Not taken seriously

I'm trying my best to write this update and not have the anger that is swirling around inside me come spewing out all over this latest entry, but if you know me personally you know I don't make any promises that I don't intend to keep, so be forewarned, this post could have an explicit word or two or three come spewing out at any given moment and I will give zero fucks about it. See, I told you so.


As some of you may or may not be privy to, Arley's main Oncologist that we have been working with over the last 2.5 years decide to leave CT and move elsewhere to pursue other things. Which is great ya know? We should all do that at some point in our lives, and we met before he left, Arley had her scans done and he suggested a new Oncologist for us and I agreed that it was probably a decent choice and trusted wholeheartedly in his judgement.

Well, after Arley's scans were conducted he called to let me know that something appeared on her bladder in the scans and that we needed to order an ultrasound for further testing immediately. Had the ultrasound done and that was inconclusive because what the Oncologist said was not what they saw so I'm like fucking great now we need a third opinion because both of what I am told contradicts the other and I have no idea what's going on, even though something being on her bladder kind of made sense to me at the time.

Then he left the practice, and the other Oncologist took several months before we had our first proper meeting. He briefly saw Arley before being called away into surgery about a month ago when I was trying to explain to him about her constant leg pain despite going to weekly physical therapy appointments. I met first with someone who had never met Arley and I can assure barely graced her file before deciding that Arley's pain was due to "growing pains." Growing pains? Seriously? Arley has documented problems with her legs, especially the left one with foot drop, constantly loses her balance and trips and falls. You're just going to write it off as growing pains? What the fuck is the matter with you?

Whatever. I let that shit slide because I knew better. I know my kid inside and out. I have been dealing with various medical issues with her since she was a baby and like hello, I'm her mother! The physical therapist was in agreement with me as was Arley's pediatrician, ya know, people who have actually spent a decent amount of time with my kid and hey wouldn't you know, actually listen to me too!

Anyway there has been a lot of back and forth going on with trying to secure appointments necessary for my kiddo to get her second (third) opinion on what's going on. I'm being met with road block after road block because nobody wants to work with me regarding my work schedule. I don't want to take unnecessary days off from work (that I have had to anyway) when I have all day on Friday off. Schedule us to be seen from 8a-5p I don't care just make it happen. Well, doctors don't want to see too many patients on Fridays (of course) so I wasn't getting too far. So I'm bouncing around between Connecticut and Boston to figure out what the deal is.

That brings us to Arley's scans the other day. We met with the Oncologist at CCMC and he didn't think it was overly necessary to scan Arley's bladder/lower regions, but you bet your ass I wouldn't give in until he did and agreed to scan it as well as the main site of her cancer. Then after all was said and done with her scans, complete radio silence. Never heard a damn word from Children's. Okayyy. Um, hello (waves frantically) worried mother over here. Did you find something on the scans or not? Fuck it, I'm not waiting any longer and I'm on the phone scheduling her to be seen up in Boston with her assigned Oncologist up there.

The good part about scheduling an appointment up in Boston is that I know in my heart that they are going to listen to me and take me seriously. Boston is freaking God in my eyes when it comes to this kind of thing and is constantly on the cusp of cutting edge stuff so if anyone is going to find something going on with my kid it's Boston. And wouldn't you freaking know they did.

I had completely forgotten about the fact that Arley's Boston Oncologist was going to give us an update on the scans for Friday(today). I seriously had been thinking all day that it was Saturday as I have had a lot of stressful things going on as well lately that were up in the air that I was trying to resolve. So today I woke up happy as a clam with so many wonderful things coming up over the immediate horizon, only to be shocked as hell to hear what the Oncologist from Boston had to say.

Cutting to the chase, Arley has blood showing up in her urine. Which means in short that there could very well be something going on with her kidneys, which would explain quite a bit that she has been dealing with since oh I don't know the end of freaking MAY! The only good thing we know is it's not an infection and there was no bacteria present. However, this could mean a whole bunch of shitty things one of them being kidney cancer. They don't think so because in children it's rare, but they didn't think she had cancer in her neck almost 3 years ago now did they? 

So through my tears I tried reaching out to the Pediatrician's office and we were having some random connection issues to where we could hear each other perfectly fine and then all of a sudden I could hear them, but they couldn't hear me and we had several failed attempts with the phone before I said screw it, put Arley in the car and drove over there to at least give them the direct number to Boston's Oncologist.

Eventually later on this evening Arley's Pediatrician called me. Both the Boston Oncologist and her Pediatrician are perplexed as to why this is currently happening and what the cause or even the source of the cause is. This is kind of over the realm that the Oncologist has ever dealt with personally so we have calls out to the Pediatric Urologist to see what needs to be done as the next step. So far the only thing we have planned is to collect an early morning sample of urine from Arley to start the day and by dinnertime have an appointment set up with the Pediatrician while we wait to hear from the Urologist. Cue the agonizing wait of the weekend to fly right on by.

And now, we wait. So many questions, so little answers. Everything is completely up in the air right now. Things I have been working so hard towards over the summer to make our lives better are currently in jeopardy because her CCMC Oncologist thinks he knows my kid better than I do and brushed us off twice. Between you and me, he's going to get an awful earful the next time he sees us. You haven't seen mama bear mode come out, but it's going to in full force. If he would just have listened to me when I brought this to his attention the first time we either wouldn't be in this predicament, or I would at least have some kind of idea as to what to do. 

Time is running out on a lot of things and like I just mentioned, a lot of things are currently on the line and I don't know which damn way this is all going to drop. Arley and I had so much good things to look forward to and everything seems to be crumbling down around me after I have worked so hard towards these goals all summer. All because someone who thought he was the "expert" didn't take this mama seriously.

To be continued..........