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Liz would throw something at my head if I posted a more complete picture of her today. Even with medication, she’s continued to retain fluid and has blown up like a pufferfish. Last week a nasal lavage test confirmed she is suffering from the common cold, and her symptoms have only gotten worse. Tenderness and redness around her nose indicate a possible sinus infection. Today’s temp was a low-grade fever. Tiny reddish bumps are scattered over her arms and chest. She is having, um, “tummy troubles.” (They gave her something called a “hat” to collect stool sample, and you do not put the hat on your head.) And she’s in pain, from a near-constant headache to soreness in her legs and joints. As I write this we have been bouncing around from various tests to make sure they have a handle on what’s going on with her.
So … she’s not having a great day.
While the big-picture cancer-stuff is all looking good—next biopsy in December!—her months-old immune system isn’t ready for seasonal illnesses that are going to sweep through our house filled with school-age children. Some of her symptoms may indicate GVHD, which they may be able to confirm within the next couple of weeks. We are counting our blessings but it’s definitely a mixed bag.
Time and money are in short supply as we enter the holiday season, and the cancer marathon has lasted long enough that “real life” without Liz’s illness being a daily issue is hard to remember or even imagine. Speaking for myself, perspective and priorities have shifted so drastically I’m not quite the same person I was before my daughter was diagnosed. One day I hope to pay it forward for all the support and assistance we’ve received by putting time and energy into helping other families that are going through what we’ve experienced. In the meantime, please show Liz some love and support by commenting here on the blog or sending her a Tweet. Browse our little online store for your holiday shopping. Share our links to anyone who might be interested. Every gesture, even the smallest, means more than you know.
To hell with it. She may get mad, but I want to share what I’m seeing right now, a 19 year old girl so hurting and exhausted she fell asleep with her phone in her hands. We’re still here at the clinic, so if you don’t hear from us send food!