Story shared by Lysa
Wiltshire, United Kingdom
It was May of 2017. We were living in a suburb outside of Chicago, Illinois. Lucas was your typical 16-year-old high school boy. He loved hanging out with his friends and was an avid soccer player on a competitive team since the age of 7. The day our lives changed, I was directing a children’s theater production, so I was at a rehearsal and Lucas was supposed to be at soccer practice. But he called me before leaving for practice and said his legs were swollen. A few minutes later, he sent me a picture, and I immediately knew something wasn’t right.
I raced home and took him to the emergency room where doctors began to run tests. By this point, his legs had blown up like trees! We were very fortunate that his care team immediately recognized that something was seriously wrong. A specialist from the hospital told me they were sending some of his tests to the Mayo Clinic for further evaluation. About 5 days later, we met with a specialist at Comer’s Children’s Hospital in Chicago. She told us that the test results pointed to something called C3G, but that the only way to confirm was by doing a kidney biopsy.
The test confirmed that he did indeed have C3G. The news was horrifying. I was scared. Lucas was scared. That was really the most heartbreaking part. As a parent, all you want to do is help your kids and tell them that everything is going to be okay. But at this moment, I didn’t know what to tell him because I didn’t know anything about the condition or what could be done to help him.
My immediate reaction was to Google C3G to try and learn more, but there was barely any information out there.
The things I did find sounded terrible: no cure, no approved drugs specifically for treating C3G, may require a transplant, life threatening. These were not terms I ever expected to hear about my son—my young, healthy, active son.
When we went back to meet with the specialist from Comer’s Children’s Hospital and develop a treatment plan, it became clear to me that there was no definitive course of treatment for this condition, nor were there many options. Lucas was started on treatment with mycophenolate mofetil (MMF), steroids, and blood pressure medication.
We were told that for a small percentage of patients, this combination of drugs could significantly slow or even halt the progression of C3G. We made the mistake then of getting our hopes up.
Each month we would go back to the children’s hospital for follow-up visits. By the second month, his swelling was completely down and he seemed to be doing so much better. But the blood and urine samples taken at each follow-up visit showed that while his visible symptoms appeared to be better, his disease was still progressing.
Although the medication was helping his symptoms, C3G had already taken a toll on his daily life and became a major adjustment for our entire family. To help combat the swelling, we were instructed to cut salt out of his diet. I have celiac disease, so I’m gluten free. We were then adding his salt-free diet into the mix. I basically had to relearn how to cook for my family. I had always loved cooking, but for a long while there, I absolutely loathed it. It was a challenge to find things that worked for Lucas and me, as well as my other children. It took some time, but I finally found a spice blend that works and still makes food taste good.
For him, giving up salt was the easy part. But giving up soccer was a different story. He started playing when he was 5 and as a teenager had made it onto a competitive travel team. He travelled all over the country doing what he loved.
But after his diagnosis, his fatigue got so bad that he could barely make it through a couple of minutes on the field. His soccer life was completely changed after the diagnosis. When he was unable to play, he became distant from his teammates and friends. His confidence and self-esteem disappeared. Losing what he loved to do made him a completely different kid; he was just so fed up that his whole life was changing and there was nothing he could do about it. It definitely affected his outlook on life.
Luckily, the doctors have worked out his concoction of drugs to mitigate the day-to-day symptoms. When he does have a flare up, the swelling gets bad for a few days, he is in a lot of pain, and he has a tough time trying to sleep. But these symptoms have become manageable, and after a few days, he will typically go back to normal.
However, as a parent, that is always my fear: What happens next time when he doesn’t go back to normal? What happens when the disease does actually progress? I would say, for both of us, the hardest part has to be the unknown—not knowing what the rest of his life is going to look like and how his disease will progress over time.
And that’s really been devastating as a parent to witness. I try to be positive and encourage him to try to be optimistic, but I can see how hard this has been on him. I’ve been a complete basket case as well. I think I cried nonstop from the minute we originally took him to the hospital to when the biopsy results came through.
Now that we’ve been dealing with this for a while, it’s like my mind isn't my own anymore. With every spare second, I’m constantly thinking: What can I do next? Whom do I need to call? When's the next appointment? Is he swollen? Is he having symptoms? What am I making for dinner tonight?
What can I make that everybody likes to eat?
There are constantly a million things on my mind. It makes it hard to stay strong for my family when I’m here feeling like I have nowhere to turn. But you have to be optimistic because if you aren’t, you might as well curl up in a ball right now and be done. You might as well just give up. But you can't give up because it's your kids and you never give up on your kids. We pull ourselves together so that we can be strong for them—even if we have to do it alone.
I don't think I'll ever forget those first 3 months because it was probably the darkest time of my life. No one else in my family had ever heard of C3G. I’ve never met anyone else with it, either. So when you’re in the thick of it and trying to navigate your way through this awful disease, no one around you has any idea what you’re going through.
But after months of feeling like I was alone on this journey, I came across online forums and support groups. First on Facebook, I discovered groups of patients and other parents who had been through the same ordeal.
I remember being so relieved that finally there was a place where people actually understood what I was feeling and could offer answers and advice. The mom of a young boy in Scotland was there for me in the beginning, and we’ve now grown to become good friends. Although we’ve never met in person, we’re bonded by the experiences we’ve had with our children.
The sense of loneliness I felt in the very beginning is really what made me want to get involved in the community. Now, every time new people are introduced on the forum, I always message them privately. I’ll tell them about my experience with Lucas and what we’ve gone through, and I’ll let them know that they can reach out to me anytime. I make sure they know that if there's anything they need, any questions they want to ask, or if they’re just looking for someone to talk to, I’m here.
There are so many of us out there who have gone through this terrible experience alone. But, luckily, we’re now connecting and building a community for ourselves and for our children and families. By having that community and by sharing one story at a time, we’re able to build a support system and hopefully make sure that no one else ever has to go through it alone.
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