Happy Halloween!

Lil' Mr. Caleb doesn't feel up to putting on his costume tonight for Halloween.  Of course we're disappointed, but undoubtedly understand.  Can't help but think back to "easier" Halloween holidays. 

At 6 months old, we thought our "Cal Boy" looked like a tough cowboy.  

Now we KNOW he's tough.

 It seems unreal that Caleb was a COURAGEOUS LION when he was only 18 months old.  I'm glad I didn't know then what I know now.  I'm glad I didn't know that he would one day soon need the courage & strength of a lion. 

At 2, we didn't put "two & two together" about the Lion & the Lamb reference, until recently hearing it in the lyrics of one of our favorite songs by Chris Tomlin, "How Great is Our God".

At 3, we thought Cal looked like a superhero.
Now we KNOW he's one.

At 4, we thought Caleb looked super strong.
Now we KNOW he is. 

At 5, we thought Caleb looked like he was "out of this world".
Now we KNOW he is. 

Rise 'n Shine!

We were wondering why medical workers kept asking us about Caleb's sleeping habits.  NOW WE KNOW WHY.  He hasn't been able to fall asleep 'til after 10pm these days & is waking up wide-eyed & bushy-tailed at 2am.  The latest chemo regimen apparently makes him feel rested all of the time.  Sweet, sweet voice at 2 am:  "Momma, I'm bored.  Can you please get up with me?"  How do you turn that down?  You don't!  As I sit here & yawn and stretch and feel beyond exhausted, I get a rush of energy when I think:  Caleb is alive.  Caleb is going to be okay.  Caleb is in a good mood.  LIFE IS GOOD.  

Love Me Tender...

"Love me true... all my dreams fulfilled.  For my darlin' I love you, and I always will."

Caleb has a new friend to help keep him brave.  Meet Elvis!  Sticking with Caleb's brave lion theme, dear friend Sonya surprised him with this "Lion King".  :)

Brave 'lil man with Elvis & Courage the Lions

Caleb "rocked" his spinal tap today.  We just got home from all-day hospital stay.  He was incredibly content.  He went 22 hours without food (no food allowed before procedure) but he rarely complained, as the steroid cravings are officially over.

We're adjusting well to our new schedule.  We're making the best of clinic stays & actually able to enjoy (most) of the time there.  Of course, there are painful things along the way, but we try to concentrate on the positive side of it, including joyful snuggles in his hospital bed.

Hanging out with "Elvis" couldn't help me think of some of my dad's favorite songs from the King of Rock & Roll.  "When at last my dreams come true, darling this I know, happiness will follow you, everywhere you go."  No matter what Caleb has to endure, he always comes out smiling.  I know that's because God is watching over him and that happiness will continue to follow him everywhere he goes.  

Up 'n Movin'!

A trainer & family friend is helping Caleb build strength through simple stretching exercises.  (Thanks Peter!)  We're so happy to see Cal UP & are anxious for him to get more active. Caleb's chemo causes odd aches and pains, but stretching seems to bring sweet relief.  It's great to have a Pro with creative & fun ideas.  Many exercises include a visit from the "tickle monster", because we know that laughter is great medicine too.  :)

Stretching Cal's sore back, following spinal tap & bone marrow aspiration

Change of heart!  Caleb's gone from eating about 20 meals a day on steroids to wanting NOTHING.  We haven't been able to talk him into taking one bite of food all day, so the roller coaster of ever-changing side effects continues.  We're pushing fluids to keep him hydrated.  He seems at peace & is enjoying only taking 5 pills per day, versus 20.  We try to find the little joys each day.  It's working. Smiling seems to come more naturally these days.  We feel your prayers & know that you've "had our backs" the entire time.  God bless you all.

Blah, blah, blah...

Caleb just feels "blah".  The latest chemo regimen is definitely kicking in.  The great thing - we know it's wiping out all chances of cancer coming back.  The hard thing:  "the blahs".  He doesn't feel like doing much of anything. Coloring even seems to take up too much energy.  (Makes for great cuddle time though!)  Emotionally it's brutal for him (and me) to pick up his brother at school and see what Kindergartners are really supposed to be doing:  laughing, playing, & hanging out with other children.  Caleb has not gotten to play with other children in 42 days (except for camp weekend), because his immune system is wiped out from chemo.  We try to skirt the issue when he asks how long until he gets to go in public again.  Can't believe he actually wants to go to the grocery store with me now (only b/c he can't!)   :)  Luckily, he doesn't realize he's home-bound/sequestered for 200 more days.

A big plus:  Maggie's ALWAYS willing to snuggle & Cal's Classmates are with him all the time, thanks to this awesome Build-a-Bear (puppy) they made him, with their precious voices singing a beautiful song to him. School staff also left words of encouragement for big brother Zach to hear, in this Camo Bear, in a matching school t-shirt.  

The Craft Fairy comes to visit!  A special friend leaves surprises on the porch when we least expect it, to entertain the boys.  This time, it's all about Halloween in the fun Frankenstein bag!  (Thanks Tina!)

Unfortunately, Maggie thought the marshmallow ghost was her afternoon snack.  Much needed repairs complete!  It's fun to say BOO to cancer!  :)  Hopefully all TREATS this Halloween, and no more tricks.

Another First...

Caleb's treatment is constantly changing.  Today was his first "conscious sedation" for the spinal tap.  He did great.  I (Cal's Mom) struggled a little.  The amazing thing is - for the first time, I got to be with him the entire time!  The hard thing was watching a huge needle enter his spine and seeing his precious spinal fluid drip out.  As a Medical Reporter, I've witnessed surgeries hundreds of times.  It's entirely different when it's your own child.  Still, a blessing to be with him and hold his hand and kiss his sweet face.

Resting peacefully after the procedure, all snuggled up with Courage, the Lion. Cal was VERY courageous today!

Caleb gets THREE types of chemotherapy today, to make sure his cancer does not come back.  He got an injection of chemo in his spine, he got a different type of chemo through a drip that went into the "port" in his chest, and he will wrap up the day by taking chemo by mouth.  Whew!  All in a day's work.  Thank goodness Caleb has a funny big brother to keep him smiling on the tough days.  Zach is the best big brother EVER.  He's still working to make us smile, as "we" all recover from an all-day hospital stay. 

Yes, that's a rat on Zach's head!  :) 

Caleb's Prediction is.... CORRECT!!!!!

Because of you & all of your prayers plus amazing doctors... Caleb's cancer is officially in REMISSION.  When we told him he was cancer free tonight, he simply looked up with a knowing smile and told us, "I knew it wasn't in my body anymore." Praise God that he was right! 

We got even more incredible, unexpected news than that.  His doctors are even blown away.  Caleb has now been put back in the "standard risk" category, no longer "high risk".  THIS IS HUGE.  That means his chemotherapy will remain in the clinic, versus hospitalization.  We believe this will increase his quality of life ten-fold.  We are still in the "shock & awe" phase.  This apparently doesn't happen very often.  We know angels are watching over him and helping "take care of business".  

That being said, we still have a very long road ahead of us.  He has 3 1/2 years of chemo, some months - much stronger - than others.  The side effects & risks are incredibly frightening.  However, we feel confident that your prayers will continue to see him through and that he will sail through this, like the strong little boy he's already been. 

THANK YOU for making a difference in his life and ours.  YOU are helping us by leaps & bounds.  PRAYERS ARE POWERFUL.  God bless each and everyone of you for investing your time, your love, and your efforts for trying to help us deal with this disease that robs the innocence of childhood.  We absolutely could not have endured this difficult time without your support. 

Successful Surgery!

Caleb is resting comfortably at home after an all-day hospital stay.  Surgeons removed the PICC line in his arm (two IV's) that ran from his forearm to his heart.  When he got them a month ago, his fun doctor asked him if he wanted to name them.  In Caleb's own words, "No way - I only name my pets."  Therefore, older brother Zachary named them "Frank" and "Stein".  Fitting, since Halloween is just around the corner. I "flushed" them with saline and Heparin (blood thinner) for the last time last night.

Goodbye to "Frank" and "Stein".  They were somewhat "high maintenance", yet real life savers, as they kept Cal from having to get weekly painful IV's for his blood tests and chemo.

When Caleb woke up today, he had a port-a-catheter in his chest.  This also runs to his precious heart and will now be how he gets weekly blood draws and chemo.  This will be much easier for him, as he can shower and swim.  Whaaaawhooo!  He knows what to expect, because a loving "Child Life Specialist" at the hospital let him see it on a doll.  He got to touch it and play with it.  He decided it DID need a name, since it will be with him for the next four years.  He named his port "Porty Pig".  Too cute.

Caleb is excited he gets a 4-day break from the hospital, yet he's always willing to go back.  That's because the caring and loving staff at Texas Children's has figured out a way to make the awful
"c word" bearable for little ones. 

Thanks to all of our dear family and friends for your words of encouragement, the pats on the back, and most importantly - your prayers.  Much love to you all. 

A Weekend of Emotional Healing

Finally, it's Caleb's mom here - feeling strong enough to update the blog. Words can't express our thankfulness for darling friend Bridget, who has been keeping you updated. I have read each and every one of your meaningful comments. I wish I could respond individually to everyone of you. It's simple to snuggle with Caleb and read the blog, not so easy to type while holding him. :) We spent the weekend at Camp Cliff in Burton, Tx, organized by the "Candlelighters Childhood Cancer Family Alliance". They're known for providing emotional, educational, and practical support to families who are dealing with childhood cancer. They did that and MORE for our family. We left home Friday feeling broken, but came back Sunday feeling whole. Here's a look at how our healing began...

We still keep asking ourselves: How is a child, who has barely gotten out of bed in a month & unable to climb stairs at home, able to climb a rock wall and then zipline down? Only by the love and care and counsel of Candlelighters and the grace of God! We hadn't seen him smile in so long... what a blessing.

LOOK AT HIM GO!!!!! 

Candlelighters encouraged him to paddle his own canoe. He dug deep inside - and DID IT.      

                                                                                                                            

We released almost 400 balloons in honor of children who lost their battle to cancer, for those fighting for their lives like Cal, and those who've defeated cancer.

We wrote special messages on our balloons.

Big brother, Zachary, even dressed-up his balloon, to make Cal smile.

 Believe me, plenty of tears were shed, as we watched the balloons disappear into the beautiful sky, with new hope for the future. (All to the beautiful tune of "Borrowed Angels" by Kristin Chenowith).

Praise GOD...

Today actually went well - despite a 19 hour fast for mommy and Caleb.  The surgery for the bone marrow aspiration and spinal tap chemo came today later than we expected.  No food or drink is common before surgery and so that was done in preparation. Caleb did AMAZING!!!  He was positive and endured the wait like a trooper!  He woke up from the procedure very hungry and happy!  Praise to God for a good day all things considered.

Tomorrow...

Big day for Caleb tomorrow!  Let's pray them through the day.

Crushed...

Monday we got news that Caleb is not responding to the chemotherapy as well as the doctors expected.  They have now moved him from average risk into a high risk category.  CRUSHED and exhausted we learned our new plan for treatment.  The chemo is going to have to get much more aggressive.  That means the side effects will be even stronger.  This chemo will be inpatient rather than outpatient.  He will have several extended hospital stays following treatments and it will be intense treatment which results in intense ???? - I can't even think of a word to describe the side effects being so much worse than they already are on the little guy.  Pray for the strength to accept this and endure it - because there is no one who wants to do this!

This coming Monday, Cal will undergo a bone marrow aspiration.  It is our prayer that he is in complete remission by Monday.  The doctors want every single Leukemia cell out of his body by this point and then the remaining treatments for the next 4 years will be to keep it at bay .  The doctors are concerned with his latest blood work results.  They suggest he may not be in remission yet and that would move him to very high risk.  We do not want that category.  So note to cancer cells:  eviction notice being served Monday!    Please pray for this to be treated with the chemo and that every single ugly mean Leukemia cell is GONE NEVER to return.

Caleb, his family, his doctors - this whole situation needs prayers.
Prayers for healing!!!  Pray those Leukemia cells are gone forever and they need to be gone MONDAY at the latest.  Join us in prayer that heavy hearts can still find rest, unexplainable joy and a strong faith in even the darkest of days!

The Fight is on...

Last week, Caleb got this cool cape from a two time Leukemia survivor - it's labeled Caleb's Cancer Cape!  Devin is a survivor that Caleb met a few years ago at her END of Leukemia & Chemo party.  She has now come back to help walk Caleb through the steps of beating cancer.  She gave him this very cool cape that has all kinds of super power words to inspire him to be strong and courageous through this fight. So great to be inspired by her!  Watch out cancer -  the fight is on and we are sooooo looking forward to Caleb's END of LEUKEMIA & CHEMO PARTY!!!!

This week has been rough for Caleb and crew.  The side effects of the chemo are brutal!!!  He is pretty miserable and it is almost unbearable to watch him be so miserable!  The chemo has caused  really horrible sores in the mouth and that does not couple well with the outrageous appetite the steroids create.   He stays really hungry but he can't eat well - just imagine how that plays out!  His body is really achey and he just feels lousy.  The reality is - it has been brutal.

Today is Monday and so it is chemo day again. Cal is back for another round.  Crazy how this medicine that is making him well makes him so miserable in the process.  PLEASE pray for Caleb.  Specifically pray for Caleb's mouth to get better and for all the side effects to lessen.  Also pray for his sweet parents as they care for him and hurt with him.  It is just rough not matter how you look at it!