This is a cross-post. I'm sure we'll both have plenty more, individually, to say on the subject.
You could click this link, or you could just read this:
This afternoon, we had a nice long sit-down with The Boy's oncologist to go over all of the components of our next new normal.
He reiterated that the doctor who had conducted the studies with the original regimens that The Boy had been on--both the initial DD4A regimen and the Stratum-C relapse protocol--saw no major differences among kids who completed only some of the protocol vs those who completed more vs those who were able to finish. What The Boy's doc told us this time that didn't come up last time is that this same doctor is now studying late effects and follow-up, so he is REALLY the guy who confirms that we're doing the right thing by stopping treatment.
In terms of other cancers, or the same type of cancer: If The Boy were to suffer a Wilms relapse, they would have an additional plan of action for him. I don't know what it is, but the doctor said that there is a next step in place. We'd be even in less of a bind than we would have been a few months ago had the spot on his liver actually been cancer. As for secondary malignancies from either the chemo drugs or the radiation, the doctor reassured us that The Boy has only a slightly greater chance than the general population of experiencing that. It isn't as though we are waiting for it, knowing that it will happen. He said that it probably won't.
The immediate follow-up items on the agenda are as follows: Pentamidine this week (that is the IV antibiotic that he gets every month or so). Schedule a CT Scan for this week or next, depending on when they can fit us in. Get an appointment at the renal clinic. Probably do another GFR.
The kidney function is still a very interesting piece. The next GFR could reveal that his function has gone down. Or up. Or stayed about the same. We wouldn't be surprised by any of those things. We have to have The Boy followed by that team very closely, as those issues have not magically disappeared.
More long range follow-up items: The Boy will get a second CT scan about 3 months after the first. Following that, he will have ultrasounds and probably X-rays for his followup scans and a CT only if something looks suspicious. The deal with the CT scan is that it exposes the patient to radiation, much more than X-rays, and there have recently been rumblings about not wanting to expose children to too much of this if possible, so I'm sure that's why we're going to ultrasound so soon.
He will still see the oncologist about every month for awhile. The port will stay in through his CT scan, and if the scan is clear, the port will be removed. Until the port is removed, pretty much every medical issue that The Boy may have will still go through oncology. We'll start to call his primary care physician for things as The Boy gets further away from the port removal.
As for The Boy's vaccinations, and Meatball's as well--we wait. The ones that Meatball has already gotten were not live virus vaccines. The ones coming up are. And The Boy has never had those vaccines. Likely, the kids will be on the same vaccine schedule, as they currently have had the same ones.
Medications--we're down to Enalapril and Sodium Bicarbonate. We don't give Zofran anymore (although I will give it before he gets Pentamidine because I've heard that it makes the kids nauseous), and he never needs Isradipine. We just took Pepcid off the list, although I don't want to get rid of it right away. My mother said that her acid problems got worse after chemo and she still takes something for it, so I'd like to keep the Pepcid around should The Boy need it.
He is allowed to swim. He can eat whatever he wants (although more caution should be taken with sodium and potassium). He can play with kids. In the Fall, we could both go to work. Not sure if we both will, at least not full-time, particularly if we don't get anything good.
We have to get used to saying that The Boy HAD cancer. We're hoping that he doesn't have it anymore. He is OFF treatment.