I've got Bumpy Kidneys!

Early in 2012 Logan, our 2 year old son was complaining about lower back pain. His complaints typically came in the morning and we thought it was his way of asking us for a vitamin. After a while, his complaints occurred during the evening hours where he knows he doesn’t get a vitamin. Rather nonchalantly, we took him into the doctor who immediately said “a 2-year old should not be complaining about back pain”. After an X-ray and urinalysis came back ‘normal’ as a final precaution our pediatrician ordered an ultrasound. In the ultrasound room while I was waiting for results, the phone inside the room rings. The ultrasound technician comes back in and tells me to pick it up. I know nothing good is going to come from answering that phone.

               Our pediatrician is on the other line talking about “a cyst” on Logan’s kidney and we need to come to his office right away to discuss what this means. I honestly don’t remember much of what was said on the phone but coming out of the ultrasound room I was stopped by the radiologist who asked me if I had any questions about the diagnosis. I again couldn’t hear his words. I didn’t speak to him as tears filled my eyes and I waved him away with my hand. My head was swarming with “a cyst” and overwhelmed by the potential of cancer inside my child. In the waiting area sat Dave and our oldest son, Ethan, who was 4 at the time. I was holding Logan and crying and blubbering to Dave “There is A cyst on his kidney we need to get to the pediatrician now.”

               At the doctor’s office I was corrected in that there wasn’t 1 cyst but thousands, on both kidneys and his kidney volume was greater than the size of an adult’s kidney at the age of 2. At this point the term Polycystic Kidney Disease (PKD) entered our family. There are no words to describe the feeling when your doctor tells you your child has a disease and there is “not much data” in his medical journal. What does that mean? Is it that rare? Is there no treatment? We needed to talk to a specialist, a nephrologist.

               While we waited our family came to our aid. Both my brother, with a research degree in library sciences, and my brother-in-law, with a doctorate in applied mathematics were in research mode and wrote up mini-reviews for us to look over so we didn’t have to parse through it all. They were life savers. It was nice to focus on Logan and setting up appointments versus weeding through the good, bad, and ugly on the Internet. My sister and I investigated getting a transplant for Logan immediately. Not knowing anything about the dangers involved with transplantation we believed at the time this would “fix the issue”. Our research uncovered the dangers and complexities of transplantation and why it should be a last resort and not a preventative measure. Getting an appointment with the nephrologist was originally scheduled for 3 months out. We were too anxious to wait that long.  We called every four hours for 3 days to see if there was a cancellation when we finally were lucky enough to get one. We got in in a week and a half. Finally our questions were going to get answered.

               Our nephrologist is amazing. He has great personal skills and knowledge and was amazing with our little Logan.  Our first meeting, however, did not give us the answers I was hoping for.  “How do we treat this?” There is no treatment. We wait for it to start to affect his kidney function and when his kidneys completely fail we look at alternatives like transplantation or dialysis. “So you are telling us we can do nothing for our 2 year old son?” Right now Logan has 100% kidney function so we just keep checking him for trends towards dysfunction and then we will start discussing dialysis or surgery. Nothing could prepare us to hear that our child, our baby, has a life-threatening disease and there is nothing we can do to make him better. Helplessness, devastation, and guilt are just some of the emotions that consumed us. We know Logan’s quality of life is going to take a very harsh turn and all we can do is wait for it to happen and try to prepare for the fallout.

               We do not do well “waiting”. This is when we found the National PKD Foundation and learned that this organization exists solely for finding a cure for the 1.2 million people impacted by this genetic, life-threatening disease.  Once this disease attacks a family, it plagues the family’s lineage for several generations. Logan’s children will have a 50/50 chance of inheriting this disease. We became volunteers within 3 months and helped in 2012 with the local chapter’s Walk for PKD event. The next year we took over as the walk coordinators for the local chapter and have been greatly engaged with the fundraising, education, and advocacy efforts of the foundation.

Since raising awareness and money for research are all we can do for Logan, we have poured ourselves into that endeavor. The PKD Foundation is funding 15 research grants over two years and has created hope for the entire PKD community on finding the first treatment ever.