back in September she came home from school one day and said that her mouth
looked different. So we looked and we were like, "yeah, that's a little bit different."
And then the next day it looked a little bit worse so we took her to the
emergency room, where they diagnosed her with Bell's Palsy. We had never heard of
that before, but they assured us that it would
probably go away within three to six months. So as the months went by,
her symptoms just kept getting worse and worse.
She had lost her balance, she vomited, she couldn't go to school,
headaches – really severe headaches – and we knew something was really, really wrong.
We just didn't know what. Until we went to Dr. Lee and he said that she should get
an MRI. The morning we took her in for the MRI we came home; she decided to try
to go to rehearsal for her play – she was in "Grease" and she was really excited
about that. We were kind of in limbo wondering were we going to hear anything
today and then we got the phone call. He says, "I'm very sorry to do this over the
phone, but your daughter has a large mass on her brain and and we need you to go
to OHSU. They're expecting you." So we had to go get Sarah from her
rehearsal and tell her and we had a five-hour drive, which is a blur.
You think you have nightmares, and then this is worse than a nightmare.
I remember when I was getting wheeled in to the surgery room, there was like the
whole hallway was lined down with my family and doctors. I think while we were at Doernbecher,
we felt comfortable and taken care of. We felt like we were in great hands from
the very beginning. That camaraderie from the beginning – it just
seemed like we were coming to a place that cared and that was wonderful.
They let us go home about four or five days after surgery, and then we had to go
back up for the actual prognosis (diagnosis) and that was that was horrible, too.
We sat there and they told us that it was a glioblastoma (GBM), that it's one of
the most aggressive there is and that was stage 4. Sarah just finally said,
"Can you guys leave? Because I want to talk to my family." When I got diagnosed
like the first day I was just in shock and like I didn't really realize what
was going on. I was just mad. They told me it might go away, but most of the
time it will grow back and within two years you're, like, going to die. I was 17
when I got diagnosed so that was like complete opposite of what they teach you in
high school that you're gonna be doing in two years. My whole world, like, changed
that day. Sarah had been making a lot of plans. She loves Portland, thankfully. She
wanted to move to Portland and she wanted to attend an art school in
Portland. She's so creative. I've never been around anybody who had to take chemo
and do radiation, so when we first started, Sara was violently ill. To see
somebody struggle and be that sick anyway and then know that you're causing
it or indirectly, you know, the medicine's doing that, was very difficult. The whole
thing is surreal to look back on because we were living away from home
and going through pain and and illness. When a child is ill, the thing that child
needs more than anything else is for their family to support them and that
means being there, but for the family, it also means having a place where they can
regroup and recharge their batteries and be ready the next day to support their
child all over again. Nothing else should matter when a family is focusing on the
health of their child – not where they can afford to stay, not where they can get
their next meal, not where they're going to lay their head at night.
I think we traveled for at least – back and forth for a constant three
months. You have to call them the day of your arrival. By 2, you'll know whether
or not you have a room and many times you know there are other families that are
there and so you're oftentimes left with your alternative plan, which
they are very very forthcoming saying you have to have a secondary plan
because we don't always have rooms and it's true.
At OHSU, the solution to this problem is very simple.
With the community's support, we are building a five-story guest house, which
will provide really a refuge and a home away from home for Doernbecher and for
Knight Cancer Center patients. I would like to thank Doernbecher for all of
their care. I have to say in a time of sadness and fear that hospital is
absolutely amazing.
Sarah, along with Stephanie and Erica, are just the light of my life and they are
everything that I could have ever wanted in in a daughter. Everything that I could
have ever wanted to be myself. Every day I know how blessed I am to have them
in my life as my daughters and I know that we're going to make it through this
because of the love that we have for each other. The love that my daughters
have for each other is amazing. When I see them all together it's my happy
spot right there.