I realize it's been awhile since I've written, and I apologize to those of you who check the blog regularly. We have had some technical difficulties with our laptop. To make things easier, I am going to try and do a regular post every Monday night.
This phase of chemo that Rohan is in, interim maintenance, has been much easier than the previous two. He has lost the puffiness and bloating from the steroids and looks more like himself. He is also back to being energetic and happy. Now as you can imagine this makes me and Ravi feel better; however, it does have a drawback. Since he feels better, Rohan wants to do more and go places and gets bored just being in the house. But the thing he doesn't necessarily understand is that he is not better and still has restrictions. As the weather gets cooler, staying home all day is becoming more trying for all of us.
Halloween is on Friday and he will be able to go trick-or treat...hurrah!! Rohan is going to be a fireman and suggested that "Arya can be the fire dog," i.e dalmatian. Since Arya has no real preference, she is going to be a dalmatian puppy. I am excited and grateful because this will be such a normal activity for him.
His night terrors have subsided. Thank God! He doesn't like it if Ravi or I go out at night, and he has to go to bed without both or one of us. I think he just wants everyone at home. The irony is, this is the most time we have all spent together - just us. We're pretty much home every weekend , and Ravi is home from work at least once a week. I guess there is some grace in that.
The Prologue
Since Rohan cannot explain what is happening to him, I have decided to start this blog as way to translate to all of you how he is feeling and doing throughout his treatment for leukemia. I also want it to be a kind of record for Rohan when he is older and able to read. With that said, there may at times be postings that might not make sense to you but will make sense to him later.I hope this blog helps all of you who care about Rohan and us better understand the journey. I already know it will help me to have more clarity while I make this journey with him.
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Hello Rohan, the fireman
on Halloween all that you must do is to pretend that nothing can frighten you at all. But still... if someone scares you (don't let him know that!) ... act like you were just acting like a frightened kid. Just say Happy Halloween!!!, share a smile and invite him to join you and Arya scaring others. And your fun will be doubled. Isn't that cool?
Enjoy this Owl Friday
Love,
E + JB
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