Alex Burdo '15 and His Family Honored


On Monday April 29, the Burdo Family were honored with a Vision of Hope Award from the Sarcoma Foundation of America at the organization's 11th Annual Gala. 
On Monday April 29, the Burdo Family were honored with a Vision of Hope Award from the Sarcoma Foundation of America at the organization's 11th Annual Gala. Alex Burdo '15 was diagnosed with osteosarcoma when he was 12, and he and his family have been battling the disease for three and a half years. The Burdo family was honored with the Vision of Hope Award for raising over $750,000 for pediatric cancer research through their foundation, and their support of the Sarcoma Foundation of America. Alex spoke at the Gala about his fight with osteosarcoma and his hope for the future.

Watch a video of Alex's speech by clicking here, or read his remarks below.

Alex Burdo's Speech

Just yesterday, I heard a sound that hasn’t graced my ears in nearly ten months. The song of a Wood Thrush. It got me thinking of the words of Henry David Thoreau, and his feeling towards the song of this magnificent bird. He noted “Whenever a man hears it he is young, and Nature is in her spring; whenever he hears it, it is a new world and a free country, and the gates of Heaven are not shut against him.” It’s strange that such a simple thing, as in the vocal utterances of a bird, could have such an impact on someone. But birds do that for me every day. In my four-year battle against Osteosarcoma, the only thing stopping me from nearing the “gates of Heaven” are those avian wonders with which we share our planet.

Nearly four years ago, my family and I began our journey down the dark path of cancer treatment. It was August of 2009, I was 12 years old and we were all having a terrific summer. Just a couple of weeks prior, I had journeyed to Costa Rica, which was a goldmine of new and exciting experiences. It was the first time in my life that I had been made to step out of my comfort zone and try new things. But it wouldn’t be my last. Less than half a month after returning from Costa Rica, I began to experience pain and severe swelling in my right arm and tingling in my right hand. A visit to a local hospital along with an X-ray detected a sizable mass in my right upper humerus. And the rest, as they say, is history.

Now 2013, I am 16 years old and have undergone the vast majority of quintessential treatments for Osteosarcoma, including all tested chemotherapies, many of which have been used for decades. Additionally, I have participated in a couple of clinical trials for promising anticancer drugs. For many patients, just a few of these treatments are enough to eradicate their disease, when combined with surgery. But for a good many of us, including myself, this is not the case.

Many osteosarcoma patients I have met have employed a chemotherapy regimen of three different anticancer agents. And I was among them, at least at the beginning. But after four months of continuous growth of my disease, even while receiving these drugs, my cancer was advancing. We then shifted to two classic, long-used anti-osteo drugs. Right away, it appeared as if our course had turned for the better. These drugs appeared to be slowing the progress of the disease, and two more surgeries to remove metastasized disease had validated this once the resected tumors were analyzed.
We finished up treatment in October, and began what we thought would be a new life free of disease. But only eight months after parting ways with cancer treatment, a routine CTScan revealed an out-of-the-ordinary nodule in my right lung, which had apparently grown since previous scans.

The summer of 2011 was spent in heightened nervousness, as we watched this nodule grow ever larger. Suspecting the worst, we readied for a second battle with the disease. Soon after, we began to explore treatment options with the Sarcoma Team at Memorial Sloan-Kettering. But to our surprise and disgust, few promising options were available.
It was incredibly disheartening to find out that there wasn’t one treatment that we could immediately turn to, and that with a little over a year of treatment, we had exhausted all of the commonly-used therapies for Osteosarcoma.
So we began exploring clinical trials, including a drug frequently used in the treatment of melanoma.

We decided to try this drug, and began treatment soon after. But the disease showed no sign of slowing down, and had a rampant pace of growth that could only be temporarily halted by surgery of my lungs. Less than a year later, following a nasty bout of drug-induced colitis, in which eating was not an option for two weeks, we quit the trial. At this point I was weak and dejected.

Our frustration and sense of defeat was growing. There simply seemed as if there were no options out there that could halt the growth of my disease, let alone begin to eradicate it.

Fast-forward to late summer 2012, with another surgery in the books. It was August 20, a warm, late-summer day like any other. But for us, it was the beginning of a new chapter in my fight against cancer. Monday, August 20 was the day I started Humanized 3F8. 3F8 is a drug that was developed at Memorial Sloan Kettering for nueroblastoma patients. I was enrolled in a trial to see if the same success could be had with Osteosarcoma.

Back in August, I became one of the first patients at Memorial Sloan-Kettering with Osteosarcoma to receive 3F8.
And how has 3F8 worked for me? So far, it has been able to slow the growth of, and even begin shrink, my visible disease. Removing the visible lesions back in January, we detected high tumor death rates, something we haven’t seen in years. A follow-up scan in February failed to detect any visible disease, which was a gigantic victory for us.

Despite some nice results, my fight against Osteosarcoma continues. Having been in the position of seemingly no hope and no options to turn to, a relatively unknown treatment option in the sarcoma world came through to save my life.
But what happens if my disease is again detected on a scan? What happens if I get toxic from the treatment and am forced to leave the trial? Will we get lucky enough with another 3F8, or will we again get sucked into the world of confusing and unhelpful clinical trials?

For me, the feeling of having no options to combat my treatment, nor anything to even slow its growth, was far worse than being diagnosed. When my disease was first found, we had ways of dealing with it and time-tested methods that we could use to cure it. But having quickly exhausted those few modes of treatment, we were left with little more
than a game trail, instead of a well-worn footpath.

It is the goal of myself, and that of my family, that some day, other Osteosarcoma patients will not have to face the scary reality of having no decent treatment options. It breaks my heart to hear of other people dealing with the same situation I found myself in, yet it happens every day.

It is for these reasons that it is urgent to continue funding organizations like the Sarcoma Foundation of America, and the clinical trials and research they support, so that every form of sarcoma, big or small, advanced or in its infancy, will have numerous ways of being defeated.

It is our hope that drugs like 3F8 will continue to experience the success they have had, and will some day be added to the docket of anti-sarcoma treatments along with drugs that the SFA has helped fund.

To conclude, I owe my continued gratitude and life not only to the birds, but also to our dear friend Dr. Jon Lewis for his guidance and to my doctors, including Dr. Meyers and the Sarcoma Team at Memorial Sloan-Kettering, Dr. Healy, Dr. La Quaglia and Dr. Basu and all the wonderful nurses, especially Jen, Sonia, Jacquelyn and Ava who have
been with me since day one.

Thank you.
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