The biggest gainer

Great news today at our weekly clinic visit. Sophie gained more than 1 pound from the last visit, which was last Thursday, only 5 days ago!!!

She has been noticeably eating more these days, and we think the appetite stimulant (cyproheptadine) that was prescribed last week is helping. Even with the help, we will take every pound we can get. We forgot to give it to her today, and she still ate a big dinner! 4 mickey mouse chicken nuggets from Costco, rice and bulgogi, 2 bowls of peanut butter fudge ice cream from Target, some craisins, and a bite of Fuji apple. (In case you can't tell, there are 3 sets of eyes (mom, dad, grandma, sometimes Selah) that keep close track of what this girl eats).

Anyways, so things are looking ok for now. We have 11 more radiation treatments, 2 weeks from tomorrow will be the last day! What to do to celebrate...

To reiterate, we are on clinical trial ACNS0331, which is the standard treatment protocol for standard risk medulloblastoma. After radiation, we have a 4-wk break, then start what they call maintenance chemotherapy, a variety of chemo drugs administered roughly every 6 weeks over 55 weeks. It will be a long year. Throughout this time we'll get an MRI every 3 months to check to make sure the cancer is not coming back. There is a term, NED (no evidence of disease) that many people use, that we will come to also know and hope for each time.

Some of you have asked what "stage" the cancer was. With medulloblastoma, it's considered a rapidly growing malignant tumor, and not really categorized by stage. Regardless of when it is caught (small or large), standard protocol is to resect (remove by surgery) as much as possible, then undergo the standard treatment protocol of radiation & chemotherapy.

Otherwise, we are moving forward. Work is picking up for me, probably will be traveling 2-3 days/month to Kentucky. Buy more Laughing Cow and Mini Babybel! My personal favorites are a combination of our (relatively) new cream cheese with our French Onion or Garlic & Herb wedge on a toasted bagel. Mozzarella Minis are also new, and what I prefer.

More to come on this, but Jeannie's brother, his roommate and some of their contacts are planning to host a social event to raise funds on Sophie's behalf. It will be on Sat, Feb 23, venue to be determined, but will be in Chicago somewhere. Wine, beer, food, a fun place to hang out, meet some people, while raising awareness of pediatric brain tumors and fundraising. If you are interested, please send me an email jtcho78 at yahoo dot com, and I'll get you more information.

Thanks for all of your help & prayers on this crazy journey so far. All of the meals, financial donations, texts, emails, comments, hugs have kept us whole.