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 soon rock our world. I will never forget hearing the doctor’s words, “your son is very sick, his Kidney’s are failing, he must be admitted to the hospital right away”. Only a few short hours later we would learn that Ethan was diagnosed with a rare Kidney Disease, called Nephrotic Syndrome.
We were shocked and devastated to learn that there is no cure for Nephrotic Syndrome. The only treatment option was to put Ethan on high doses of prednisone. As if that wasn’t enough, we were also told that for some reason Nephrotic Syndrome is triggered by viral illnesses. A simple cold/flu or fever would cause protein to leak into his urine. Which was the start of a relapse and many long months on prednisone.
Dealing with the many side effects of prednisone and how it changed Ethan’s behaviour and personality was at times more than I felt I could bear. It was during these times, I cried out to God, wondering, just where he was in all of this? Did he care at all that we felt like we were one step away from going under.
I can tell you that God did not let us go under, and that he DOES care. He has answered our prayers, and yours, in ways that we would never have expected. One example would be, getting Ethan into see his Nephrologist right away, when we were told that there were no openings for months. Knowing that this was urgent and we couldn’t wait for months. I posted a FB status, emailing and phoning everyone I knew, asking them to pray that an appt would open up for Ethan to see his Nephrologist as soon as possible.
We received a phone call half an hour later, with the news that they could see Ethan the very next day. The secretary went on to explain her bewilderment at this turn of events, telling me that this kind of thing just doesn’t happen. I told her, “Yes”, it does happen! I have had everyone I know praying, and this is no coincidence, God has answered our prayers. I think I shocked her, because there was complete silence on the other end of the phone. I could tell you many more times like these, where God has given us jewels, gifts from God, as my Mom calls them, to let us know that he has not abandoned us. At the time, we did not know that the hardest part of our journey was still to come. We would certainly need to be reminded of these jewels and God’s never ending faithfulness in the days ahead.
Two years ago, Ethan’s condition began to deteriorate. His relapses were coming every few weeks as his body stopped responding to the prednisone. Our prayers for healing seemingly went unanswered. We were told that Ethan needed to be put on a stronger immunosuppressive drug, which was a low dose Chemotherapy drug. There was a chance that with this drug, Ethan might go into permanent remission, or if he relapsed again, that his body would respond better to the prednisone. I am so happy to say that the Chemotherapy drug worked, and Ethan has now been off all medications for the past 13 months.
We are so thankful to God for this season of restoration and rest. As you can imagine, living with a chronically ill child, not only affects the child, but the entire family. This past year has been a healing time for our family, as we begin to experience a normal life without doctor’s appts, lab tests, medications and side effects. It has been a wonderful year full of new experiences together.
With that being said, living with Nephrotic Syndrome is very unpredictable; we never know what tomorrow will bring. Even after 13 months, I still worry over when the next relapse will come. I find myself wondering, is this part of our journey over, or is this just a nice break? I must constantly remind myself to give this over to God, that he alone is in control. As a life long worrier, who likes to feel in control, some days are easier than others. Regardless of what the future may hold, we are embracing each day as a gift from God, and we are so grateful for his care and protection over us.
