I've been trying to publish a featured child each day and that is all I want to publish for the day so as not to "take away" from their limelight, during this month, I have been pretty busy and missed a couple of days, and we have had a lot of family things going on. I thought today would be a good day to update on our situation, Lucy, and then continue tomorrow with two kids a day for the remainder of the month.
We have definitely had some major things happen in the past two weeks. I had posted earlier about Zach and his "salivary stone". Well, we went in to talk to the surgeon last week and get a CT scan so that the doc could see exactly where the stone is, and what he is dealing with since this particular area is crowded with facial nerves. Not a stone..it is in fact a tumor. The doctor said he didn't think it was malignant, but there is a 30% chance that it is. 30% is a HIGH percentage to me! especially when the chance of Lucy getting cancer was so low. We don't believe in percents, for obvious reasons.
Anyhow, we are pretty stressed about this. So even if it is NOT cancer, here is what Zach has to look forward to: partial paralysis in the left side of his face for a period of maybe 2 months (maybe longer, hopefully not for life). Droopy face, no salivary gland so dry mouth all the time. Eventually the other glands will make up for it, but that too, takes time. If the surgeon does NOT accidentally cut a nerve (mind you his tumor is literally surrounded by nerves and the nerves wrap around it), there will still be so much pain and trauma done to the nerves that it will take a long time for them to heal. Never mind if the nerves are cut.....we aren't going there. We also don't know how long the surgery is going to last, then we have to wait awhile for them to send it to pathology to see if there is anything to it. So I think right now just the fact that we are dealing with this type of stress is absolutely enough to drive us insane. I mean really! He was fine!! nothing....then one day, he got a lump in his neck. Out of the blue. And it seemed to happen as we felt our life was returning to "normal". Mind you its our new normal, but we had begun to accept it. Every time we seem to get comfortable, something slaps us in the face. Is it not enough that we have accepted our fate as parent's of a child with cancer that we also have to deal with a dog that has a mysterious disease and now this?? If its cancer, we are moving. Not sure how! lol But we will deem this the cancer house, and move. Irrational?? maybe....maybe not. But I sure as hell am not waiting to see if Jack gets a form of cancer or myself.
ok...so update on the rest of the Webers:
Lucy: LOVES school. I am so glad we decided to send her. While we know we may have a few more inpatient stays than if we kept her home, we weighed the pros/cons, and really cannot keep her locked in a bubble for the next 45 weeks (that's how long we have left of treatment). And she really needs this interaction with her peers. And if you see how her face lights up when she talks or "plays" school, you would understand our contentment with the decision.
Jack: well, he loves his teacher. lol but still doesn't like school. I have to accept the fact that he is not going to be the rock star student but average, and I am..slowly...Jack is Jack. He loves to do what he wants, and will groan and growl at what he doesn't like and do it, but not at 110%. And that's ok. Not every person was meant to be good at school. He is still very bright and so funny. And he already knows at the ripe age of 7 that he is going to do what he wants with his life and what makes him happy. That is something I didn't learn til I was 35. For that, I am proud of him. Actually, I am proud of him for everything. He has been through a lot and still manages to make us all laugh.
Taco: Losing weight (which is good, he's on a diet). Seems to have good numbers on his CBC. So we wait. We wait to see if its an autoimmune disorder or if its cancer. If it is, in fact cancer, it will return...just don't know when. Steroids are known to put a blood cancer in remission. Sometimes for a short time, sometimes 6-12 months. But he is back to his old self and sleeping on my feet again ;)
Me: I am ecstatic to have my book published both on hard copy and kindle. And its so cool to see my name in print. Funny thing: I published a book that I couldn't even read after I wrote it!! lol I got to chapter 3. I am also trying to adjust to the fact that come January, I go back to the office. Part of me is ready. A break from the house. Part of me is terrified. Separation anxiety is already kicking in when I just think about it. I will make sure I have lots of good drugs before I go back. My doctor even told me we could work something new into the mix while I adjust those first couple of months.
So...for now that is an update on the Webers. Surgery for Zach is Wednesday....guess what...Steroids for Lucy starts Wednesday!!! If I were you, I would NOT want to be me this week!!! ha!
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