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 [...]
I am not sure there is a truer statement than “everything is relative.” Patrick may not consider the pain he went through today to have been “easy,” but compared to the last two days, today’s treatment was just that. Really, there was just no other option.
After I updated yesterday afternoon, Patrick’s blood pressure spiked and [...]
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 [...]
We had a really nice week punctuated by a visit on Tuesday from Patrick’s brother fireman, Greg Tobin. Greg is truly one of the nicest people ever to grace this good Earth. He stopped by the house on his way to Columbus to see his son who just graduated from Ranger school. Patrick was so [...]
Patrick had a good day today. He had relatively minimal pain and his blood pressure only remained elevated for a short while. Alev met us at the hospital and walked us to the Ronald in time for Patrick to participate in his favorite activity – Science with Christine. He loves Christine and had so much [...]
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