Race Day

Yesterday our family completed the 5k race in the Run for Water. Wow, what a difference a year makes and one without any medications for Ethan. Last year Ethan and I walked the 5k and I basically had to drag him along beside me, my Mom even had to piggyback him for some of it. I am so proud of my boys for running the entire race. Ethan and Adam finished in 33 minutes, Ethan improved his time by 25 minutes! Last year he said he never wanted to do the race again and here they are already talking about improving their time for next year! Thank you Lord for these blessings!

One Year!!!

This week we are celebrating the One Year mark! I can hardly believe it has been 12 whole months since I gave Ethan his last dose of Prednisone. July will mark the end of his chemo treatments, but we are still celebrating nonetheless! I mentioned this milestone to Ethan just the other day, his brother asked him if he remembered what he felt like when he was on prednisone. Ethan responded, "Oh Yes"! I had headaches, stomach aches, couldn't sleep". When we both mentioned to Ethan how grumpy he was, he seemed rather surprised!!!

 I am so happy and thankful to see my son happy and healthy, to see his smile and hear his laughter. This year has brought us together as a family, in a way we have been learning and getting to know our son as we haven't before. The longest Ethan has ever been off prednisone was 14 months and that was back when he was 2. So we didn't quite know what to expect, how would he behave off these steroids? How much of his behaviour was caused by the steroids and how much was actually Ethan? We were happy to discover that most of the mood swings and meltdowns were caused by the steroids. Yes, he is still a normal child with his ups and downs, but nowhere near as severe as when he was on prednisone. 

Ethan's eating patterns have also changed, gone are the days of ravenous eating. Finding low salt snacks and foods were a challenge, especially when the steroids made him want to eat anything and everything in sight. We are still trying to follow the low salt diet, it seems to make a difference with his protein. If he has a day of more salt, we do notice that he will go up to a trace of protein for a day or so.

Sleeping has also returned to a more normal pattern and one that makes our life so much easier. I would often lay awake worrying about Ethan not sleeping. He would often cry that he wanted to sleep but just couldn't. Which would then affect his moods and desire for going to School as well. I am happy to report that since January, Ethan has been doing much better in School too. He still doesn't enjoy School, but at least he doesn't complain like he used to. Doing small outings and day trips with the boys have become so fun. Not having to worry about Ethan complaining how bad he feels, makes the trip so much more enjoyable. We asked Ethan what he would like to do to celebrate his one year off prednisone. His response was to go to Hawaii!!!!!! AHHH, a boy after my own heart! Well, we settled on going to Hell's Gate and Othello Tunnels just outside of Hope yesterday. We had a great time together, making memories. We have no idea what the future will hold and if we will have to return to the land of steroids. But for now, we are continuing to celebrate every day, as a gift from God!

Nephrotic Syndrome Seminar

When Ethan was diagnosed with Nephrotic Syndrome, I made it my mission to find as much information as I could on his condition. I came across a U.S. Foundation called "Nephcure". Their mission is to support research, seeking the cause of Nephrotic Syndrome and FSGS. To improve treatment and help find a cure, as well as providing support for families dealing with these conditions. Since they are based out of the U.S. there have been no events or seminars here in Canada. I had always wanted to attend one of their seminars, so I was very excited to learn they were finally coming to Canada. Yesterday, Jeff and I headed out to Vancouver for an afternoon of learning. 

Before the seminar started, they asked us to introduce ourselves and share how old our child was, age of diagnosis, what treatment options we had tried and how our child was doing now. There were only 15 families in attendance that day, but we could relate to every single one them. I had to hold back the tears as the stories they were telling matched so closely my own. Ethan was the youngest of all the children to be diagnosed and he was the 2nd child to currently be in remission. All of the children had been on prednisone, had become steroid dependent and are now on their 2nd and 3rd chemotherapy drugs. I am acutely aware of how much worse Ethan could be doing and how so many families are still suffering, while we are celebrating 11 months of remission. 

The first doctor talked about the role that genetics play in Nephrotic Syndrome. He told us that Nephrotic Syndrome is caused by a defect in the Kidney filters, causing an abnormal immune response. They have also discovered that these children have a defective gene. Out of 30 billion cells, they are beginning to narrow it down to around 900,000, that could possibly cause Nephrotic Syndrome. Some interesting facts for you, 80% of N.S. are due to unknown causes. Other possible causes are infections, allergies, heavy metal exposure and drugs. Our ears perked up at the mention of allergies, as Ethan has many things he reacts to, including foods, pollens, dust, grasses and animals. Jeff asked if Ethan was exposed to these allergens, could it cause him to relapse. The answer was, YES!!! We had already been told that from two other doctors, but it was good to have it confirmed once again. 

We also heard about the treatment options and the need for research. So much has yet to be discovered and this valuable information will help the doctors treat these children and hopefully one day find a cure. 

There is so much more I could say but I will save it for another post!