Wow... it feels like forever since I've actually been on Ethan's site to update things. I guess it's been since Saturday, huh? Well, I'll do my best to get caught up... (thank you, Hollie for posting a few updates for me yesterday and the day before!)
Well, Monday started out really great. Adam and I had a very nice morning as we got everything ready and all my bags loaded in the car. As we were getting ready to leave, I looked at our living room... we cleared out all of Ethan's toys and blankets that morning, and man, our living room floor hasn't looked that clutter-free in months!
I felt really calm and confident as we were making the 2 1/2 hour drive to Boston. It was strange to leave our house and realize that I wouldn't be back for a couple of months, but I was relatively relaxed about it. I had our video camera out while we left and was just taking it all in. I filmed some of our ride, and made a play-by-play all along the way. Adam was doing his best to humor me. Everything was fine until we actually got admitted into our room. I think it all hit me at that moment. After one of the nurses guided us in, I just started to cry and from that moment on, I just shut down. Whatever "armor" I had thought was in place within my mental, physical and spiritual self, completely fell off... and I've struggled to get back to that point ever since. I've not fully adjusted to our new "home". The days are busy... especially now with Ethan getting two rounds of radiation each day. There is so much detail involved in every single step of, well, everything. You'd get dizzy just reading all the mild-to-severe frustrations I've encountered, but I'm hoping that will subside as I get more used to the people here and the routine of things. Everyone is nice and there are some wonderful resources available to us, which have been a very nice blessing, but it's just a hard situation and right now everything is new... too "new" (I miss everything about MS8 and 2J! You all are fantastic!).
I was talking to someone today who had asked me how I was feeling about all of this, and I simply said that I can't really focus on how I feel about it.... because there's nothing I can do to change having to go through it. No, I don't want to be here doing this. I don't want to have to live away from home for 6 to 8 weeks. I don't want Ethan to be sick or experience any problems over this next year. I don't want to go through all the tiresome details that his treatment will involve.... but I don't have a choice. Adam and I don't have an option to see what's behind door #2. This is it. If you don't like regular soda, you go back and get diet. If you don't like the shirt you bought, you can exchange it. If you find yourself in a job that you hate, you look for another one. If you have red hair and you want brown hair, no problem. There are a lot of things in our daily lives that we can change if we're not happy with it. You can even get mapquest to give you directions on how to get from point A to point B by avoiding all highways, if you like. But, unfortunately, that is not the case with an illness like this. There is no detour. You can't take the path around the mountain, to avoid the dangerous terrain. You must walk up it. And once you walk up, there's no going back down, until you get to the other side... So I can't really spend energy focusing on how I "feel" about this situation.... simply stated, because how I feel doesn't change what I have to do. I'm his mom. And right now, I am in the middle of the most important "job" of my life... I feel tired sometimes, I feel relieved sometimes and I feel overwhelmed sometimes and I feel perfectly normal sometimes. But this mountain ain't goin' anywhere until the Lord moves it. So until that time, we're walking up it. Not always enjoying the hike, but praying that there's fulfillment... good... life... on the other side.
Please be in prayer that I continue to have moments of rest each night and that I'm able to have some energy and availability during the days to reflect on God's Word and spend time in prayer with the Lord. I am so thankful that you are fighting for us in prayer. I haven't been able to find the words to finish the prayers that I start... thank you for finishing them for me.
Other specific prayer needs this week:
1. There are 3 medications that Ethan has to take by mouth (they do not come in an IV form) each day. So far, he throws most of them up. Please pray that he can take these medications as they help protect his liver. More importantly pray God's protection of his liver regardless of the medication getting into his system.
2. He has 2 more days of radiation. So far, he's done very well with the anesthesia. Please pray that the next 4 treatments (2 per day) go as well as they have. Pray also that he'd sleep later in the mornings so as to not have to suffer for the 2 hours he's been having to go without formula (he wakes up at 5:00 and his treatment isn't until 7:30, so that's not a fun couple of hours for him... or me... the afternoons are much better in this area).
3. Pray that he will not be in any pain as he finishes up his radiation treatments as some side effects are delayed.
4. He begins chemo and steroids and other medications on Saturday as we gear up for his transplant on Tuesday. Pray that all cancer cells are removed from his body with each of the new phases of treatment. Each medication has the potential or "expectation" to cause pain and severe discomfort to Ethan. Please pray God's protection over Ethan's body and that only good would come of each thing that enters his body and not harm him. That alone would be a miracle and a wonder to us and the doctors.
Aside from having a mommy who has debated just living in denial, and packing him up to go back home, Ethan is doing great! He is still very much himself. And still relatively active. I am so VERY thankful that he's not been impacted by pain or complication so far.... and my prayer, from the deepest part of my soul, is that that continues for him. I can deal with my own issues, but he is my first priority... and I'd rather have the burden of a thousand "bad days" than him have even one.
Ok... I'm off to chat with my hubby now before turning in.... it's hard to be away from him, but thank the Lord for cell phones and unlimited calling!