Children's Visit

Headed to Children's Hospital with Ethan... It's a big day, discussing the big guns (chemo) and what that will all look like treatment wise if he relapses again. Ethan is already feeling like a relapse is starting, although it is not yet showing up on his test strips. He was really worried this morning because his eyes were puffy and his skin felt very tight. It amazes me how the body can detect such small changes long before it actually shows up on tests. Pray that I will remember everything, Jeff has to work today so I am going it alone!


The paragraph above was my Facebook status this morning. First off let me say Thank you to all of you who prayed for us this morning. Our appointment couldn't have gone any better and I truly felt your prayers and was filled with peace and calm. It was a long day, up early and an extra long wait time at the Hospital. But I was able to get my questions answered and more importantly I think it was very reassuring for Ethan and myself. I told Ethan that he had to tell the Doctor's how he truly felt, rather than just smiling and saying he is fine. When in fact, there are things he is struggling with. 

I thought I had prepared him well to feel comfortable enough to at least mention how he is feeling to them. But NO, he just smiled and said he was fine. Seriously, he does not get that from me. I will usually straight up tell you how or what I am feeling. My Dad used to tell me that I wore my heart on my sleeve! So once we got past the awkward and embarrassing sharing of feelings and how he has been doing on the prednisone. The Doctor was able to tell Ethan that what he was experiencing was totally NORMAL!!! He said that once he comes totally off prednisone he should begin to feel better and much more like his old self. All the aches and pains, bone and joint pain, insomnia, depression are all prednisone related. Which is pretty much what I expected him to say and have been telling Ethan. But I think it was reassuring for him to hear it straight from the Doctor. That what he has been experiencing is normal and that he isn't imagining it. 

Ethan is currently taking 10mg of prednisone every other day. So he has about 3 weeks left to go before he is totally off. The plan will be as follows: If Ethan relapses while tapering the steroids or shortly after he comes off prednisone. They said he will have to restart prednisone, going right back up to the high dose of 60mg every day.  Prednisone is the only thing that will get rid of the protein in his urine, Chemo alone will not do that. With this particular drug, you have to take it twice a day, every day for a year! We weren't expecting that number, but he did say that the drug is usually tolerated quite well by most kids. With hair loss being minimal and most of the noticeable side effects being nausea, diarrhea and stomach pain. He did not get into the more serious risks of using this drug. Probably because he doesn't want to scare us, and because he is a let's cross that bridge when we come to it kind of Doctor. Hmmm, sounds like my Husband.... So I am trying not to go there either and just focus on today, and to Ethan finally getting off prednisone. I hope and pray this will be the time he can get off.