When I go for walks outside the House, I often spot manzanita trees and find myself pulled right back to my home with the Hoopa Valley tribe in northern California. Its bark is dried and burned during our traditional high mountain dance ceremonies. I never thought I’d find these trees in Palo Alto, and it helps me feel more connected to where my family is today and where we come from. It is one of many connections my partner Sergio and I have made during our stay at the House with our daughter, Lillian.
When Lillian was born in December 2016, we knew she had a very low natural heart rate, but we believed she was otherwise healthy. When she was two weeks old, though, I noticed her skin looked jaundiced. Her doctor didn’t think much of it, but my aunt insisted something was wrong and that we needed to take Lillian to a hospital. I’ll be forever grateful for her intuition.
Our reservation has one gas station, one grocery store, and no stop lights. I remember thinking, if Lillian’s really sick, we’re in trouble. We took her to the ER for a battery of tests and discovered her biliary atresia, a life-threatening liver condition. She was missing the ducts necessary to move bile out of her liver, poisoning it and threatening to do the same to the rest of the body. Even with rapid treatment, her doctors told us she may not survive the year.
What happened next is a blur of hospital stays, surgeries, emergency life flights and waves of emotions. She underwent a procedure designed to connect her liver directly to her intestines, and in the process uncovered that her stomach had flipped itself around. Her fevers spiked to dangerous highs and her liver levels kept dropping. It was a nightmare.
Our doctor advised a transfer to Lucile Packard Children’s Hospital Stanford. He didn’t say it outright, but as he described the advanced care available to Lillian there, Sergio and I both knew he was telling us that Packard was our last option.
We packed our things and left for Palo Alto. We met with Lillian’s new physicians and the social worker who put us in contact with Ronald McDonald House at Stanford. I admit that I only had a vague idea about Ronald McDonald Houses before all this. I saw donation boxes in McDonald’s before, but I didn’t think too much about them. That’s certainly changed. We spent a couple days at a hotel while we waited for a room to open.
That was an eye-opening experience. We felt pulled in two directions – we needed to be close to our daughter, but couldn’t afford to stay locally for long. We realized very quickly that getting Lillian the care she needed would be impossible without the House. The call for our room was an enormous relief.
Our room is our sanctuary. It’s comfortable and calming - exactly what we need in all this craziness. I know it sounds like such a small detail, but I adore the view outside our window. Waking up to the trees and the mountains in the distance every morning helps me feel centered and ready for the day. Just like the sight of the manzanita trees on my walks, our view helps me feel connected to our culture while so far from everything we know.
This is a peaceful place that offers us everything we need. It puts everything else on pause so you can focus on your family. The community here is special. I can’t recall a single transplant patient on our reservation, but here parents are able to talk about what they’re going through. I think about the families here all the time. We’re all in the thick of this experience together and that support is amazing.
We got the call for Lillian’s transplant in July 2017. Her surgery was unique. Biliary atresia has slowed her growth tremendously and at six months old, when she had her surgery, she only weighed 10 pounds and was often mistaken for a newborn. Her donor was five years old and it was a huge risk because of her size disparity. If we weren’t at Stanford, this wouldn’t have been possible.
She’s growing so fast. Watching her gain weight, grow and get stronger is incredible. She’s catching up now and I just love seeing all the positive changes in her appearance and energy. More than a light at the end of the tunnel, I can see a meadow beyond it too.
I didn’t know what Ronald McDonald House did for families before we needed one. Now, I have a whole different understanding. I’m grateful to everyone who helps make the House a home for so many of us. Our family’s next chapter is just getting started and I look forward to sharing more of that beautiful meadow with our daughter.
-- Hillery Dodge