How it all Began- August 15, 2002

To go back to the beginning to where it all began, we were cruising along, enjoying our life, completely unaware that a devastating illness with our young 17 month old son would rock our world. As I look back on those days leading up to Ethan's diagnosis, I remember noticing that Ethan began to wake up with dry diapers. At first I thought this was a sign that he was ready to start being potty trained, little did I know!!! As the day went on, he still wasn't wetting his diapers as normal children should. It was also summer, very hot, and he was drinking lot's of water, something that is normally good, but yet another sign that something was wrong. When Ethan began to outgrow the size 4 diapers I had just bought him, then quickly the 5's and then the 6's. I went to see our family doctor, explained my concerns about Ethan's recent weight gains, but was told that he was fine, and sent me on my way. Only a few short days later, I would return once again, as Ethan was waking up in the morning with very puffy eyelids. He could hardly see out of his eyes, as he stared up at me from his crib. Again, I was told he was fine, it must be allergies, and that I had introduced something new to him to cause such a reaction. I was told to give him some Benadryl, and was sent on my way again. I knew that I had not changed anything new, I already washed all the boys clothing and bedding in Ivory Snow due to their eczema. We were confused with the eyelids swelling, as it would get worse at night and when he was napping, during the day it would seem to lessen. 

August 15, 2002, Ethan woke up with his eyes so swollen that they were completely shut. His eyelids were so huge, they looked like golf balls over his eyes. It is a sight that I will never ever forget. I had never felt such fear, as I rushed to pick him up and then to the phone to call my Mom to come and get us. We didn't have a doctor's appt, they weren't even open yet. But we showed up on their door anyway. I thank God that my Mom came with me, as I was turned away 2 times before, I needed someone to be with me, to reassure me that I wasn't going crazy. Something was wrong!!! She firmly told the Nurse that something was wrong with Ethan and we were not leaving until the Doctor took a look at him. Thankfully, she did listen and the Doctor rushed right in to see us. He took one look at Ethan, went into his office and called our local pediatrician. He wanted us to come over to his office right away, he was waiting for us. This I knew was not good, as happy as I was to finally be seen, I had a sense something was coming.... In the waiting room Adam, 3, at the time, decided that now was a great time to have a nosebleed, again, thankful my Mom was there to help me out. Ethan and I headed into the Dr's. office for an examination. He took one look at him and told me, his Kidney's are failing, you need to take him right away to the hospital. I will call ahead and you can go straight up to pediatrics, Ethan ended up being admitted to the hospital for 5 days. When he was admitted, Ethan had gained a total of 10 pounds of fluid, his blood pressure was high, his breathing was fast and laboured.  Only a few short hours later, we learned that Ethan had what was called, Nephrotic Syndrome. Something, we had never ever heard of, we were told Nephrotic Syndrome was rare, 1 in 100,000 children will get it. We were also told that this was an autoimmune disease. To our dismay, the only treatment option was to put Ethan on high doses of prednisone. Prednisone I knew was not a good drug, My Grandma had been on it for many years. Feeling bold, I told the doctor that I did not want him on this drug. He said, you have no choice, it is this, or his Kidney's will fail. To say we were shocked, devastated would be an understatement. In the months and years that followed we would learn just how hard living with a child who has a chronic illness would be. It affects not only the child, but the entire family.