It's been awhile (over a month, and very busy month at that!) since our last update. I apologize! Campbell kept me busy in Boston. Let's just say she does not like Propofol very much. That is an understatement. It has now been added to an "allergy" list. It makes her crazy. Literally, Linda Blair from The Exorcist crazy. The anesthesia team at MGH finally came up with a plan that involved versaid and propofol that gave me my sweet Cam upon waking from anesthesia. Much better than the crazy Cam who was beating Mommy up daily. I'm not kidding! I have witnesses! Ask any of our friends from Christopher's Haven!
So, we spent time bonding with other pediatric cancer families during our time in Boston, yet again forming bonds that I know will stay tight (just as they have with Tara and Jen from last time around). There is something to be said for a shared experience like this. It's a bond like no other. As bizarre as it is to say, I am glad for the opportunity to have met all of these amazing women. All mother's. All gaining strength from each other, in different ways, whether that be a sounding board, a wine fairy or a chef. It was wonderful. I am so grateful to Christopher's Haven for not only providing us with an economical apartment for our time in Boston, but even more so for the opportunity to spend time in the momcologist dorm. I truly do miss our spontaneous sit on the floor in the hallway drinking wine telling stories sessions.
That being said, I am glad to be home. Cam rang the bell on 9/9, with a crowd of cheering families watching. Friends from Christopher's Haven even came back over to the Proton Center to watch and cheer AFTER their appointments for the day! Wow! I cleaned the apartment and loaded the car while Cam hung out with Hannah one last time. Even a 5-year old understands the strange situation we are in - she was crying as we left the apartment because she didn't want to leave and yet two seconds later she was crying because she wanted Daddy. I still haven't figured out how to upload pictures from my phone to the blog. I'll see if I can do that later. The car was PACKED. There was barely room for Campbell!
Cam started Kindergarten on 9/12 AND the 5-drug anti-angiogenic Dana Farber protocol. All of the medication is taken orally, actually in pill form. Have I mentioned before that my 5 year old rocks? She can take PILLS! She is amazing. She can tell you not only the names of her meds, but she can identify them by appearance (actually rather sick). So far, she is doing very well. She has had clinic visits (to the oncologist here at home in NJ) each Tuesday. They are pleased with how she looks and her labs are good. Until they tell us otherwise, Cam can continue to go to school and dance classes, and pretty much be a normal 5 year old little girl.
This post is not nearly as eloquent as my last few. It's hard to be eloquent when you have to update everyone on over a month's worth of activity!
I do want to say, thank you for your support. And, I'd like to ask for one thing, before the month ends, could you please share Campbell's story with one new person? September is Childhood Cancer Awareness Month. If each of you tell one new person my sweet child's story, that is many more people thinking about childhood cancer, this increased awareness leads to increased funding for research which WILL someday find a CURE.
xoxo,
Robin
