Journal of our Journey

This site was just created to journal our family's thoughts and journey through Colin's diagnosis with a brain tumor and to provide medical updates for our friends and family.

On June 25, 2003, we received devastating news that would change each of our lives forever. Colin was diagnosed with a brain tumor in the right pons of his brainstem. His only symptom was hearing loss on his right side. His first surgery was July 16, 2003, performed by Dr. Frederick Boop and Dr. Robert Sanford, two excellent neurosurgeons, through St. Jude Children's Hospital in Memphis, TN. Colin had a 50% resection of the tumor with an unknown pathology. Dr. Peter Burger, neuropathologist at Johns Hopkins Medicine, was able to determine the tumor as a pilocytic astrocytoma with pilomyxoid astrocytoma features, a form of juvenile pilocytic astrocytoma which can be more aggressive than typical JPA tumors. PMA tumors are most often found in the hypothalamic and optic chiasm regions of the brain, and Colin's location of a PMA is quite unusual.

In August 2003, a subcutaneous port was surgically placed in his chest for his sedation meds for 3-D conformal radiation therapy and his MRIs. The remaining 50% of his tumor was inoperable and was treated with 6 weeks of 3-D conformal radiation therapy in September-October of 2003. Conformal radiation therapy is given with beams that shape around and into the tumor using a computerized three-dimensional image of his tumor from MRI but spare the surrounding healthy brain from radiation. The tumor has decreased from 2 cm x 1.7 cm to 1.1 cm x 1.2 cm over the past 3 1/2 years.

We prayerfully seek God's will for what He may want us to do to take care of Colin. He began a low-sugar, organic diet (as much as possible) and supplements in 2005, with counsel from Dr. Jeanne Wallace, our nutritionist who specializes in brain tumor patients. In July 2006, Colin began the homeopathic protocol of Ruta 6C and Calcium Phosphate 3X, which was created by Drs. Prasanta and Pratip Banerji. This father and son team work together at the PBH Research Foundation in Kolkata, India, and claim to have been observing the ability of this treatment to reduce and cure intracranial tumors for the last 30 years. Their research is currently being recognized and funded by the NCI in the USA. Their protocol is safe and non-toxic. Three months later, Colin's MRI in October 2006, was improved. There was a decrease of 3 mm in size and the tumor was not enhancing as much as before. According to the research, some results may be seen as soon as 6 weeks of using this protocol. There is no way to know it was only the Ruta protocol affecting the tumor. We believe the improvement is due to a combination of the effects of the conformal radiation therapy, his nutritional status of his body fighting the tumor, and the Ruta protocol, each affecting the tumor in different ways. We have always felt we need to fight this tumor on different levels.

Colin goes to St. Jude Children's Research Hospital every 6 months for two days of checkups, including his MRI and lab draws, and consultations with radiation oncology, neurology, speech, and audiology.

This journey has been painful beyond words, but I am so thankful the Lord has brought us into a deeper and closer walk with Him. His amazing love is revealed to us in more ways than we could ever imagine. We have peace that He is in control and He has a plan. I love this quote from a friend who has walked this path with her son, "Life is not about being the person God has called you to be, it's about becoming the person God has called you to be". It would take pages to write about all He has done in our lives the past few years. I hope you are encouraged by Colin, and know the hope we have in knowing Him, our Lord and Savior, our Healer.

Trusting in Him,

Amy, Ted, Chase, Colin and Caroline

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". Jeremiah 29:11