It all began on August 20 of 2007. My son, Caleb, was diagnosed with leukemia at 3 1/2 years old. Our lives were thrown into the childhood cancer world that we had never known existed other than commercials around the holidays for St. Judes. We were presented with a standard risk treatment for Acute Lymphoblastic Leukemia. This was tough enough to swallow but just a few days later we got further pathology which diagnosed Caleb with Hypodiploid ALL which changed our treatment to high risk with a poor prognosis of around 15%. This high-risk protocol included a Bone Marrow Transplant, (BMT). We did not have a family match so our options were narrowed to using unrelated umbilical cord stem cells for his transplantation. With this being the case we were referred from our hometown of Fort Myers to Duke University in Durham NC. Duke was chosen because they were the first in the world to use umbilical cord stem cells for a BMT and have seen the most patients in the world than any other institution. We were prepared to stay at Duke for an average of 5 to 6 months for this procedure. The BMT went nearly by the book with very little side effects and nearly record engraftment time. Upon returning home Duke keeps their patients for a full 100 days post transplant to evaluate and do a full work up at that time. During this work up we learned that Caleb had relapsed and given the fact that it was so close to transplant there was no further treatment options for a cure. We were sent home and soon put our son on Hospice care. We learned of Caleb’s relapse on March 7th of 2008 and on March 28th Caleb passed and this was just 11 days after his 4th birthday.
Through the grief and a bit of anger, my wife, Monique, and I wanted to continue to fight and let people know that this happens in their own back yard. We already lost our son but we wanted to fight so other children do not have to suffer our sons demise and so other parents don’t have to walk in our shoes of grief. I immediately started researching what we can do and found CureSearch, who at the time led the advocacy initiatives on Capitol Hill. Upon finding these national efforts I decided to sign up and take the fight to the nations capitol. In June, just 2 months after we lost Caleb I was sharing his story with our lawmakers and presenting legislation to fund more research and pave a much needed pathway for more drugs for kids with cancer.
Another aspect that was unique to our story is that when Caleb was diagnosed our daughter, Isabella, was only 2 months old. This made the situation a little more challenging and we insisted on keeping our family together while we had to leave home for Duke. The only way this was possible was due to the community support of family, friends and neighbors. That being said this is where the mission for financial assistance was born for Caleb’s Crusade. We recognized that without the help we got from the community we would not have been able to keep our family together during this trying time. Looking back, this was a blessing in so many ways. We didn’t know Caleb was going to die. He was passing benchmarks and the treatment was working. We did not have any doubts that our son was going to be cured until we learned of his relapse. The time we shared all together as a family is priceless and allowed us to make a lifetime of memories and that is all we have left of our Caleb. These were the experiences that led us to create Caleb’s Crusade. We aim to help as many families as we can. We hope to enable these families regardless of diagnosis to focus on their families and the situation at hand with their sick child. We never know the end results of these children. Just like Caleb they could be gone in a blink of an eye. From the day we learned of Caleb’s relapse until the day he took his last breath was only a matter of 21 days. No one knows the fate of these kids. If we can supplement some bills or some expenses to ease a families burden that is what we want to do.
As leaders of the foundation Monique and I make ourselves available to help navigate the challenges with the experience and the resources that we have. We also have connected many families with other organizations and resources throughout the country in hopes to fill all the voids that our families face. We like to say if we cannot fill a need ourselves we will do everything we can to connect the families we support with the resources that are out there. Being active and accessible to the families we help allows us to offer emotional support as well. We are available around the clock to our families for just about any need or support that they may need. Aside from grants, we offer direct bill pay for utilities, phone, car payments, car repairs/maintenance, mortgage/rent payments, groceries, gas, minor medical equipment needs, necessary furniture, spending money for trips (which allows families to make irreplaceable memories) travel for treatment and an occasional gift to cheer up our kiddos or their siblings. We have also gifted some electronics based on unique situations. We do not pay medical bills. With your help we can continue to push our mission forward and help more local families. http://www.calebscrusade.org/donate/