I have always dreamed of writing something that people would read. Of course I never thought I would end up writing something like this.
For those of you who are just now finding out, and by way of introducing this…whatever it is, let me tell you about what is happening to Cole.
Cole has what appears to be a stage 4 neuroblastoma(sp?) in his abdomen. He had been sick for about 3 weeks and then had been complaining of hip pain for about one week. When we took him to the doctor they ran tests for two days. The tests were all inconclusive for either an infection or for a synovitus, which were the two diagnoses which were initially put forward. Since they could not pin down anything for certain, they admitted him on Tuesday. On Thursday they ran further tests which included a CT scan with contrast. This test found the mass.
The oncologist believes it to be a neuroblasoma. Today, Friday, Cole had an extremely long day of tests which included an MRI, a bone scan, and then a 3.5 hour surgery. The purpose of the surgery was to take a biopsy (do you take a biopsy, or do you perform one? I don't know) of the mass, install a permanent IV in his chest and to pull a sample (think they called it a bone marrow aspiration) from his hip.
Fortunately the MRI and bone scan showed that the mass (can't use the "C" word yet. Just not ready) has not spread to the spine or to any other bones in the body. That was the first piece of good news that I have heard since this whole thing started. We won't have the results from the surgery for a couple of days.
Cole, considering all things, made it through the day and as of 9:40 this evening is resting comfortably in his bed.
The primary purpose of this blog is to have one central location for updates regarding Cole. Between phone calls, text messages, email, facebook, visits, etc., I decided that there needs to be one place that everyone who cares about Cole can go to get information.
I am not sure how else I will use this blog. I may, at times, use it to express whatever I am feeling as a way just to get it out. I would like to apologize in advance for any crude or crass remarks that I may make. I do not plan to edit this blog for content or appropriateness. On that note, please be aware that some of the medical information, and most likely many of my rants will not be appropriate for children of certain ages. I ask that parents take care with how much they allow their kids to read this.
With all that being said, I would like to end this introduction with a few special thank yous. I never really thought about how much family I have, and how many friends I have until this week. I apologize if I do not name some people specifically but everyone has been so caring and helpful that I can't name everyone.
I want to first and foremost thank Julia. Without her dropping everything at work and being my rock, I would have crumbled.
Secondly I want to thank the Rinde family. They have always been there for me, and without question or hesitation, cancelled their vacation plans just to be there for us.
Finally I want to thank the Bakers for their support and help. I know that it is excruciating to be 1000 miles away but I know you are there. More importantly Cole knows you are there. I love you guys.
I know that everyone wants to help, and I am sure that there will be ample opportunities for each of you. For right now, I ask that you give me a little time to get my head on straight so that I can figure out what we might need.
For those who want to come visit Cole, please email or call me before coming by so that I can manage the number of people at any one time. Cole is going through a lot and I don't want to smother him.
For anything else, please feel free to email me at email@example.com. I will let everyone know how they can best help Cole kick the shit out of this damn thing.
For now, please raise your glass and toast Cole, the future President of the United States of America.