Journal Entry

August 3 , 2005

“One man with courage makes a majority”

(President Andrew Jackson)

Shayla (6) and Christi (8)
at the American Girls Store in Chicago , Illinois
( July 14, 2005 )

Our deepest thanks and appreciation to a most wonderful, courageous woman – Pat Tallungan for orchestrating a great conference on neuroblastoma sponsored by the great CNCF. (Children’s Neuroblastoma Cancer Foundation).  Since the death of her son Nick, Pat has worked tirelessly helping other families fighting and grieving from this horrible disease.  I must say that this year’s conference was incredibly depressing as it appeared that the number of “fighters” was really decreased and the number of “angel parents” greatly increased.  While there wasn’t a lot of new information gleaned for Shayne and I, we were still pleased and thankful about getting together with so many of our dear friends as we brace and cling together for whatever stage of the battle we are currently in.  It was a bit too informative for Christi, in our minds, despite the fact that she was in the “Kids Room”.  While I hope to still be in this fight next year, I don’t believe it is in her best interest to be in attendance in 2006.  Let’s just say it was “information overload” and “too close to home” for an 8 year old with parents who try to protect her even though that too is sometimes out of our control. 

My favorite session was Dr. LaQuaglia’s session.  (He is the incredibly talented, humble surgeon at MSKCC held in the highest regards by NB parents as he is able to resect tumors that many others would never even attempt and who manages to salvage the organs of these precious children that would be cut out by most others who do not posses his gifts.)  And while not of any medical significance in my mind, he shared a “larger than life” video of an actual surgery that was just awesome!  Not that I enjoyed watching a child being sliced open, but to see his incredible, tedious work in fast forward was such a dramatic witness of the “good vs. evil” that exists with neuroblastoma since we typically can’t see the tumors which have invaded the bodies our precious children.  It was intense, but fascinating beyond belief!  (Yep, Mom – I am the same daughter who was mortified, screamed and ran out of the lab when a fellow high school student placed a dissected animal on my leg - then my teacher drove to your workplace and told you about the incident.  Remember that?  Look how far I’ve come! Maybe my next career will be as a surgical technician or something – ha ha ha!)

Seriously, after Dr. LaQuaglia’s presentation, I – like some other grateful parents, shared my thanks with him.  I told him that the last time he saw Christi was almost exactly two years ago after her completed her full resection (July 24, 2003 – my deceased father’s birthday) and Dr. LaQuaglia’s last looks at her were of a bald headed kid in intensive care.  I showed him a picture of Christi today.  What a stark difference!  Thank you, Lord for this miracle worker you’ve put here on earth!!!  (Now can he just remove that rib???  I won’t say it hasn’t crossed our minds.)

We were greatly pleased to finally meet up with a “Christi Cheerleader” who works in downtown Chicago .  Amy came to our hotel early one morning so that we could finally meet in person this gem of a young lady – who quite ironically happened to be dressed in a beautiful teal blue dress that coordinated perfectly with both of the girls’ outfits that day, wild!  I just wish our time together would have lasted longer and that she would have skipped work and went skipping off to the American Girls Store with us instead!! 

The American Girls store was the highlight of the Chicago trip for Christi and Shayla.  We spent over three hours there on Thursday morning carefully inspecting each and every item and display - and with many “oohs and ahhs” and squeals of delight (and that was just from Shayne – a true minority in that store, hee hee).  With $50.00 in spending money allocated to each daughter a most careful review of the merchandise was needed.  They were both “pleased as punch” with their selections.  And if you noticed the photo at the top of this journal entry, I allotted myself $21.95 and brought home a few pictures!!

We also visited the wonderful museum of science where in hindsight we should have steered clear from an exhibit called “Bodyworks”.  After learning that she was actually viewing 200 cadavers and not just plastic models of the bodies, Christi was so appalled and disturbed that she didn’t want to eat anything for a few days.  (Not good if you’re starting a new chemo that needs to be taken with food!!!!  Ugh!)  Not meant to be an appetite suppressant, but a rich educational opportunity we analyzed that fact that we had made a very poor choice in deciding to view “Bodyworks”.  (We also determined that a very squeamish Christi most likely won’t “cut it” – no pun intended, in her chosen field of study - veterinary science!) Throughout the exhibit, with careful concentration, I examined nearly every skeletal system that displayed the posterior rib area where Christi’s new tumor is present convincing myself that her tumor must be very small at this point.  When viewing what was obviously a child’s body placed upon the shoulders of a male with a female posed beside, Christi said, “It’s too bad she died so young.  I bet she died of cancer,” nearly bring us to our knees.  An eight year old shouldn’t know so much!  As always trying to protect his children, Shayne quickly cut in with, “Oh, I bet they died all together in a car accident.”  And she said, “Yeah, maybe you’re right.”

Visiting with our hometown / old school friend – Kaye and her beautiful family was delightful.  I remember Kaye telling me soon after Christi’s diagnosis that they were also good friends with another couple whose child was fighting neuroblastoma – an incredibly rare disease, and Shayne and I thought, “yeah – right”.  Well sadly, “yeah – right”.  Pleased we were to also get together before the conference with the beautiful Lydia and Ted whose son has been bravely fighting refractory neuroblastoma just four weeks longer than Christi even though Lydia greeted me with tears in her eyes whispering to me that Darren (also from Oklahoma) was dying that very afternoon (along with Cameron – a boy I didn’t even know about but he was also from their hospital in Oklahoma) and I hoped Shayne wouldn’t find out until after dinner because I knew Darren’s death would also be taken extremely hard by Shayne.  (And it was!) Oh, how I hate this beast!

Just a month shy of his 16th birthday, Darren received his Angel wings instead of his driver’s license.  Later when I told Shayne back in the hotel room the blood drained from his face as he whispered back, “no way.”  Darren Ernst, “fought the fight” for roughly six years, had been doing very well and appeared to have the disease down to a low, stable point when it appears that quite suddenly cardiac problems arose and he was soon on life support.  He had the most beautiful Mother – inside and out and I will never forget the images of Shayne and Darren playing video race games together at the Ronald House in Philly.  With Darren’s great love of racing, I’m confident that he’s now racing on the streets of heaven – finally free from neuroblastoma!  Our prayers are with his sweet family.

So as my own dear family hopped in the van to head home after an incredibly emotional conference, I went to catch the airport shuttle with tears rolling down my cheeks and with many thoughts of, “What in the world am I doing?” as I contemplated calling Shayne to turn around and to take me home with them too.  (OK and with thoughts of, “Would he really even come back for me?”)  So as I made the analogy (borrowed from Shayne) to an awesome school board member at my training in Reno:  Just because you live beside the Mississippi river doesn’t mean you spend your entire life building a dam for a flood that may or may not ever come and if it does than you just spent your entire life doing something for nothing as it didn’t to do any good anyway.  Thankfully, my training was so intense with very long days and nights with a lot of work to accomplish and to be evaluated upon by my peers and by my trainers that I didn’t ponder too much the true seriousness of Christi’s situation, despite the fact that I spoke with Shayne a couple of times each day and was relieved every time to learn that her only complaint was her little sister and she was tolerating the chemo like the champ I’ve witnessed myself time and time again.

Despite the fact I made new friendships with truly brilliant individuals from all over the USA passionate about quality and excellence in teaching, I was most anxious to get home and to see with my own eyes that Christi was indeed still feeling well – and she still is!  (And I made it; I passed my training!!  YES!!)  She started her new dosage (200 mg) of ABT-751 on Friday of the neuroblastoma conference.  The first night I was sleeping with her and she was incredibly restless not sleeping well at all.  At one point she said, “I just don’t feel right, Mommy” which scared me so bad I ended up waking Shayne and sobbing into his chest convinced that the ABT was causing heart failure right then and there.  Now as I reflect back, I don’t believe that just 12 hours after taking the drug there was anything related at all, but with the conference going on, Darren’s death, the Bodywork’s exhibit, swimming, a lot of travel not to mention the horror of Christi’s recent progression – I think it was just “too much” for all of us.  That was the only complaint for the entire seven days – well, expect for her little sister (but I think I already mentioned that, hee hee).  Tina – I’m certain you couldn’t possible relate, right??!! Smile.

She continues to be pain free fully participating in summer activities like a normal little girl should:  bike riding, swimming, playing with the neighbors and on the piano, riding horses, going to the fair, etc.  Last weekend was a great weekend at the lake with my sister and her wonderful family.  This past weekend we enjoyed visiting with relatives at my Mom’s and the girls and I stayed over night with Aunt Marty and Uncle Jeffy.  The Charlie and the Chocolate Factory was a movie which kept all of us well entertained and of course the miniature ponies in their pasture were the highlight of the girls’ stay.  Thanks, Kings!!

Recently, Christi has become an even bigger “computer bug” as she established an email account (with the cutest little name and password) and has been taking hours to respond to the emails her family and friends have sent her.  This long process has confirmed the need to learn keyboarding skills so she’s been practicing a typing program about 30 minutes each day which will hopefully assist with this process.

Her blood counts were taken last Wednesday when they should have been at their very lowest point following the new higher dose chemo and they were good – much to our delight!  (not normal, but good!)  Tears fell down her cheeks the entire time as she claimed the needle wasn’t in her chest right and it hurt.  It’s always heartbreaking watching your loved one suffering knowing there is nothing you can do to make it better so I filled her hand with kisses and pressed her hand against my cheek like I have done time and time again.

The only “odd” thing I’m noticing about Christi medically is that she is having some hard blinks.  When I ask her why she informs me that there are white spots in her way and she has to blink hard to remove them.  She says it’s from the bright light.  Knowing how NB loves to attack the orbits of the eyes, my fear and panic are of the worse.  I’ve posted my concerns to our NB support group and many of the responses tell me it could be that, a side effect from the ABT or nothing.  So far, no response to my email of concern I sent to CHOP.

I have received the schedule from CHOP and booked our flights.  The good news is that it appears we can fly in on Monday afternoon and return home on Wednesday night, but the bad news is that Christi and I will need to miss our school’s Open House night that Tuesday.  My classroom is nearly ready to go; however, I would like to meet my students and their parents prior to the first day of school and Christi will hate not getting to see all of her friends assembling in their fourth grade classroom together with their wonderful teacher, yet I realize nothing can be done about that.  This week the girls and I went and purchased all of their needed school supplies which was so much fun; we are excited about school starting up again in a few weeks!!

Eric has all of the spring 2005 photos up if you are interested, check them out. (THAAAAAAAAAAAAAANK YOU, Webby)!!!

Thank you all for your love, support and prayers,


Christi’s Joke:  What’s a good name for a thief?  (Rob)  What’s a good name for a lawyer (Sue).

What’s Next?  Friday morning she’ll begin her 2nd round of this higher dose (200 mg) ABT-751.  This will be her 17th cycle of it overall and her 27th round of chemo.  Then the two of us shall fly to Philly to see if her disease is better/worse or the same.  We are prepared and expect the worse, yet we will hope and pray for the best.  I shall post again when we have the news – good or bad, which will be approximately three weeks from now.  Thank you for checking in with us!

FAMILY KEEPERS:  Our recent meal conversation included each member responding to this prompt:  Describe each of your family members using only one word.

Christi said: 

  • Shayla - generous
  • Dad - humorous
  • Mom - thoughtful

We described Christi as: 

  • Shayla - sissy
  • Shayne - brilliant
  • Angela- compassionate

Angela’s “funny”:  While in Reno , I was being evaluated so I didn’t want to make any “mistakes”.   The bus was scheduled to pick us up at 7:30 AM to take us to the College of Education at the University of Reno .  I knew I couldn’t be late so the night before I went in search of the 7:30 AM pick up location.  I thought I heard a trainer tell us to be at the doors beside the Sundae Shoppe and in a huge casino resort hotel with eight restaurants and a snack bar and coffee shop this appeared to be in order.  Well, despite much walking, I couldn’t find it so finally I asked and much to my embarrassment learned that they do not have a “Sundae Shoppe” but instead a “Sundry Shop” – What a hoot!