Rachel will be having her first shot of chemotherapy next Tuesday, 11/1/11. Just a simple injection as an outpatient, and monitor for a few hours after that. If all goes well, she'll continue with it on a weekly basis for a few months to see if it stabilises the tumour, or better yet, shrink it. No IV plug needed, thankfully.
After several consultations with a number of reknown pediatric neurosurgeons, open head surgery is still not such a good idea because of the location of the tumour, deep in her head, and her small size, making blood loss a significant worry. Since there is now this drug to try, why not. Pegylated interferon alpha 2b, a.k.a. Peg Intron, is already routinely used by Hepatitis C patients, so it's not all that experimental although use of it for plexiform neurofibromas has only been in clinical trials for the last two years, and only more recently for kids as young as 18 months. She'll be a week shy of 20 months when she starts.
On a somewhat related note, we recently replaced her three chewed up pacifiers that threaten to break off entirely and choke her, with new BPA-free ones. We figured she already has to go through so much, let's allow her to continue having the things that give her some comfort, although by this same age, the older ones were already weaned off their pacifiers.
She's now able to walk some distance holding us with only one hand, and repeating words more accurately too. And I've not known another toddler fonder of receiving and giving kisses, repeatedly! Such a snuggly boojoo. She is very precious to all of us.
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