Journal Entry

Monday, August 15, 2005

In 1971 the U.S. Government declared war on cancer.  Now, over thirty years later, one thousand five hundred people still die daily of this horrible disease.  While great strides have been made for some cancers, the prognosis for solid tumor cancers (ie. neuroblastoma) remain the poorest and for them the survival rates haven’t improved in twenty years. 

(CNN “Taming the Beast”, August 14, 2005 )

Dear Friends/Family,

Just a note to let you know that in a short time Christi and I will head off to the airport.  For those of you who Believe, please lift us up in prayer.  We really need it for this bloody war!  We’re armed with a stack of borrowed DVDs (Thanks, Laura & Donna), a stack of back issues of “American Girl Magazines” (Thanks, Tina) and a lot of hope and prayer.  Thanks, everyone; that’s the very best ammunition in our arsenal! 

Quite frankly, I’m downright terrified, but trying to be as brave, tough and courageous as this little 8 year old princess has taught us to be in this journey called “life”.  Just seven weeks ago, we went to CHOP in the bliss of ignorance which quickly turned to the terror of sheer hell learning of the new tumor and again being reminded that she is fighting what is classified as a terminal cancer – despite how great she looks and feels; looks are deceiving and there is no known cure to save her life. 

With cancer you win in one of two ways.  You either beat it, or you die.  Since she’s now failed in Plans A, B, C and D I think I know where we’re going, but it doesn’t make it any easier.  I can only find some comfort in believing that perhaps her life here on earth is for some larger purpose.  If her participation in these Phase I & II studies isn’t going to help her, I hope it helps others one day be cured of this monster and all others.  Cancer is not kind!  These kids deserve better!

The shock and horror of finding that her disease had again progressed was devastating last month.  How have we coped since then?  Well, with lots of prayer (and denial – “This can’t be happening to us!” smile.).  Shayne has lost some weight, my horrible sleeping patterns have returned, Christi was treated with two rounds of the different chemo dosage, yet the girls continue to keep us going!  They’re truly our inspiration!  And one can’t sit around and mope when their little antics leave you in stitches!  Life’s too short so we’ll dance now! Early on someone told us that when your child has cancer, your entire family has cancer and I must admit that is true.  It’s a harsh way to learn life’s lessons, but it is a wake up call.  It’s like her life is in an hourglass with the sand slowly running out and I just want to slow it down, or flip it back over – yet I’m helpless!

Tuesday they will do her blood work in oncology and then we’ll be off to another  department where they’ll conduct her EKG and ECHO to monitor her heart function since one of the side effects is heart damage.  She’ll be injected with the MIBG isotope about noon and then we’ll be off to the Animal Hospital on the Ivy League Campus of U Penn!!!!!!!!!  What?????  YES!!!!!!!!!  A very sweet volunteer of Vets’ Pets (Vet students who take their pets to the Ronald House on Wednesday nights) became aware of Christi’s desire to be a vet – and to go to UPenn “for my second college”.  Therefore, I’ve been emailing with her and she’s arranged a special tour for Christi and Christi is sooooooooooo happy about this special treat!  Yipeee!  Granted, her Vet career will most likely never get off the ground as when Aunt Marty took her to the Vet with her kitty last week Christi couldn’t even watch the kitty get her shot.  (Yet, surprisingly, when it comes to herself she won’t take her eyes off the needle going into her body despite any nurse telling her not to look. “I have to watch you!” is often the response.) 

Wednesday morning it will be back to serious, gut-wrenching business as that is when her MIBG scan will be conducted.  Radiologists and Oncologists will determine if the cancer is better, worse or the same – or some odd mixture which is the beast of this monster and then I’ll meet with Dr. Maris about noon .  (Hopefully, he can put a handle on her “eye blinking thingy” too and hopefully it isn’t cancer that has attacked her orbits like we fear although that has decreased in recent days.) 

She’s remained pain free and happy and we are filled with gratitude about that.  We praise Him!!  When we return, we will hopefully have a new game plan and know what we’re going to try next.  Waiting is always so hard.  And even though I tend to pin my trust and faith on one false hope after another, it is always nice to have a plan because with relapse/refractory neuroblastoma when you’re not in treatment, you are in hospice.

Late last week we sadly learned of a fellow NB fighter’s passing from his Mom.  We met Michael and his sweet Mother (Marybeth) from the Carolina ’s in NYC where he also treated – and then at CHOP (sound familiar here?!).  Last week he went to play hockey in heaven – just two days shy of his 14th birthday and after a very courageous fight of many long, hard years.  Our prayers are with his sweet family left behind. 

In just a bit, we’ll drop off Shayla at our dear friend Caroline’s home and then take off – well, perhaps after a quick stop at the library to arm ourselves with some more artillery.  Caroline, as always, was so sweet last week.  Realizing that Christi would miss her Open House she held a private “Open House” for Christi.  While Mrs. Smith worked in her room, Christi came to school with her backpack (filled to the brim) and she spent about 30 minutes neatly organizing her desk – with smiles, getting all ready for 4th grade!  Christi’s thrilled to have an English book and a math book for the very first time.  (Keep in mind that Caroline was also Christi’s Daddy’s 4th grade teacher so she’s heard great things – even if that was back in the olden days!  (smile) Funny thing though – Caroline hasn’t aged a bit!  Christi’s going to have a great year; Shayne still has great memories of 4th grade with her!!  We’ve been richly blessed with tremendous friends and colleagues!

If you’re interested, sweet “Webby” Eric has updated the summer 2005 pics which include the fabulous NYC trip.  (You know, when our heads were still buried in the sand.  Smile.)

Please, please, please every one of you who may be reading this, cherish, treasure and appreciate those that you love. Our relationships in life are not to be taken for granted.  OK, with that I’ll get off of my soap box and do my part in this war – drive/fly the young soldier off to her war zone at one great hospital - CHOP!   As long as I’m able, I’ll always be at her side tending to her needs.  Gooooooooooooooooo, little soldier!  Mommy is so proud of you!

With a very nervous stomach and great anxiety,


Christi’s Joke:  (Thanks, sweet COSI friends for the latest Joke Book!)

Why do cows use Cow Bells?  (Because they don’t have horns.)