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Thursday, September 10, 2009

Clean Scans?

Clean Scans?

Yes….but. Liam had two scans – a CT on Friday and MIBG on Saturday. The CT was clean with a qualifier and the MIBG is negative. There’s a spot between his kidney and liver in the site of his original tumor that was on his last scan – the one done during our long inpatient odyssey in July to search for fungal pneumonia. This was the CT that showed his primary tumor had shrunk by 50 percent after one round of ICE, the super-tough chemo regiment that brought tears to a mother’s eyes when she heard we were doing it. The spot is still there but is MIBG negative and it’s something that would be big enough to be MIBG positive. It’s also something that Dr. LaQuaglia, Liam’s surgeon who also qualifies as surrogate grandfather, thinks is post-operative change. He studied the images and compared them to his surgical report and said it was an area he was definitely “in” searching for signs of neuroblastoma during Liam’s surgery. It’s an area that has been through three surgeries. It’s an area that has seen a lot. He, apparently, feels quite confident it’s not neuroblastoma. Liam’s MIBG scan is clean, the gold-standard for neuroblastoma, which is a huge relief. Our sweet guy whose new passion is dressing up as a SWAT team member is one who is MIBG “avid” which is a good thing because it’s a reliable test. (In case you’re wondering, his first relapse which showed on a CT but not on an MIBG was so small that it wasn’t large enough to show up on an MIBG scan. This thing is bigger and would definitely light up on an MIBG.) But because neuroblastoma is a resilient and cunning beast…we can’t take any chances. There’s no opportunity in this game to say, “We should have.” We are moving forward with another round of low-dose chemo beginning Monday which means Liam will be going to school while on low-dose chemo. (I wonder how many preschoolers can make that claim?) In four weeks we will rescan and when those scans show no changes because I know they will, we will move forward with the NK Cell trial. NK, for those not familiar, stands for Natural Killer. Here’s where we get into wacky, weird science. I don’t know enough about natural killers to be able to explain it….but I know that my blood and Larry’s blood will be tested to see which one of us is a “mismatch” to Liam’s blood and can give him an “ingredient” that’s missing that would then make 3F8 antibodies more effective. Liam will be the second child to participate in the NK Cell Trial. The first child to participate in the NK Cell trial is a sweet little girl from California who had persistent neuroblastoma that just wouldn’t go away…no matter what was thrown at it. I remember talking with her very worried looking mom about her daughter becoming a part of a very new trial that sounded a bit like Star Trek science. I remember seeing her look even more worried leaving the IV room after having her blood drawn and looking a bit discombobulated having to be the one receiving a poke instead of watching her daughter. I remember being scared for her and wanting to run up to her and give her a hug, but was tending to Liam who needed me. I remember seeing her a few weeks later on the day they were to receive the results of her daughter’s scans post NK Cell. A lot was weighing on those scans. The weight of the world. She and her husband looked so nervous but we were all trying to act like it was just a normal day…in a pediatric cancer ward. I saw her, her husband and children in the late morning. I can’t remember why Liam and I were at the hospital that day. We’ve had so many trips it’s hard to keep the details of each straight. I remember wishing and hoping so, so, so hard for them to receive good results. I didn’t see them again that day. But that afternoon there was an e-mail about the nothing less than miracoulous scan results following NK Cell. Tears flowed freely down my face as I read the account. I was so moved I forwarded her update to a few friends. Tears flow freely down my face now as I remember reading her update. Her scans were completely clean. Completely and unequivocally clean…because of a trial that was funded in large part with private donations. Think a cookie can’t make a difference? Think again. Every bit counts. I recently heard Katie Couric being interviewed about her philanthropic work related to cancer research funding. During the interview she explained to Larry King how important the private sector is advancing cancer research and used the statistic that eight of our 10 clinical trials are funded with private funds, not government funds. Eight out of 10. Eight out of 10? I was stunned to hear the number and stood mesmerized in front of the TV taking notes. Katie’s platform was that if we are going to make a difference in this war against cancer, we all need to work together. I firmly believe that it is not science that is holding us back, it’s funding. What if there wasn’t funding for this trial? How long did it take to fund? And reading the update from the mother who saw her daughter’s disease disappear because of a trial that weeks ago hadn’t been available served as reaffirmation to keep doing everything possible to impact change. No one else is going to take care of this – it’s up to us – you, me and everyone we know. There are ideas, hypothesis and theories just waiting to be developed that have no funding. And that, to me, is the greatest injustice. What would you do if you knew you could be part of saving someone’s life? By raising money for research which includes funding trials, that’s exactly what you’re doing, saving lives. And wouldn’t that be an amazing feeling knowing you were part of something that had the ultimate impact? We’re into the month of September which is Pediatric Cancer Awareness Month but in every store I visit, magazine I read, commercial I see….I am bombarded with a sea of pink. Now, don’t get me wrong, Susan G. Komen and her sister are my heroes. Susan’s sister was so outraged at the loss of her sister she decided to do something about it and changed the way we as a society think about breast cancer. I am so grateful for the work she has done and I hope I never have to be a beneficiary of the advancements she and legions of others have made on breast cancer treatment. But couldn’t there be just one commercial….one display in a retail store….one magazine story about pediatric cancer to note Pediatric Cancer Awareness Month? Just one? Being the number one disease killer of children in the U.S. would seem to make it worthy of highlighting, right? And if you’re not sure how funding can help…use the sweet girl from California as the poster child as inspiration. Clinical trials save lives. And if you cut funding to clinical trials, which is what has been happening, you are essentially telling a family that there is no money to save their child. If polio could be eradicated through a campaign calling for the collection of dimes, why can’t pediatric cancer? Shoot, I’d settle for all trials waiting to be funding to be funded.

Liam’s good, relatively speaking. He’s dealing with radiation burns to the inside of his esophagus that cause him great discomfort only relieved with narcotics. Eating and drinking is only done with the help of a pain killer. This morning he set up a weather station on the roof and is bubbling over with the excitement at being able to forecast weather. He can’t wait for school to start. He was watching You Tube tonight about how smoking damages lungs and explaining to Ella what was happening, “Ella – those are arteries…see them? They’re bigger than veins and carry more blood. And those there are red blood cells – they look like donuts. And the big ones are platelets.” And then he moved from discussion about platelets to his new passion…a Nintendo game thing that I totally don’t understand but that he has fallen in love with. It’s one of the ways I know he really is a little boy. I love him so much. I love watching him protect and take care of his sister whether it’s putting toothpaste on her toothbrush or reminding her that school is starting soon and she’s going to need to get up earlier. He wants to be the older brother blazing the trail for his sister. And Liam, we’re doing everything we can to help you keep blazing trails because we know you have a lot to do.


NOTE: Please support pediatric cancer research by visiting www.philosophy.com to purchase a bottle of Oatmeal Raisin Shower Gel. Until October 15th, 100% of the profit of bottles of the cookie-scented shower gel is being donated to Cookies for Kids’ Cancer (www.cookiesforkidscancer.org). In addition, Facebook fans can go to Philosophy’s page and send virtual cookies to friends every Saturday in September and Philosophy will donate $1 to Cookies for Kids’ Cancer for each “cookie” sent. All it takes is a few clicks to support pediatric cancer research. Please. See the Facebook page and/or website for details.