Trying to Act Normal

Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.
John 14:27 KJV

We got a call Friday night, from Ian’s oncologist.

There is a “new area of concern” on the latest scan.

They spent the weekend getting more sets of radiologist and neurosurgeon eyes on the images, to work on some 2nd and 3rd opinions. We go in this afternoon to discuss what this means.

We spent the weekend trying to act normal, and we’re trying to have a normal start to our Monday, but, well, that’s easier said than done.

We covet your prayers, thank you, dear readers!

***UPDATED***

Our meeting with Ian’s oncologist didn’t fully answer our questions. More tests have been ordered, and we hope to have a better idea of what we’re dealing with on Thursday.

Here’s what we know-

There was an area on Ian’s spine that needed a 2nd look, but after seeing more images (thinner slices on the MRI), the radiologist is no longer worried about that area. He’s confident that what he was initially seeing on last Thursday’s MRI was just a blood vessel along his spine, and not anything concerning.

Unfortunately, it turns out that wasn’t the only area he was concerned about.

There is a new “area of concern” on the images of his brain. It’s much smaller than his original tumor, and a bit behind and lower than the original location. It picks up the contrast agent, or, “lights up”, as they say, which is always a concern. There is a chance that it is some bit of “post-operative changes”, like scar tissue, or even something like radiation necrosis, although it is not exactly at the original surgery site, and it’s pretty far out (timeline-wise) to pick up for the first time on a scan. (He’s had scans at least every 3 months through this entire process.)

Ian had recently noticed a significant diminishing of his sense of smell. Changes in taste & smell are not uncommon in people going through chemotherapy, but it’s usually the opposite effect. A loss of sense of smell can be from something as insignificant as nasal polyps, or something as serious as a tumor in the frontal lobe (where the olfactory center is), or even brain degeneration from something like radiation damage.

Ian was almost due for his next set of scans, so we bumped them up a bit, and he was sent to Abbott, rather than Minneapolis Children’s, because they have even more sophisticated equipment, both the machine (a 3 tesla mri vs. a 1.5 tesla mri) and the software, which can process the additional thinner slices needed to search for miniscule things going awry in the frontal lobe which might indicate what has happened to his sense of smell.

That’s how he ended up over at Abbott, on that machine.

The main radiologist at Abbott feels that what he’s seeing is leptomeningeal spread of Medulloblastoma.

The oncologist, while acknowledging that it is indeed possible, is not convinced that’s what we’re dealing with. The main reason being, that it’s highly unusual for recurrence to happen while a patient is currently on therapy. Relapses happen, but they are most often seen in the 1 to 2 years post-treatment, and with Medulloblastoma, they can happen years later, 5, 8, even 10 years later. Relapse, in the midst of therapy, in a radiated area (as opposed to a distant metastases), is extremely rare.

We’ve seen, so many times already, that rare happens.

Medulloblastoma is rare. Not waking up for 6 1/2 hours after surgery is rare. (The neurosurgeon’s Nurse Practitioner told us he gave her the scare of her life, she’d never seen a patient do that.) Posterior Fossa Syndrome is rare. Respiratory arrest after a baby dose of Morphine, requiring two doses of Narcan to reverse and giving everyone in that PICU room quite a scare, is rare. Extreme disabling neuropathy, requiring 5 weeks of in-patient hospitalization, including 10 days in PICU, cause by an extreme reaction to Vincristine, is rare.

I don’t want to fear the worst, and I certainly don’t want to become so jaded that I expect the worst, but one thing we’ve learned in the last 13 months is that rare happens.

Rare may happen, but there is still a chance that this isn’t relapse. No one can say definitively at this point.

He needs more tests…

A lumbar puncture (LP, or spinal tap) has been ordered for tomorrow (Wednesday), to check for any cancer cells, or “floaters”, in his CSF (cerebral spinal fluid). Any cancer cells there would be a clear indication that we are indeed dealing with a relapse. False positives don’t really happen, but false negatives do, so if there are no suspicious cells, that does not mean that he is in the clear, it will simply mean that while there may be cancerous cells in his CSF, there weren’t any collected during that minor sampling.

Ian will also be having yet another MRI tomorrow, this time on a different machine (at Minneapolis Children’s), and this time with added MRA & MRV, to look at this area pretty much every which way they can. It’s scheduled in the afternoon, which means that the radiologist’s reporting won’t be finished up until Thursday, which is when we expect the final results from the LP, so we should know much more on Thursday.

While recurrent Medulloblastoma has extremely dismal survival rates, if this is what we’re dealing with, it’s about the best-case scenario that could happen.

If it’s relapse, it was caught early.

The spot is small, it’s only one spot (leptomeningeal spread is often not caught until there are multiple nodules or a “sugar coating” of a large area of the spinal column or lining of the brain, all of which are pretty much inoperable), and it’s in a spot that’s easy to get to (not near or involving brain stem). Because of his low-risk classification in the beginning, he had low-dose radiation, and therefore has the option to do more radiation before reaching the threshold of what his brain and spine can handle. If it is relapse, he has more options than most patients facing recurrence of Medulloblastoma.

But we’re praying it’s not a relapse!!

And, in going with our trying-to-act-normal theme for the week, we’ve got homeschool co-op on the agenda for the afternoon, and a couple of soccer games tonight.

Less time to worry, right?

Casting all your care upon him; for he careth for you.
1 Peter 5:7 KJV

Tagged as: cancer, Ian, medulloblastoma