Safe and Warm

For months Millie has asked to go camping- from spring to summer to fall she was expecting to pack up the car and drive with friends to a spot in nature where marshmallows were toasted, beaches explored, trails hiked, and tents became castles. Of course we could never be too far from Kaiser Hospital all year, which meant no Tahoe trips, and no camping.

This past weekend we granted her wish- now far away from neutropenia danger, we were able to drive to Big Sur and meet our dear friends for our annual "Big Sur River Run 10K" and campout. A storm was expected, but the skies kept to a steady light drizzle on Friday and Saturday, even opening up to blue and sunshine on Saturday morning for our race. (The race was fun, as always, and I was so proud of my 9-year old godson for finishing the 10K in Tevas with about an 11 minute/mile time!)

Millie was happy to be with her friends and her godmother Annette, who drove up in her VW Westphalia. After the run we hiked a trail to the beach and enjoyed a dinner out. The clouds gathered and poured on us Saturday night, but we stayed relatively dry and warm in our tent. Griffin was sad to see us start to pack up in the downpour Sunday, as he was so happy and cozy in his sleeping bag reading Harry Potter as the rain tap-tap-tapped on the rainfly.

Millie seems healthy now, although she is complaining of a pain in her lower right shin (tibia). I am so skittish about any pain, I feel like calling the doctor to move up her scans. I am sure it is nothing, but anxiously await her scans on November 9 & 11. Once those come back clean she can have her broviac line removed.

She does seem like a different kid now, and we're loving getting to know her. We hear her singing to herself all the time in this quiet, high, singsong voice. She laughs more and runs more, is social and excited about friends, activities, and especially the theater classes she and her brother take at the local playhouse. She seems to be adjusting well at school, and professes to LOVE math. She wants to be a good student.

Here is a picture of Millie and Griffin with Butterscotch. You can see her eyebrows and eyelashes grown in- and of course that lovely soft fuzzy head of light brown hair.

Slow to Scribe

I am not sure if anyone has noticed, but I have been somewhat hesitant to update this blog with deep and personal feelings over the last month. I wonder if many might think that we've returned to normalcy and such musings are no longer a part of our lives.

Although life has taken a more steady turn for us, with the kids in school daily and no hospital visits, we are still very much in the thick of life with cancer. In reality, the reason I have been hesitant to pour it all out there is the result of nasty comments posted on the blog.

I realized suddenly, with the feeling of wind being knocked out of me, that this blog, our story, is out there for anyone to read. Why someone would think poorly of us, and speak ill of our travails this year is beyond me. I don't want to live in that world- yet that world and its trolls will come spilling through this huge open gate of the internet.

Surely I have been naive, and I am trying to find a good balance in telling our story while keeping ourselves protected.

I will at least give an update today. Millie had her 1-month check up with her oncologist and was found to be suffering no visible lasting effects from the chemo drugs. She was given an excellent report, but the oncologist would not call her "in remission" or any other positive terms of that nature. We have to wait another month for more scans and an MRI to make that call.

I am proud of my whole family as we push on and try for a normal routine after such a turbulent year. Somehow we are managing it- grasping to the hopeful signs and supporting each person in all the activities that fulfill us. The kids are taking piano lessons and going to theater classes at the local playhouse. I have started running again and am training for a half marathon in December. Brian and I are both becoming more involved in our community and finding time for friends and events.

Millie's hair is starting to grow back. She is beautiful. I have been showing her videos on YouTube of Sinead O'Connor- stunningly pretty and with such a powerful voice. Millie looks like a mini Sinead now- her scalp covered in maple colored peach fuzz. No curls yet.

The Happiest Place on Earth

We took an ambling, multi-point roadtrip to Southern California as a reward for completing chemotherapy. The highlight, to the children of course, was Disneyland. We stayed at the Disneyland hotel for 3 nights and visited the parks with the wonderful generosity of Brian's good friend Michael, who is an executive in production at Disneyland. Millie was able to meet countless princesses and fairies and Griffin spent hours exploring the newly themed Pirate Island (we still refer to this as Tom Sawyer's Island).

The trip was an opportunity to relax without thinking about medical care (except, of course, the broviac and dressing management) and to enjoy family time. Brian's mom came along with us and was a good sport about being caged with 2 wild kids in a minivan.

(Speaking of which, I am so proud to report that we drove the entire 900-ish miles with no electronic entertainment. The kids played imagination games, read, slept, and chatted the whole way)