Journal Entry


Thursday morning, November 10, 2005

“Never tell me the odds.”  Hans Solo


Shayne finishes the NYC Marathon – running on “Fred’s Team”
raising $3,770 for cancer research at MSKCC)!

Dear Christi Crew,

What a busy week!  You’ve been so kind to lift up Christi in prayer that I want to get the scan results info to you immediately; however, I’m afraid in the rush to get this updated so rapidly that I may overlook a “thank you”.  Please forgive me if I forget to thank you for your help over the past week!!  (Also, please excuse the fact that I haven’t emailed in nearly a week as I’ve been out of town.)  Here goes:

Shayla and Shayne headed east to NYC after school on Friday with Aunt Marty and Uncle Jeffy while Christi and I ventured south.  We spent the night with Grandma Nonee and Paw Paw Joe for a special treat and to spend some treasured time with them prior to their trip with their church group to the Holy Land .  (Already, I’m anxious for them to return home safely.  Lord, hear my prayers.) 

My deepest thanks to Dr. Gartner and her Middle Childhood Ed. students for their hard work, kindness and volunteerism at Vicki’s “Alex and Christi’s Lemonade Stand” held on campus on Saturday prior to the OSU game.  It was simply amazing!!  When I walked up and saw some of my fellow doc students, middle childhood undergrads, Vicki, and even strangers all helping out, I was in awe of all those great folks!  And to get to know a sweet gal from my hometown – also studying middle childhood ed. was really neat!  (Thanks, dear Katie!!)  I was able to meet another “Angel on Earth” - Heather who is a sweetheart and who has been such a great support to our family for three years now.  Finally, I was nodding nonchalantly while Vicki told me this, yet I think it didn’t really sink in until later (because I was so shocked).  She told me that Jim Tressel (The OSU Head Football Coach) emailed her back about the lemonade stand and Christi’s website.  Whoa!  Soooooooooooo cool!  Gooooooo, Bucks!  They won the football game in a BIG way too!  And Christi’s new saying is “Go, Bucks!”  Perhaps I shouldn’t have let her spend so much time on campus!!

The morning of the marathon I ran 26 minutes on a treadmill in honor of the 26.2 miles Shayne would run beginning at 10:00 AM .  (I thought I should at least do MY part, hee hee!)  What I didn’t know was that Shayne would be placed MILES behind the start line and wouldn’t even get to walk up to the start line for 35 minutes.  Then to have to walk the first three miles because of the jam packed conditions.  I had his name (along with Christi’s NYC oncologist Dr. Kushner’s) up on my computer screen on the tracking system and his time wasn’t coming up and wasn’t coming up, I was really starting to worry and wonder what had happened.  Little did I know how far back in the pack he’d have to start and never did I imagine temperatures in the 70s in November in NYC.  After what seemed like an eternity, his time finally started appearing (and being updated every minute) on my computer screen.  While I had wondered what had happened, I was thankful he was at least on his way!!

Thanks to the Kings for making the trip they were literally a Godsend to Shayne!!  When Aunt Marty saw Shayne coming during the race she called me and I was able to speak briefly with him.  When he told me he gave his jersey to Shayla because it was terribly warm, tears rolled down my face.  (Thank you, to the Mark’s family for getting her there!)  So I’ll let Shayne tell the rest of the story.  Here’s an email he sent to the sweet financial supports of his fundraising efforts:

The morning after the NYC marathon I held up “The Times” and told the hotel clerk that I was right behind the Kenyan runner that won.  Tongue in cheek she asked “how far?”.  “Not far in geologic time,” was my reply, but the reality was that I was still in Brooklyn when the front runners finished!

But instead of discussing the closest finish in NY marathon history, let me back up a bit.  Friday was an easy 10 hour drive to NYC.  I had great conversation with Marty and Jeff while Shayla was engrossed with her CD player (with headphones).  Saturday we did some brief sight seeing and then I dropped my companions off so they could walk the Brooklyn Bridge .  Shayla and I proceeded to our visit with the Marks family.  She got to spend an entire weekend with her preschool friend from New York (who just happens to have a view of the Statue of Liberty outside of her bedroom window, wow!).  What a thrill of a weekend she enjoyed. Thank you, kind friends.

It is a requirement that participants register at the Marathon Expo.  While visiting the “Fred’s Team” booth I became gripped by the emotions produced by a fantasy I keep locked up deep inside.  For the first time in a while I imagined Christi as a long term survivor of her disease.  This inspiration came from the spunky little marathoner named Aubrey who seemingly bounced around the booth on pillows of air.  As I came to understand her story, I longed for it to become our story.  As a child, she was a pediatric cancer patient at MSKCC.  Her initial treatment planned failed; however, they continued pursuing experimental treatments until she finally achieved remission after 7 grueling years.  As I observed her spunk, as well as her tender interaction with her much grounded father - I welled up with tears which forced me to leave.  Witnessing the scene of them together was like a chapter from a Dickens novel: “Ebenezer this is your Christmas future”.   Could this be Christi and I thirty years from now?  I returned to the booth with a camera because I wanted to capture this phantom lest it disappear.  The Fred’s Team-Aubrey Fund for Pediatric Cancer Research is well named and deserves our support.

After that, it was a pasta dinner at the “Tavern on The Green” and off to bed for a good night’s rest.  OK, I did go right to bed - but can you imagine how hard it is to sleep the night before your first marathon?  Not to mention that I was in the most exciting city in the world staying right in Times Square on a Saturday night!!

The morning starts early for a marathon.  I was up at 5AM and eating breakfast with “Fred’s Team” at 6AM .  Again I was humbled by the dedication of Dr. Kushner.  He was there to run his 8th marathon for “Fred’s Team” - just one year after having cardiac surgery.  As Christi’s primary Oncologist at MSKCC we were always deeply grateful for his dedication to nueroblastoma, but this was “over the top”!! Thank you, Dr. K.!!  At 7AM we had the team photo at Times Square and then it was all aboard the buses for the first leg of the marathon-getting to Staten Island .  Once we arrived it became very clear that this was not going to be your ordinary weekend fun run.  There were people everywhere.  We were sorted by color and bib number and separated into different holding areas.  An hour before the race we were called to line up in shoots.  Finally, after a long tense wait they asked us to move toward the bridge.  The energy was awesome from 30,000 people moving toward the start and the national anthem finishing with a blast from a cannon.  Shortly there after we emerged on the bridge and what a site that was…we have all seen the photos of the Verrazano-Narrows Bridge , but, that does not do the magic of that moment justice.  It is enormous!

It was at this point that I realized that I was in for a very long day.  The span to the very end of the bridge is 2 miles and I was not able to begin jogging until well after that point.  In fact I did not really hit a stride until mile four and by that time an hour had passed.  Also at this point it became clear that it was way hotter than I ever thought it was going to be in November - 75 degrees and sunny. 

Each and every mile of the New York City Marathon offers a different delicacy from the diverse menu of the Big Apple.  Each block displayed its own cultural flair to the marathoners.  Music filled the air at all times:  reggae, bag pipes, drum and bugle, hip hop, rap, Rock N Roll, and several things I couldn’t identify.  Each neighborhood reflected its own identity by the way they embraced the river of humanity that passed by its front steps.  In hip Williamsburg there seemed to be a mile long tailgate party while more somber Hasidic Jewish neighborhoods gently cheered the runners with their families.

My highlight was at mile eight when Shayla and Veronica miraculously spotted me in the parade!  I was able to give Shayla a big hug and slip my “Fred’s Team” jersey over her head.  My kids really make my life rich, I was fortunate to have Shayla there to experience part of that with me; I will never take her presence for granted.  Our thanks go to the Marks family for schlepping the kids around Brooklyn to see the marathon.

By all objective standards things went downhill from there. (I just wish that the run would have been downhill!)  The heat began to take its toll and the hunger started to set in.  The struggle to stay focused began.  At the half marathon marker I had my doubts about finishing.  The logistics, all the pre run jitters, and the jockeying for position had made me weary.  Although I had taken extra steps to hydrate and fuel up before and since the start, I was now depleted.  Making my way to the Queensborrough Bridge I made the strategic decision to walk up the bridge.  I desperately wanted to steady myself before the emotions of the mile up First Avenue - past the hospital.  That was a difficult mile indeed.  Jennifer – a wonderful Mom to a NBIV daughter we treated with in NYC, greeted me with a sign which included a picture of Christi and me.  Her kindness earned her a very sweaty hug (not exactly a reward for good friendship).  I was touched by the “Fred’s Team” cheering section and then I could hardly drink for being choked up as I passed 73rd street -our NY address.

I slumped along after that until I finally reached Marty and Jeff at mile 19.  After visiting with them I spoke to Angela on the cell phone, lubed some hot spots, then, did what I could to restart my engine.  All I had to do was a loop through the Bronx, a piece of Harlem and then a big finish through Central Park .  My personal support team met up with me again at the park where they both did stints of “bandit running” with me.  It kept me moving toward the finish.  As I entered the park and traversed behind the Met, I was all alone in my suffering.  Thankfully, I had my many fond memories of many trips to the famous Metropolitan Museum of Art to keep me company and the wonderful image of lunch at “The Boathouse” this summer to relieve some of the pain.  The finish line was a glorious site, although it took too long to arrive, it was wonderful just the same.

Afterward, I called my mother to tell her that I had finished.  As we hung up she told me how proud of me she was….I called her back and said, “Mom you really shouldn’t be that proud of me because I was passed by:  two blind guys, an amputee, a double amputee, a guy in a wedding dress, a guy in a squirrel outfit (who bumped into me on a bridge descent and lost his head-no really-and had to chase it and pick it up), and a guy who was running to raise awareness of testicular cancer (He carried two giant testicles around his neck).  Well, OK, I did beat the two guys in the Rhinoceros costumes.”

So would I do it again??….”Fred’s Team” is definitely worth supporting; however, a New York marathon is a very humbling experience so I will defer that decision for another day!

Shayne

With only 2% of the population ever running a marathon, I think one knows why I’m so proud of my wonderful husband!  What a lucky gal I am!

Thanks to Dave for arranging a “Christmas Spectacular” show at Radio City Music Hall for Shayla and all.  When I came home last night with Christi, Shayla was acting out the numbers for me – and looking very much like a Rockette in her “very tiny” outfit (just her panties).  It was darling – and hilarious!  She LOVED the show, as they all did!!

I’d also like to thank Traci – er, I mean “Harriet” for assisting Christi and I with her tests and scans.  I never would have been able to pull it off without her help!  This fine young lady is absolutely extraordinary!  What a blessing!  Also, back at home thanks to all who helped get Shayla to school and dance class, etc.  I hate being away, yet take comfort in knowing how well others are providing care.

The isotope injection went fine on Tuesday.  The blood counts were great – all normal ranges and her LDH was also in the normal range (Yahoo!  Praise the Lord!)  The LDH was 737 (normal 400-1250).  Whew!  I felt that was a good sign, but wouldn’t really know until her MIBG scan on Wednesday.  The scan took one and one half hours from start to finish this time.  Her entire head was re-scanned as was her chest area.  I felt like we were in deep trouble each time the radiologist would call the technician and she’d tell me that they had to re-scan (again) another area.  My mind went racing.  Oh, it was agonizing.  For the final 30 minutes tears poured out of Christi’s eyes and I gently rubbed her head and wiped tears the entire time.  (She felt that she was belted down too tight and that it really hurt bad.  She knew if she wiggled or had me unstrap her a bit it would mess up the scan and they’d have to start over – boy is she smart!  And boy was that experience emotionally draining.)  Well, it was all worth it!  Here are Dr. Maris’ words:  Scan looks the same as last scan (Sept. 05). Still with uptake in the left 2nd rib, no new areas. I am very comfortable with recommending that Christi stay on the IRN/Temodar.

So, she’ll start tomorrow morning.  Here we go again!  So the cancer remains in her bone marrow and in the one rib.  Two more rounds of chemo (like round #32 and #33 but who’s counting?!) and scan again.  We know this isn’t going to last much longer.  I do know of a child who managed to stay on it for 11 rounds without progressing.  This will be Christi’s 8th round of irino in her “cancer career”.  I know we’re pushing the envelope and I know they can’t possibly get that trial we’re eyeing open soon enough!  Lord, hear our prayers!

Again, thanks for checking in and please forgive me for not returning emails and not thanking everyone here.  You’ve richly blessed us with your love and support and we thank you from the bottom of our hearts!!

With peace and gratitude,
Angela and the Thomas team

What’s next?  Two more rounds of chemo and then repeated tests/scans to evaluate the situation and determine the next game plan in roughly eight weeks.  A newspaper is coming to our home tonight for an interview for “Seniority” magazine.  My folks are out of town so here are their comments.

Reflections on being a grandparent in this situation.  From Angela’s Mother (Christi & Shayla’s Grandma Nonee):

  • It seems like a "double whammy" - you feel so bad for your grandchild AND you feel bad for what your child and her family have to go through.   There is also a "helpless" feeling.  You want to do something, but there is only so much you can do.  My faith in God and his all-knowing love for all of us (I know he loves Christi even more than I do) is what gives me the strength to continue on.   Prayer gives me comfort and peace.
  • It has been a blessing to have so many friends, relatives, and even people we don't know praying for Christi and showing us great love and concern.
  • I have been very thankful that Christi has a mother and father that not only love her and sacrifice whatever they can for her, but they also love each other and work together as a team.
  • Time with Christi is very precious (as it should be for everyone we love) Knowing that any day could be the last that I see her makes my heart ache. 
  • Any concerns I might have, seem very minor compared to what Christi and her family face each day.
  • Reflections on being a grandparent in this situation - Joe Jolliff, Angela’s Step-Father (Christi and Shayla’s Paw Paw Joe)
  • As a grandparent it is always hard to see any child sick.  When it is your grandchild, it is doubly hard.  As much as we pray and turn it over to God, it is so easy to take it back and try to solve it yourself. 
  • I lost a loved one to cancer in the past.  The ups and downs of good report, bad report cycles bring back those painful memories.  I thank God there are thousands of people around the country praying for Christi and for us to have the strength we need.  I don't know how we could do it without that prayer and emotional support.
  • Bottom line is that it is our faith in a faithful God that keeps us going.  Even when we don't like or understand the reports, we know God is still in control.

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