Updated: Dec 22, 2018
We're still digesting this devastating news. Information online is limited and very dismal. This is an extremely rare cancer - only about 30 kids diagnosed every year, CHOP sees about 5. I joined an ATRT Facebook support group and I've already gotten over a dozen responses of survivors, which gives me some hope. Odds are bad, but they can be beaten once in a while.
Here's what we know about treatment as of today. The first ideal step is surgery to remove as much of the tumor as possible. Everything I'm reading says this step is almost critical for even the possibility of beating this. Unfortunately her tumor is in a very bad spot. Being near the brain stem is not in itself an issue, but the oncologist today explained that the problem is it's partially wrapped around/connected to her throat. Ear/nose/throat specialists will need to be involved, and they are currently discussing with neurosurgery if this surgery is possible, or if it's just too risky. I believe we've been given a slot for this Friday, just to save the space, and a decision will be made this week if it will happen or not.
This week she's doing a barrage of tests to get a base-line for her body. EKGs, CT scan, blood work, etc. So immediately we're hoping that they CAN do the surgery and that her CT scan on Tuesday morning does NOT show this disease anywhere else. Once they have all this information, they will stage her cancer. Obviously I want it to not be stage 4.
Whether or not surgery is an option, she will start 6 rounds of intensive chemo. We've been warned that this is VERY intense chemo. So intense that they respect parents wishes if they decide not to do it at all (the doctor explained that in many cancers, treatment is so mild they would urge the parent to just do it). Chemo will mean 3-5 days inpatient at CHOP in Philly for the drugs delivered into a chest port she will have installed. And then "ideally" we are home for the rest of the month while the chemo works, her body recoups, and her white blood cell count is up for the next round the following month. In this intensive chemo, they don't wait for her to be fully recovered because they need to repeatedly strike the tumor fast and hard. They said "realistically" we will be spending much more time in the hospital because even a mild fever is a medical emergency. She will likely get infections (that could kill her if not treated), so while spending the majority of the month in between treatments at home is ideal, it's probably not going to be what happens every cycle. And then during that, once a week we will go to the King of Prussia campus for her labs just to check on all her vitals.
She will receive MRIs every few months to see how it's going. At 6 months she will get a status MRI to see what the 6 months of chemo has done, if anything. If she were older, at that time they would want to do radiation. But they are very hesitant at doing radiation on such a developing brain as serious, permanent cognitive side effects are likely. I've read many survivor stories where the child has lost their vision, ability to walk, ability to speak, etc. So they are going to avoid radiation at all costs, but that will be decided at her 6 month checkup, assuming she gets there.
In an older patient they would do the 6 months intense chemo, a few rounds of radiation, and then 6 months of lighter chemo as a clean up. In her case they might just go from intense chemo to lighter chemo and skip radiation.
So that's where we're at with everything. It will be a lonely 6 months trying to keep Julia away from all germs and infections. And it will be nerve wracking trying to keep hope and faith alive against such awful odds.