Update

Tonight,  Ethan will move up to a full dose of the MMF that he has been taking these last two weeks. It is double the strength he currently has been taking. I am so thankful that these last two weeks have gone much better than we anticipated. Ethan has had some stomach pain and whenever I ask him how he is, he says he is tired. We have also noticed a big reduction in his appetite, some days he seemed to lose all interest in eating. Which is one of the side effects of the MMF, but it is weird to see him go from being super hungry all the time on prednisone to not really having much interest in food.

Ethan did come down with his first cold while on the MMF and Prednisone last week. I was super nervous about this, as I had no idea what to expect. So in a way, I am glad to have it over with and it gives us more of an idea of what to expect. He did get the cold more severley than his brother and it also took him longer to recover. But other than that, we are so thankful that the cold did not trigger any protein and he did not have a fever or any other complications. One less thing to worry about!

Tomorrow is also a big day for Ethan as he will reduce his prednisone to 1pill (5mg) every other day for the next two weeks. Then if all goes well at the end of those two weeks he will officially be finished with Prednisone. BUT, this is the dose that Ethan has been relapsing at for the last few months. So I have no idea what to expect. Children's did warn us that he might still relapse 1-2 times even with the MMF. Anymore than that, and they would look at switching drugs for him. So please pray for Ethan, that he would be able to handle the full dose of the MMF without any significant side effects. As well as we desperately want him off Prednisone, so please pray that he will be able to get off this time. Thank you so much, Laura, Jeff, Adam & Ethan

Children's Visit

Today was a big day for us as we headed into B.C. Children's Hospital to discuss with Ethan's Nephrologist putting him on another drug. I am so glad that Jeff was able to be with us, having another pair of ears to listen as well as to ask questions. So the big news is that after a lot of discussion, his Nephrologist decided to put Ethan on a drug called Mycophenolate Mofetil or MMF for short. It is a drug that they use in organ transplant recipients to prevent the rejection of donated organs. But they also use it to treat a variety of autoimmune diseases including, Nephrotic Syndrome. As it impairs the function of immune system cells that become overactive in autoimmune diseases.

From what I understand MMF is not a chemotherapy drug like the one he took 4 years ago. But it does and will suppress his immune system, even more than the prednisone does. Making him more prone to getting viruses and infections. It will also lower his blood cell counts so he will have to have blood tests to check that his levels don't get too low.

Ethan's Nephrologist assures us that this drug is well tolerated among children at their clinics. But I have to admit the long list of side effects is rather scary to read. They said the most common side effect is diarrhea and stomach upset. If that happens and becomes too bothersome, then we might have to change drugs. I did tell them that Ethan already suffers with a lot of stomach pain because of the prednisone and that he is taking medicine for it, which has been helping. He did say that once Ethan gets off  prednisone, he wants him to stop the medication to help his stomach as it won't do anything to help with the stomach pain caused by the MMF.  Unfortunately, there is nothing they can give him to help with that... other than stopping the drug.

The long term side effect that concerns me the most is that taking this drug increases Ethan's risk for getting certain types of cancers down the road. The down side of MMF is that Ethan will have to take it for at least a year and possibly even two. It was also disappointing to hear that Ethan may still relapse while taking the MMF. Which means that he would have to continue taking prednisone as well as the MMF. We were really hoping that he wouldn't have to go on anymore prednsione, that starting this new drug would help him to never have another relapse again. To be our miracle... But that doesn't seem to be the case, as his Doctor reminded us once again that there is no cure.

As we once again step out into the great unknown, I would ask for your prayers. Pray for Ethan that the side effects will not be too hard to manage. Pray that this new drug works, and that he will be able to be fully weaned off the prednisone with NO more relapses. Pray for good health for all of us so that we don't bring home any germs that would complicate Ethan's life anymore. Pray that we would continue to find our strength in Jesus and that this next step of the journey will bring us closer to him and to each other. Without a doubt, we know that God has never once left us on our own and we will trust in him to get us through this next year. I will update you as I can to let you know how he is handling this new drug, Thank you for praying, lot's of Love, Laura, Jeff, Adam & Ethan