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.  

Rocky Road

I'm officially the worst blogger in the world.  Before you cross us off your list, please hear me out.  Reason #1: We still need to buy a home computer.  With so many other priorities in our life, that task keeps getting pushed further down our list.  Someday we will and then I will be a great blogger once again.  Reason #2: I'm exhausted and truthfully don't know what to say about our current status. 

Our goal has always been to stay positive, be grateful, and joyfully endure this journey.  As hard as those first days, weeks, and months were along this road, we believe we've now found the low point.  It's like climbing up that hill only to get to the top and realize you are at the base of a mountain.  When we first were told the diagnosis, one of the reassurances our drs emphasized was that Mitchell's personality would not be affected.  I wouldn't necessarily say his personality has been affected, but maybe that he's added a new one?  For some moments he is our gentle giant Mitchell, expressing love and affection to all around him.  A split second later he is trying to bite, hit, claw, or pull our hair for absolutely no reason at all.  And the crying...oh the crying!  In an effort to both teach and control, he has to be isolated quite often so our other babes don't get hurt.  We've had some pretty serious injuries and don't want to find out what else could happen.  It breaks my heart to put my little angel in his room for so much of the time.  Often he'll read books or play with toys to calm down, but occasionally I will go to get him and he's just laying on the floor staring at nothing and it makes me so sad.  Then when he cries and says, "I'm so sad!" I want to cry right along with him.  He still seems to be so close to the spirit.  He continues to offer spiritual insights that amaze us.

We want to be careful not to label Mitchell or make him sound like he's been spoiled or is just acting out.  It really is more than anyone can understand until they've spent time with him.  One thing we know for sure is this clearly is NOT our Mitchell.  Our hope and prayer is that we will be able to find help for him so that he will be able to live and not be stuck in this miserable half-life.  He's such a beautiful, sweet boy and we love him so very dearly.  We are going to work tirelessly until we figure out how to help him.  Just tonight my brother called who happens to also be a DPT and he mentioned he felt it had to be the amygdalas.  As we've been reading we have to agree that seems the most obvious culprit, but then why wouldn't our drs/therapists think of that?  Too obvious perhaps, but something to look into for sure. 

One thing we would like to clarify as well is the presence of Mitchell's tumor.  We've noticed that many people think Mitchell is great now, no cancer, etc.  Mitchell will always have his brain tumor (of course unless a miraculous healing takes place) and will be subject to it for the rest of his life.  He will have MRIs every 3 months for the next couple of years and then every 6 months and then every year for the rest of his life.  This is never going to "go away."  Not only does he have the tumor (which theoretically has a terrible prognosis) to deal with for the rest of his life, but he also will likely have side effects of radiation and chemotherapy to deal with, along with his physical impairments.  This behavior issue seems to be a result of treatment.  We feel if the tumor was growing it would result in more physical symptoms as it did before. 

Because this is something we will always be dealing with, we will always need prayers, love, and encouragement.  We really appreciate any one of those three.  We have a lot to be grateful for and know that "this too shall pass."

I'm so grateful for pictures to capture good moments...it helps make the bad memories go away. 

 Beach in CA

 Love this picture from Space Mountain