Mighty Mason – Looking Back

Mason H and his family stayed at Family House after his initial diagnosis of Crohn’s Disease, an autoimmune disease. Family House talked with Mason’s mother, Sara:

FH: What were your first memories of learning that Mason had Crohn's Disease? 

Sara: His initial diagnosis was Crohn's, but then the immunology department at UCSF did some testing on him, and they told us there's a very rare chance that he has a genetic disease called IL-10 Receptor Deficiency. He's the tenth noted case in the entire world. That's how rare it was, but the disease mimicked Crohn's. His GI tract was attacking itself basically. He was always in a lot of pain. 

It was a long road just to get to that diagnosis. Before we just thought this is something that he was going to have to live with and deal with. Then they told us that there was a cure, and the bone marrow transplant should take care of it. It was incredibly frightening, but we also saw a little light at the end of the tunnel.

 

FH: What was the most challenging aspect of those early days?

Sara: As a parent, the one thing that you want to do for your children is to protect them and help them, and there was just nothing we could do. We couldn't fix the problem ourselves, and that was just the most frustrating thing. Not knowing exactly what it was, and just watching him in pain all the time. It was incredibly hard. It tested our faith very, very much. 

FH: How did you first discover Family House?

Sara: One of the social workers in the hospital had mentioned it, that Family House specifically helps kids who are immune-compromised, which was what we’d need post-bone marrow transplant.

It was nice to see a place that had all of the comforts of home. Everybody was really helpful, and friendly, and very accommodating, especially Paul in the front office – he was just so warm and friendly. I remember when we were waiting outside and Mason was really, really sick. Paul came out and was really helpful and tried to calm us down. He was like that the entire stay. He checked on us. He always asked us how we were doing. He gave Mason a teddy bear right before we left.

We wouldn't have been able to do it without Family House, honestly, because we were there for quite a while after his transplant and because we live four and a half hours away in Reno. They needed us to be close because we had to do blood work every three days. It was a blessing that Family House was there.

We stayed at Family House for five weeks post-transplant before we got the clear to come back home. And we'd had a few stays prior to that as well, when we were doing all the pre-transplant testing. You need quite a few trips back and forth. We always had a place to stay.

FH: Was there anything that surprised you when you first started staying at Family House?

Sara: They have pictures of some of the kids that have stayed there, and it makes you realize that you're going to make it through. You see the kids. Some of them have sent in pictures afterwards once they’re well. I think that was a pleasant surprise, just to be able to see their journeys, and know that there is an end to it.

One of the hardest things - there's really no one else that truly understands what you're going through unless they're going through it, or have gone through it. People can sympathize, but there are very few people that can actually empathize with you. Meeting some of the families, and hearing their stories, it was definitely helpful. But when you have people there that know exactly what it is, it's somehow comforting.

FH: How is Mason doing now?

Sara: He's doing amazing! It's like nothing ever happened. He's four, and he had his first organized sport this year. We put him in soccer. He's just blossoming. He's growing, and he's just really happy. He's like the happiest kid ever.

FH: Is there one thing that you wish other people to know about Family House?

Sara: Just that it really is home away from home when you're in that kind of situation. It's more comfortable than staying at a hotel. You have all of the comforts of home. You've got your kitchen there. You've got your living room. There are tons of movies and toys to play with. They have volunteers going in and out of there cleaning the place all the time. It's incredibly clean. It's just a huge blessing that it's there. It's one of those places I wish more people knew about, and contributed funding to. I try to tell as many people as I can about it. There are people who want to do their end of year tax deduction, giveaways and I'm like, "Donate to Family House. They're really actually helping families."

To donate to Family House, please visit: https://familyhouse.ejoinme.org

Boswick the Clown came to Family House!

     Boswick is the San Francisco Bay Area's premier family entertainer. An accomplished clown, juggler, and magician, Boswick has provided quality entertainment and fun for thousands of people across the country. He has been involved with Family House for many years and has provided endless laughter and joy to our families and their children.

  

           "I’ve been doing the Thanksgiving Family House event for a lot of years. I do a lot of shows, I’m approaching 7500 shows in my career but this is the show I get most nervous about. A lot of the kids have seen me, Raul’s family alone has been there now 2 years, they’ve seen me numerous times. Some kids will have nothing to do with me, the staff has certainly seen me and the volunteers look at me like this... “uh huh...a clown...” I’m a celebrity among these kids, they see my picture around, they all either own one of my DVDs or have easy access to it. In the Family House world, I’m Robin Williams. It’s pretty cool but a lot to live up to. And then there are kids like Lana, Hannah (who I called Hanukah), Max and Rubin, neither of whom could speak. These kids laughed and laughed hard. These kids are in my life forever, with their laughter.
           Kids need laughter like they need dessert. A child can live without both but that’s not a life you want for a child. It’s fun to see kids eat birthday cake and it’s just a kick to see children laugh. Each year I get the kids (and crowds) laughing harder and harder. I guess that’s what I get nervous about; can I top what I did the year before? Will the kids respond? I don’t know. Performing is walking a tight rope, I get big rewards in laughs and hugs but it’s a bit scary climbing to the wire.
           Hopefully I can keep coming back year after year. This is the show that makes me nervous, it’s also the show with the most reward."

-Boswick



        All of us at Family House really appreciate the smiles and laughs that Boswick brings us. A father staying at one of our houses sumed it up pretty well; "It's a beautiful sound when you hear any person, but in particular a little child, laugh so hard they can't control themselves. Those kids and (ahem) some of the adults, were "taken away" for awhile. Very therapeutic, very fun."

     So we thank you Boswick, so much, for entertaining us and for keeping our families laughing! Please visit Boswick's website for more informations: http://www.boswick.net/index.php?gclid=CPT5yfGuy6wCFacaQgodpChMJw 

Staff Spotlight: Susan Neff

How did you come to be at Family House?

In 2006, I was introduced to Family House by a Kathleen Toney, who was Board Chair at the time. I knew her as a friend and from community relations at our church in San Rafael - St. Raphael’s Church. Alexandra, the Family House CEO, had expressed desire to hire a development person for Family House. Kathleen directed Alexandra to my work at St. Raphael’s, where I was their Development Director. Alexandra and I met each other at Kathleen’s home and hit it off perfectly! We have a lot in common which then led to my working at Family House starting in July of 2006.

How has Family House changed since you first started?

Family House has grown—exponentially. In 2006, we only had one Volunteer Coordinator - part-time - and we didn’t have much of a database. We started with Donor Perfect (our old database program) soon after I joined the Family House team. We had no website, no Facebook following, and we just had the one small room for the three of us in the business office. We had about five people on staff and now we have more than doubled in size. Our database, donors, and families served has quadrupled in numbers; our general operating budget has expanded from under one million to [when we get to Mission Bay] 2.5 million. Our endowment has developed from 1.3 million to now over 5 million dollars.

What are some of your favorite Family House memories?

One of my favorite memories is when we used to all be in the small office, and one of the families staying here had a set of twin girls and a boy, and the kids would get so bored they would come down to the office and help us file. We were so behind on our filing that the kids would come help us, but in order to file, you have to know the alphabet! Since that was a little difficult for them, I made a poster for the kids to use as a reference, and it was so adorable. This particular family was here for months and it was just precious that the kids came down to the office to help us. My favorite administration memories come from kids who are staying with us coming down and hanging out with us in the office. 

 Contact Susan at http://www.familyhouseinc.org/staff.html

Family House Partners with Coach Art

Family House is very excited with our new partnership with Coach Art - this program is great in so many ways - it offers an ongoing experience for talented volunteers who want to help sick kids and their siblings in recreational activities. This is an opportunity to work with a child over a long period of time, rather than a one-time volunteer experience.

Coach Art gives volunteer teachers an opportunity to see their students grow and thrive, and to see how they are really impacting the students' lives. On the flip side, it gives students a regular opportunity to do something creative that interests them; it's dedicated attention, and something to look forward to each week.

We love that Coach Art includes siblings, too, since the whole family is affected by one child's illnesses.  For longer stays at Family House, families are away from home for months at a time. Kids are pulled away from their regular community of school and friends (and teams and art and music classes), and may not have this kind of outlet available to them through Child Life Services at the UCSF Benioff Children's Hospital.  Child Life provides a wonderful complement of services to patient families, but they simply can't recreate all the comforts of home.

Thank you, Coach Art Mentors for helping to bring a bit of home to Family House kids!

http://www.coachart.org

Get involved with Family House! Learn more at http://www.familyhouseinc.org/volunteer.html

Brayden and Ashlee

 

In 2010, 19-year-old Ashlee Hannah brought her first and only child, Brayden, to the doctor for his 2-month checkup and immunizations. Brayden reacted badly to the shots – his mouth and throat blistered and his pediatrician immediately sent him to the local hospital in Tombstone, Arizona.

Through a battery of tests, including blood draws and a spinal tap, Brayden’s health continued to deteriorate – he couldn’t eat on his own and doctors had to insert an NG tube for feedings.  After several days of tests at the hospital, Brayden was diagnosed with Severe Combined Immunodeficiency (SCID) – and that his only chance for survival would be a bone marrow transplant at UCSF in San Francisco.

“He had a lot of procedures done to him; I'd seen him at his worst. At times, I never knew if I would wake up to my little baby boy being alive.”

Brayden was inpatient at the UCSF Benioff Children’s Hospital for five months, and Ashlee didn’t leave his side. She was able to be his bone marrow donor, and looking back, “I am so glad that there was a way for him to live, with the great doctors and nurses at UCSF.”

As Brayden recovered from his transplant, he continued treatment at UCSF and therefore couldn’t go home to Arizona.

“I was only 18, away from my family in a city I'd never been to… We lived at Family House for 11 months, and my son experienced all of his ‘firsts’ at Family House - holidays, his first Christmas. I live in a very small town and am definitely not a city girl, so it was my ‘first’ for a lot of things, too.

 “The staff were always there for me when I needed to talk or needed help. They were my family away from family. If I didn't have the Family House I honestly can say I have no idea what I would've done.

“They helped me with transportation, gave me gift cards, and when money my parents sent was stolen in the mail, Family House actually made up the difference. I was speechless because they didn't need to do that, but they did! The organization is honestly a true blessing - they're truly wonderful people there.”

Brayden is now four years old, and he is into everything - just like other boys his age. He continues to receive IVIG antibody treatments in Arizona (making up for his body’s natural lack of B Cells), and returns to UCSF annually for checkups.

 To other parents of children with a life-threatening illness, Ashlee advises, “You might go through a lot of hiccups down your road when you have a sick child, but you have to be strong for yourself and for your child. Never give up! Make sure you have a great support system like I did with my family, the Family House, and the great medical team that saved my sons life. Know that you're not alone!”

Family House Family Stories: Jayme's Journey

Watch the latest Family House Family Stories video: Jayme's Journey

This remarkable young woman is an inspiration to us all (and also lots of fun to hang out with!)

Click here to learn more about Family House families:
http://www.familyhouseinc.org/family-stories.html 

Thanking the Community

Family House is fortunate to have such wide community support - everything from Inner Sunset neighbors who solicit donations on our behalf to international companies who rally hundreds of employees behind us for donations and volunteer hours.  We truly could not provide the services of Family House without the support of every member of our community!

Recently, we were contacted by Golden Gate Pedicab company - they wanted to know what they could do to help.  After some discussion, it was decided that they would give free rides along the Embarcadero to families from the Ferry Building to Pier 39 - a perfect "tourist" experience for families who are otherwise disabled and distracted by medical treatment, and can't take advantage of visiting San Francisco.

Then our volunteer coordinators, Greg and Karen, put their heads together, and said, "Who else do we know downtown who has offered to help Family House?"  Pier 39 donated VIP passes for the day, and Ben & Jerry's provided the ice cream for our special guests.

It is through the efforts and kindness of these special people in San Francisco that we were able to help families forget about their troubles for an afternoon.  Sunshine, ice cream, and a tour along the San Francisco Bay - what could be better?

Thank you to Golden Gate Pedicab, PIER 39, and Ben & Jerry's for this special day, and for all you do for Family House families!  Love!

You can get involved with Family House! Learn more at http://www.familyhouseinc.org/volunteer.html

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:
http://www.familyhouseinc.org/family-stories.html