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.