15 months and Counting!

Yahoo!!!! Ethan has now made it 15 months without any of his medications. I am beyond excited for this milestone as he has finally exceeded his old record of 14 months. Ethan continues to fluctuate between trace, negative and sometimes slightly more. But for the most part, he is doing very well, healthy and happy. He is NOT, however, looking forward to starting the fourth grade next week. Adam on the other hand is very excited to be entering Middle School. Wow, I can't believe I am going to have a 6th grader. I remember those years very well, and I am so thankful I don't have to repeat them!

California

We arrived home a few days ago from a wonderful fun filled vacation in California. We took the boys to Disneyland, Universal Studios, Sea World and the San Diego Zoo. We packed in as much as we could, knowing that it would be a long time before we go back again. We drove for 24 hours straight to get there and took 2 days on the way home. The drive home was actually harder than doing it for 24 hours straight. The boys did very well with the driving. Ethan normally gets carsick, as do I, but we both did very well. I came prepared with our sea bands and some homeopathic motion sickness remedies that worked very well. 

A few days before we were to leave, Ethan started having some mild protein. Which was concerning because we didn't want him to relapse while we were away. This would be the first vacation ever, that he would be off all his medications, and we were so looking forward to it. Thankfully, his protein stayed between a trace and 0.3 so he didn't have too many problems, other than some stomach aches. Of course, he did not enjoy all the walking we did. We were thanking God that he was healthy enough to enjoy our trip, knowing that there would be no way we could have done this trip if he was relapsing or on prednisone. 

We were surprised to find out that Ethan does not like roller coasters, we thought for sure he would. Adam took a day to warm up to them and then he was very willing to try new rides. Poor Jeff, he ended up going on the big ones by himself and Adam joined him on a few too. The first day we arrived back home, Ethan went back to negative, go figure! Here is hoping he stays that way.

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!