So here it is, the truth, I don’t know how this is going to end, I feel like sometimes I sugarcoat it here to protect everyone we love, to live on the island of denial (stolen from another pediatric cancer mom), and in case Connor is the one to beat the odds to protect him from reading one day that his mommy doubted him. Here is the deal, if anyone is going to beat cancer, it is Connor, I believe that in my heart, he is tough, a fighter and been defying odds his whole life, plus every time I look at him I just don’t understand how he could have cancer, I guess every mom feels that way.
I went into yesterday guns a blazin, sometimes I guess it makes me feel good to be a bully, because at this point most people in medical professions are a waste of my time. I have shortly realized no one will know my sons case better than me, or care more. As a result, the port people got to see me with a short fuse, because I was annoyed to be there, I knew he couldn’t eat after midnight before surgery, did I really need to come into the city to be told this?! It is not my first rodeo. The eye people got the same response, they wanted to dilate his eyes, which my insurance does not cover, takes time (which would cause us more traffic on the way home) and aggravates Connor, so I informed them that I did not care if it was their policy that would not be happening and went off on the technicalities on why we were there including the specific facial nerve that was impacted, they did not know what to do except for agree, needless to say no one dilated Con’s eyes.
With the cancer docs I am much more patient, these are the people that understand the severity of the situation and are hopefully going to save Connor’s life. I walked in with a list of about 30 questions Casey and I compiled, walked out with all 30 of them answered and a lot less confident of where this road will take us. One of the questions was can Casey and I have another child, through tears I said With whatever happens here, Claire needs a sibling, no one reassured me Con would live, instead they agreed and said we will get you in touch with our geneticist. While we were in Boston they did a lot of testing on Con’s tumor, I asked how it went, how responsive to chemo did it seem, the answer was the opposite of what I was hoping for, not overly responsive. This was a sucker punch like no other, being responsive to chemo is the key to beating cancer, now we tried to justify the responsiveness away by there could have been too much cancer left to fight and it did not grow meaning there was some response, but needless to say it did not melt away like some tumors do. The rest of the meeting was more about logistics on what is to come (the hardest leg of this journey), but I mostly stopped listening after the chemo question. The net result of all this, is next week is huge, Connor has an extremely aggressive cancer that can kill in weeks and next week we have both a spinal tap and full MRI to see what it has done while essentially off treatment this summer, if there is no evidence of disease, there is no reason not to be hopeful. I ask that to whoever you pray to, you pray there for this result, these are very important scans.
As for Con he was in good spirits once he stole the shopping cart back from another little boy who was using it! He even had his vitals done in the playroom to ensure he did not lose it again!
Today all our spirits were lifted by mommies two best friends from college visiting us, and us hearing about their lives even if it was only for a few minutes. The visit meant Con was too pumped up for a nap, but he still decided he needed a bit of time to relax!
After dinner though, he was ready for the park and enjoyed the swings for more than two minutes for one of the first times since getting Cancer!