The Waiting Place

Greg was reading Oh the Places You'll Go by Dr. Seuss to Cam the other night.  As I listened, he got to the pages about the Waiting Place.  It made me think about how Cam has been in the Waiting Place since the day she was conceived.  She has never been an easy child.  But then again, nothing worthwhile ever is.  She was very carefully planned and constructed with medical help, including antibiotics for Mom and 8 months, yes that's right, of bedrest.  And yet, against the odds then, she thrived.  Not just survived, but truly thrived.  She was born two weeks early at 9 lbs 15 oz.  Yep.  My little trouble-maker started defying the odds even before she was born.

Last week we received the unfortunate news that Campbell has grown another tumor on her spine, 4 vertebrae above the radiation field from this summer.  It is fairly small, measuring 1 cm.  Without a doubt, it is not visible on the July scan.  There is some debate whether or not it is visible on the June scan.  Seems odd, I know.  What the heck?  Is this thing playing hide and seek?  MRIs, especially of the spine, are very subjective.  It all depends on how the images are sliced.  It is quite possible that in hindsight the doctors, knowing now that something is there, might be able to "kind of" see the beginnings of this something on images from two scans ago.

That being said, all parties have been consulted and everyone agrees to stay the course and continue with the 5 drug anti-angiogenic protocol Campbell is on.  All doctors say that the drugs have not had enough time to work to switch them, yet.  Neuro-surgery feels the small size of the tumor plus the lack of symptoms does not warrant the risk associated with yet another surgery on Campbell's spine.  So, no surgery, at least for now.  Neuro-oncology and Radiation oncology want to give the drugs more time to work.  Everyone has agreed to an MRI sooner rather than later.  The normal time frame would be to scan in another three months.  Cam's has been scheduled for six weeks.  If in six weeks the tumor is not showing a response to the medication (either by remaining stable or growing), then we go back into discussions.  The choices would be to continue on the 5-drug (out of the question if it has grown, a possibility if it has stayed the same), switch chemotherapies to something stronger (although with many more side effects), surgical removal of the tumor, and/or radiation to the rest of her spine plus the balance of her lower brain (not previously irradiated).

Obviously, we did NOT want to hear of new tumor growth.  However, her brain continues to show No Evidence of Disease.  Her spine, below this pesky new tumor, looks good.  The original tumor field from June is clean and the additional spot found in July (never removed) is showing signs of tumor death (awesome).  These are all very good things to hear.  We try very hard to hold onto these good things and not think too much about this new growth.

In the meantime, Cam's appointments last week all went well.  The neuro-opthalmologist said her vision remains perfect continuing to show no side-effects from the cranial radiation Cam received two years ago.  The neurologist was please with her neuro functions.  The endocrinologist was also pleased. So much so that we don't need to see her until next summer.  All good news.

Cam continues to love school.  She is such a happy child.  Maybe because she always gets her own way ;-)  She is taking a ballet/tap class on Friday afternoons.  At first I thought Friday afternoon would be too much for her, that she would be exhausted from the school week.  She proves me wrong every week with excitement and energy for dance class!  I have never been happier to be wrong (which is very much unlike me).

Off to get my little dancer from school!  Sending love to you all from the Waiting Place on the Island of Denial!

xoxo
Robin