yesterday we received almost 150 pages of medical records from Mass General, I read almost every page, it was fun to read what everyone else’s observations were of me and Connor, there literally is a note from each day, I realize too, I am that annoying mom, every day I had concerns that needed to be validated, the notes were things like:
“Connor was agitated coming back to holding”
“Connor is adjusting to the center”
“Connor loves assisting with his lines”
“Connor loves going to treatment room from holding and change the lights”
“Mom was concerned about x, validated moms feelings” -that one was almost everyday
“Connor loves music therapy”
“Connor loves walking around the holding room, gets agitated if he has to wait to long”
“Connor is not happy when he is transferred to stroller, mom controls him and calms down when he gets something to eat”
“Connor enjoys his time outside of the center with his twin sister Claire and younger cousin Jimmy”
“Dad arrived for two weeks, Connor is enjoying family time”
“Connor enjoys the other children at Christopher’s Haven and has gained new skills while staying there, mom informed he climbed up onto furniture for the first time”
“Connor is very active outside of treatment at the children’s museum”
“Connor rang the bell today, with all his admirers”
In other words, Connor was a normal, strong willed, stubborn, active toddler, something we often forget as we are so in the trenches of the here and now, this dreadful decline.
Today at clinic Casey showed me a video which was from around thanksgiving, he and Con were throwing a football back and forth, not only were they throwing but Con was perfectly catching, and he would perfectly say “hands out, ready” informing Casey he could throw, and laugh hysterically each time he caught it, it is hard to remember some days he could do any of that, especially the perfect vocabulary and dictation. Tonight Con and I watched lots of videos on my phone of him and Claire, it really was amazing how well he was doing just a few short months ago, if he wasn’t bald with a huge scar I am not sure if anyone would have thought there was anything wrong with him.
So that brings us to today, we are definitely seeing a decline, from his sleepiness, to inability to process/answer questions, to some very odd movements of his tounge, and much less desire to eat, all of what we have seen was validated by the professionals today. He also threw up twice today, once at clinic which did not help our case. We were offered to start Decadron right away, decadron is a steroid and devil drug, it makes them hungry (which as the NP said is a catch 22 in our situation given he can’t eat fast, etc.) irritable, and blows them up (this drug is often why you see the huge change in appearance of brain tumor kids). We declined but took the prescription, decadron does help with swelling and pain from headaches and there will be a point we will need it and that very well could be before our next clinic visit, but I want to wait until he is in pain we can’t manage through Tylenol, throwing up becomes a bit more persistent and sleeping increases a bit more, once we give decadron we are saying goodbye to the small piece of sweet Connor that we are holding onto so tight as it just alters his personality so much. We were also offered a scan even though our last was only 3 weeks ago as the symptoms are consistent with some meaningful progression, we declined the scan because the medical reason for the scan was to help us make a decision on whether to discontinue his avastin, if the scan was very bad which it likely would be we would likely lose our insurance approval for the Avastin. Avastin is anecdotedly designer decadron so we have no desire to lose it, it is also about $6k an infusion, so we don’t want to be paying the full amount out of pocket, as a result we declined the scan. Connor has no adverse effects to Avastin and for the time being seems to be effective in keeping swelling at bay. Lastly, we have agreed to start having the in home/hospice nurse come weekly, it is time for her to get to know Connor. It is not to care for him, but symptoms are changing pretty rapidly and she needs to know what is going on to facilitate us getting the meds and care we need in our house, so that will start this week. She can then come anytime we need her and as many times as we need her. So that’s it in a nutshell, not great news, but Connor seems to be somewhat happy and really enjoys hanging with Claire so we will hold onto that for now. Claire always wants to get traced on the driveway then decorate herself, yesterday, Connor got a turn, I hope it never, ever washes away!