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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Monday, July 22, 2013

In Memory Of

It's a sad fact of Family House life that sometimes young patients at the UCSF Benioff Children's Hospital don't get better.

We love to share the inspiring stories of patients and families who live through the struggle of a life with cancer or another life-threatening illness, so you can see the important work that we do. We want you to share in the triumphs of the amazing families we serve, and learn to share their strength with others in your life.

Every time one of our children passes away, it affects all of us. When the families come here, they are often here for so long that Family House truly becomes their home.  It's common to hear longtime families speak of "my kitchen" or "my room," even though they haven't slept here in years. Family House and San Francisco become as much a home to each of those people as to the staff and volunteers who spend countless hours at 50 Irving Street and 1234 10th Avenue.

We have photos of kids and families in every conceivable space here, and yet, there are other surprising little reminders that come up all the time: a construction paper card written in crayon, found in a file drawer; origami pumpkins found in a bin of event supplies in the garage; a hand-made bracelet from last year's Valentine's Day party hidden in a box of rubber bands.

One of the most special ways that we are reminded of a child who is no longer with us is when we receive "in memory of" gifts. These donations are often small amounts of money given by a friend of the family, a member of the family's church or school, or someone who perhaps never had the blessing of knowing the child, but heard through a friend of a friend that Family House helped them when they needed it most. The staff is always touched when we receive an "in memory of" donation, because they are reminders that though the family has moved back home, that child will never be forgotten. And through the generosity of the community that child has left behind, Family House is able to continue our mission of helping other families through what may be the hardest experience of their lives.

Click here to learn more about Family House families: 

Monday, July 15, 2013

Madi's Story

Almost two years ago, our beautiful, 5 year-old daughter, Madison, was diagnosed with leukemia. The news hit us like a bomb, but fortunately, we were sent to UCSF Children's Hospital from our home town of Redding, California - a good 4 hour drive away. Today, the prognosis for Madison is very good - she's in remission, and returns to UCSF periodically for check-ups.

I was glad to be asked my story for this article, because I want everyone to know how important Family House has been to us throughout treatment. Frankly, I don't know what we would've done without it. They were a light in our darkest hour- they were there, ready to be a home for us, even though we didn't know what we'd need. We feel lucky to be part of the Family House community.

Family House is the only reason that Madison had anything to open on Christmas last year. She was released on Christmas Eve morning after being in-patient for 48 days. My husband and I could not have cared less about Christmas, let alone gifts or a tree. Paul Goold, the Family House Director of Operations, called me at the hospital the morning we were discharged to tell me that there was a big box of wrapped Christmas gifts for Madi and her step-brothers to take home with us. It was simply unbelievable, and meant everything to our children and to us.

I hope that those of you who donate to Family House know that the families on the receiving end are real people. A sudden, life changing diagnosis can happen to anyone at any time, and you're never prepared. When you find yourself on the receiving end of the services Family House provides - an
instant community of support, a free and safe place to live, food and friendship - you don't know how you got so lucky, because your lives were turned upside down before you know it. For two years, our family struggled with all sorts of basic costs to get back and forth to the hospital-last year alone we spent $32,000 in gas, tolls, parking and minimal food purchases to get back and forth to San Francisco. It just about put us over the edge. We never thought something like this would happen to us or to our beautiful girl.

There are still families that sleep in the corridors of the hospital, in a chair, on a window ledge, or in my case, in my daughter's hospital bed with her curled up next to me. It saddens me that Family House has to turn people away because there aren't enough rooms. I hope that can change.

You can't imagine what a family is going through when they have to be in the hospital 24 hours per day-you ask yourself how many kids are at home with another family member; how the bills are going to be paid; can the family afford food while their child is in -patient for months; or has their house been repossess because they cannot keep up with the mortgage along with everything else.

Today, we no longer take every day or even every minute for granted. I will never lose sight of what every family that walks through the doors of 7 Long (pediatric oncology floor) are going to endure. I know exactly what they are feeling and I want to help them by supporting Family House. I hope you'll join me.

- Elizabeth Wallers, December 2009

Click here to learn more about Family House families: 

Monday, July 8, 2013

New Kitchens at Family House

 Thanks to a grant and generous donations, Family House is renovating all 6 kitchens at the 2 houses! Brand new countertops and cabinets will make for a nicer cooking experience for all of the families. The new cabinets have a larger capacity; this will really make a difference for families who are staying at Family House for a long time, since they are allowed to keep food only in the kitchen (to help prevent pest issues!). The kitchen is the heart of many homes, and Family House is no exception: it's one of the main places that families can bond over shared experiences, and be able to support each other.  This renovation project took a lot of time and effort for the Operations staff, but we are all so pleased with how the work looks in the end.  What do you think of the new kitchens?

Monday, July 1, 2013

Family House Family Stories: Faye's Story

What do you do when your 2-month old becomes seriously ill? Yifan and Kip Baumann were faced with this terrible question in 2009 when their little girl started to show symptoms of liver failure.

"Faye was diagnosed with Biliary Atresia (BA) at the age of two months. BA is a rare, life-threatening liver disease, and there is no hospital to treat her disease in the Sacramento area where we live," recalls Faye's mother, Yifan. Faye was taken by ambulance to San Francisco for surgery and treatment at the UCSF Children's Hospital on July 31, 2009. Though the surgery was successful, afterwards, Faye suffered three separate bouts of Cholangitis, a life-threatening infection of the bile duct system, and the family found themselves in and out of San Francisco for treatment at UCSF over the course of many months.
 "Kip and I were both exhausted by that time, so Faye's grandparents came to help. They lived in the Family House for about 2 weeks and cared for Faye during the day. We greatly appreciate the help from the Family House during our most difficult time!"

Three years have passed since the Baumann family were regulars at UCSF and Family House. There is now a new face in the family, Faye's healthy baby brother, Kai.  Faye can never be "cured" of BA - it is a disease that will be with her for life. Unless science can discover a way to stop the progression of the disease, a liver transplant may be in her future. For now, she is healthy and vibrant.
 For her 4th birthday, Faye's parents requested that friends and family make donations to Family House in lieu of gifts.  "Family House is doing great things to help people in need and I want to let people know that. A donation to Family House is much more meaningful to us than gifts. We will explain to Faye that the gifts from her guests were sent to Family House to help other kids, so they can also have birthday parties.

"When she gets older, we will encourage her to participate in charity and community service. I saw many many great people during our difficult time and I want to Faye to learn from them."

To learn about ways that you can help Family House, please click here: