Survivorship

In the last post I said that we are not yet ready to claim cancer survivorship for Anna.  However, that doesn't mean we shouldn't learn about and prepare for what survivorship might mean.

In general, being a survivor of childhood cancer carries its own unique set of challenges.

I have two main sources of information for this post, besides our personal experience.  Most of my information comes from a book given to us by the Badger Childhood Cancer Network titled Educating the Child with Cancer.  This particular resource was extremely interesting and informational, both as a parent and as a teacher.  The good news from it is that we (our family, the school district, everyone else involved) has been doing a lot of things right for Anna in terms of her educational, social, and emotional well-being in the last year or so.  The bad news is that Anna, along with any other child who has gone through cancer treatments, is at risk for a whole host of problems.

My second source of information for this post on survivorship is the distance learning course that I began in January of 2014 and finished recently; the course was titled The Adolescent Brain.  Pretty good timing for that particular course, huh?  The class was also interesting and informational, both as a teacher, but even as the parent of someone who had brain cancer.  Through the class I was reminded that the human body, and the brain in particular, is complicated and mysterious.  If I hadn't believed in a Divine Creator before all of this happened, I would now.  Our bodies are certainly wonderfully and fearfully made.  But even with all of the advances in technology and science in recent years, so much is still unknown about how the body, and the brain, functions.

Now on to the topic at hand.


In putting the idea of survivorship in an understandable and meaningful way, I have two mental images that have worked for me.

The first has to do with putting out fires.  Imagine a kitchen fire in an apartment building.  If you want to save the building, you have to put out the fire.  But in the process of putting out the fire, the building is damaged.  Maybe axes were used to break down doors, or maybe the overspray of water caused damage in neighboring apartments.  Either way, once the fire is out, the building still has damage that needs to be dealt with.

My second image comes from an 80s commercial.  In it you see a plain egg in its shell and then the egg broken and in the frying pan.  The narrator says "This is your brain.  This is your brain on drugs.  Any questions?"  As parents, most of us know how sensitive our young children's bodies may be to different drugs.  We limit our kids' exposure to many medications, if possible, because we don't want to hinder their development in any way, be it physical, emotional, intellectual, or spiritual.

With that said, chemotherapy drugs are very effective on pediatric cancers.  Unfortunately, though, chemotherapy drugs are toxic drugs.  And they are often given at very high doses.  Radiation is even more effective, in part because it is more toxic and damaging.  And it can also be given at very high doses, especially for treatment of brain cancer and acute lymphoblastic leukemia (ALL), the most common type of leukemia.  The potential long-term side effects of pediatric cancer treatments are only now being studied in depth because, in all honesty, kids with cancer more than 30 years ago didn't have very high chances of survival.  Only now are many of these kids reaching adulthood.

Below is an information graphic regarding the long-term outcomes of childhood cancer patients.

People who have been treated for childhood cancer are followed closely for most of their lives in regards to the potential late effects of treatment.  These individuals are at risk for many complications, physical, social, emotional, and cognitive.  Some may not have any problems, others may have many.  Only time will tell.

Some of the possible late physical effects from treatment are strokes, seizures, general fatigue, muscle weakness, problems with coordination or pain/changes to other nerves outside the central nervous system.  Organs or organ systems that could be effected are vision, hearing, reproductive organs, the heart, the lungs, the kidneys, the bladder, the intestines, the spleen, the immune system, the thyroid and neuroendocrine system, and bone/body composition.  In addition, all children treated for cancer are at risk of developing secondary cancers.

Children who are treated for cancer, especially those treated with radiation to the brain, are also at risk for "cognitive late effects", which are defined as problems with thinking, learning, and remembering.

This is the legacy of treatment.

We were warned of all of these potential side effects when signing the consent-to-treat papers last year in February, but whenever we asked for specifics, no one could give us any answers ... because no one knew what the answers might be for Anna.  Just as each kid is different and each cancer experience is unique, the late effects are variable as well.  And, realistically, most parents are not going to deny their child treatment with the knowledge that he/she may have some lasting effects from the treatment.

So what does this all mean for Anna?  Good question.  Muscle weakness and problems with coordination are the first obvious side-effect from her treatments.  So far her organs and organ systems are doing okay, but often times those effects don't surface for years.  We already know her thyroid was damaged, but we don't know yet about other parts of her neuroendocrine system.

Without having had Anna go through specific neurological tests, we cannot say for certain where her cognitive difficulties lie.  However, knowing Anna like we do, we are pretty sure that her processing time, short-term memory, expressive language (putting her thoughts into words), and visual-spacial skills were all affected by the radiation.  These are all different from what they were in her before cancer.  Like I have said before, she is still a smart kid and very capable of learning.  However, she is definitely different from before cancer and she is going to continue to encounter all sorts of challenges because of her treatments that she would not have experienced otherwise.

But ... in all of the doom and gloom of my reading in the past few months, I have several hopeful ideas that shine through very brightly.

The first relates to Anna's "baseline" health and intelligence.  I used to cringe at the term "baseline" (or new baseline) when it was used in the hospital because it brought to mind all of the ways in which Anna had changed; now I understand better why it is used.  Prior to cancer, Anna was a very healthy and intelligent six year old.  Knocking her down a few notches in terms of her overall health and cognition would not be as tough to deal with as it might be for someone whose baseline health and cognition weren't as high.

The second deals with the maturation of the brain.  A person's brain is not fully mature until sometime in their twenties.  Most of our prime learning happens while we are young.  Given the right stimuli and environment, a child's brain has amazing potential.  At this point, no one on earth knows Anna's potential (or that of any other kid).  But even after our brains mature, we can still learn new things.  (How much have we learned in the last year alone?!?!) 

The third is the idea of neuroplasticity.  We can master different physical tasks throughout our lives, such as learning to play an instrument or learning to ski.  Adults can learn new skills, in spite of the saying "You can't teach an old dog new tricks."  However, these skills are more easily learned when we are young because our brains are still naturally forming many connections.  Anna is at a prime time for relearning many of the skills her body lost due to her treatments.

Another reason to be hopeful is that we recognize how much we don't yet know and we aren't afraid to ask questions and seek out more information.  Anna already has a wonderful, knowledgeable support system around her to help her make gains every day, but we will continue to learn more about how we can best help Anna.

Recently, my mom reminded me of another reason to be hopeful.  She said, "Awareness is half the battle."  Now that we can identify some of Anna's strengths and weaknesses (physical, mental, emotional), we can work to help her improve in those specific areas of weakness.  We plan on having Anna undergo some neurophsycological testing in the near future to help us understand more about her unique challenges.  Some of Anna's therapists have already provided us with effective strategies and techniques to help her.  The more we know, the more we can alter our household routines to help Anna (and the rest of our kids) make improvements with their whole bodies as well as their "core cognitive processes" (thinking, learning, and remembering).  It's actually pretty easy to incorporate certain activities and strategies into our daily lives, once we know what they are.

My final hopeful idea is actually an excerpt from the book about educating a child with cancer.

"Many research studies have recognized considerable differences in cognitive performance even among patients who were diagnosed at the same age, are the same gender and who received the same treatment for the same type of cancer.  One possible explanation is that the home, school, and community environments of some children allow them to compensate for core deficits and thus improve their performance and achievement in school."

Well, that give me additional motivation for continuing to push forward.  We will do whatever we can to help Anna compensate for whatever effects she experienced from her treatment and advocate as much as necessary to help her reach her highest potential.

Without treatments, Anna would no longer be with us.  However, her treatments caused damage and now we are learning to deal with the changes.