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)

Back to School

Millie went to school for 5 full days last week! We had thought that we would ease into a part-time schedule for her in the first months of school, as we expected that she would get quite worn out easily. Instead, she has been cheerful and eager to be in school each day.

As I mentioned in a previous post, she has expressed small frustrations as a result of being asked multiple times a day about her "tubes", her brace, and her hat. She came up with a solution on her own, and brought in on Friday her stuffed broviac monkey (see post and pix from January) and a doctor's kit of supplies to teach the class herself about broviac care. I wish I could have been a fly on the wall! I am so very proud of her. She also is going to bring in her cast and her bone-scan picture to share and discuss her surgery.

The above picture was taken during a video-interview with me and the kids for a documentary on the Carousel Fund. The kids dragged those huge bears (gifts from Arnie and Susan of the CF) outside to use as props for the video.

We leave on Friday for our trip to Southern California!

The Off Treatment Meeting

Brian and I drove to Oakland today for our official "off-treatment" meeting with our oncologist and nurse case worker.

We were sat in the same small conference room where we had our first meeting back on December 23, and like that time, we received a binder of information.

Our oncologist, Dr. Sharma, reiterated how well Millie did throughout treatment.

• Her cancer had not metasticized
• Her cancer reacted to the chemotherapy
• Her platelets rebounded consistently to keep to the 2x a month aggressive chemo schedule.
• She was only hospitalized one time for neutropenia.
• She was able to not only keep her leg, but did not need a bone graft or prosthetic.
• She did not receive radiation.
• Her heart, liver, bladder, and kidneys showed no signs of distress from the toxic chemo drugs.

All these things set her apart from so many cancer patients, and these things inch her "event-free" survival prognosis higher. The "event free" (no relapse or secondary cancers) long term survival range for non-metastic Ewings Sarcoma is 55-70%. Her prognosis is up at the 70% mark.

The meeting was called to go over some of the long-term effects of chemotherapy and to discuss the plan for the coming months and years. We discussed the possibility of secondary cancers (two of the chemo drugs are known to cause lymphoma and leukemia), the possibility of delayed or limited fertility, organ damage, and other fun things!

We also spent a long time discussing Millie's drop foot, and received a promise that her recent MRI will be reviewed by a pediatric neurologist to look at the nerve and muscle pathways that affect dropfoot.

One area on which we did not spend a lot of time is emotional health- as we are happy to report that Millie is doing very well at home and at school. She was supposed to go in to the clinic for an infusion of pentamadine while Brian and I had this meeting- but she preferred to be at school. She is making new friends and feeling pretty comfortable in class. (Although she says she is tired of explaining to classmates about her broviac tubes, her brace, and her hair- I may address this with her teacher to find the best way to answer the students' questions while respecting Millie.)

I must write that although this is a wonderful milestone, and we are thrilled to be off chemotherapy, a little part of me is scared. I almost wish to keep on chemo so I know no cancer cells will gather into tumors. I feel like we are floating free and worry about unseen cells floating free in Millie. I am so eager for the next scans in 3 months - so eager for the news that no cancer cells flourished in these months without chemo. This will be the greatest Christmas present imaginable. And, although I worry, I know this will be true.

This photo, along with many other beautiful shots of Millie, was taken by our good friend Stephan last weekend in Petaluma.

Meet Butterscotch

Doesn't every chemo warrior deserve a kitten? Meet the newest member of our family- currently being called "Maxwell Butterscotch". A friend of Brian's cat had kittens; who were we to refuse?

The jury is still out on Elmo's (our 17 year old cat) acceptance of this new mewing little life in our house.

I'd write more, but Griffin is next to me reading this and said "Mom, don't give away too much".

NED (No Evidence of Disease)

A quick update to let you know that the scans taken today came back as negative! She had a CT Scan of her neck and chest (the likely place for a metastasis) and a full body bone scan (including her brain).

I love this picture from the computer in the nuclear medicine room- can you see the difference in the fibula on the right?

In three months we'll have another set- and we hope for no medical intervention in the mean time. Next steps- school next week, and Disneyland in 3 weeks!