Yesterday Avery had a 1:00pm clinic appointment at Lurie’s. These are usually early, but we were also meeting with our oncology fellow and oncologist to talk about next steps. We were very anxious about this meeting. Although Avery just wrapped up a long ~8-month chemotherapy stretch we still had no idea what the next month or months would look like.

Last year on Tuesday September 19th we had a call with these same two doctors to go over Avery’s first lumbar puncture results from the day prior. I still remember how terrible that morning was, sitting at my work desk at home with Heather when the virtual meeting started up and their demeanor told us all we needed to know. They shared that the results were not in our favor. That her cerebrospinal fluid had cancerous cells in it, but that they were still going to fight for Avery. They told us Avery would be starting chemo instead of radiation because the radiation she would now need was high-dose radiation and that they wanted her to develop as much as possible before hitting her tiny body with it. “If they’re 1, we’d prefer to hold off until they’re 2…if they’re 4, we’d prefer to hold off until they’re 5, etc. We’d rather wait until Avery is 4 or 4.5.” We asked if treatment went well would high-dose radiation be needed? They told us to expect radiation.

We got to Lurie’s early and made our way up to the 18th floor where the infusion center is. Avery had vitals taken and they brought us to our room which was Avery’s favorite room because it has a view of the city facing south and most others are just four walls. A little while after they drew blood our oncology fellow, Dr. Shawn, came in to say hi and chat for a bit before him and Dr. Lenzen would come back. To our surprise he got right into it and told us after the team met and reviewed Avery’s case that they decided not to recommend radiation anymore based on positive factors they are seeing with Avery’s treatment. Wow, we were stunned! The outcomes of doing radiation now vs. not doing it are the same (i.e., chance of recurrence isn’t 0 just because you did radiation right after). Dr. Lenzen explained that they have to set the expectations early when something may be needed and would rather pull something bad than add it late. That makes sense.

What do you mean by positive factors?

• Comparison of original MRIs and lumbar puncture results to December’s MRIs (clear), January’s lumbar puncture (clear), and last week’s MRIs (clear). All showing she responded very well to treatment.
• They explained how medulloblastoma is divided into 4 molecular subgroups based on tumor cell features, which we had a general idea of from early on.
  • The molecular testing they did on her tumor biology did not have worrisome markers.
  • Avery had group 4 medulloblastoma, which we knew.
  • They are not ranked 1-4 (e.g., 4 being worst), which we didn’t know.
  • They said group 4 is “not one of the bad bad actors, it’s kind of bland…middle of the road.”
  • They said group 3 is a bad actor and more treatment resistant.
  • Not sure about the other 2 but we didn’t go there.

Regarding recurrence, stats are limited. Avery technically had infant medulloblastoma which is not common. You’re usually older with this diagnosis (5 and up). So, they don’t have a large amount of data based on age and diagnosis. Plus, they used to combine data on group 3 and group 4 medulloblastoma together which isn’t great data to work with. They said they can’t say this will never come back. “It could be in the first year…there are some patients with group 4 where recurrence happens between years 1 and 2 post treatment.” They added, “We want her to do well and anticipate her to do well. In the off chance we see something come back we have radiation to use then. Radiation later can be more effective too.”

We again asked if they had any idea how long she had her tumor for and Dr. Lenzen said it wasn’t there for a year. It was not a slow-growing type of tumor.

Cautiously optimistic.

May is brain tumor awareness month and there was a photographer on the floor taking pictures of staff and patients. Before we left Dr. Lenzen came back and asked if Avery wanted to take a picture with her. Avery said no! I think she was just overwhelmed with all the action since there were people in the hall taking pictures. Her surgeon, Dr. DiPatri, also surprised us and stopped in. Avery was so excited to see him. She showed him how she can walk and walked to him, and they danced for a second and he twirled her around. I told him Avery and I were “scar buddies” and showed him my tattoo to match his work. She let me take a picture of them together (pic attached). We asked her if they could take a picture of her with both Dr. DiPatri and Dr. Lenzen but again she said no. What a bummer. That would have been a special photo.

So, what’s next?

• Avery will have her central line removed next week!
  • Yesterday was her last dressing change! Last custom tape art by nurse Ellory (pic attached).
  • She can take normal baths and splash and do whatever without worry of getting her Press’NSeal-wrapped line wet.
• She will also have her post-treatment lumbar puncture at the same time as line removal.
  • They had told us a few times they aren’t worried about the LP and expect it to be clear.
• She will be monitored frequently for the next 5 years.
  • Next one slated for the first week of August.
  • She will have MRIs every 3 months for the next 2 years.
  • Then it might shift to something like every 4 months for a year then 6 months for 2 years then annually.
• We will no longer have clinic visits!
  • We will have monthly video check-ins with Dr. Lenzen between MRIs for some time.
• She no longer has to be on a low-bacteria diet.
  • She devoured strawberries and blueberries all afternoon today (pic attached).
• Soon Avery will be off the daily medications that she has had to take since the beginning of September.
• She will have annual hearing tests since the chemo can still affect high-frequency hearing afterwards.
• She will continue physical and occupational therapy for a while and probably shift to 3 days a week.
• She can go back to school in the fall as long as she is all good.
• As long as her LP is clear she will be considered in remission, and we’ll go back on May 22^nd to ring the bell!