Quote

Came across this quote today by Ann Voskamp..."Stress isn’t a situation, only a state of mind. And my mind can choose the peace of God that passes all understanding".  

Back to School

Today was the first day of Grade 5 and 7 for the boys. I can hardly believe how grown up they are getting. Gone are the days of needing Mom to come into the School with them. I was lucky to receive a smile and a wave and off they went. I had to run after Ethan to get him to say goodbye! Such a change from previous years. He did have a moment of anxiety on Friday when we were checking out the class lists for the coming year. There are 4 Ethan's in his grade and all 4 of them happen to be in his class this year.

Ethan continues to be a full trace of protein, hoping and praying that it doesn't progress any further. I have been testing him every few days to make sure we keep on top of things.

Trace

Well, we are a few weeks into Summer, although the weather hasn't been all that summer like. We have been managing to keep busy and go on a few day trips here and there. Most of all the boys are enjoying the lack of schedule as am I. Not having to worry about homework has been wonderful.

I tested Ethan this evening and was a bit shocked to discover he was a full trace. I must admit that my heart skipped a beat. It has been so long since he showed any trace of protein. It makes me wonder, will he always have to worry about protein? I am going to be keeping a closer eye on things for awhile, especially since I have noticed some puffiness in Ethan's eyes in the morning. Will keep you posted!

Healing

Ethan has been struggling with fevers and sore throats these past few weeks. If you are familiar with our story, you will know that fevers can trigger Ethan's Nephrotic Syndrome. Well any kind of sickness or allergies really, but for some reason, fevers have almost always resulted in a relapse. Each time he gets a fever, I am left feeling cautious, nervous, waiting and wondering.... I am happy to report that despite fevers and sickness, Ethan continues to be healthy and protein free.  Ethan doesn't talk a lot about his condition and especially his feelings, like most males. But when he does talk about it, I get a unique insight into his side of things. I can tell that his relapses have been on his mind, as he asked me last night what his test results were. I gave him the thumbs up sign and off he went with a smile! Today, as I was driving to pick Adam up from School. He said this to me " Mom, you know I think I am healed, because with all of my fevers, I still don't have protein." I smiled and told him that I think he is healed too. Which is a scary statement for me to make, since we don't know the future. More and more I am feeling that this is the place where God is leading us.

2 Years

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!

Blessings

Every now and then I hear a song that totally describes my feelings. I came across such a song by Laura Story called " Blessings"  My favourite verse is this:

Cause what if your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

I would not choose to go through these trials again, and I pray that we won't have to, but if we do, I know that even in my darkest night, Jesus is there! 

Health

This morning Ethan came down the stairs and said he wasn't feeling well. My heart skipped a beat as I looked into his puffy eyes. Memories came flooding back of relapses and prednisone, and thoughts of " Oh No, it's finally over" filled my head. Ethan went voluntarily to test himself and despite a foamy looking sample, he was negative. Phew!!! Exhale, I can breathe again!