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!

"Off Treatment"

A good friend of ours, who shall remain nameless, recently injured himself rather dramatically while sabering a champagne bottle at a bachelor party weekend which Brian attended. This gave me pause to think about the danger of popping corks too enthusiastically.

However, we are celebrating Millie, and we have reached a milestone. Fourteen cycles of chemo have been completed. Millie is feeling strong, healthy, and ready to start school.

Millie left the hospital on Friday, the 6th of August, perky and ready to pick up her brother for a celebratory lunch at...you guessed it, Hiro's Japanese Restaurant. The two sat close together, giggling and playing all through lunch as I ordered a glass of wine and contemplated our journey. So much is in front of us, filled with opportunity and hope.

When we returned home we found the room had been completely filled with balloons by our dear friend Tricia- Millie and Griffin were shouting with surprise and joy.

By Tuesday we were back at Oakland in the Oncology Clinic for a transfusion. Millie was content to stay in the clinic all day watching movies, knowing that this should be the very last time she needs blood. The following Sunday she had her last injection of GCSF (the daily shot she gets in-between chemo visits).

Her mood has remained upbeat, and her brother and she have become inseparable. Her counts have dipped a couple of times as her body struggles to make blood on its own- but she has shown no fever or lethargy that would warrant another trip to the hospital.

We are considered "off treatment" now. We'll have a meeting with the oncology team next week about what this all means, but as we understand we will have scans every 3 months for the next year, moving to every 6 months until she is showing as no recurrence for 2 years after treatment. (One of the complexities of Ewings Sarcoma is the pesky frequency of relapse in the first 2 years.)

Today we spent the day at Kaiser in Santa Rosa having scans done - I will post about that as soon as I hear about the results.

Cancer is still a part of our every day existence, but we remain strong and confident as we watch Millie thrive. We are grateful for the continued love, support, and reminders from our friends, community (virtual and local), and family as we enter the next stage.

Hanging the final bag

It is 6:30 on Thursday, and our nurse Paulette (who is always chuckling to herself as she goes about her duties- I never quite catch what she is saying, but can't help but smile along) is hanging Millie's final dosage of Etoposide. We're on day 5 of our stay, each day punctuated by the 2 hours of chemo doses: Ifosphomide for the first hour, followed by Etoposide.

Millie is snuggled in her bed, as the air conditioning is blowing in here- and is sleepy from the benedryl given to her to combat nausea.

We've had a very good visit, and have stayed away from the decadron (antinausea steroid that causes "moodiness"). Each day we've had Physical Therapy here working on Millie's nerve and muscle weakness in her leg. The therapy uses a microcurrent stimulator to "wake up" the Peroneal Nerve path and try to reconnect the brain to the muscle area that has gone dormant after her surgery. Millie tried really hard to lift her foot up while the electricity was pulsing in two areas on her shin and ankle, and by the third day I could really see the foot move slightly.

The physical therapists are specially trained to work with kids- and have brought balls, bubbles, and singsong voices that soothe Millie and keep her interested. They have confirmed that the muscle is activating- so the nerve is doing its job- but the muscle and muscle memory is just so sleepy and weak, it may take many more months for her to regain proper movement.

For now, her foot rolls forward and hangs down on its own, so when she tries to put a shoe on the toes roll under and cannot be straightened. It's sandals for her this fall!

Today we made a big "thank you" sign for the nurses on the floor and hung it in the breakroom with a gift of some magazine subscriptions that will be delivered through the year to "Millie's Heroes" at Kaiser Foundation Hospital.

Her chemo is nearly done, and she is now awake and demanding my computer. She just said "I really want to get on your computer because I found an art game I really like to do. Besides, art is good for you". How can I argue?