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12/13/06 09:17:27 - Oddshere, I get to celebrate the anniversary of Aren’s coming home and mourn the anniversary of Lily’s passing. And while I am grateful beyond words that Aren is healthy and dealing with “normal” kid things, it still hurts that Lily isn’t doing the same. Two years ago yesterday Lily left Sierra Vista for the last time, in a Life Flight helicopter ride to Tucson. Thanksgiving was tough because that was when we noticed that she was starting to slide downhill again. (We were visiting family for that holiday, but Lily was hospitalized the day after we returned home.)
I worry that in addition to the gifts, this Christmas will bring lots of baggage. After all, even on Christmas Day, the doctors thought she would be home within two days. (She was sent to the ICU on the 26th.) Even on my wedding anniversary, we will be reminded of our 6th anniversary, which we spent in the ICU with Lily, eating Tex-Mex takeout, thinking that this hospitalization would end just like every other one – with Lily at our home, watching Blue’s Clues and Veggie Tales for a few weeks untitl she got hospitalized again.
This year has an added level of anxiety, however. We recently found out that MaryBeth is pregnant again, and there is a constant worry about this child’s health. We try to reassure ourselves by repeating that we now know what to look for, and that bone marrow transplants performed in the first 3 months of life have an almost ridiculously high success rate. The problem is, however, that before Aren’s transplant, our kids both had an incredible knack for beating the odds – but not usually in their favor, as far as we could tell.
Although their combined entire medical history tells the story best, a single example is very enlightening: When Aren was a bit over 1 year old, he was given his chicken pox vaccine. The doctors explained that sometimes (though very rarely), children will get a mild case off chicken pox a few weeks after the vaccination, but it’s nothing to worry about. Aren turned out to be one of those “lucky” few… he got chicken pox about 3 weeks later.
But it gets better. He didn’t get a “mild” case, he got full-blown chicken pox. His infection was bad enough that instead of the 5 or 6 sores that vaccinated kids usually get, he was covered, head to toe with pox. In addition to all this, he managed to pass the infection on to his cousins, which the doctors assured us never happens.
Wait… there’s still more. Two years later, Aren developed shingles. According to the doctors, shingles (which occurs almost exclusively in adults) results from the old varicella virus (that caused chicken pox in the first place) coming out of hibernation. His symptoms were a perfect match, right down to the fact that the sores only appeared on the left side of his body (shingles usually is unilateral).
So, Aren, age three, has shingles. It’s unheard of, but not nearly so unheard of as the fact that even though shingles aren’t contagious, Lily somehow managed to get chicken pox from Aren, and got a bad enough case that tests showed that she had such a serious case that there were lesions on her liver and kidneys. Had we not already determined that she had an immune disorder and therefore needed to be watched more carefully, Lily would have ended up being one of those tragic statistics of the very small number of children who die each year of the chicken pox.
I sometimes wonder, however, if maybe my kids really did beat the odds. After all, the number of times both of them (especially Lily) were hospitalized for very serious things, we started to think they were indestructible.
I don’t even know how many times Lily’s red blood cell count dropped below the level that would have put most people into a coma. I don’t even know how she survived having less than 25% of the normal red blood cells. I don’t know how she was even conscious the time we rushed her to the hospital because she was blue, only to find that her oxygen level was about 56%. I don’t know how Aren survived having severe diarrhea for 6 weeks straight, especially after he became so dehydrated that had to be rushed to the hospital and kept there for another three weeks while his gut healed itself. (I'm sure his survival had something to do with the fact that his Grandma had just happened to take him to the store and realized that it wasn't normal for him to comment on how dark it was outside – when it was almost painfully bright.)
So, maybe my kids really did beat the odds. Maybe Lily really was around much longer than she should have been, considering her condition. But I will always wonder why, after lasting so long, she fell so short so close to having her condition fixed. On the other hand, maybe Aren should never have made it to his sixth birthday. Maybe I should always wonder why he was able to be diagnosed when so many other children’s passing is chalked up to RSV or Pneumonia, rather than an underlying immune disorder.
And maybe, just maybe, we will be able to raise our new child without having to worry about anything more serious than a skinned knee or a bad case of poison ivy. After all, odds do go both ways, right?
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Aren is undergoing a bone marrow transplant to fix the immune system defects that caused the loss of his little sister, Lily. To learn more, click here.
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