I started this blog 6 months ago. I thought it would be a good place for me to express my feelings and possibly a theraputic way of dealing with our new normal. The thing is, I haven't written very much. I've been thinking about it lately, and trying to figure out why. I think it is because of the extremes of the past few months. Some days things are going so well that I don't really have much to write about. Gavin is eating just like he was before, and other than his new steroid 'slurry' that he takes twice a day, things really haven't changed that much. On the flip side, when it's bad (either because he's sick or I'm overwhelmed with doctor appts/medicine refills/research) there's no time for telling stories...it's just basic survival, and trying to figure out this EoE monster and how it works so we can beat it, or at least take less of a beating the next time it hits.
The extremes are tough. Some days we go about our day just like everyone else. There is lots of laughter in our house, lots of tickling, lots of sibling bickering, all of those things that make happy family memories. And then there are the days where I throw myself into learning more about this disease and can't do anything else...to the point that real life is just passing by in the meantime. I guess the bottom line is that 6 months ago I was told that my child, my baby, had an incurable illness that we will fight for the rest of his life. That moment changed everything, yet nothing changed.
This week is a very important one for our family, and not only because it is National Eosinophil Awareness Week. It is also Gavin's first endoscopy since the one last July that led to his diagnosis. Since the only way to really tell if his treatment is working is to biopsy his esophagus, this will tell us if the steroids are working enough or not. I'll try to quickly explain my understanding of how this goes. During an endoscopy, they will biopsy multiple locations in Gavin's GI tract. Each biopsy will be sent to a pathologist, who will look to see how many eosinophils (EOS) are present per high powered field (HPF). His first scope last year showed 59 EOS per HPF. If this scope shows no EOS (maybe 1 even), they would consider him 'in remission' and we would continue treatment. Anything more than 0-1 will mean some decisions on our part. A count in the single digits or even low teens might mean that we have it mostly under control, and any count above that means the steroids alone are not doing the job, and we may need to talk about taking food away. I'm trying my best to stay calm, knowing there's nothing I can do by worrying, but I have this sick feeling in my stomach that I just can't shake. At times like this, all I can do is draw on my Faith, my Family, and my Friends.
Thank you all for taking the time to read this. The blessing here is that I don't take a moment for granted. I tell my kids I love them until they don't even hear me anymore. I kiss them until they squirm away in protest. I say yes when Gavin wants to play with Legos and I'm folding laundry. And I lay there an extra few minutes after they fall asleep to soak it all in, to thank God for what we have, and to draw from those moments the strength to get through the next day.
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