4 Years and 11 Days
When Caleb was diagnosed at the age of 3 with a rare form of Leukemia called Hypodiploid, Caleb’s parents, Rob and Monique Whan, had no idea what they were about to endure and how Childhood Cancer would change their lives forever.
The initial emotions were disbelief that it happened to their child, anger at the treatment options, fear that their child would have to go through horrific treatment and worry about the financial hurdles that would most certainly come.
Caleb’s Crusade was started because Rob and Monique realized the need for a change in the communities awareness, they also aim to give a powerful voice to these kids that can’t speak for themselves and they strive to ease the financial burden that families endure while their child is in treatment.
Caleb’s diagnosis was high risk and it came with a very aggressive treatment plan. The treatment included a fast track to a bone marrow transplant, which consisted of multiple rounds of chemotherapy and total body radiation. The family would be uprooted from Southwest Florida to Durham North Carolina for Caleb’s treatment. Caleb did not have a match for his bone marrow transplant so this brought them to Duke University. Caleb had an unrelated umbilical cord stem cell transplant in November 2007 instead of using bone marrow stem cells. Duke was the pioneer of this procedure and was, without question, the very best institution for Caleb’s treatment. While at Duke, Caleb’s family was in complete isolation in a rented apartment in North Carolina for over 4 months – but they had each other for support. Caleb’s sister, Baby Bella, was only 2 months old when he was diagnosed.
Caleb’s hero was Spiderman and in his young mind he was a future superhero sidekick hoping that all the transfusions, chemo and radiation would all help him be able to spin webs like the man himself. They would call his blood his “spidey” juice and being that Leukemia was a blood cancer all this treatment was to get his “spidey” juice to work correctly again. Throughout treatment Caleb was happy, he always had a smile on his face. When he was first hooked up to his IV pole he put his feet on it and rode it like a skate board. Caleb thought that all his pokies, transfusions, etc were all normal – it was his reality. He even asked his father on occasion “Daddy, did it hurt you when you were a little boy when they accessed your port?”. Caleb’s treatment failed him, sadly after 100 days when the family returned to Florida, Caleb relapsed. There was no option of treatment being so close to his transplant. Caleb was sent home on hospice.
As the days went by, Caleb’s family let him enjoy his life the best he could. He played on his swing most of the time. Caleb’s parents had to endure the hardship of knowing that any day could be his last. Caleb would always tell them “I’ll be okay,” which was very hard for them to hear their 4-year old saying these words while knowing nothing about death. We enjoyed every one of the 15 good healthy days he enjoyed towards the inevitable. In the end Caleb’s family huddled around him to pray. They tried to get him to talk, open his eyes and smile. One specific moment was extremely special to Caleb’s dad. Rob was by his side and said to him, “I love you Caleb” but there was no reply. He moved a little closer and told him again, “I love you, baby.” Caleb opened his eyes, looked at him and whispered “yuv you.” Those were his last words. Through the night Monique laid by his side, listening to him breathe and praying for a miracle. At 2:30AM, Monique woke up looked at Caleb and told him “I love you.” She began to pray to God and asked, “God if you can not heal my son at this moment and make him cancer free then I beg you to please take him and have him suffer no more.” On March 28, 2008, at 4:30 AM, Caleb took his last breath lying next to his mother. This was only 11 short days after his 4th birthday.
Every day since his passing, Caleb’s parents continue in the fight. They were angry about what had happened to their family and instead of turning that anger into something negative they reached down deep and made something positive. Rob and Monique fought to keep their son alive and now they fight for other families who are in the same battle. While in treatment Rob and Monique had to understand the complexities of childhood cancer and how kids with cancer are not getting their fair share of the help. More people need to know what these kids face and the reality of what families like Caleb’s go through.
Caleb’s parents were on the receiving end of a community network that provided resources they needed while Caleb was in treatment. Most of their support came from family, friends and community. In a fight for your child’s life, you should have all the backing and support you need and Caleb’s Crusade is dedicated to making sure every family has that focus.
Caleb is our hero and this foundation will forever remember him while helping every family we can to conquer this disease.