Fighting neuroblastoma over half his life

About Patrick Post

Patrick Chance was an amazing son and brother, talented Lego architect, courageous firefighter, nature lover, and a hero to us all.   He loved Star Wars, fishing, the mountains, Legos, the ocean, spiders, baseball, golf, firefighters, Spider-Man, and GI Joe.  Patrick inspired all with his desire to “heal people” and his ability to emphasize what was really important in life: love, family, friends, and fun.

In June of 2006, Patrick was diagnosed with neuroblastoma, a rare and aggressive childhood cancer. Despite over 5 years of intense therapy, including multiple surgeries, extremely high dose chemotherapy, multiple rounds of radiation, two years of monoclonal antibody therapy, 4 MIBG (targeted radiation) treatments, countless trials, and more, Patrick passed away on his ninth birthday, January 9, 2012. Simply put, the current treatments for neuroblastoma are not good enough. With your help, we plan to change that.

Patrick will always be missed, but he will never stop being our guiding light as we Press On to cure childhood cancer.

Patrick’s Legacy is Press On

Carepage Entry by Stephen Chance: April, 2007 defines the spirit upon which Press On was Founded.

Patrick enjoyed hearing the news that his own body learned how to fight off the last remaining detectable cancer – that he did it himself with a special weapon – that he won.But even with such joyous news, he still had to wake up and fight another day, and then another. Radiation is going well. Patrick hates it when the anesthesiologist puts the mask over his face, so Patrick fights and screams and inhales and eventually falls asleep. The treatment only lasts 15 minutes or so, then we wait for Patrick to emerge. He has been waking up hungry and a little cranky, but seems to shake it off and have good days without side effects. He has ten more days to go. Many of you have asked what the news of remission means for Patrick’s treatment and, I surmise, many of you also wonder without wanting to ask what this news means for Patrick’s chances of long-term survival. As far as treatment goes, very little will change. We will begin eight-week cycles (as opposed to four-week cycles) of antibody therapy sooner, but that’s it. We still have to complete radiation, up to two years of antibody therapy, six months of oral chemotherapy with Accutane (beginning next month), and then another two years of quarterly MIBG scans and bone marrow biopsies, and then additional monitoring with bigger intervals. This is so because the risk of relapse in neuroblastoma is not just possible but probable – some literature suggests 75%. And there is no cure for relapse. You just hold the beast at bay with chemo and MIBG therapy, provide palliative care, and watch your child become an angel. We have reached a necessary, elusive, and coveted milestone, but our fight persists. Very soon we will open another front. We will organize a foundation, promote the Play for Patrick events, design additional fundraisers, and hopefully make significant grants to specific researchers pursuing promising new treatments and work to bring much needed therapies, like MIBG therapy, home to Georgia. We welcome your support, whether financial, spiritual, or emotional. It all counts. SRC and ERC

Still Stable

By Stephen Chance · February 21, 2011

Erin and Patrick are on the way back from Philadelphia with news of stable scans, which is reassuring and offers hope that next week’s stem cell collection and, hopefully, MIBG treatment will arrest any disease progression underway and, even better, greatly reduce Patrick’s disease burden.

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Pressing On

By Erin Chance · February 21, 2011

There are times in life when you know the content of a message before it is received, and Monday night proved to be one of those moments. Patrick’s scan was read as “stable” last week in Philadelphia, but it looked horrible to me, leaving me unsettled and anxious.

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Homeward Bound

By Stephen Chance · January 23, 2011

Posted Jan 19, 2011 Erin and Patrick are in flight headed home. His scans are stable. We are grateful but on alert. His bone marrow remains positive. We won’t have final results until tomorrow. We hope the percentage of NB cells is lower of course. His December 22 urine markers were higher than November, which…

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