Huge News
For months we’d been hearing that COG – the body that designs the standard treatment protocols that Wes’ treatment follows – was rolling out a shortened protocol for Standard Risk boys. Under the previous protocols, most boys get an extra year of Maintenance compared to girls with the same diagnosis, but COG has recently determined that this no longer has any benefit so hospitals have been gradually adapting by cutting a year off the end of treatment.
Wes, however, is classified as High Risk and none of the families we know, in person or through the online support groups, had seen any protocol change for that diagnosis, so we barely even discussed this change with each other. We were fully prepared to begin Maintenance this week, and for it to end in February of 2022, as planned for the past 8 months.
Last week when Stephanie took Wes in for labs to see when he would be ready to start Maintenance, Stephanie was chatting with one of our favorite Nurse Practitioners mention and made a sardonic comment about only having to do this for three more years. The NP responded, almost casually, that they were actually going to cut a year from Wes’ roadmap. This seemed unlikely, but the NP seemed to know what she was talking about, and isn’t one to be completely insensitive (it would be a horrible thing to say if she was wrong).
So we sat on it over the weekend. Wes was scheduled to begin Maintenance yesterday, so one way or another we’d find out the truth when we reviewed his roadmap with the team as this next phase began. We told a few close family members, but cautioned that it might not be true. We didn’t want to get our hopes up.
If you’ve read this far you can put it together – the change is happening, and Wes will be EOT (End of Treatment) a full year ahead of plan, now in February of 2021. He’ll be 5, instead of 6; this treatment will have lasted slightly less than half of his life, not more. He may get to start first grade on time. Maybe we can travel. Big, big news. It’s a prison sentence reduction for all of us.
This all assumes Maintenance goes well, but what else can we assume? While Maintenance sounds relaxed, it’s still fairly active treatment, and for a very extended period of time. From now until 2021, Wes will still have:
- Daily oral chemo (mercaptopurine) for the duration.
- One sedated lumbar puncture (spinal tap) with intrathecal chemo each month
- One IV infusion chemo per month
- A weeklong steroid pulse following each spinal
- Four chemo pills on Wednesdays of every week that he doesn’t have a spinal tap
- Antibiotics every Monday and Tuesday
- Weekly Physical Therapy and Occupational Therapy
As intense as this is, it’s a cakewalk compared to what he’s been through, and it means we might even be able to get out of town now and then as we aren’t tied to multiple clinic/hospital appointments each week. Plus, it’s going to end a full year ahead of what we’ve prepared for!
