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***Overdue Update***

Last week Kai had his routine 3 month MRI.

Again they said it was stable.  They said the tumor looks ‘exactly the  same’ as the last MRI.  Of course this is what we have told to hope for…

They have said all along that this chemo protocol is ‘not intended to shrink the tumor’ the goal is to keep it from growing further, but as I have talked to other optic glioma families, I have not met one that had NO shrinkage.  From what I have heard from other families, they have all had shrinkage right away, and in some cases the shrinkage is pretty significant.

But not Kai, we are stable.  No signs of growth and no signs of shrinkage. This time around I sensed a bit of disapointment from the team with this result.

All thought the results seem pretty clear cut it ended up being a long meeting.

After reading all of Kai’s reports from the last three months his doctor had a lot of things he wanted to discuss, dispite the fact the MRI was stable.

-Kai’s TVI (teacher of the visually impaired) and I feel that Kai’s right field vision has gotten worse over the past few months. We were always told that change in vision, potentially caused by tumor growth, often shows up before the growth will be cleaner in the MRI. We are all concerned about this change in vision, but since we just had our first official field vision test a few weeks ago, there is really no way to say for sure there has been a change…therefor we can not use this as a reason to reconsider the protocol.

-Kai is not as stable when sitting lately.  He is listing to the right a lot.  We have found ourselves needing to prop him up in his highchair or his stroller, things we did not have to do a few months ago.  He also rocks a lot more and gets very shaky when using his left arm sometimes.  These are all things that have been brushed off as effects from chemo in the past, but this week he was clearly having trouble and he has been off chemo for two weeks now.  Again, would this be signs of tumor growth?  Could it be effects of chemo toxicity?  Could it be neurological change unrelated to tumor growth?

-Kai has been having unexplained ‘congestion’ for months.   He has had colds and ear infections off and on which is obviously a normal cause of congestion, but his overall congestion seems to be caused by something else.  He has been grabbing and pulling at his ear and head, as if he is in pain even after the ear infection had cleared.  He is getting a bunch of teeth which could account for many of these symptoms, but at this point  everyone was a bit concerned about his breathing, swallowing and discomfort.  Because of all of this, his doctor is taken him off of one of the chemo drugs (vincristine) until we meet with a team of ENT specialists next week. Vincristine can have some side effects similar to Kai’s symptoms, but no one seemed that confident that that was the cause.

He has also been having a harder time swallowing clear liquids lately and is choking on his spit fairly often.  They will be doing a swallow test on him next week and, even though I promised Kai I would never do this again,  we may be repeating the sleep study to test his breathing again……

Given all of these concerns I don’t think his doctor was too happy.  He spent a lot of time listening to our concerns and studying and showing us the parts of the MRI that apply to those concerns.

As the weeks go on I can sometimes forget how truly big this tumor is, until we see it again and it just takes over.  His tumor is very large, we knew that. No matter how much ‘the same’ they say it is, it seems like every time we look at one of these MRI’s  we hear  something new.

This time we talked about a cyst that is also in there, apparently not a big deal and  nothing new but somehow i didn’t  know about it before….

The doctor also showed us how there is evidence of tumor in the brain stem which could account for some swallowing and breathing problem,  again, this was the first I was hearing of it…

I don’t think anyone left that meeting feeling very happy about our stable MRI this time.

For now the plan is to stop the vincristine until the ENT/ORL team can see us next week.  We have 4 appointments next week and we spent the day at Dana Farber today meeting with neurology and oncology.  We decided to skip this week of chemo altogether and see if we have any improvements with a little extended chemo vacation.   

I will say the past few weeks have been a bit rocky, but we have had some good times too.  All though he still fatigues easily, he has been a bit brighter since being off chemo a few weeks.  We have seen a few smiles, and heard a few noises (besides whining) out of him the past few days.  He has even been baring weight a little this week, something he has not had the energy to do in a very long time.

I guess at this point I will say what they always say at the clinic “we are cautiously optimistic”  

4 thoughts on “***Overdue Update***

  1. you are so amazing Kerri – your strength and fight are truly exceptional love you and thinking of you all hope to see you all when I get home in April – love the two sleepy men pic xo xo Joanne

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