Gloria in Excelsis Deo: Results After Two Rounds of Chemotherapy

Today, Chris and I met with the oncologist to learn the results of Thomas's CT and MIBG scans (done Friday).

After two rounds of chemotherapy (six weeks), the tumor "has not really shrunk." The measurements are the same as before. It is chilling to look at the scans because the tumor pushes up against the front wall of his abdomen and all the way to the wall of his back.

While this is not the news we had hoped for, it is not unexpected. The oncologist had said from the beginning that Thomas would likely need at least four rounds of chemotherapy, maybe six or eight.

The tumor "does not necessarily need to shrink, but it definitely needs to die." The scans show that some of the tumor has died, but the part encasing the arteries is very much alive. That part is most important to die because dead cancer cells peel off the artery well, but living cells grip and tear. The oncologist and surgeon have told us on what I think is now four occasions that the arteries being nicked or torn would be "incompatible with life."

The oncologist today said surgery done now "would be incredibly morbid."

The doctor did say that it would be normal or common that these next two cycles would cause a lot more tumor response as the blood flow is cut off to it. If not, we consider a higher dose chemo. With neuroblastoma, they do want to remove 100% of the tumor during surgery because if they leave some behind, they use localized radiation, which results in its own permanent complications.

Today Thomas completed the first of three days of Chemotherapy Round #3. The good news is that his nausea and vomiting over six weeks have been minimal--all things considered and with being on numerous overlapping anti-emetics--and his eating and weight are strong. Also, he suffers no pain from his tumor, which makes such a difference.

We are navigating through our first complication. At each of the three chemo cycles, Thomas has had a histamine reaction to something mysterious, we think the chlorohexadine used to clean his skin before accessing his port. The first two times, it resulted in skin itching and sneezing for a few short minutes. Today, the third time, it resulted in skin itching, then sneezing compulsively every few seconds (50-75 sneezes?), eyes swelling up and watering, and breaking out in hives on his back and face. The team gave him Benadryl, which calmed the histamine reaction for one hour, and then all the symptoms flared again suddenly and big, so they gave him a second dose. He's on continued Benadryl here at home, too. A histamine reaction to chlorohexadine is rare, but well-known enough that it's been seen for 50 years and the FDA has released a warning about it. The problem is that a histamine reaction will get worse with each exposure and lead to anaphylactic shock. The team will now be avoiding chlorohexadine and trying Betadine to see if the reaction does not reoccur. Anyway, I'm a pretty nervous mama about it for obvious reasons.

Chris was a knight in shining armor, as usual, and volunteered to come pick us up (his having gone home to work) instead of my driving home so I could sit in back with Thomas just in case he had another reaction.

So, that's the update. This mama's got to get to bed before two more days of chemo at the hospital but I know a lot of people are praying for us, so I wanted to let you all know the latest.