Well here we are, celebrating Ethan's 2nd year Anniversary. I can hardly believe it has been 2 full years since I gave Ethan his last dose of prednisone. Two years ago we were at a crossroads in terms of treatment. After 7 years of being on prednisone, Ethan's body had finally had Enough! He stopped responding to the prednisone even at very high ( adult size) doses. Our next option was to add an even stronger immunosuppressive drug, in hopes that this would cause permanent remission. This drug was a low dose chemotherapy drug and came with a long list of side effects no parent wants to read. Like I said, we were at a crossroads, and it was either try this drug, or Ethan would go into Kidney failure. Despite the lengthy list of side effects we plunged forward, clinging to the hope that this drug would be our miracle, that maybe just maybe, this would be the end. Ethan was a trouper and handled the 12 week course of chemo like a champion. We were so happy to finally be done all treatments in early July 2009.
In the weeks and months that followed, we began to see glimpses of the "real" Ethan coming out. The doctors told us it would take 3-6 months for the prednisone to fully get out of his system. Although we did notice some changes in him, I would say it took over a year before we began to notice the most changes to his moods, eating and sleeping patterns. What a joy it has been to see my son enjoy life and participate in things he previously did not feel well enough to enjoy. We have been able to take a few family vacations, enjoy normal activities such as bowling, swimming, hikes, even car rides, which were previously torture for Ethan. We always wondered what life would be like without doctors appointments, lab tests and medications. Now we know!
I used to have to test Ethan's urine every day, although sometimes I would check it more than once a day. Besides doing a blood test, it is the only way we can really spot a relapse before he gets too puffy with fluid. I guess it was my way of feeling in control, in a situation where I felt I had no control. Ethan's Nephrologist said his goal was to get me to a place where I would not feel like I had to test all the time. I told him I didn't think that was ever going to happen. Well, I am proud to say that I have finally reached that goal, sometimes weeks go by before I test Ethan. I am so happy and thankful to see that stick turn to yellow, yellow is normal, green is not!!!
So where do we go from here? We are going to continue to take it one day at a time, being thankful for every day that Ethan is healthy and off prednisone. I am reminded of the many children and families who are still suffering, who have tried every drug out there with no success. I am so very thankful to God and to all of you who have literally carried us when we could not carry ourselves. The power of prayer is amazing and I could tell you many many stories of how your prayers carried and sustained us. Never underestimate the power of prayer! I don't know that I can ever say for sure that Ethan is done, as his Nephrologist told us he could still relapse as he enters puberty or as an adult. I try not to focus on those things and instead focus on today and what a gift we have right now. As time goes by and he continues to be healthy, it is easier for me to let go and relax, praying we have many more happy and healthy years like this ahead!
