Hanging out with mommy in hospital room
Practicing walking post-surgery
Taking a break from Elmo to smile for picture
On Thanksgiving, Jordan snapped out of the post-surgery fog and was mostly back to her normal self…eating, drinking, playing. It was a little difficult spending the holiday in the hospital, but my friend Jenn brought us a delicious Thanksgiving dinner which definitely made the day feel more normal. We have been very fortunate to have several friends provide us meals (Thank you Alex, Heather, Michele, Uncle Paul, Aunt Cheryl, Aunt Sue, Joyce & Milli!), but I have to give an extra thanks to Jenn as she left not only her own Thanksgiving meal but also her daughter Maddie’s first birthday celebration to bring us a meal.
On Friday, Craig and I visited Memorial Sloan-Kettering (SK) in New York City. We were fortunate to have Uncle Paul join us to have an extra set of ears. After talking with Dr. Modak, we decided to go with the SK approach that includes five rounds of chemotherapy as well as a stem cell harvest (but no stem cell transplant initially) and possibly another surgery. SK sees about 65-75% of children go into remission after this initial treatment. Once in remission, Jordan will have antibody therapy, radiation, and Accutane to help maintain remission. It seems like the SK approach achieves the same remission rates as other regimens but with less chemotherapy/harsh treatment. Overall, Craig and I left SK feeling very hopeful.
SK advised we could have the five rounds of chemotherapy at Morristown, and Dr. Miller was eager to start therapy so her first round began on Friday. This first round includes three drugs, two of which are infused continuously over 72 hours. So far, Jordan is experiencing a fair amount of vomiting but Dr. Miller is going to adjust her nausea/vomiting medications today to try to address.
A funny story from overnight….the resident comes in after the second time Jordan vomited and asks if she usually vomits…as if it’s normal for children to vomit multiple times each night…I calmly reply that I think the vomiting is from the chemotherapy. Jordan then begins to fuss and he asks why…hmmm, let me start a list. The best was when he held the stethoscope a couple of inches in front of her face?!? Gotta love residents!