Our Heads are Spinning

I mentioned in our last post we have no idea what to think or what is going on medically, the imaging just does not support how he is acting clinically. As a result we have reached out to many specialists and opinions/theories vary considerably.  The consensus there is probably a lot of progression we are not seeing on the MRI’s because the Avastin is masking it (this is complicated but how I explain it in Erin words is the Avastin stops the tumors from taking in the contrast dye that makes them show up on the MRI).  Dr. G., a doctor that heads up Lasar ablation at Rutgers and now Morristown after hearing the theory from others is in this clinic.  The dr at Pitt who created Lasar ablation told us it is all radiation damage, not tumor (he is on an island with this theory and a lot have nuero radiologists have reviewed the scans and not mentioned this at all, but if this is the case it is the fear I was freaked out about this summer when we were told we would be radiating the brainstem, we even backed off the maximum dose because of my fears/concerns about radiating my two year olds brainstem so if this did happen it really would be the perfect storm), the last school of thought, you should be celebrating scans look great, sorry you don’t think he is clinically (Boston Children’s, Clevland Clinic), so to say our heads are spinning is an understatement.  Because Morristown’s equipment isn’t quite where NYU’s is we are tentatively scheduled for another MRI next Friday and they have some technology that can help potentially define the Timor better and really show us where it has grown and explain some of what we are seeing clinically.  It will be good too because it will be exactly four months to the day of when we got the really bad news, we have not been back, I wanted to go one last time for closure and I am hoping that even though it is the Friday before a holiday weekend Connor will get to see some of his favorites.

As for what I mean by clinically, he still can not do anything, but he has been much more alert.  Yesterday was a great day, he was imitating me (something he was unable to do and today is unable to do again, but yesterday made my day) and making so many happy sounds!  Today however was a bad day, we think he is pain, he woke up at 3 am and was ready to interact, I did because it is so rare these days, but then just could not get himself comfortable, he was cranky this morning then settled for most of the day.  When Casey got home though it was something unlike we have seen before, he was flailing, whining and saying “all done” over and over, nothing would calm him at all.  We think the “all done” was him telling us something hurt and he was all done with it.  When it first started Casey thought it might be a siezure, but it lasted way to long, we gave him everything, Tylenol, atavan, zofran, kepra and finally morphine, he finally calmed down and has been okay all night (still up and has a very short fuse, Mickey is on a loop and we need to be on top of starting the next one or he loses it).  Our in home/hospice nurse can come either tomorrow or Wed and we are checking in, in the morning, so depending on how the night goes will determine when she comes.  

So that’s it, not going to get into detail on my meeting with the Motown team as it is depressing and will help no one.  We also need to meet with the palliative care team Friday to really lay out a plan.

Here are a few from yesterday:




2 thoughts on “Our Heads are Spinning

  1. Endless prayers and love. It is not doubt depressing and devastating. Hope you get some clinical leads about what you’re seeing.

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