I just wanted to expand on Christy’s expression of anger yesterday.  I feel it too, in waves.  We are not angry at people; we are angry at the obscene injustice of this situation.

Hours after making the heartwrenching decision to stay at St. Jude and accept their treatment recommendation, we received the final pathology report from CHOA.  It incorporated the test results from UPMC, a top-notch lab, which characterized Alexander’s tumor as “MYC gain” instead of “MYC amplification.”  That is potentially a significant difference: MYC amplification puts his cancer in a higher risk category than MYC gain.  MYC gain = lower risk = better case for a lower dose of radiation.  Different tests yielded these different results, but we hoped that the UPMC test would win out.  Maybe this would be the good break we’ve been waiting for.

We met with the neuropsychologist yesterday.  She assured us that the discrepancy between the two tests would be discussed at “tumor board,” a meeting of the care team to discuss the new cases.  We dared to hope that the highest dose of radiation could yet be avoided.

Just as we arrived at the airport, our hopes were dashed.  Dr. Hanzlik called to tell us that the team was unanimous in their assessment of his risk category.  The FISH test St. Jude conducted is more representative of the entire tumor than the NGS test UPMC did, and that fact, in combination with the presence of at least some large cell/anaplastic characteristics, places him firmly in the high-risk category.  Getting that news was like getting punched in the gut all over again.

I had prepared myself for that to be the outcome, but it hit Christy especially hard.  But Dr. Hanzlik gave us one reassuring thought: most of the kids with tumors like Alexander’s (Group 3, LCA, MYC amplification) also present with metastatic disease.  We can take comfort in knowing that we were vigilant and persistent and so caught this before it could spread widely.  The odds are not good with this disease, but Alexander’s odds are better than most that get dealt this horrible hand.