Just over three years ago I think I said the same thing: “One down.” Little did I know how difficult and, in many ways, magical the road would be. Today, the last day of this first course of the investigational Aurora A Kinase inhibitor, Patrick awoke unable to walk without significant pain. He is apparently suffering from hand and foot syndrome, which is a known side effect of chemotherapy and kinase inhibitors in particular. Fortunately, his pain is controlled with Tylenol III. We learned through research today that emollients and maybe vitamin B6 can help. We will discuss this issue with Dr. Maris and do all we can to maintain his current dose. To put this small matter in perspective, we are together at home (not a subset in NYC), not nauseated (like recent chemo), not on dilaudid (like 3F8 induced neuropathy), without port access, and otherwise doing well. The very good news is that Patrick’s CBC was unchanged from Monday. His hemoglobin, platelets, and absolute neutrophil count were great – as in normal for you and me. We only hope the drug was much more punitive of NB cells. We look forward to the MIBG scan! SRC
Just over three years ago I think I said the same thing: “One down.” Little did I know how difficult and, in many ways, magical the road would be. Today, the last day of this first course of the investigational Aurora A Kinase inhibitor, Patrick awoke unable to walk without significant pain. He is apparently [...]
For golf fans, those two words conjure up images of prayer, heroics, and heartbreak. Today Phil put a fateful shot into Rae’s Creek on 12 to stifle an Easter Sunday charge for the ages. Yesterday, from the other side of Rae’s Creek, Patrick dunked two of the most beautiful shots ever hit into that same [...]
It is incredibly hard for me to post the news we learned today… Patrick has relapsed with one tumor above his right ear and possibly a second tumor in his chest. Dr. Katzenstein thinks that the tumor is in the bone of his skull (as opposed to the tissue of the brain), but we will [...]
In the last fiscal year, Press On donated more than $78,000 to Dr. Donald Durden’s research of PL-3 Kinase Inhibitor and Targeted Therapies for neuroblastoma. Click Here to read a report from Dr. Durden outlining his progress.
Press on also directed $10,000 to Memorial Sloan Kettering Cancer Center (MSKCC) to support a team of dedicated neuroblastomaresearchers who [...]
Words cannot even begin to express how wonderful the third annual Play for Patrick Tennis Tournament was this weekend. This year, we expanded the tournament to include a pro-am competition on Saturday, thus making a “charity weekend” for the first time. The numbers are not all in yet, but it looks like it will be [...]
Just over three years ago I think I said the same thing: “One down.” Little did I know how difficult and, in many ways, magical the road would be. Today, the last day of this first course of the investigational Aurora A Kinase inhibitor, Patrick awoke unable to walk without significant pain. He is apparently [...]
A quick update to ask all you faithful prayer warriors to bend the Lord’s ear for our friends, the Morgans. I have written about this dear family before. Ryan was diagnosed with stage IV neuroblastoma a year or so before Patrick, and his mother, Missy, was kind enough to reach out to us when our [...]
Words cannot even begin to express how wonderful the third annual Play for Patrick Tennis Tournament was this weekend. This year, we expanded the tournament to include a pro-am competition on Saturday, thus making a “charity weekend” for the first time. The numbers are not all in yet, but it looks like it will be [...]
In the last fiscal year, Press On donated more than $78,000 to Dr. Donald Durden’s research of PL-3 Kinase Inhibitor and Targeted Therapies for neuroblastoma. Click Here to read a report from Dr. Durden outlining his progress.
Press on also directed $10,000 to Memorial Sloan Kettering Cancer Center (MSKCC) to support a team of dedicated neuroblastomaresearchers who [...]
It is incredibly hard for me to post the news we learned today… Patrick has relapsed with one tumor above his right ear and possibly a second tumor in his chest. Dr. Katzenstein thinks that the tumor is in the bone of his skull (as opposed to the tissue of the brain), but we will [...]
Erin and I took Patrick for the 48 hour MIBG and CT this morning. We just got home. When I saw the spot light up on his head I could not imagine how Erin felt when she saw it yesterday without preparation. The equivocal spot in the chest remains equivocal. If it is there it [...]
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