Fighting neuroblastoma over half his life
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
I have started this update several times, but the words keep failing me. I want to find an eloquent way to tell you and myself that everything is wonderful and that Patrick’s cancer is cured. Unfortunately, the truth is that the scans yesterday were not good no matter how positively you try to look at them. This was not a surprise, but it was still painful. Patrick has extensive disease in his shoulders, arms, spine, and legs. Amazingly and in keeping with his character, he has not complained one time of pain, which is unbelievable when you look at those scans.Continue Reading →
Patrick’s eye is looking much better, but his haircut looks pretty rough. As if on cue, after I posted last about no hair loss occurring yet, Patrick’s hair begain to fall out. He opted for a home grown mohawk, which is certainly savage. He is transfusion dependent for platelets, but his ANC is climbing slowly. He is scheduled for a CT tomorrow, probably platelets, maybe blood, and a MIBG injection.Continue Reading →
You haven’t heard from me in a while. I have abdicated update responsibility to Erin while I struggled to find inspiration and recovered from a series of body blows. As a multi-generational Augusta native, pride in the Masters is a given. One wonderful thing about the U.S. Open, though, is that the drama unfolds on Father’s Day. This Father’s Day is when Rory McIlroy shook off a dreadful Masters collapse and won with as much class as he lost with in Augusta.Continue Reading →
Patrick has enjoyed his best summer in recent memory. His last 5 summers have been dominated by intense treatment, hospitalization, and travel. This summer, due to many factors that I am going to refrain from venting about here, his treatment has been minimal. This has allowed him to spend a ton of time playing with friends, fishing, tubing, going to the beach with his best friend, and relaxing in the mountains. … read moreContinue Reading →
We were blessed with a wonderful surprise this morning when Patrick’s MIBG scan was clear!!!! Although this doesn’t mean he is in remission due to the very probable marrow disease, we are thrilled that his low disease burden means treatments may be more effective.Continue Reading →
What an emotional day for me, and I presume Patrick is feeling it, too. Today is our last day of school, which is a bittersweet day for all families. Another year gone by, another sign of how fast childhood passes. Today is more than that for me. As some of you know, we have decided to home school Patrick next year for a variety of reasons.Continue Reading →
posted on CarePages, April 16, 2011 Stephen and Patrick are on a flight home as I type this update, a little later than the scheduled arrival time. Patrick’s radiation level was 6.5 this morning, barely below the release limit of 7. We were concerned that he would be inpatient a little longer this time because…Continue Reading →
posted on CarePages April 14, 2011 As I write, the second dose of MIBG is infusing into Patrick’s body. Radiolabeled iodine is circulating through his vessels and being soaked up by neuroblastoma cells that will soon die. Many will not, but today at least we have our heels on the throat of the beast. I…Continue Reading →
Patrick had his MIBG scan six weeks post MIBG treatment this morning and the results are very good. There is still evidence of some disease, but Dr. Katzenstein described the disease burden as much improved. We have not yet heard from the team at CHOP about their impressions and recommendations going forward, but we feel fairly certain that we will repeat MIBG treatment as soon as Patrick’s counts allow.Continue Reading →
Yes, kissing the sidewalk is what Patrick was doing when he jumped out of the car beside our house this evening. OUR HOUSE!!! He literally laid down on the ground and smooched the cement like it was his favorite Valentine.Continue Reading →
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