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."
