Dr. Kieran's Comments

Dr. Kieran stopped by this evening.  He was in a talkative mood tonight and shared a lot of information.  It's interesting to learn each doctor's bedside manner - he has a slightly different approach than Dr. Chi (our primary).  The bullet points from our conversation are as follows:

• Up until DF started this treatment program there were only 5 known ATRT survivors 
• Most of the ATRT patients DF sees are under the age of three
• Though historic ATRT survival is ~10%, on the DF protocol, survival is ~50%
• Across all cancer treatments available at DF, the ATRT treatment is without question the most severe (~100 times more severe than typical leukemia treatment)
• Treatment involves all options available (surgery, chemotherapy, and radiation)
• Severity of treatment is measured in the number of different chemotherapy drugs used, the dosages of each drug, and the length of time the patient is allowed to recover between chemotherapy treatments
• Once treatment starts, the cancer immediately starts looking for a way to survive it - if it builds up an immunity to the chemotherapy before we've killed every last cancer cell, then it wins - there are essentially no other options available to us
• With ATRT it's a race against time - they essentially they hit the patient with chemotherapy as hard and as often as they can.  As soon as the patient has recovered from the first round of chemotherapy the next round starts - we can't give the cancer any extra time
• They don't know why some ATRT tumors respond to treatment and others don't
• The fact that Emmett's tumor grew back in 10 days is not good, but hopefully means it will have a positive response to chemotherapy
• All of DF's long-term survivors have been disease free at 5 months into treatment (after 5 months the intense treatment is over and maintenance chemotherapy is continued for the next 7 months).  At 5 months, we'll have a good idea of where this is going

Though Dr. Kieran didn't discuss radiation during our conversation today, we're hopeful the fact that the tumor is outside the brain allowing focal radiation treatment improves his chances.  We're also holding onto the fact that the one spinal ATRT patient they've treated survived.  They also had a patient with an ATRT on his brachial plexus that also fared well.

We're also holding onto the fact that we've seen miracles already and expect more.

It's hard to see Emmett so sick.  He's had a fever for three days now.  He hasn't walked since Tuesday.  He hasn't eaten anything since Tuesday.  He's a poor, sickly boy right now.  He sleeps face down, and we only know he's awake when we see that his eyes open.  We did get a half smile out of him once today, but that was it.  We pray he doesn't remembers these days.

It was nice to get him outside in the garden for an hour today.  The flowers are blooming, the leaves are coming out, and it was sunny and warm and beautiful (perfect opening day for the Red Sox down the street).  The garden is next to a small medical library which is my new favorite spot to work remotely from the hospital.  The library has a large window that faces the garden and the highlight of my day was watching Katy and Emmett continue to enjoy the garden after I had returned to work in the library.  Emmett even recognized me a few times through the window!  Such a beautiful, wonderful day.  I hope we get more when Emmett is feeling better!