Testimony

I wanted to share what I spoke about in Church today. Our pastor asked me to share a 3-5 minute talk on our journey with Ethan. For those who couldn't be there, here is what I said:

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.

Flu

I don't like being sick, especially on the hottest day of the year so far! But it seems that the stomach flu made an appearance last week first with me, and a few days later, Jeff and the boys. Ethan has been going up to a trace the last few times he has been sick, and this is no exception. Today, I saw foam/bubbles in the toilet, long after he had gone. Which is not a good sign, it means there is protein. So I casually asked him to let me know, the next time he had to go, I would like to test him. I have not been testing him every day, but every few days. Which is a big step for me!!! Not long after, Ethan came to tell me that he went in the cup and tested it himself. "He told me he was a trace, but don't worry Mom, it is because I have been sick." I had to smile, kids are so just matter of fact about these things. So unconcerned about the future, only the here and now. I was able to breath a big sigh of relief, if only for another day we have been blessed with this gift of health!

School's Out!

The boys finished School yesterday. I can hardly believe Adam has finished Gr. 5 and Ethan Gr.3. I am so thankful for a year of good health for Ethan. It made going to School so much easier, although Ethan still does not like School. His first words to me when I picked him up on his last day of School " And my year of torture is over". He simply could not wait to get in the car and drive away from the School.

Last week Ethan started showing a trace of protein in his urine. Which is just slightly above normal, it is not enough for example, to warrant medical intervention. But it still makes my heart skip a beat, as that has been the start of many relapses for Ethan in the past. Thankfully after 5 days, Ethan went back down to negative, and I felt myself again breathing a huge sigh of relief. Even after 13 months, I still have some worry over when the other shoe will drop. I find myself wondering, is this over, or is this just a nice break? Only God knows what the future holds, I must constantly remind myself to give this over to God, that he is in control. Some days are easier than others, and on those hard days I find some good worship music to remind me of what I need to do. I found a song by Francesca Battistelli called "I'm Letting Go" that I really loved. Here is the chorus that I found especially meaningful to my life.

I'm letting go, of the life I planned for me and my dreams
I'm losing control of my destiny
It feels like I am falling and that's what it is like to believe
So I'm letting go
This is a giant leap of faith
Trusting and trying to embrace
The fear of the unknown, beyond my comfort zone
So I am letting go

June

As School nears completion, the boys are getting all of their finished School work sent home. I enjoy reading thru what they have learned throughout the year. I came across Ethan's Bible book, which they use at School to learn about various Bible stories and how it applies to life. One entry was on starting a prayer journal. Ethan's prayer request was dated just before we went to our last Children's appt in April.It was so cute I had to share it with you. " My prayer request would be for my Kidney's to work perfect so I don't need a needle".  Then there was a section where you could write when it was answered, he wrote, "YES".

I asked Ethan about this and he told me that he was very scared he would need a Biopsy, hence the needle.

Yes we are so glad that Ethan continues to be healthy, and we hope to enjoy another summer relaxing and having fun!

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!