Thursday, November 20, 2014

103 Degrees, Go away please!

Caleb had a tough night battling his 103 degree fever again, which seems to be the temperature his body has adjusted to all week.  Going on Day 6 of his illness, and it hasn't let up yet.  

Caleb underwent a chest x-ray in his hospital room, to make sure his illness hadn't progressed to pneumonia.  Positive news - the sickness has not moved to his lungs!

Thank you for your prayers.  They have made a difference!  We didn't want to bother you all at first, thinking this would be a simple hospitalization.  Then, we started getting really concerned and requested your help with the prayer chain.  It worked!  Caleb's counts stopped dropping and are holding steady - super low - but steady!   That's HUGE.  

Our specific prayers are for his fever to break once & for all and not return.  He has severe "chemo mouth", and now it's too painful for him to even drink water.  That's tough - considering his continuous high fever.  He has not eaten since Saturday evening.  Our prayers are that his mouth heals and that he gets strong enough to eat.  He's too weak to walk from his bed to the couch in his room right now.  

There are many blessings to be thankful for, including Caleb's positive attitude.  He never complains and takes all of his medications with a smile on his face.  He is one tough cookie, and we are so proud of him.  He never "feels sorry for himself" & never asks when he's going to get well.  He just takes it day, after day, after day, after day, like a little man.  We thank the Lord for his strength.  It makes our job as parents easier, because he just acts as though all of this is "no big deal".   

Caleb is back on the Oncology floor of the hospital, where he was a year ago, when he was diagnosed with leukemia.  It has been a special reunion with all of his nurses & doctors, whom we got to know so well during those few difficult weeks of his first hospitalization.  They are AMAZING, full of positive energy, compassion, & love.  Our hearts are touched by his team of medical care workers.  It makes such a big difference during this trying time. 

A special friend just shared this Bible verse with me, and it's very fitting, because Caleb's little body is so hot, it almost feels like he's on fire:   Isaiah 43:2   "When you walk through the fire, you won’t be scorched and flame won’t burn you.  I will be with you." 

We have felt God's presence and power every day this week.  We know He's with Caleb.  Thank you for your love and support and for rallying around our little boy. 

Tuesday, November 18, 2014

Prayer Chain, Please?

The warning signs on Caleb's door give you an idea of just how vulnerable he is.
Caleb was admitted to Texas Children's late Saturday night with a fever and low counts.  We felt confident he would heal quickly & be home in a few days.  Unfortunately, that's not the case.  He is battling a 103 degree fever now and his blood counts are still going down to even lower levels (and they were already VERY low).  
   
We are begging God to heal him quickly and help his white blood cells regenerate.  Will you please do the same for "our baby"?  Thank you & God Bless.

Tuesday, October 28, 2014

Precious Answered Prayers



Caleb's day at Texas Children's Hospital turned out fantastic Monday, with great results!
His levels are now holding steady, so it looks like his body is finally adjusting to daily chemotherapy!
That means Clinic turned out nice & relaxed, and we got to read books and enjoy the day together.
It is such a relief for Caleb to get a huge break from "medical drama"!
Caleb is able to play baseball, & it makes him so very happy to be on that field! Go #4!
Our prayer is that Caleb's legs get stronger, though.  His sweet legs are a lot like a newly born fawn.  They often get tangled when he runs, and most days, his legs can barely carry him to each base. One of his powerful medications is notorious for this side-effect.  He tries his very hardest though, and never complains.  His inner strength is admirable and makes us beyond proud.  
It's hard to believe that Halloween is actually Caleb's BIGGEST challenge right now!  He's dressing up like "Steve" from one of his favorite games, Minecraft, this year.
Because of Caleb's food allergies, it's just not that fun to go trick-or-treating, because he gives most of his treasures to his big brother.  When we pray daily and ask God to keep Caleb healthy, he reminds God that we need a cure for food allergies. That seems to be more of a bother to him, than fighting cancer these days.
We think this is a BRILLIANT national campaign for children with food allergies.  Our family is going to put out a teal pumpkin this year - & let other children with allergies know our home has "safe" non-food treats for them.

If Caleb could just fight cancer - or just deal with food allergies alone - it would be one thing... but dealing with BOTH is sometimes more challenging than we care to admit. 
Nothing slows this boy down, though.  Caleb was honored at school and given a certificate for meeting his goal to read 1,000 new words! 

Our final big prayer is that Caleb stays healthy throughout the not-typically-healthy winter months to come.  With his weakened immune system, he is at super high risk of contracting any & everything.  We treasure these moments when he's doing so well, and try to cherish each second of the day.  We also beg God to protect him from germs that his body can't fight.  We can't thank you all enough for your continued support and love.  You have helped us considerably through your prayer and caring attitudes, more than you'll ever know.  God bless you all!  Hope to see you back here for next month's update!  :)

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.)
http://www.youtube.com/watch?v=T0ip40j82ws&sns=em

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.)

https://www.youtube.com/watch?v=I29zQCZvLHU&feature=youtu.be