Nikki and Spencer's Story
Hiya! My name is Nikki and I’ve been a member of Starbright World since 2006. And I’m Spencer, and I joined Starbright World in 2003.
We want to tell you how much Starlight Children’s Foundation and the Starbright World online community have changed our lives.
Spencer: When I was 13, I was diagnosed with a terminal disease called Cystic Fibrosis. Normally, CF is diagnosed in infants and toddlers, but when I was younger, we always made excuses for my symptoms. Like the fact that I always had a terrible cough must have been because of the sinus problems that run in my family.
It wasn’t until I was working on my “personal fitness” badge in Boy Scouts that I thought any differently. In our scout meetings, we talked about signs of serious illnesses like cancer -- like bruising and having a constant cough. I started to think that my coughing probably wasn’t normal. So I asked my mom to take me to the doctor.
At first, the doctor diagnosed me with bronchitis, but then he noticed that my lymph nodes and spleen were swollen, and he thought I might have cancer after all. So we went to the hospital for tests, but they didn’t find any cancer.
While the doctors continued to try to figure out what was wrong, I went back to working on my badge.
To earn it, I had to complete a 50-mile bike ride. By the end of the ride, my arms were almost pure white with salt crystals. I thought they’d come from riding so close to the Great Salt Lake, but really, they were from my sweat. When I went back for more tests, I happened to mention to the hematology doctors what had happened, and they thought the excessively salty sweat might be a sign of CF. Tests confirmed it a few days later.
At first, I wasn’t very compliant with my treatment. After all, I’d lived with CF for 13 years and hadn’t done anything special to deal with it. But then things got so bad that my doctor admitted me to the hospital for a “lung clean out.” Usually kids with CF have to do that about once a year. And it means staying in the hospital for about two weeks going through all sorts of treatments every day.
Honestly, I was feeling all alone and in the struggle for my life.
Then, a social worker told me about Starbright World. I logged on, and immediately loved the place. In the hospital, most patients don’t interact because everyone is afraid of getting sicker. And because I had to wear a mask, they assumed I was very contagious, even though the mask was really to protect me, not protect people from me. But on Starbright World, no one could see that I was wearing a mask. And they couldn’t hear me coughing. I met so many people just like me or with other health struggles, and it opened my eyes to how many of us there are out there -- where just staying alive and healthy is a day-to-day battle.
Starbright World changed my life. Patients with Cystic Fibrosis (CFers for short) are discouraged from contact with one another because we can pass infections between us and be health risks to each other, so making friends with fellow CFers is usually next to impossible. Except on Starbright World, for the first time I had the chance to meet other CFers and we could talk about what we were going through and not have to worry about getting each other sick. So I was able to connect with kids who had the exact same struggles as me (and sometimes even more, which ma de me count my blessings).
Nikki: Just like Spencer, back when I was 11 and first got sick, my family didn’t imagine something was really wrong. We thought I kept getting the flu. But I got worse and worse, and finally couldn’t eat at all and was in constant severe pain, so we went to the doctor. A blood test showed that my system was severely messed up, so my family doctor referred me to a specialist in Denver who diagnosed me with Crohn’s Disease.
I was hospitalized right away for two weeks and put on tons of IV meds and a strict liquid diet. They kept different medications to get things under control, but it took a long time to find something that actually made me feel better.
I was scared out of my mind when I was in the hospital. I was four hours away from my friends and family in Kansas and I didn’t understand everything that was going on. It was really, really lonely and all I wanted to do was go home.
Of course, once I got home, I had no idea what was in store for me at school. I insisted on going back to school the day I got back, despite the fact that everyone in my family tried to convince me not to push myself.
I remember it was actually a field trip day, and when we were at the museum, everyone kept staring at me. I had been on steroids, which caused my face to swell up so that it was totally disproportionate to my body, but I didn’t realize how different I looked until that day. Once it all sank in, I was completely mortified and scared that my face was going to stay like that forever.
I thought I had a lot of friends when I left for Denver, but when I got back, no one knew how to deal with me and people just stared and stayed away.
Worst of all, I thought I was the only one out there with IBD. I started searching on the Internet for information, and found a lot of support groups. But they were mostly adults and when I tried to talk with them, they could never relate to what I was going through with school and changes and friends. But then I found ucandcrohns.org and saw the link for Starbright World and everything changed.
I’ll admit, the first time I logged on, I was a little bit intimidated. But everyone was so friendly and accepting. I think what surprised me most was how people were so genuinely interested in my condition and understanding about what I was going through.
Spencer: Back in May of 2007, I was in really bad shape. I was partially bed ridden and had to use a walker to get around. My kidneys were deteriorating and I was in constant pain.
Worst of all, there wasn’t much doctors could do about it because I wasn’t eligible for a lung transplant. My mom has a chronic illness too, and the money we both collect on disability barely covers our expenses and sometimes we can’t pay the bills. To be put on a transplant list, you have to prove they you’ll have excellent care after surgery, a stable home environment, and someone who is willing and able to drop everything to help you as soon as an organ becomes available.
Honestly, I had very little energy left to fight.
And then I met my guardian angel and best friend, Nikki on Starbright World. I honestly doubt I would be alive if she hadn’t come into my life.
At first I thought of Nikki as just another one of the “chronies” or “IBDers” as we call them. But it wasn’t long before I realized she was very special. We started to notice that we always said the exact same things at the same time when we were in the chat room. It was weird -- like we were having the same thoughts!
Nikki: I told him we were like two peas in a pod.
Spencer: I started calling her Pea from that minute on. When you earn a nickname on Starbright World, you know you’ve made a true friend. And she was. Without Nikki, I doubt that I would have had the hope or drive to survive.
Nikki: After months of talking all the time on Starbright World, Spencer asked me for my MSN messenger information.
Spencer: I had a question for her.
Nikki: I don’t believe he had a question, I think it was just an attempt to get my email address!
Spencer: She always says that! But I swear, I really did have a legit reason why I wanted to talk with her offline, I just can’t remember what it was!
Nikki: Sure… likely story!
Spencer: But ANYWAY, we started talking all the time, and before too long, I asked her if she’d consider being my girlfriend.
Nikki: Of course, we knew a long distance relationship wouldn’t be easy, but we decided to give it a try.
About six months after we started dating, I got really sick, and really depressed. When spring break rolled around, I convinced my parents to let me fly out to visit Spencer. They knew it would lift my spirits to spend time with someone who meant so much to me.
Spencer: When Nikki came to visit, she fell in love with Utah.
Nikki: I’ve always wanted to be a nurse, and the University of Utah has a really strong nursing program. So when it came time to choose a college, I decided to go there. I moved to Utah in August, and after months and months of dating long distance, it’s been amazing to be able to see each other every weekend.
We’ve both said that Starbright World brought us to each other. It allowed us to get to know each other and bond. It’s really hard to find friends, much less a boyfriend or girlfriend, who understands. Spencer understands me completely.
My greatest hope right now is that we can move in together next year, and we can prove to the doctors that I am a constant support system so that he can finally get the lung transplant that will save his life.
Spencer: The relationships you form on Starbright World are an amazing thing. Starbright World members understand each other like no one else can. They don’t judge. They never bat an eye no matter what emotions you express. They care unconditionally.
When you’re stuck in your hospital room for weeks, it gets incredibly lonely. You really need friends to take you away from all the medical stuff and the loneliness. We may all be long distance, but we feel like we’re together in the same room supporting each other every step of the way.
Nikki: The minute teens like us log onto Starbright World, they find a family. When you’re fighting a chronic illness, you need that kind of support from peers to avoid feeling overwhelmed and depressed.
Spencer: Starbright World has meant more to both of us than you can imagine.
We hope you’ll see how important it is Starlight continues to reach out to more teens. The bigger the community, the more experiences we can all share and the better everyone feels.
Update: In June 2011, Nikki and Spencer were married. Read Nikki & Spencer: Life After "I Do"