Monday, July 29, 2013

Founder to Founder, by Arthur Ablin, M.D., December 2012

Sit down with me for a few minutes and become moved as I have by this touching yet uplifting story about one of our Family House’s remarkable and resilient patients and his loving, supportive family.

Austin Young, now 18 years old was stricken (yes, that’s the word) at 6 months of age with a cancer of the retinas of both his eyes. The stage of his cancer, a retinoblastoma, was such that without treatment he would certainly have rapidly become blind and died as a young child. Infant Austin and his family were presented with devastating alternative choices for treatment: One was the immediate removal of both eyes with instant blindness; The other option available was radiation therapy to both of his infant eyes with only a hope, not a promise, that his life could be saved with a slight possibility that some modicum of vision might be retained. The price for this latter choice would be cataracts in both eyes with obvious facial changes as the rest of his face and head grew. If that were not overwhelming by itself, survivors of retinblastoma of both eyes have a high life-long chance of developing other cancers later increased by the very radiation therapy used to treat the original retinoblastoma. Those second cancers are difficult to treat and may or may not be curable.

Imagine with me the stresses associated with decision making this family was going through. No good choices, only bad or worse ones. How can anyone be asked to make them? It doesn’t seem fair to ask any parent to make these decisions for their child. Exacting daily radiation therapy in the UCSF Department of Radiation Oncology for several weeks requiring motionless eyes and therefore, daily anesthesia for several weeks was their least horrendous treatment choice. The family stayed at Family House during these many weeks of radiation and the monthly follow up visits for many years. During that time and the innumerable check-up examinations required, Austin, his parents and sister, Bonnie, David, and Lauren called Family House home. They survived and Austin adjusted, even excelled with remarkable strength of character in spite of his impaired vision and physical disability.

Now 18 years later, 6 foot delightful Austin is blind in his left eye and has 20/200 vision in his right eye (sees at 20 feet what a person with normal vision can see at 200 feet). He has under growth of the mid portion of his face making him easily distinguishable among his peers, an appearance with which he has become comfortable because of his engaging, pleasant smile, a twinkle in his poorly sighted eyes and his quiet demeanor. If that were not enough, more of the medical story continues. At age 16, 2 years ago, cured from his retinoblastoma, a popular, productive and bright sophomore in Bella Vista high school dealing successfully with his visual and physical disabilities, Austin and his family discovered a rapidly growing lump in his left upper neck. Austin had developed a different, second cancer at the left side of his face. It required a meticulous 16 hour operation, then months of chemotherapy with further radiation therapy. Long stays in at UCSF and at Family House were then again required with the hope this second cancer had been cured. Unfortunately, less than a year later there is a recurrence of his rhabdomyosarcoma. Austin and his family are guests again at Family House while he is receiving yet another course of alternative chemotherapy and cyber knife radiation surgery. Austin and his family know the outcome of this treatment is questionable but face this with realistic optimism, humor and characteristic determination.

In spite of missing many days and weeks of school Austin managed to keep up with his class work, and recently graduated from high school and has been accepted to start U.C. Davis. High intensive chemotherapy and radiation therapy require that he defers Davis now. Austin recognizes the important role Family House has been for him and his family, both in the support with other families over the years and the high cost that would have resulted in finding accommodations in San Francisco. To express appreciation to Family House for all that he and his family received, Austin, whose goal in life is to become a computer engineer, created a social event called “Gaming 4 a Cause” to support Family House. He elicited support from classmates and with his and their parents established a non-profit charity of which he is the president. His 17 and 18 year old classmates are the vice-president, financial officer, treasurer and publicity director, and secretary. This team has acquired the necessary hardware through contributions and careful purchasing , arranged rent-free space at Fuddrucker’s World’s Greatest Hamburger restaurant outside of Sacramento where they hold week-end events charging small entrance fees. Participants form teams which compete to win electronic prizes such as controllers, mice and software. During the past several months attendance has steadily grown and the profits for an evening of spirited fun and clean sociability have been as high as $1600. The restaurant is glad to have them! As the popularity increases and all the details of his enterprise are further fine-tuned, Austin and his sister Lauren are spreading the word and know how of Gaming 4 a Cause to other schools hoping to multiply the profits for Family House. A quiet smile creeps over his face, his poorly sighted eyes twinkle and he softly says “It’s for Family House.” Go Austin! Go Youngs! Go Family House! We are here for each other and all other thousands of children and their families that are called Family House.

July 2013 UPDATE: Austin has finished chemotherapy and radiation, and is headed to UC Davis this fall.  Keep an eye on Gaming 4 a Cause happenings at

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