“Never tell me the odds.” Hans Solo
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
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 . (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
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
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
and eating breakfast with “Fred’s Team” at
. 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
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
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
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
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
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
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
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
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,
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):
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Shayne & Angela Thomas: firstname.lastname@example.org