Medical Updates

Anna had her one-year post treatment MRI scans on Monday afternoon.  Everything is continuing to look stable.  Hip, hip, hooray!  The farther we get from treatment, the safer we feel.

On Monday Anna also had a lumbar puncture (spinal tap).  Since her initial cancer was metastatic (it had spread via the cerebral spinal fluid throughout her central nervous system), Anna's CSF will be checked once a year to make sure that no cancer cells are present.  The CSF was negative for medulloblastoma cells.  Hip, hip, hooray!

Unfortunately, MRIs, anesthesia, and now lumbar punctures, are all part of our reality.  Anesthesia still does not sit well with Anna, and because the lumbar puncture happens in the operating room to ensure a sterile environment, Monday's anesthesia time was more than four hours.  The longer Anna is under, the harder the recovery is for her.  (We got to the hospital at noon and didn't get home until after 8 p.m.  Yuck!)

And we learned this week that one potential side effect of lumbar punctures is "spinal headaches".  When any amount of CSF is withdrawn from someone's body, it may take a few days for the delicate pressurized balance to be regained inside their central nervous system.  Until that balance is reached, Anna is tired and is having intermittent headaches.  Tylenol and lying down seem to help, but it's still no fun.

However, we will REJOICE that no cancer is present.  We will deal with the headaches (literal and figurative) of these procedures for the continued assurance that Anna is healthy.

A few weeks back Anna had a handful of other check-ups.  Here are those updates.

GI - Anna's digestive system is in a very stable place right now.  Her diet is made up of about 1/2 formula and 1/2 homemade purees, all through her g-tube.  She vomits very infrequently these days.  Most of her remaining medications are to assist with her GI function.

Hearing - Anna's hearing is still normal.  This fact, in itself, is a miracle.  The radiation and one of the chemotherapy drugs used during Anna's treatment are known to causing hearing loss in some cases.  At this point, the likelihood of Anna needing hearing aids is fairly low.

Vision - Anna's vision is continuing to improve, although very slowly.  The term the ophthalmologist used to describe Anna's ability to see one image at distances (instead of two) is "fragile".  The glasses help, but if she is tired or fatigued, or if the image moves quickly or the lighting/contrast is poor, she loses the ability to see one image.  During the summer, Anna rarely saw one image instead of two, so we consider this an improvement.  For up close tasks, such as with reading and writing, Anna's vision has improved more than it did at distance.  She is able to see one image more consistently with closer objects.

There's not much we can "do" to fix Anna's double vision, or speed up the healing process.  The muscles are very delicate and need time, practice, and patience, similar to Anna's tongue/mouth muscles.

We are almost done with this round of medical appointments.  Following the MRI, Anna always has a neuro-oncology appointment to check in with a half dozen or so doctors, nurse practitioners, and specialists.  We have that appointment the Monday before Thanksgiving.  A week after that there's an appointment to get casted for new AFOs (ankle braces) and then a check-in with the endocrine department in January.  Then ... we're off the radar until the next set of scans in another four months.

Please praise God that Anna's scans continue to be stable!