Brooke Starts New Clinical Trial In Boston

We have officially been in Boston (and surrounding area) for 2 weeks now. Brooke started a new trial (Phase 1 trial combining Decitabine and Vaccine Therapy) at Dana Farber Boston Children’s on July 8th (technically, due to some first day mishaps she started it on the 9th). She had a week (Tues-Sat) of chemo (Decitabine). She tolerated the chemo really well – no nausea at all. She has been having some issues with low blood pressure (running in the low 80’s over 40’s or low 50’s) but for now they are just monitoring it (she is typically 90’s/60’s). This past Tues the 16th she got her first dose of the vaccine (this vaccine was made using her own dendritic cells). It’s a long day. She starts with getting study labs drawn through her port, wait for the results, then before the vaccine is administered, a cream called Imiquimod, is applied to the vaccine site and must wait another 3 hours to get the actual vaccine. The cream may help immune cells travel to and become activated by the vaccine. Once the vaccine is given, more of this cream is applied to the site and covered and she has to keep it on until the next morning, then they monitor her for another hour before we can leave. It was quite the production – Doctors brought in the vaccine in a transplant cooler, the room was packed with people observing (2 doctors, 2 NP’s and a slew of nurses). It kind of freaked Brooke out so she demanded that everyone get out! So everyone backed away and gave her some space and Dr. George gave her the vaccine. Brooke described the vaccine as the “worst pain she has ever felt in her whole life”…fortunately at least, the pain only lasted a few minutes then she was back to playing. We were back at Dana Farber Fri for labs and a quick check up. This Tuesday (23rd) she will get another dose of the vaccine. We are enjoying our time in the Boston area and every day is a new adventure. We have been living part time at the Ronald McDonald House and part with a wonderful family in Milton, MA who have taken us in and already made us feel like part of the family. Since we are kind of all over the place right now, I have gotten a post office box in Brookline near the hospital and RMH if anyone would to send Brooke a card. The address is: PO Box 471025 Brookline, MA 02447-1025 We already have lots of fun stuff in the works: Probably the coolest thing is Brooke will get to be the honorary bat girl before the Redsox game on Aug 2nd. Other upcoming events for onco kids and their families will be this Sunday “Dream Night at the zoo” and then next weekend “Expect Miracles Kids Golf Day” at Fenway Park and the “Jimmy Fund Festival”. Our friends, Amy & Isabella, form South Dakota are coming to see us soon and so are Kellie, Jean, Ashley, Aly and my Mom. Thanks for all the love, support and prayers, Amy