A Cure From Caleb Society

Our Inspiration

Our Inspiration
A Cure from Caleb Society was formed in memory of Caleb Lanz.  Caleb was just 8 years old when he was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) after his eye suddenly began to turn in.  January 28, 2010, we were thrown into a world I could never have imagined.  Our lives came to a halt, as the pediatric neuro oncologist explained to us that DIPG is a terminal disease, she explained that treatment might buy us time with him - a year, maybe two.  Without treatment he had a matter of weeks.  I could never fully explain that moment and what hearing those words felt like.  It was completely unbelievable, how could our healthy, happy, full of potential, eight year old son be dying?? 
We did what most parents choose to do, we did treament, 6 weeks of daily radiation to his brain and chemo.  We had to try, we needed time... maybe a cure could be found in time, maybe there are doctors from other countries who hold the key to a cure.  As we began our own research into what this disease is, we quickly learned how evil it is, how little hope there is.  Caleb responded well to radiation and had little side effects from the chemo.  With the exception of his turned in eye, he appeared to be healthy and well for nearly a year.  On January 12, 2011 our worst fears were confirmed, his tumour was rapidly growing.  We were told he would likely only have 8 weeks to live.  We fought for and received a second round of radiation, something that was completely unheard of one year before.  This bought us further time with Caleb but it did not stop the growth as it had before.  Over the next 9 months Caleb would lose his ability to walk, talk, move his left side, swallow liquids and later solids, he had partial facial paralysis that stole his smile from us.  Throughout those months he needed dexamethasone to keep the swelling down in his brain, this steroid came with a high price to his overall quality of life.  This NEEDS to change, there are children all over the world fighting for their lives and parents who are guiding them through treament, searching for hope that would change the outcome for their child.  Time after time, parents are forced to guide their child through treatment, stand by helplessly as the disease progresses and takes the child's physical abilities one by one, then lead them into palliative care, where the parents often lose the hope for a cure and instead focus on keeping the child comfortable and out of pain.  Finally they watch as their child takes their last breath.  It is a heartbreaking journey for any family and we have vowed to not stand by and allow it to continue.  Research is grossly underfunded and change is being supported on the grassroots level.  Affected families are raising money through charities like ours and funding research. 
We can make a difference! 
We will make a difference!

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