So many of you have asked me how my son Benjamin is doing. I have not written about him lately because: 1) I just got burned out talking about it; 2) He is getting better; 3) Not everyone is interested in hearing about my little boy's illness.
But here is the scoop: Benjamin is doing great. Here is a list of some of the things that make me optimistic about his recovery from Castleman's Disease:
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As of last week, he is off prednisolone, the steroid medication that he had been taking since February 2008.
Why this is good: Taking medication makes him feel like he's sick; being off of it seems to brighten his spirits -- psychologically, I think he feels healthier not taking medicine. Also it's good because the doctors obviously don't feel the steroids are needed anymore. Another reason this is good: I can expect my old boy back. Steroids caused some dark and quick-changing moods in my normally happy kid pre-Castleman's.
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He can swim again. Benjamin is an avid swimmer, but since the onset of the disease, he has been unable to swim since January 2008. Just this past week, he was given the thumbs-up to try swimming in a pool again. He did and he loved it. We didn't keep him in too long, as we thought the chlorine was affecting his lip condition, but I had tears in my eyes watching him leap into the pool, not caring that others were looking at the many scars on his body.
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He is able to participate in normal activities for the most part. He can run, he can walk, he can rollerblade. He can, he can, he can, he can!
Does this mean he's healed? No, not quite. Some things he's still faced with are:
• Hardened versions of the original lesions on his feet have destroyed all the nailbeds on his toes. He essentially has no nails and the nailbeds look like a relief map of the Rocky Mountains. The doctor said she didn't think they'd grow back -- they are too "distressed."
• His lips are still extraordinarily sensitive. They bleed when bumped lightly and they still have a couple of small lesions on them.
I didn't believe the oncologist when she said it could take two years for this to fully clear up. I scoffed at her then, believing that once they took out the tumour, everything would be back to normal in no time. Now as we're nearing the end of Year 1 with this thing, I am starting to understand.
Next week, I am going to visit a couple of my best girlfriends to have a weekend reunion. I believe I have been saving up all my feelings about this whole ordeal for that trip. I haven't really shown how I feel to anyone -- not even my husband. Not really. This little trip will really, really help. Sometimes, there is nothing like a girlfriend's shoulder to cry on.