Feb. 7, 2008 - July 26, 2019
Diagnosis: Brain cancer (Anaplastic Ependymoma)
Due Date: August 1, 2016
Coulter is a fun, loving, and energetic 8 year old, who loves playing with dinosaurs, fossils, and trains when he's not doing homework for second grade!
When he was 4, he was diagnosed with a brain tumor in his 4th ventricle near his brainstem. He had brain surgery to remove the tumor and months of proton radiation therapy. One year after radiation therapy, two new tumors grew in the lateral ventricles of his brain. These tumors were removed after 3 different brain surgeries and weeks of pencil-bean proton radiation therapy to his brain and spine. Through all of this, Coulter amazed us daily by keeping his smile and frequently saying encouraging words like "a family that prays together stays together" and "don't give up". On February 6, 2015 (a day before his 7th birthday), Coulter went in for his 18 month cancer free check-up and the MRI showed at least 5 new brain tumors and a large tumor in his lumbar spine. Despite the fact that Coulter has no deficits and is seemingly healthy, his treatment options are very limited this time because of the rapid growth and spread of this extremely aggressive and rare cancer called an anaplastic ependymoma.
We were told that surgery was not an option and to start seeking trial options. We are continually seeking treatment options for Coulter, as his cancer outsmarts whatever the current therapy is at the time. Consequently, our search involves extensive internet research and networking. We were given a lead into a potential future trial, that combined immunotherapy, chemotherapy and radiation approximately 6 months before the study was opened. It was at that time we made contact with Dr. Johnson. As the trial was preparing to open, Coulter's spinal tumor had breakthrough growth requiring immediate surgery on Halloween 2015. Three weeks later his right ventricle tumor doubled in size, and over Thanksgiving 2015 he had his 5th brain surgery for tumor resection. On our travel to St Jude’s/Le Bonheur for this brain surgery, we arranged a visit at Augusta University with Dr. Johnson. We conferred with Coulter's radiation oncologist at MD Anderson and confirmed our plan to find a trial that incorporated radiation and immunotherapy concurrently. Dr. Johnson was extremely knowledgeable, courteous, and responsive to our questions and concerns. At this point, we agreed to regroup post brain surgery and potentially start treatment two weeks thereafter.
Coulter recovered amazingly well from the surgery. We left the hospital 5 days later and returned to MD Anderson for 5 days of very strong focal proton radiation to the spine and on day 13 we left for Augusta to begin another trial with Dr. Johnson. After extensive discussion with Coulter's complete care team, the decision was made for Coulter to undergo the gamma knife surgery to the remaining tumor and beds. On December 11, 2015 Coulter began the trial and December 14th he had the gamma knife procedure at GRU Children’s Hospital. At this point he has completed two cycles of this trial with mixed clinical response.
In the interim Coulter has been an active, thriving boy! He was able to have his granny and granddaddy from Texas come visit earlier in March. This was exciting because he had not seen them since around Thanksgiving. He continues to go to school for a few hours a few days a week, and has found a love for “water gun wars” now that it is warm outside.
We pray that his blood counts continue to hold steady (they are borderline at this point), his scans show positive results, that he perseveres to be a source of inspiration, and that his love and faith in the Lord will shine bright as a testimony to all on what God is and can do
We wanted to thank you for the beautiful quilt!!!! It is absolutely amazing and Coulter loves it. Your organization has certainly lived up to your name and have brought such joy to Coulter during these challenging times. He will now have another layer of his love for the Lord physically wrapped around him as an added comfort with this quilt.
Thank you does not seem even close to adequate for this very special gift.