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

As much as I like boobs....

I hope that got your attention...  I don't say this to minimize the importance of finding a cure for breast cancer, I just wish that pediatric cancer got the same press.  September is pediatric cancer awareness month and I didn't see any sports teams wearing gold socks in honor of these kids that look up to and admire them.  I am not naive enough to not see that people don't want to talk about kids getting sick, but COME ON!!!

Anyway....

Cam has been tolerating the chemotherapy regimen very well and continues to amaze us. She takes pills (not all very small) every day (multiple times a day) without complaint. Her hair has started to thin but not noticeably to anyone that doesn't see her every day. Her attitude is inspiring. She has enjoyed school and has only missed a day so far (she had a cold). She has gone every week thus far for blood work and has really been a trooper. 

This week Robin and Campbell go back to Boston for Cam's first follow up scan since she finished radiation treatment.  She also will see the endocrinologist, the neuro-oncologist, optometrist and a boat-load of other people that are much smarter than I am.  We are hoping that they come back with good news regarding the spots that were still on her spine - that they are either gone or have not grown any more.  Along with that, we obviously are hoping that the MRI of her brain continues to show No Evidence of Disease (NED).

We have been so fortunate enough to have so many people that care about our family and girls. Heartworks continues to amaze us with their generosity and random acts of kindness. Our friends and family are there when we need to yell, cry, drink or just have a "normal" evening. It helps more than we can express to you.

 Please take a moment to say a prayer to whoever you pray to that we get the news that she needs.

With Love,

Greg, Robin, Caitlin, Caroline and Campbell