Nothing like sitting down to breakfast when your child starts vomiting blood and viscous, stringy, transparent mucus! The amazing thing is she wasn't alarmed. After nearly choking on her muffin because her throat and/or esophagus is so swollen with mucus (apparently due to mucusitis, where the digestive tract excretes massive amounts of mucus to insulate the sensitive tissue from ulcers and stomach acid), she gave up on her meal and motioned for me to follow her to her day-bed upstairs to chill with her cat and her TV. Back to the doctor today (thankfully local again) and she seems well. Attempted a raw carrot (I was surprised at the request but went with it), but her throat didn't quite allow for comfortable swallowing. Still, she's not too bad off - ask her how she feels and she gives you the so-so hand gesture, but with a smile - and she's in decent spirits despite her discomfort.
Laura's previous post goes into detail about what's going on, but I just wanted to chime in and say that after some gutwrenching worry today on our parts her oncologist says she'll be fine and can stay home and should recover soon. This may delay her next (6th!) chemo treatment next week, but that's okay by me. She's still a trooper, so please don't be alarmed. Minor setback is all. I keep thinking of Laura's description of the nurse in Santa Rosa who took a look at Millie's charts, registering the potent cocktail of chemicals she's being bombarded with, then took a look at Millie... shook her head, and remarked something to the effect that she's never seen a child so young do so well with all the shite she's being fed.
Soft foods for now... too bad it's unlikely I'll sell her on the split pea soup I'm making.
Side note: Millie has grown an inch since being diagnosed three months ago and undergoing two+ months of chemo. So apparently her growth isn't being affected. She'll likely be six feet tall as an adult at this rate. And she's clamoring for dinner now - gotta go...
UPDATE: Tuesday morning. We managed to mitigate some of Millie's discomfort pretty well last night with a combination of her "magic mouthwash" - which we use to combat mouth sores, which this basically is except below the esophagus and potentially throughout the digestive tract - and the exotic drug known as... Tums. Yep, one Tums chewed up 3 or 4 times a day seems to help with the irritation. She's in good spirits, perhaps a little fatigued, but that will be remedied by the hemoglobin transfusion she's getting Oakland today. More tedium of the drive both ways, waiting two hours for a blood match, then sitting through a three hour transfusion. But she can watch DVDs while she's in the clinic, visit with her favorite social worker, and then her mom promised her a trip to Ikea for her favorite meatballs since they'll be in the neighborhood. These little things help immensely.
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Thanks for update. You're all an inspiration how you're taking the latest in stride. Glad to have Millie running around my house Saturday, if only for a bit. xoxo Steph
ReplyDeleteI remember this happening with my son. They have to stay away from acidic things. Eventually they put him on Prevacid - which was extremely helpful. As long as you take it all the time during the month and during chemo, it helps a lot. The reaction is usually from the Vincristine and affects the esophagus. I hope she is better soon. See if there are meds they can give her to help. They don't always offer them, sometimes you have to ask. You are in my prayers. Patty
ReplyDeleteDo you think Millie could eat Malva pudding? I could make some tomorrow...and don't worry, I'll still bring some on Friday for Laura's birthday!
ReplyDeleteBeth
Malva pudding! I doubt she'd try it, so Friday's fine. Thanks Beth.
ReplyDeleteAnd thanks for the info Patty - very helpful. That's right: when we ask, Millie points right to her esophagus. See the update I added above.
Wow! Reading reminds me of my days as a Therapeutic Recreation Therapist at Lucille Packard Hospital (called Standford Children's Hospital in those days). Millie is so brave and seems like she's holding up amazingly well. You guys are to be commended for doing so well.
ReplyDeleteHave you ever heard of a Katie Shake? I'll email Laura the recipe. They're yummy and shooting on the esophagus.
my thoughts and prayers are with you. I can't even read your stories without it bringing tears to my eyes. I can't imagine what you must be going through as a parent myself I don't know how I would manage.
ReplyDeleteShanti, oṃ āḥ hūṃ vajra guru padma siddhi hūṃ