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