Oct 25, 2017 Latest post:
Mar 14, 2022
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
On May 26, 2006, after a few months of periodic headaches, Kevin (a competitive gymnast and ice hockey player) was diagnosed with medulloblastoma (a cancerous brain tumor) at the age of 9. He underwent surgery (May 29) and then traveled from his home in Southern California to St. Jude Children’s Research Hospital in Memphis for adjuvant therapy. He received radiation therapy throughout the summer and then high dose chemotherapy (in the form of four bone marrow transplants) throughout the fall and winter, returning home in January 2007.
Despite being away from home for so long, Kevin kept up with his school work and returned to 4th grade full time in April 2007. For the first two years post treatment Kevin traveled back to Memphis every 3 months for scans and tests to confirm that the cancer was eliminated and then, in December 2008, graduated to visits every 6 months.
Kevin continues to recover. His original surgery left him speechless and unable to control his right leg and right arm. With a lot of hard work and therapy his speech and his leg movement and coordination has also returned (but his stamina and strength remain compromised). While he can control his right arm and hand, he suffers from ataxia (i.e., reduced coordination). Kevin continues to work hard and, although the results aren’t as immediate, he continues to improve. He takes daily oral medicines to help supplement what his treatment destroyed, e.g., thyroid function and adrenal function.
UPDATE Summer 2009: At Kevin’s routine 6 month visit to St. Jude in early July 2009 his scans revealed a new tumor in his left temporal lobe. Surgery at CHOC successfully completely removed it (July 10). It was confirmed to be a recurrence of the original medulloblastoma tumor. Kevin returned to St. Jude for radiation treatment (30 doses) August and September, and an initial round of ICE chemotherapy in October. He underwent five additional rounds of ICE chemo through March 2010 at CHOC.
UPDATE Spring 2012: Routine scans in April 2012 revealed a suspicious area in the same region as the recurrent tumor. Surgery on April 16, 2012, two days before Kevin's 15th birthday, confirmed what we suspected, but dreaded, the cancer was back. Kevin started a new low-dose-long-term chemo regimen in May 2012. If his body can handle it and if it works to keep the cancer at bay, our goal is to continue treatment for two years.
UPDATE Fall 2013: Kevin's doctors are pleased that Kevin's chemo regimen is keeping the cancer at bay and that Kevin is tolerating it. They have determined that he should remain on the regimen indefinitely.
UPDATE Spring 2015: Kevin has decided that three years of chemo is enough. His last dose was on his 18th birthday, April 18.
UPDATE August 2015: Scans in Memphis reveal a new tumor in the same tumor bed as the previous recurrences. In light of the determination that the next level of chemotherapy drugs would not be effective against his tumor cells, Kevin decided that his only treatment would be surgery and GammaKnife radiation.
UPDATE Spring 2018: Scans in Memphis revealed another tumor in the same general area as the tumor bed of the previous recurrences. Dr. Loudon (Kevin's neurosurgeon throughout) performed surgery and GammaKnife treatment.
UPDATE Late Summer & Fall 2018: Scans in August and September revealed bone lesions and possible lymph involvement. Bone biopsy found no cancer. Scans in November confirmed continued lesions and lymph involvement. Lymph biopsy revealed medulloblastoma cells, but brain and spine remain clear. Immunotherapy likely to be next step.
Although the outlook for patients with recurrent medulloblastoma is not pretty, we continue to have hope.