Not The End Of The cancer Experience...

Caution – long and difficult.  Please read in conjunction with the previous post about Sunriver to understand the “ying and the yang” of life right now.

“The end of treatment is to be celebrated for a childhood cancer patient, but it is not the end of the cancer experience.  In fact, many effects do not appear until long after treatment has ended.”  Taken from Educating the Child with cancer by Nancy Keen and the Candlelighters Childhood cancer Foundation.

This quote is a summary of where I have been this past week.  On top of all of the research from many sources, we were at a seminar/support meeting on Wednesday evening regarding the developmental issues your child will face as they grow up post-cancer.  The seminar itself was not exactly on point for us but it was one more piece in the information I have been trying to absorb this week.  

Obviously I take a particular interest in the legal side of things including what accommodations are required, what protections exist under Federal and State laws etc.  That part is not hard for me to understand.  What is more difficult, however, is learning the practical side of what Rebekah is facing in the next 15 years or so.  This whole process has to be taken one step at a time.  There is no way we could have absorbed these long term effects at the beginning of our treatment.  There is no way we could have absorbed them during the radiation.  And there is no way that we wanted to squelch our joy at the end of Rebekah’s treatment.  

Even though would could not have dealt with it before now, it is extremely frustrating that we did not know and were never really told anything more than “She could have some developmental issues.”  Nor were we told that it is something we should look into; that is what makes me really angry.  Given the drugs Rebekah has received and her radiation dosages to her head, the research out there tells us that “could” is not really the appropriate word.  “Will” is much more appropriate.

As any parent would, we have been and still are focused on Rebekah’s survival.  As we look toward the long term we had been thinking about the scans, the long term survivability rates and the surgeries that she is up against.  It is only now that we are having to add to this the cognitive and developmental delays and the special needs that are imminent.  There are some very promising programs and therapies out there to help with some of these issues but they are most definitely not covered by insurance.  And even more so, the time necessary to have her partake in these is immense.  I do not know how to describe feelings right now except to say that I feel “hit” all over again.

Because of Rebekah’s CP and other neurological issues pre-cancer we had just began familiarizing ourselves with the Special Education services that are out there.  We have been very lucky to have a great Educational Service District and had not run into any difficulties in our brief start with them.  What I am learning now, however, is that our introduction to them was just that, an introduction to an entire “educational career” of needs and accommodations.  

No, we have not lost hope.  We serve an awesome God who has miraculously carried us this far.  But we are starting to feel like the rug has been taken out from under our feet again.  I am really really glad to have had this weekend away to absorb this.  It was unplanned (by us) but very much needed.  I cannot believe that we had even started to question the ability to return to “normal.”