I knew that at some point, it would happen, and sadly it has. A little boy we met on our journey with cancer has passed away. I did not know this family as well as I know other families, but the little boy was right around Clayton's age and was diagnosed October 2011; so just a month before Clayton. Sadly, he passed away on Halloween this year. I don't keep up with him the way I do my other babies, so I had not checked on him since early October. At that time, a CT had shown some tumor growth. It seems after that things just went down hill. I found out about a week ago and have just been mulling it over in my head for a bit. Its weird because I was not close to his family like I am to others, but my heart hurts for them all the same. This little boy's story is so difficult to understand too.
He was diagnosed last October and told that he intermediate risk neuroblastoma and a 90% chance of survival. They began treating him with the appropriate chemo and when it was time to remove his tumor in May, they sought out Dr. La Quaglia. Dr. La Quaglia reported to them that the cancer was not consistent with the original diagnosis given to them by their hospital back home. He said the diagnosis should have been stage IV high risk from the beginning. BIG difference in treatment protocols between different stages and risks. He had to perform a whipple and when he tried to resect the tumor, he found that it was "sticky". So after the months of doing intermediate risk chemo, the tumor was now just pissed off so to speak and they had to start all over with high dose chemo. Doctors have to be careful about chemotherapy regimens, because some cancers can build up a resistance to it and that is something they are suppose to work to avoid. All those months wasted because of a hospital that wasn't equipped to handle a case like this little boy's. Because a hospital wasn't smart enough to recognize his case was out of their league. I remember when his mom first told me the story, I was in shock that a hospital made such a HUGE mistake. And now, his parents will never know what might have been if things had been sone right from the start.
Even the best doctors and hospitals screw up and make mistakes or just do something that seems stupid or frustrating, but there is a difference between "normal" or "appropriate" mistakes and the blunders that should be avoided. You have to give credit to pediatric doctors for having the courage to work on kids because I am sure that is a very tough thing for many many reasons. However, those that aren't up to the task or don't know how to check their ego at the door just need to go away. They aren't needed and certainly aren't wanted by the parents.
Clayton saw four of his doctors in the two months leading up to his diagnosis; he had an x-ray in September and even had an ultrasound in October. Crap, we even did a urine analysis on Clayton in October. He saw some of his doctors multiple times during those two months. They all felt his belly, yet, no one caught the cancer. Of course we have no idea how fast the tumor grew either. My point is that it would seem that those doctors did all miss something somehow, but I do not hold it against them or love them any less as Clayton's doctors. It doesn't even make me trust them any less. In fact, I have put my trust in all of them at various times during the course of his treatment and I have no qualms about trusting them in the future. It is very normal for doctors to miss neuroblastoma until it gets further along. There is a big difference between something like that and a doctor not taking action when a known cancer patient is having around-the-clock bloody urine and pecan-sized blood clots coming out of his little four-year old man parts. There is a big difference when people miss something that is hidden verses when they ignore something that is slapping them in the face. The crazy thing is that I already didn't like that doctor, but I was continuing to trust her because she is the doctor...and then she tried to blame me and George for her not doing anything more than what she had done! Tried to say it was our fault for not better informing her! We asked every day what was going on, what the plan was, shared our concerns, took pictures of most of his diapers and gave every diaper to the nurses, what else were we suppose to do, shove them under her nose? Then she even complained about the days when our mothers would be at the hospital and George and I would be at work, so we asked if during normal rounding times she would call me since we weren't there. I'm sorry, but that is my time as a parent to know what is going on with my child so whether a doctor is standing in a room talking to me or on the phone with me, it shouldn't matter, that is my time and my right as a parent to be informed about my child's medical care. To this day, her behavior amazes me...and obviously not in a good way. I was also told point blank by one of her partners that there was no need for us to antibody therapy unless Clayton relapsed. Not true. In fact, COG officials stated a few years ago just how important antibody therapy was to neuroblastoma...a piece of information my research, not the doctors, led me to. And yes, I have irrefutable proof of COGs position on that matter. Thank God I didn't listen to that doctor.
I know there are a couple of family members who like to say that when it comes to these two doctors, I need to suck it up and get along with them, trust them, work with them for Clayton's best interest, etc. I have listened to the comments here and there for months and for the most part I have said nothing out of respect. But I am reaching the end of my line with some things now, so I am going to speak my peace here. Please stop. Please stop before I start screaming at you at the top of my lungs because you have no idea what you are talking about. I know ALL of the aspects of my son's care and I know what is best. What I don't know, I research and I learn. When I make a bad judgement call, I am big enough to admit it; something those doctors couldn't do. I know your heart may be in the right place wanting the best for Clayton, but you should know that everything I do is so he can have the best and that includes picking and choosing doctors. I deserve the respect of not being questioned about my feelings on doctors and that includes being told I need to find a way to work with them. I will and do always work with the doctors I feel are in Clayton's best interest. If you can't respect my feelings and my judgement calls then please follow Thumper's rule and just say nothing at all.
No comments:
Post a Comment