Big E

It has been about a month since I have blogged (and I promises I will get the blog updated with all our crazy adventures very soon) this was not due to desire or want but do to focus. As most of you should know our Ethan has some health problems. He was what they think is a genetic auto-immune type disease. 


The week leading up to Halloween Ethan was hospitalized at Primary Children's Medical Center for the 3rd time (we were in UT visiting when he got sick). Even after over 2 years of chemo therapy treatments, iron supplements, and repeat steroid treatments he continues to have the same problems he had from day one. During his hospital stay we learned a lot more about Ethan and the disease he is trying to fight. First of all any prior diagnosis were thrown out and the Docs went back to the drawing board. We learned (in order from easiest to accept to hardest): that Ethan is allergic to milk protein, he has very low antibodies that help fight infections, and due to his disease he has pulmonary hemorrhage. 


So the idea is to figure out how to treat the disease which may never have a diagnosis and it fixes the other things. The treatment involves iron supplements and the occasional iron infusion, he will take CellCept daily (http://www.rxlist.com/cellcept-drug.htm), he will continue to have Rituxan chemo infusions every 6 months (http://www.rxlist.com/rituxan-drug.htm), he will get IVIG infusions every 4 weeks (http://www.rxlist.com/vigiv-drug.htm), we will handle bad episodes with steroids (http://www.rxlist.com/prednisolone-drug.htm), not forgetting to mention the meds to help him sleep because the steroids and CellCept keep him awake, the multivitamin, the calcium because the steroids can break down bone density, and vitamin D. Lastly, we have to get him on a strict diet cutting out the crap, making it high in iron, and ensuring he is getting the daily recommendations of everything. 


So drugs are good (well bad but good) but we also have to ensure he is never around anybody who is sick. This means high alert parents, lots of hand washing, and really ensuring that Ethan's teachers understand. Sounds pretty easy but trust me this is far from easy. He can longer go to the kids club at the gym, places like Chuck e Cheese are a virus/germ/infection hot zone, making a 3 year old wash his hands a trillion times a day sucks. 


Meeting Ethan you would never know that he has any health problems. Right now the puffy checks give it away to a parent who has experience with Prednisolone. Other then that he is an active, awesome, fun kid. We joke that the meds make him wired and act crazy, which is how I justify letting occasional bad behaviors slide that I probably shouldn't.


The scariest thing of all of this is the unknown. As a parent we want to just fix this for Ethan but all of us, including the doctors, are at a loss for how to fix it. Some doctors are more optimistic then others and some says things like "just give him the best quality of life" or "well for however long he lives" and those are words a parent should never have to hear. On top of the long term fears we have to worry about the side effects of all these drugs. Ethan's lungs are in danger so we do not feel we have the option to avoid these drugs. I think it goes without saying that someone cannot live without lungs. 


Our challenges and fears trying to find a diagnosis, understand the prognosis, and outline a treatment... find a solution before it is "too late", make the right decisions with Dad being a world away, just make the right decisions in general, ensure that Ethan has the best life possible without feeling like the sick kid, make sure Evan doesn't feel cheated or that his life has been less because of these challenges with his big brother, making sure I don't miss something in Ethan's day to day health, and to continue to think positive. 


My brain and heart are still having a hard time accepting what is happening to Ethan. I feel like I am hearing someone else's story of an amazing kid with a non-curable, unexplained disease. Unfortunately this is Ethan's story. I used to worry about Ethan feeling pain from a broken heart, a bad day at school, or a lost soccer game. Now we worry about the pain from the weekly blood draws, and from the daily joint pain, and how we are going to ensure Ethan lives a very long life. Ethan is 3 and these are not the words I want to be blogging.  


Prayers and positive vibes are all anyone can do. Our amazing family and friends are so supportive and for that I will be forever grateful. Keep thinking of our Big E!


-Very worried Mommy