Neuropsychological testing

We have already grieved many aspects of "former" Anna.  Physical abilities, overall health, friendships, family activity options, and eating, to name a few.  Having Anna undergo neuropsychological testing put labels on what we, as parents, have already observed.  However, seeing the cold, hard facts, as well as specific diagnoses, still brings on grief.  I am sure that we will have many more opportunities to grieve in the future as well.

The testing results did not bring many surprises.  Overall, Anna is a relatively intelligent kid who scored slightly above average on many aspects of her cognition.  She is not (and never was) a genius, but she is a good thinker.  She has definite strengths in her verbal and language abilities as well as her use of logic and problem solving skills.

Anna's major weakness observed at this time is "slow processing speed".  She also demonstrated deficits in phonics, but at this point no one knows if this is from a learning disability or because she missed out on about a year of classroom literacy instruction.  In addition, she has a decreased memory capacity.  Once the information gets to her memory, it's locked in there tightly, but she can only get so much in at a time.

It has taken us a few weeks to process the diagnosis of "slow processing speed".  (Taking time to process slow processing ... ha!)  One of the potential side effects of radiation to the brain is decreasing the speed that messages are sent throughout the nervous system.  The messages still get there, but the speed is lower than what it would have been prior to radiation.  More radiation = more damage = slower speed.

Anna's cerebellum received the most radiation by far, both in terms of the number of treatments as well as the strength of each dosage, since that was the location of the tumor.  Almost all muscular related messages are routed through this part of the brain.  Thus, any messages that the "thinking" part of Anna's brain sends, get slowed down as they pass through the cerebellum.  For anyone who has watched Anna write her name in the past year, they can testify to the fact that she does this s-l-o-w-l-y.  The neurologist described Anna's motor skills as slow, but careful.

In all honesty, processing speed was probably never one of Anna's strengths.  She was always a slow, but careful worker.  Never to the point of needing special intervention, however.  Now Anna is significantly slower.

In addition to the radiation to the cerebellum, Anna also received high dosages of radiation to her whole brain and spinal cord, since the cancer had spread everywhere in her central nervous system.  When motor skills are taken out of the equation, Anna's brain still sends messages more slowly than it would have without the radiation treatment.  Messages also travel more slowly than they would in a typically developing 8-year-old's brain.  Such is the legacy of radiation.

Sigh.  Living with Anna for the past year and a half, we knew this already.  Long ago we adjusted our life to accommodate the extra time it takes Anna to do just about anything.  However, as when Anna was evaluated at her new therapy location and her gross motor skills came back in the "less than 6 months old" category, putting specific numbers on just how slow Anna can be was difficult for us to take.

Although there isn't a magic medication or treatment to increase processing speed, we have seen steady improvements in Anna's speed, strength, coordination, and stamina, especially in the last 3 or 4 months.  We will continue to work on a multiple leveled approach, helping Anna make improvements, as well as adjusting our lifestyle.  For example, we recently downloaded a dictation app for the ipads so that Anna (and Kate) can practice their writing skills without having to actually, physically write so many words down.  But we also plan for extra time for most simple activities.

Now we know the words behind why we have prayed so often for patience :)

What makes me most sad about this whole thing is that others often assume Anna isn't as smart as she truly is when they interact with her for short periods of time.  Even in comfortable situations, it takes Anna longer to get her words out (slow oral motor speed).  In new, stimulating situations, not only is her brain struggling to get those muscles to move, but is is also trying to sort out all of the sensory input.

On to the good news from the neuropsychological testing.

Many aspects of Anna's treatments and medications (initial surgery, radiation, chemo, high-potency steroids, etc.) put her at risk for developing problems with her executive functioning skills.  Disorganization, difficulty with multitasking, inability to follow through, lack of inhibitory control (a.k.a. impulsivity), distractability ... all signs and symptoms of ADD.

As of now, Anna shows absolutely no signs of difficulty in these skills.  In comparison to the neurologist's demeanor when she shared with us the "slow processing speed" diagnosis, she was positively upbeat when sharing the results of Anna's executive functioning skills.

We have learned so much in the last year and a half.  And I'm sure there is so much more to learn.  We will continue to go forward with the knowledge that we have and do our best to enjoy life.

Time for Prayers

Thanksgiving
Please give thanks that the timing of the testing happened when it did, instead of at the end of the summer.
Please give thanks for the incredible life-long cancer center available to us here in Madison; we have never had to travel far for any of Anna's medical care.
Please thank God for all of the progress that Anna continues to make, in all of her skills.  Those in her life who have experience in physical and cognitive rehab continue to make note of her great progress.

Requests
Please pray for patience for us, as you have all along.
Please pray for wisdom for us, as we work to educate Anna's new educational team about how to best help her learn this coming year.
Please pray for wisdom for us, as we work to find various adaptive strategies to help Anna reach her highest potential.
Please pray for Anna's peers, teachers, and soon-to-be classmates, that they find the time and patience to get to know the Anna who was simply slowed down by her treatments.

Thanks, as always, for your support and prayers.