{Childhood Cancer Awareness} – My Hero, Caleb Huffines

One child touched many lives here in our small town… and he and his family have forever changed my life. This month I will spotlight the need for Childhood Cancer Research and the fight for a cure in memory of Caleb Huffines. Today I will share his story. You can read about his journey with DIPG {Diffuse Intrinsic Pontine Glioma}, as well as his family’s journey without him, at his mom’s blog, Caleb is My Hero.

Caleb
Caleb Huffines, Kindergarten

Sunday, October 10, 2010 12:04 PM

We’re at the ER with Caleb. Don’t know yet what’s wrong. His right side is not functioning properly. CT scan done, more tests to run. Please pray we find out what’s going on quickly & that it’s not serious.

Sunday, October 10, 2010 12:49 PM

Caleb has a mass at the base of his brain. We’re being transferred to Children’s medical downtown. MRI & other tests to be done there as well as meetings with neurosurgeon & oncologist.

Sunday, October 10, 2010 5:49 PM

Met with neurosurgeon. He says mass is located at an inoperable location. Oncology group will meet us tomorrow. MRI scheduled for tomorrow morning. We’ll be transferring to oncology ward tomorrow as well.

These were the initial reports that Caleb’s parents were sending out on Facebook as they began their journey last October. I remember reading them and praying without ceasing that all would turn out well. They continued to keep everyone updated as they awaited an MRI and initial diagnosis from the Oncology team.

Monday, October 11, 2010 8:02 AM

8am – Neurosurgeons came back in. Head of neurology confirmed that tumor is inside the brain stem & inoperable. Projects that treatment from oncology will be radiation & chemotherapy. Won’t know more until meeting with oncology group, which will likely be after the MRI.

Monday, October 11, 2010 10:46 PM

We had an initial meeting with the oncologist. We’ve been given a couple options. One is the “standard” treatment for this type of tumor. The other is an experimental study with additional medication. We need guidance on what to do. The “standard” treatment has a 15% survival rate after 1 year. The experimental study has unknown results, but hopes for a longer survival rate.

I read those words and began to cry. No child should have to fight cancer. I had just watched my mother go through her own journey with Mantle Cell Lymphoma. I had taken to her to the doctor, was with with her at every chemo treatment, anxiously awaited for every blood test, held her hand when she was in pain, cleaned up after her after she had vomited, cut her hair before her treatments, and shaved her head when her hair began to fall out. Plus, I had to tell my mom more than once that we were NOT giving up! We were NOT going to stop fighting! We WERE going to beat this monster and I was not backing down nor was I going to let her! That was with my mom… and hard enough! I could not imagine going through that with my child.

I've Got A Feeling
Caleb dancing to “I’ve Got A Feeling” on 3.24.2011

I watched Caleb’s mom {Angela} as she walked through this wilderness. She and I often talked while one was in the hospital and another was there for an appointment. JJ’s journey began in January and Caleb was well into his treatments by then. When JJ and I were couped up our hospital room in January, Caleb and Angela stopped by for a visit. They live a street over from us, so we were close enough to assist each other as needed. Caleb’s little brother would come hang out while Caleb was at the clinic or had to go to the ER. And yet, although I realize she was crying behind closed doors, Angela was {and still is} such a pillar of strength. She and her husband helped keep me going through our struggles with JJ and I was never more amazed by the power of God as seen in them both. Through every pain, every step ahead, and every step back they continued to praise God for walking beside them.

On March 24, JJ and I were at the hospital for another Play Therapy appointment. Since I had an hour to wait, and knowing Caleb was once again in a room upstairs, I walked over to see him while JJ “played.” As I sat and talked with his parents they asked about my daughter. Their son was struggling to breathe and on a heavy morphine drip and yet they still asked how my daughter was doing. We talked for a while and, although I hated to leave, I had to go get JJ downstairs. I asked Caleb if I could take a picture before I left and he allowed me to. Since he was resting with all the medication, his dad knew just how to get him to wake up for a minute to pose. We grabbed the CD player in his room and turned on the Black Eyed Peas “I’ve Got A Feeling.” Caleb put his hand on the little boombox and began to open his eyes and tap his hand. This had become one of his favorite songs and he woke up as soon as it came on. That picture has become one of my most treasured memories.When I picked up JJ she wanted to stop by Caleb’s room but I told her we would have to wait to see him that weekend since a massage therapist was coming in when I left and he would be in the middle of that treatment. Caleb passed away that following day. JJ cried and cried not understanding why her friend had to die and why she didn’t get to see him first. It was so hard trying to explain the reasons why to both our 5 and 7 year old daughters when we could barely understand ourselves.

That Saturday, our town had dedicated the Opening Day of Little League as “Caleb Day.” Caleb was supposed to ride in on a fire truck and throw out the first pitch. Instead, he delegated his best friend, also a neighbor of ours, to throw the pitch out for him. There were so many people on hand and it was amazing seeing the outpouring of love and support for this amazing family.

After his passing, a local news station interviewed Angela about her blog {shown above}. Parents of cancer patients often blog about their children’s journey with the disease as they go through it, but not many continue after the cancer journey ends. Angel still does. She writes letters to Caleb and talks about how she, her husband, and their younger son are doing now. I believe she sums it up best when she writes:

I just wanted to let you know that you are still missed daily by so many people. You have impacted the lives of people that we may never meet until we join you in Heaven. Thank you, for letting your love for God shine so brightly while you were here.

Caleb was an amazingly sweet boy. His smile was contagious and his adoringly, innocent personality touched everyone he met. I know God has a special place for Caleb and I pray that he is running over the rainbows in Heaven with our sweet Reagan.

In memory of Caleb, and every other child and parent that has fought, is still fighting, or will fight this nasty disease, I have set up a fund through Alex’s Lemonade Stand to raise money for cancer research. They even make it as simple as texting  “LEMONADE E76598” to 85944 to make a $10 donation! $50 can fund one hour of research. You can also donate to Children’s Medical Center in Caleb’s name or donate to may other organizations such as the ones found in the Childhood Cancer Awareness post.

Pray. Fight. Win.

365 Days of Gratitude
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