Press On Progress!

Dear Press On supporters, we look forward to updating you periodically about progress being made as a result of Press On grants. We are very grateful for your belief in our cause and your trust that we will use your money wisely. This edition will focus on exciting developments at St. Jude Children’s Research Hospital in the fight against neuroblastoma. One of Press On’s primary goals is taking the laboratory discoveries enabled by Press On support and applying those discoveries in the clinic through clinical trials. Remarkably, Dr. Wing Leung and his talented support staff have opened three clinical trials as a result of Press On funding! If that weren’t exciting enough, Dr. Leung has also published an article in the peer-reviewed journal Blood that specifically credits Press On!

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MIBG Update: a Q and A with Kelly Goldsmith, M.D.

On the first anniversary of Patrick’s death, January 9, 2013, we celebrated his life by dedicating a state of the art MIBG facility at Children’s Healthcare of Atlanta. Patrick travelled to Philadelphia and New York frequently for treatment not available in Atlanta, including four MIBG treatments at Children’s Hospital of Philadelphia. The first two were intended to be curative; the latter two merely palliative. All four were necessary as we fought for his life. As a reminder, MIBG is a radioactive tracer delivered intravenously that is absorbed by neuroblastoma cells. It is used at low doses to measure a neuroblastoma patient’s tumor burden. At high doses the radiation kills neuroblastoma cells while sparing nearby cells. As MIBG veterans, we recognized that MIBG treatment, either alone or in combination with other agents, was here to stay as part of neuroblastoma treatment. But there was no MIBG center located in the southeast during our battle. We at Press On changed that by funding the construction of the MIBG suite at CHOA, which uniquely includes two separate rooms – one for the patients and one for the family, as well as cutting edge technology designed to better entertain the kids and the parents during the four day isolation period. Importantly, the design also promised to reduce radiation exposure to the caregivers – both patents and clinicians.

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Patrick Chance, 9, of Atlanta Georgia

Patrick Roberts Chance, 9, of Atlanta, Georgia, and Cashiers, North Carolina, passed away on January 9, 2012, his ninth birthday, after a valiant battle with childhood cancer.

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Happy Birthday, Patrick

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.

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Almost Nine and Almost Free

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.

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Avada Kedavra

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.

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Still Hope

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

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Make Something Beautiful

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

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Scan Plan

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.

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Major Drama

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.

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Take Dead Aim

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…

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Much Improved!

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.

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Press On – Thank You

Dear Friends of CURE:
With the New Year well under way, and with your gracious contributions to the Press On to Cure Childhood Cancer Fund already invested in three meaningful and potentially revolutionary research initiatives, we are writing to deliver our 2010-2011 fiscal year update.

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CURE Childhood Cancer’s Press On Fund Raising Bar to Fund Lifesaving Childhood Cancer Research

Immediate Release: March 1, 2011
Atlanta, GA: The grassroots Press On Fund to Cure Childhood Cancer (“Press On”), a Named Fund of the 501(c)(3) CURE Childhood Cancer (“CURE”), is fulfilling its mission to find cures for two of the most fatal childhood cancers in our lifetime: neuroblastoma and acute myeloid leukemia (“AML”).

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Still Stable

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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Homeward Bound

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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