Children's Checkup

Today Ethan and I headed out to see his Nephrologist at the Children's Hospital. Traffic was very busy, more than it normally is when we go in. I tried to keep the stops and starts as smooth as possible as Ethan gets car sick, he looked very pale and green by the time we arrived! When he was back on prednisone, those trips were even worse. It has been 6 months since we last saw Ethan's Nephrologist. I was very curious to see what they would say at his progress. Of course he was very pleased that Ethan continues to be healthy, with no protein whatsoever for the past 11 months. The good news, is that Ethan received a clean bill of health, with his blood pressure and urine all normal. He is in the 50th percentile for height and weight, which is good, despite all the steroids he has had.

This visit was  relatively short, as we didn't have many issues to discuss. But I did ask the all important question. One he had a hard time answering!  "Is this it? Has Ethan finally outgrown his Nephrotic Syndrome"? His answer surprised me, he told me that Ethan will always have Nephrotic Syndrome. What? I thought he would outgrow this, and now you are telling me he will always have this!  He described it this way, he will always have to watch out for signs, symptoms, even as an adult. The frustrating part of Nephrotic Syndrome is that there is no known cause and no known cure, so even after many years of Ethan being healthy, he could relapse again.

If it would return in a few years or as an adult, he said the chances of it being permanent and needing a Kidney transplant would increase. Now, he said, that is the worst case scenario. Thanks, like I needed to hear all the worst case scenarios.... That is what I get for asking!!! With a big smile on his face, knocking on wood, he told me that he believes Ethan will never relapse again. Hmm, I have heard those words many times before. The last time was right before Ethan had his worst relapse yet.  I have come to realize that despite the doctor's assurances, they truly don't know either what will happen. As much as I would love to know the answer, we are going to continue to take it day by day. Thanking God for every day, week and month that goes by without a relapse. Thank you to everyone who has been praying for Ethan and my family over these past 7 years, you have no idea how much those prayers, love and support have meant to  us. We couldn't have made it thru some very dark and hard times without you all, so thank you very much!

Overnight

We are so thankful that Ethan continues to do well, I can't convey how amazing it is to see my son happy and healthy, enjoying life! We are off to see Ethan's Nephrologist next week, I am very excited to hear what they have to say and for them to see how well Ethan is doing. To think where we were at this time last year. Ethan was the sickest he has ever been, and he was starting a 12 week course of a chemotherapy drug. In the midst of the trials of last year, I often wished things would change overnight.  I came across Amy Grant's new song " Overnight", which sums up exactly how I feel.

" If it all just happened overnight, you wouldn't know how much it means. If it all just happened overnight, you would never learn to believe in what you cannot see."

April

Time is just ticking away, the days and weeks seem to be flying by. Here we are already into April.... Easter has come and gone and we are looking forward to seeing Ethan's Nephrologist at the end of April. It  will be six whole months since we have seen them. I can hardly wait to see what they have to say. I would love for them to be able to tell me that Ethan is in the clear. That he has outgrown this disease. But I know they can't do that. Only time will tell, and so we keep on, keeping on.

It has also been 3 months, since I have embarked on my own health journey. I have completely changed my diet, finally lost some weight, and I am happy to say that I am feeling much better. It has not been an easy road, and there are days, where I feel so sick of eating the same thing, I can barely choke it down. The rewards have been so great, my migraines and daily headaches are getting less and less. There have even been a few days in a row, where I haven't had to take any medication for my headaches. I had all but given up hope of finding any relief, after so many other failed attempts at finding a "cure". It took me a long time to get to this place, where I was ready for change. I would say I was ready for the pain to be gone years ago, but I wasn't ready for the sacrifice that it would require. It is not easy, and I still crave and miss my favourite foods. But I now realize, the temporary taste, is not worth the pain I will suffer later on. Something my Mother has been trying to tell me for years! No one can make you do anything, it must come from yourself and I finally got "it". My "Aha" moment!!! Taking the road less travelled is hard but so worth it!!!!