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

A Sweatshirt to Remember...

One of our families wrote a lovely story about the Family House Sweatshirt - enjoy!

"Whether perambulating through the Inner Sunset fog, playing an impromptu game of catch in Golden Gate Park, or hunkering down for a long winter's nap among the beeping IV pumps and bright lights of 7 Long, the Family House hooded sweatshirt is a sure hit.

The 50-50 Poly/Cotton fleece blend surrounds you in snuggly softness.  Oversize hood is perfect for screening out noise, light and cold drafts. (Our friends tell us it also serves a subtle cloak for tears, faces that betray emotions, or a beautiful bald head.)

The kangaroo pocket warms chilly hands and serves as a hideaway for your iPhone, Nook or PDA.
The embossed, two-tone Family House Logo is an attractive accent that is sure to draw respectful nods of acknowledgement from friends, strangers, and fellow travelers.  It also tells people your not a smash-and-grab thief or convenience store bandit.
Manufactured in Honduras.  Free."

-Dave Monicken 

Jarren Fogle's Inspiring Story

It only takes about ten seconds with Jarren Fogle to see that nothing— including his diagnosis with medulloblastoma— will slow him down.  Diagnosed earlier this summer at age two, Jarren started his treatment with surgery and three rounds of chemo in Madera.  But when a stem cell transplant and high-dose chemo were needed, he was transferred to UCSF Benioff Children's Hospital to finish his treatment.

Jarren is a bundle of energy, with an infectious smile that he hides behind his hands during a lively game of "peek-a-boo".  He snuggles up to his mom, Danielle, on a cozy chair in the Family House living room.  When asked about their time in the house, Danielle lights up.  After being secluded for three months in a hospital room in Madera, she was nervous to move into a house with other families.  But her worries were relieved once she arrived.  "It's a blessing to have the security, knowing that you have somewhere to stay when you're going through tough times like this."

Danielle instantly noticed a difference in her son once his tumor was removed— he began reciting his numbers and colors, even naming shapes that Danielle swears she never taught him!  These days, he’s got plenty to talk about, including all the details of his third birthday.  Jarren celebrated at Family House on November 14th, complete with a Mickey Mouse cake and a visit from his dad and grandma.  Next week, Jarren and Danielle hope to take a road trip to celebrate Thanksgiving at the home of another family who were living at Family House when they moved in.

Today, all traces of his tumor are gone.  And although he has a few more months of treatment, Danielle sees the light at the end of the tunnel and looks forward to her next chapter with a happy, healthy son.  “Most people never meet their hero,” she says, “but I gave birth to mine.”

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

Family House Family Stories videos: Margo and Jimmy

Watch the latest Family House Family Stories video: Margo and Jimmy

Jimmy has been battling Medulloblastoma for the last 7 years.  He's a fighter, and is looking forward to a bright future.

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

Ronin, Warrior Princess

Watch the latest Family House Family Stories video: Ronin, Warrior Princess

See all the Family Stories videos at http://www.familyhouseinc.org/videos.html

Family House Short Video

This video features Family House staff and families, and doctors from the UCSF Benioff Children's Hospital, and is a great look into the mission of Family House.

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

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 

Family House Family Stories Videos

Have you seen the latest Family House Family Stories videos?  Since being introduced in June (Nino's Story), we have released two more Family Stories videos - Amenah & Anthony, and Jack's Tale.  While each story is very different, they share the same themes - love, community, compassion, gratefulness, and strength.

We plan to release a new Family Story video each month - be sure to subscribe to the Family House Youtube Channel and sign up to receive our newsletters.

Please view and share these videos - by sharing the mission of Family House, it builds our community, enabling us to help even more families in need.  Thank you!

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

It's the Little Things that Count...

Matthew Farley was first diagnosed with lukemia at the age of five. After being diagnosed Matthew was treated for his cancer at Sutter Health in Sacramento. The people at Sutter worked fast and Matthew's body showed its strength when only thirty days after his diagnosis he bested the cancer and went into remission. As is often done, Matthew was told to go ahead and finish his treatment to insure the cancer would not come back. Matthew endured chemo and radiation for three years to finish up his treatment plan. Matthew had only been out of treatment for a year when he was given a harsh new diagnosis. In March of this year Matthew was told that he had contracted Myelodysplastic Syndrome (MDS), a disorder that causes the bone marrow to fail. He needed a bone marrow transplant.

Matthew's MDS is a cause of one of the treatments he received for his Lukemia. There is only a 0.1% chance that patients receiving this treatment will contract MDS. Matthew's doctor's recommended him to UCSF because of their specialization in bone marrow transplants. The Farley family found their way to Family House on July 4th. The next day Matthew went into the hospital to prep for his transplant. On July 13th, Matthew received his transplant. He has been recovering in the hospital ever since.

 At Sutter Health the Farley family stayed at a number of other facilities for families with children who are receiving medical treatments. He said that, "Family House is so much more accommodating then where we have stayed before. You do a great job of facilitating families here, like how you have a laundry facility on every floor at the 10th House."

Dealing with life-threatening diseases like Matthew's can be disheartening, but Darrel told me how they stay positive.

"Parents survive off of other families, and other parents...the other day my wife and I were putting groceries away in the communal kitchen with some of the other families and we started to talk, and out of that comes laughter. Here we all know what you are going through it is the same thing every day, so it is the little things that break up the monotony of our week that help bring us the most joy."

The Real Deal - Family House makes good TV

Part 1

Part 2

Part 3

The Real Deal TV series did a spotlight on Family House a year ago, this is the show as it was aired from Youtube...watch and see just how important and impactful Family House is for the Families who stay here.

My Friends and my Legos are my Lifesavers!

Kiki is famous here at Family House for his love for Legos. Kiki first came to Family House in February of 2010 for treatment for a major blood disease called Beta Thalassemia. A disease which inhibits an individuals red blood cells from carrying oxygen throughout the body. Kiki was lucky enough to receive a bone marrow transplant on March 31, 2010 from the international donor bank. Kiki had to spend fifty days in the hospital after his transplant.

While Kiki was in the hospital for those fifty days he played with Legos and built different models every single day. One day Kiki said, "My friends and my Legos are my lifesavers!" Kiki's grandmother, Katia thought that was a great title for something, and so the idea for an exhibit of Kiki's legos was born. Katia was the person who actually gave Kiki his first Lego set and from then his love only grew. In only 120 days while staying at Family House Kiki built 130 Lego Toys from more than 50,000 parts. The exhibition was held on July 26, at St. Anne's Church in the Sunset district and over a hundred people came out to support Kiki.

Katia said that the people here at Family House were a crucial part in making Kiki's exhibition a reality.

 She said "the people who work here work with their heart and soul, it is as if this were what they were destined to do. Family House is better then a regular family. A regular family will bicker and fight. This is more than a family. But there couldn't be a better name for it then family."

Katia went on saying how comfortable and at home they felt here. When she told Kiki that thety were coming back to Family House last Monday from Hawaii where they live. He replied, "I am going to my home. I get to go home again."  

While talking to her, she could not say thank you enough. From the beginning she said they felt at home here. They felt as though they had a support group who was always happy, and excited to celebrate when good news came, or be there when things went south.

She said, "You meet friends for a life here, like the Garcias. People become more than relatives. The individuals who work here don't just go the extra mile to help you, they go a 100 miles out of the way to do it. There will not be enough in my life to give back what they have given to us. My heart, soul, everything, our family, our entire family would help out in anyway and volunteer for Family House if we could." 

Though Kiki still has his ups and downs, the doctors say he is one of the most successful cases out of all the research studies. 

Remission is Only Part of the Journey

Remission, is a beautiful word for patients and families of individuals who are battling cancer. For the Yocupicio family this word has become a reality. Their fifteen year old son Raul has been battling Leukemia since October of 2009. As a result the Yocupicio family has spent the better part of the last two years living at Family House instead of their hometown of Modesto, CA. Their first stay, was for ten months while Raul underwent radiation and chemo. After the first round of treatment Raul was given the green light to go home, but relapsed in October of 2010. 

Since Raul's relapse Marcela, Humberto and their three other sons, Brian, Jordan, and Angel have called our 10th Avenue location home. Raul fought back after his relapse with another round of chemo and a bone marrow transplant which he received in March of 2010. The transplant and chemo worked, and Raul's doctor informed the Family of the good news just a few weeks ago. Though things are definitely looking up for the Yocupicios, Raul still has to undergo another round of more intensive chemo to insure that the cancer will never return. The boys will once again enroll in the San Francisco Unified School District so they can stay with their brother has he undergoes more treatment. 

Raul goes to the clinic three times a week, lab work is on Mondays, a lower lumbar puncher happens every Thursday, and every third week he checks into the hospital for five days of chemo, but through it all he has family by his side.

Raul's mother Marcela spoke highly of Family House saying,

"There is everything I need here. I feel more at home here then at my normal home. When I leave I am going to miss this place...I just feel so comfortable here." 

She praised the staff saying,

"The staff is so sweet, whenever you ask something, the always have the answer. And when they don't have it, they know who does, and make sure to get you the answer."

 We are so incredibly happy to hear the good news for Raul and the rest of the family, but when the time comes for them to leave it will be a bittersweet one. The Yocupicio's have made their way into the hearts of both the staff and the other families who call Family House home.

A Vision of Inspiration

It was 1994 when Austin Young first came to Family House. He was only six months old. Austin had been born with Retinoblastoma, a type of eye cancer commonly found in children. Austin and his family lived on and off at Family House until Austin was five, while he received radiation treatments to try and save his vision. A process his younger sister later would also have to endure for a few years with him.

Now, eleven years later Austin sits before me today as a seventeen year old with a driver's license about to start his senior year of high school. Sadly college visits aren't the only thing that brings Austin back to San Francisco. This past Easter Austin's sister notice a lump on his neck. It was Rhabdomyosarcoma, a type of cancer, a possible side effect of all the radiation Austin received as a child. Austin is back at Family House on and off for the next year while he receives radiation and chemo therapy. Despite a scar on Austin's neck, a side effect from his first surgery, you would never know he was sick. He speaks of his treatment in a very "matter of fact" fashion.

He said, "the good thing about getting both radiation and chemo at the same time is that the kind of chemo I get doesn't make me sick. I can't receive the more intense chemo that makes you sick while undergoing radiation. That's the benefit of my treatment."  

Austin's mom Bonnie, reminisced about their first stay at Family House as I sat and talked to them.
Before they found Family House, Bonnie said they stayed at this really cheap hotel down by the water in San Francisco. "It cost $50 for one night, and it was dirty and grimy."After that first night a social worker recommended them to Family House, a recommendation Bonnie will never forget. Over those first five years Bonnie said they probably stayed at Family House at least 30 times. 

She said, "it was like a vacation. The staff here knew how to bring joy back into life"

She spoke of the other families they grew close to in that time, who they still keep in touch with eleven years later. 

Austin's described his schedule for the week, "Monday afternoon I go in for radiation, Tuesday I spend the night in the hospital while I am receiving chemo, then Wednesday morning its another round of radiation.  Thursday and Friday I usually have more radiation and whatever other appointments I need to do before going home for the weekend."To most of us this seems like a miserable way to spend a week, but to Austin this is normal. This is what he has to do to get better, so he can go on to major in Computer Science in college a year from now like he wants to. 

Austin's remarkable life earned him an invite from one of his childhood doctors to go and speak before the first year medical students at the University of Pennsylvania last year.

Bonnie tried to describe what makes Family House special. She said, "It's a beautiful thing just for support...its not all good and dandy what we are all going through here, but it is more the understanding everyone has here. For us this is our life, it becomes kind of normal. Other people who aren't dealing with it often don't know how to react or handle it, but here everyone gets it because they are going through it too."