Two Years - We've Made it Two Years!

Could I have been holding my breath for 24 months? Can I breathe today, August 5, two years after the hanging of the final bag of chemo? I have been known to say "If we can get to August 2012, we can breathe a bit easier" - as the general knowledge on Ewings Sarcoma states that most relapses and metastasis occur within the first two years after treatment.

It will take until December 2015 for Millie to be declared, in effect, "cured"- and there is always a real risk for leukemia to develop as a side-effect of the chemo drugs she was given.  Millie has scans in about a month, on September 11.  We have no reason to expect them to be anything but clear, but will report here the results.

I have heard from other moms that Millie is opening up to her friends and schoolmates about her experiences with cancer, doctors, and hospitalizations.  I hope that her willingness to talk allows her a way to examine her feelings and understand this medical history in a way that she can make sense of it all.  Perhaps she'll become comfortable enough, and even interested enough, to help other kids who are going through what she has experienced.  I've brought up the idea of visiting the 10th floor of Kaiser Foundation Hospital- where she spent so much time and knew so many amazing nurses- but she isn't quite ready to return. 

We haven't been to our physical therapist in many months- as we were told that the peroneal nerve that was damaged by the tumor-removing surgery had to heal on its own.  The repair process is unbelievably slow, but we are seeing improvement. Millie can now lift her four little toes on her right foot, and is able to lift the foot to a near horizontal plane. The big toe still hangs, making it difficult for her to get into certain shoes. The overall inability to flex her foot still causes her to over-compensate while walking and running.  March of 2013 will mark the three-year mark from the surgery, and we've been told this nerve can take three years to repair.  As I've said before, if all we have to worry about is a dropfoot, we'll take it over cancer any day!

Rounding First

It's hard to believe I've been this remiss about posting. I guess the (glorious) repetition of Millie's medical schedules make for difficulty in coming up with new ways of expressing the same story, the same sentiment. The schedules are glorious as they are generally without drama, without intervention or concern. Each 3 months we wake her in darkness to drive to the MRI under anesthesia- after which, each time, she wakes, grumpily sucks a popsicle, and eventually asks to be taken to Toys R Us for her "reward".

This last MRI, in February, was done in Oakland with Brian to great success. I was relieved not to be there, and all parties seemed to get along better without my fretting. We had been going to SF for these 10 quarters in a row, since December 2009. We all needed a change.

Millie is now starting softball with her team the Petaluma Pistols ("Fast and Fearless"). In her very first game, first time at bat, she hit a grounder and got on base. We all wish her leg was doing better, as her brace is bothering her to no end- but so far the improvement in her peronial nerve is incremental at best. She says her foot feels like it is "on fire" when in her brace. Sigh. I can only hope that this is a sign the nerve is awakening. We may start her in physical therapy again now that I have full medical coverage through my new job at Autodesk (yay!).

I am thrilled with my job, and also by the fact that I felt confident enough in Millie's health and prognosis to take a full time job. I had been freelancing since May of 2010- always aware that I might be back in the hospital at any moment. This confidence, this opportunity, and these suberb health benefits are such a blessing to our family and to me as a working mom. I feel a renewed sense of hope and security overall.

We are literally rounding first and heading towards 2nd base this year. As we look to August we look to our two-year anniversary of being "off treatment". This is an important milestone as our prognosis gets better if Millie makes it to this point with no relapse or metastasis.