Author Archives: Stephen Chance

Patrick passed away peacefully today immediately after a ray of sunshine broke through the clouds and lit up his room. He was surrounded by family and friends. Erin read Madison’s birthday letter to him and then he finally won his battle. In addition to the legacy of love we spoke of last night, he will give two strangers the ability to see. How wonderful that his eyes will continue to behold God’s creation. Continue reading →

In just a little while Patrick will celebrate his ninth birthday surrounded by family and adult friends, nurses and doctors in the comforting surroundings of CHOA where this journey began. There will be no cake or plastic toys or electronic gadgets or even Legos. Continue reading →

The hu14.18 trial we have been waiting for so intently will open officially on Monday! On Sunday, October 2, we are taking the kids to Harry Potter World at Universal Studios in Orlando for a few days. Patrick and I will fly from Orlando to Philadelphia on October 5 for a full disease evaluation at CHOP on October 6 and 7. We hope to spend a long weekend in the mountains after that. Continue reading →

I just hung up with Dr. Maris and Erin. Dr. Maris confirmed what we have seen for the last week – that Patrick looks good, feels good, and there is no reason to believe that MIBG is not working. He is therefore moving ahead with stem cell infusion this afternoon. …read more Continue reading →

Patrick and I flew to Philly on Wednesday, met with Dr. Maris, and proceeded with MIBG treatment #4. No child has ever had more than 5. Patrick’s skeleton and bone marrow host billions of neuroblastoma cells that are now being carpet bombed by trojan horse radiation. We know this has worked very well for him before to knock down disease with the hope that we could transition to antibody therapy or other trials that have simply not panned out. …read more 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 →

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, … Continue reading →