Jude is doing great. Jude looks like a regular kid now. It's crazy to us - I can't keep my hands off of his head of hair! There's even small things that just make me beam with joy - like the feeling of my lips touching hair when I kiss him on his head instead of skin. Or sud-sing up his head of hair instead of the few hairs he had left. Or just watching him eat with ease - instead of trying to bribe him to get it down. I could go on and on and on. We are so, so , so grateful. Jude doesn't really talk too much about cancer really anymore. He'll occasionally throw in a cancer term or mention Kenzie being an angel up in Heaven, but for the most part I hear a lot about school, Halloween, his ever-growing Christmas List, etc.
Jude is officially into the "why?" stage - which I love! And last night I caught him trying to laugh along with the adult conversation - but of course not understanding it fully. I love this stage - I remember my niece Kyndal going through it and just loving it. Well, loving it and hating it because it now means we have to watch what we say around him even more! :) His energy level is coming back more and more. 2 years ago I never thought I'd say this, but I love seeing him bounce off the walls hyper! That is something I definitely took for granted! So much that when I have to get onto him when it's bedtime, etc., I actually really love seeing it each and every time. I clearly remember a time when I truly didn't know if I'd ever see that again.
And then there is little Miss Addie. She is so precious. I just love that little girl more than words can express. She is such a trooper, isn't she? I love just hanging out with her. She's started to follow some of her sentences with "for real!" while arching her eyebrows and nodding her head yes, as if I was ever doubting her in the first place. And the girl LOVES to draw! She could spend all day drawing - and she's really really good at it. She can even whip out writing her letters like nobody's business - but the crazy thing is she doesn't necessarily know what letters they are - she just copies the image she sees from memory. Clint and I truly think she has the gift of art. It would definitely explain her unique personality to us.
Addie has really been into relaying messages from God to us lately. For example, the other day I left to run some errands and my mom came over to sit while she was supposed to be taking a nap. Well what do you know - right after I left Addie comes out and tells my mom that God told her she could get up from her nap! My mom tells me this and then follows it with "what was I supposed to say?". Then last night Addie informed me that God told her that I'm not supposed to put anyone in Time Out. She definitely is figuring out how to work the system. She's a smart little girl.
Clint and I are constantly creating our "new normal" which is not normal at all. I only say that because we will never get back to life as we knew it, never. We discovered that on January 6th, 2010 a little part of ourselves died that day - the part of us that was naive to think our kids wouldn't get cancer or bad things can't happen to them. And although it was a false sense of security, it felt like security. Now we have this nagging thought in our heads saying "what if". We are not letting it run our lives, but at the same time we can't, and won't, underestimate cancer. So creating our "new normal" means figuring out how exactly to live with that nagging voice in our heads and at the same time enjoy life. This is a lot tougher than I thought it would be. The nurses and doctors told me it would, but man, I just wasn't expecting this. At least when we were inpatient there were multiple eyes, other than my own, watching him. Now, for the majority of the work week - it's me. I even find myself still a little weird in social situations. I can't describe it - I just know I feel awkward sometimes- which is something I NEVER have experienced. No matter where I am, if there are kids and parents running around my first thought is "most of these people don't know how good they have it". But I'm glad at the same time they don't because that means they haven't been through what we went through. So if I'm ever quiet around any of you or have a weird look on my face - it's just me working through some stuff in my head - just ignore me please and I'm sure I'll snap out of it in a minute or two :) We are both hopeful we won't be socially handicapped forever :)
Yesterday we went to clinic for our monthly checkup and everything looked great. There is one thing we are going to have to start doing as a side effect of chemo - he's going to start to have to get monthly transfusions of a different type of blood product than we've gotten in the past. There is this level called IGG and it's not coming up like it should, which we were warned about from the beginning. It's a typical side effect from the Rituxin drug and all it means is that his white counts need help keeping up so that he doesn't get more sick than you or I would. This is something that he may outgrow as he gets older, or possible have for the rest of his life. But when you put it into perspective, I'd rather be having this problem than not have him here with me at all. So for how we'll have to go monthly for a 4-5 hour transfusion (which he'll get the first one a week from Friday). Other than that Dr Lewing said he looked wonderful. His next set of scans are scheduled for Nov 11 for MRI and Nov 19 for CT. I will be glad when these get here.
Well I hope this post finds everyone doing very, very well. I want to say again how grateful we are for all of your prayers throughout the past year and the continued ones. God has been so good to us by blessing us with an amazing support system and prayer warriors such as yourselves. May God bless each and every one of you.
The next time I post will probably be after Halloween so you can see some hopefully great pictures. Addie is going to be Alice In Wonderland (which she'll look just like!) and Jude is going to be Wolverine - I know, a shock right?
Lots of Love!
Sarah
