Wednesday, January 9, 2013

A public thank you to: Battle4aCure.org

October 10, 2010, our world was torn apart. Our then five year old son, Caleb, was diagnosed with an inoperable brain tumor called Diffuse Intrinsic Pontine Glioma (DIPG). We were told that 85% of the children with this diagnosis would die within one year. We began a journey with cancer that would last only 5 ½ months.

Shortly after diagnosis, a family member told us about the Battle for a Cure Foundation. Through our contact with Battle4aCure, we were asked if we would like to participate in the Christmas Hope program. We wanted desperately to have a “normal” Christmas, but we could barely make it through the day, much less worry about Christmas gifts at the time, so we gladly said, “Okay.”

What happened next was nothing short of a miracle. Our family was “adopted” by at least 6 different families for Christmas that year. We received packages of toys every couple days for almost two weeks. There was one delivery that still stands out in my mind. We were at home watching TV one evening when the doorbell rang. When we opened the door, a large gift bag overflowing with gifts was on the doorstep. We stepped outside to see a lady walking down the driveway toward her vehicle. When she reached her vehicle, she turned back to us and said “Merry Christmas,” then got in her vehicle and drove away. We were overwhelmed with a sense of love and began crying as we walked back into the house.












That Christmas was overflowing with gifts and Caleb was able to be a happy, excited child about Christmas one last time. And the most wonderful part is that our younger son, Caden, was included in the entire gift giving process as well.

Caleb died on March 25, 2011, at 11:45 p.m.

As December 2011 and our first Christmas without Caleb approached, we were contacted by Battle4aCure once again. They wanted permission to send Caden a box for Christmas to let him know that they were thinking about him and hadn’t forgotten him. It was one of the kindest gestures that could have been given. Caden’s favorite toy is the stuffed duck he received from that box. “Ducky” is now a treasured member of our family. Caden sleeps with him every single night and still carries him everywhere he possibly can.

Thank you so much for everything that you do Battle4aCure! As Caleb would say, “We love you to infinity and beyond!”

With much love and gratitude,
The Huffines Family
Richard, Angela, Caden (and our sweet Caleb in Heaven)

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If this post has inspired you in any way, contact Battle4aCure.org to see how you can help. A "Hope Box" like the ones the boys received costs about $50. You can donate to this 501c(3) organization and bring a smile to a child battling cancer and that child's entire family.

Saturday, January 5, 2013

December 2012 Update

December was another "fun-filled" month (well, mostly).

December 3rd - Caden's well-child visit. He's doing really well and everything is going okay, except for the tummy issues. I was still kinda freaking out about it all because I just wanted to know what's wrong with him.

December 4th - Christmas program for the Early Learning Center where I work & Caden goes to pre-school. About an hour before we are supposed to be at the church, Caden throws up again. Drat!! We still don't know what's causing the tummy issues, but I knew that's what it was related to so we went to the program anyway. The kids all did so well. As a teacher & a parent, I was so proud of all of them.

December 5th - Called Dr. Dave' first thing. She decided we needed to get an x-ray of his tummy, bloodwork and then head to her office right after. We went to the imaging center first and while waiting, I'm browsing the Internet & looking at a scrapbook cabinet that I want. I sighed really loud & Caden asked me why. I told him how much I really want to get this cabinet & that it's on sale, but I still can't get it.
"As I continue to drool over the WorkBox I want, Caden goes over to a stranger next to us and says, "My mom wants a WorkBox. Will you buy her one?"
I am beyond mortified and yet strangely proud of his confidence in asking."
We left the imaging center and headed to the lab for bloodwork. As soon as we pulled up, he asked where we were. I told him we needed to have bloodwork done to help find out what's wrong with his tummy. He started screaming as soon as we walked in the door & didn't stop until it was over & we had left the building -- 30 minutes later!

Next stop was Dr. Dave'. At this point, she says that he is still as backed up as he was prior to the last cleanse. She's stumped as to why he's backing up so quickly & we decide to schedule him for an endoscopy & colonoscopy. Surgery is scheduled for December 14th. Hopefully, we'll finally get some answers.

December 9th - light dusting of snow! Not really even enough to stick to the ground, but I got a great shot of it on my beautiful December rose.


December 13th - One last cleanse before his procedures on the 14th. He was placed on clear liquids only after 10am. We had gone shopping the day before to pick out stuff he could eat and drink. I let him choose. Brought home lots of Jell-o and popsicles. Then when it was time for him to actually eat some of it, he felt so bad from all the pre-surgery stuff that he didn't want any of it. I thought, "I must have the only kid in the world who doesn't want to eat popsicles & Jell-o all day."

December 14th - We had to be at the surgery center by 7 am for Caden's procedures. He was not real happy having to wake up early and then being told he couldn't have anything to eat or drink. This was so reminiscent of radiation mornings with Caleb that it was all I could do to keep from crying in front of Caden. So many memories revisited in Caden's words. It was as if Caleb was there again.

"Mommy, I'm starving and I want a cheeseburger."
"No!! I don't want to put that bracelet on."
At least we had already made the decision not to place his IV until he was sedated. I knew better than to try to fight that battle. But watching him fight the anesthesia mask was the hardest. It hurt to know how scared he was. I wanted to yank him off the table and just go home and cuddle him, but I knew we had to find out what was going on. Yet, I was terrified of the potential results. The procedure started about 8:15 am, and he was done about 30 minutes later. The endoscopy & colonscopy showed no obvious traces of anything wrong & Dr. Dave' confirmed that he was finally completely & totally "all cleaned out!" He took a little longer than we thought to wake up. When he did wake up, he was quite a bit cranky, but that was quite understandable considering what he'd been through.


We received the biopsy results on December 19th and updated by Facebook on the next day.
 We got biopsy results back yesterday. No crohn's, ulcerative colitis, celiac, or anything like that. The lining in his stomach is red and irritated, apparently from a prior virus. Will take some time to heal. In the meantime, we have put him on Prevacid (to help it heal faster) and Gas-X to help with his extreme gas issues, in addition to the Miralax he was already on. We are also decreasing greasy/fried foods and limiting straw usage. (I didn't know you suck in more air when using a straw & he LOVES straws.)

His appetite is increasing again and no complaints of stomach pain today.
December 21st - tragedy strikes Newtown, CT. So many families will be struggling through Christmas without a family member because of one man's senseless act of violence.

At bedtime that night, Richard was reading Caden the Bible story about Jesus raising Jairus' daughter from the grave. Caden asks, "When is Jesus going to make my brother alive again?" Richard and I both agree that sometimes it would be easier to skip some stories in the Bible. However, God continues to give us the grace, mercy & strength to keep going on.

Christmas Eve - We had driven to East Texas for the weekend. We attended the family Christmas Eve gathering as usual. It was quite a bit more somber & subdued because it was our first Christmas without Papa Wilson. His presence was truly missed. We drove home after the gathering and as we neared the south end of Dallas, we started driving through snow. It was absolutely beautiful. I love snow! Well, I guess I should qualify that a bit. I've lived in the south my entire life and can still count on both hands (with fingers left over) how many times I've been in snow. I love how it looks, but I don't like to be in it for long because I really dislike being cold! However, I still enjoyed watching it fall and prayed it would last through the night so Caden could see it since he was already asleep.

Christmas Day - The first White Christmas for Caden and me!

New Years Eve - We decided to let Caden watch Star Wars. He was so excited he could barely sit still. We started with Episode 4. As soon as Darth Vader entered, Caden jumped up and yelled, "There's Darth Vader. You bug face!" Caleb would have really gotten a kick out that. I can only imagine the Jedi battles the two of them would have had by now.

And, Caden actually stayed awake long enough to welcome in 2013.

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We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden