Mitchell's 5th Birthday

Mitchell's 5th Birthday

Mitchell's 4th Birthday

Mitchell's 4th Birthday
February 2011
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Nov 2010

Mitchell's 3rd Birthday

Mitchell's 3rd Birthday
Feb 2010

Sunday, May 20, 2012

Mid May 2012

The first two are facebook posts...

Monday, May 14th: Quarterly MRI
Just have a second to update, but it was as we expected to hear. Two spots showed up away from the origin of the tumor. It's a 50/50 chance it could be new growth OR pseudo-growth. We knew coming off the avastin, which reduced inflammation, that we could have some tricky scans. It could be that those spots absorbed the contrast more. The origin of the tumor stayed the same, which is usually the most potent and reoccurring location. Also, inflammation is non-existent, which usually goes hand in hand with regrowth. Tough to say. They'll discuss at tumor board and we'll have a follow up MRI in 6 weeks. Neuro-psych evaluations tomorrow and possibly neurology.

Wednesday, May 16th: After seeing neurologist
Just finished our Seattle trips. Neuro-psych was fine yesterday. Mitchell was able to get through all of the cognitive exams and we'll hear back on the results in a few weeks. 

We drove back this morning to meet with the neurologist and he prescribed risperidone for us. We weren't really expecting to start off with such a "heavy hitter" of a medicine, but they are starting him at a low dosage. The doctor said that medication management is a trial and error process, but he felt this particular medicine could really help the range of symptoms Mitchell is experiencing. The thought is that whatever the cause (biopsy, radiation, chemo) the areas of the brain that control impulsivity have been interrupted. The goal of the medicine is to slow the impulsivity so that he has a chance to process thoughts before acting out. We are really hoping this well help. Mitchell is very frustrated that he cannot control his anger. He wants to be happy and have fun with others so badly. We want our little sweet Mitchell back on a full-time basis.

Tumor board met today and they are leaning towards thinking it is the avastin wearing off causing an increase in the imaging enhancement. The radiologist that works with the tumor board compared Mitchell's original growth from Apr 2010-Nov. 2010 and this looks nothing like that. Originally the enhancement (or brightness of the tumor on the scans) was the same and the flare (inflammation/size of tumor) changed/grew. This time the enhancement is brighter, but the flare stayed the same. Hopefully that makes sense. In sum, we have to wait for a new MRI scan (June 22nd), but members of the tumor board think that the "new growths" are more likely the results of treatment and not the tumor actually growing. That is what we are hoping for (as the tumor growing would be very very bad news). So, that is encouraging. All in all, despite what the board says or doesn't say, we remain optimistic. Mitchell has beaten the odds so far and there's no reason to stop believing.

UPDATE May 20th, 2012: On medication 4 days
We aren't noticing too many changes yet.  If I had to decide, I'd say his behavior is worse--he's done some pretty strange and yucky things the past few days.  He does seem to be even groggier and more tired if that's even possible.  The dr said it might take a week to see effects, so we're crossing our fingers.  His quality of life is terrible and he often cries saying, "I don't want to be angry!/Sad!"  It is so heartbreaking.  We're trying to not look into things too much, but he does seem to be dragging his left foot a little more and his eyes are not opening as wide anymore (his original symptom of the tumor).  We honestly try not to think about the what ifs and analyze what's happening.  All we can really do is enjoy the good moments however sparse they may be.  We just want this little guy to feel peace.  

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