The smiles disappeared immediately AFTER chemo though, and it was very difficult to get Cal to the car.  He was nauseous and felt weak.  
Cancer does stink - but side effects from chemo are much easier when sleeping.   Caleb's shirt is a gift from a wonderful organization called "Made With Love and Care".

All-in-all, I'd say the past week has been much easier than we anticipated.  Caleb coped by asking us to remain "very quiet".  He didn't want the TV on, no radio playing in the car, and he preferred us to whisper.  For some reason, as long as it was super quiet, he could cope. We were happy to meet his requests.  That was a first - but we never know what to expect each week.

As for specific prayer requests, we are praying for Caleb to remain strong.  His levels are incredibly low, and again, he's at an extremely high risk for infections.  His brother has had a fever & virus, so we're doing our very best to keep them separated.  It's hard because they want to be together.  Caleb asked for my cell phone, so that he can call Zach on our home phone - to find out what he's doing in the other room.  Pretty cute!  He wants to be doing the exact same thing as his big bro, so it's great that he feels well enough to even think about that!

For all of you who have cried with us on the hard days and rejoiced with us on the good ones, this is what I have to say to you, from Ruth 2:12:
"May the Lord, the God of Israel, under whose wings you have come to take refuge, reward you fully for what you have done."

So many of you have done so very much for our family.  There's not a day that goes by that you're not also in our prayers.  Our prayers are ones of thankfulness.  God bless. 

Monday, March 24, 2014

A Lil' Texas Tornado...

Just blowing us away!  We can't believe Caleb's progress, so we're going to nickname him the Comeback Kid!  It MUST be because of your prayers!

Caleb came down with a respiratory infection on Friday that immediately turned into a severe seal-like/barking cough.  We were in contact with the hospital & had our bags packed, in anticipation of a hospital stay.  However, each time his fever rose, it would soon break, and he got to heal at home!  We shared a long, comfy weekend in bed, playing Legos & table ping-pong. 

Instead of Where's Waldo?  It's Where's Caleb?  When it gets really quiet in the house, we know it's time to go cover him up and "tuck him in".  Just like when he was a baby, I miss him when he's napping.

 Caleb naps in the oddest places, as he tends to just "drop in place" when he's tired... including the kitchen floor, while I'm cooking all of his seafood!  

This means our floors have to remain "squeaky clean".

Unfortunately, Cal's illness cost him a very unique opportunity to throw the first pitch to open his Little League's season.  It was such an honor for him to be asked, & he was sad to miss it, along with his new team's first t-ball game.  He hasn't had the strength YET to make a practice, but we can't wait to post a picture of him wearing his Oriole's uniform!  We just know it will happen sometime this season (he already has his doctor's stamp of approval.)  

David got to be there for his spinal tap.

 Caleb's treatments took TWELVE hours at Texas Children's Hospital today!  Doctors sure have figured out how to fight leukemia!  He received four different types of chemotherapy... three new ones.  Two were given by IV, one type is a pill he'll take each day for the next few weeks. The other was injected into his spine during his spinal tap.  (That went incredibly well by the way!  Whew!  As difficult as those procedures have been, it has to be prayer that spared us drama!  Of course, we appreciate the amazing skills of his doc, as well!)  Caleb received four hours of IV fluids to flush his little kidneys, so that he won't suffer long-term damage from the drugs' powerful punch.

Now a home health nurse will help us administer chemo almost EVERY day (into the port in his chest) for the next two weeks. 

I try my best to keep fear at bay, but admit I was overwhelmed driving to the hospital today... mostly because of the unknown of what to expect from side effects over the next few weeks.  My darling sis-in-law lovingly reminded me to put all of my fears in God's hands.  Thanks Donna!  It worked.

It's hard to stay on the "outside" of his bed"... while nurses prep him for his procedure.

My dear friend, Mary Jo, lit the candle in the middle & prayed with us through Cal's chemo...

Caleb really looked deeply into this photo and seemed to take it "very seriously" that this was glowing in a nearby chapel for him.
Plus Zach's class sent us this special message of encouragement (Thanks Ms Munoz, sweet students, & Heather - videographer/editor extraordinaire!) (You'll need to copy & paste into your browser to view the vid.)

The boy's school also held a parental prayer meeting last week, & I understand it was very powerful. David was able to take off work to be there, but Zach took David to their daily chapel, & he unknowingly missed the meeting in another part of the building.  (He thought he was the only parent to show up.)  A big thanks to everyone who took time out of their day for Caleb and our family.
Please know we were there in spirit, and we appreciate you so much.  Believe me, your prayers were answered today, as everything went so smoothly.

I didn't last long hugging him through bars on his bed... it was a pleasant day of snuggles.

We just got home, and Cal is in his own bed now.  He has a splitting headache and is too nauseous to take anything for his head or for his upset stomach.  He hasn't had a bite to eat or a sip to drink all day.  Hopefully he'll make up for that tomorrow!  Time to go administer one of the most important treatments of the day:  TLC.
 We're at peace because of you all, and soon the worst should be behind us. Thank you.