This post has been a long time coming! Mason's follow-up MRI was yesterday...the one that would tell us whether or not the cancer really had come back.
THE SCAN WAS CLEAR!!
I was worried at first, because we went to clinic after the scan to get our results and have a checkup, and they directed us to a room that we've never been to before; one all the way across the hall of hospital! I sat in there almost in tears, absolutely certain that this was the special side of the hospital they took patients to when they had an especially serious comeback of cancer. And Mason wasn't helping, since he was screaming that I just needed to take him home NOW! He wasn't fully awake from the sleeping meds, and has never been so uncooperative and loudly screaming at a clinic appointment before; most of the staff's comments were somewhere along the line of, "we've never seen him like this" or "he's usually so happy!"
Anyway, Dr. Sato came in and said she had to see anther patient but she just wanted to let me know that the scan was clear, so I didn't sit there the whole time wondering. Phew!
The rest of the appointment was spent answering questions about Mason's behavior, since from now on, they are focused on diagnosing the late-effects of treatment. These are usually the worst effects of cancer treatment because they are pretty bad, and they can all manifest anywhere from months to years after treatment, and can sometimes even appear in adulthood.
Some of the most common late effects include:
- Learning disabilities (memory, attention, hand-eye coordination, delayed development, behavior problems)
- Thyroid problems
- Abnormal bone growth
- Hearing loss <---already manifested, but comparatively, not very badly!
- Vision problems <---already manifested
- Dental problems <---I'm pretty sure we'll find he has horrible teeth once we finally make it to the dentist.
- Heart problems
- Lung, kidney, or liver problems
- Delayed sexual development/fertility problems
- Pituitary gland problems: fatigue, listlessness, poor appetite, cold intolerance, and constipation
- Increased risk of future cancers (the types they can develop depends on the type they had to begin with)
I haven't given much thought to these, since the end of treatment always seemed so far away, but now that I'm thinking about them, I'm pretty worried. The risk factors for developing late-effects are significantly higher with each treatment, and Mason has had all but one of the treatments that are thought to be the most damaging:
- Chemo - some drugs pose a higher risk than others.
- Surgery - higher risk if surgery to the brain, and if younger at the time of surgery. Higher risk with each surgery.
- Radiation - higher risk with radiation to the brain and spinal areas, and an even higher risk the younger one is when exposed to radiation. Higher risk with higher doses (and thanks to the second surgery, Mason didn't have to have the high dose of radiation!).
So far, he has been what I'll call lucky. Only his eyesight has significantly suffered, and things like his balance and walking have already begun to improve. I have noticed that he hasn't grown more than a few centimeters since he began treatment, though. This is big for Mason, because he's always been above and beyond the highest lines on the growth charts. He still is, but he's no longer growing at the huge pace that he was. Dr. Bruggers explained that they usually find that when this happens, it takes at least a year for the body to begin to grow again. After that, it's common to see big growth spurts, where the body catches up to where the child should have been, and then continues on the same path of growth. If this doesn't begin to happen, then they'll look into growth hormones (which I don't want Mason to have), but it will be at least a year before they even consider that.
This appointment felt like a huge step. We learned that Mason no longer needs to take his Septra; the last remaining medicine he was taking. We also learned that from now on, most medical concerns can be handled by his pediatrician, and we no longer need to go straight to the ER if he has a fever. It's a little scary, and feels like we're on shaky ground, but at the same time, we are finally done! I know I keep saying that, but this time it really feels like it. We're REALLY done! The only reason we have to visit Primary's from now on, is for followup visits.
Oh, and for one more surgery which will happen within the next month, where Mason will have his PORT TAKEN OUT! He is extremely excited for that one.
Did I mention that we're DONE? :)