We finally got the results back from our MRI. As we knew, Miles has innumerable tumors in his brain (they won't put a number on it, because, as the doctor said - what's the point?). Unfortunately, we learned that two of the tumors are the most dangerous kind of non-cancerous tumor called Subependymal giant cell astrocytomas or SEGAS. These tumors grow within the ventricle of the brain blocking cerebral spinal fluid and causing severe damage. Up until a couple years ago they were only treated with surgery, but a new miracle drug for TSC targets this type of tumor and has shown to be effective in shrinking the tumors if/when they become a problem. This is the same drug we used to shrink Miles' heart tumor last year; it is a chemotherapy, and comes with a long list of side effects. Fortunately, these tumors don't appear to be blocking his cerebral spinal fluid yet, but we will be watching him very closely.
Pictures are not of Miles' brain because I was too stunned to take pictures - but his MRI looked similar.
This is a 4-month old baby with TS and a SEGA... Miles has two, because you know, he's doubly special!
Our neurologist also believes Miles has started having a type of seizure called supplementary motor area seizures which are uncommon and relatively benign, and hopefully easy to control with an increased dose of the medicine he is already on. We aren't able to confirm he's had these as it hasn't happened on an EEG or video but we're increasing meds and - you guessed it - signing ourselves up for another overnight EEG. My favorite kind of overnight in the city. I suppose on a very strange plus side, the neuro thinks this could be the root of Miles' sleep problems so theoretically if we get it figured out we might all get more sleep... I could get behind that.
The neurologist had a plethora of additional sobering information to hand out that I don't feel like going into right now. Just when I thought we were doing so well my little optimistic balloon popped, but I'm getting used to it and frankly, I knew it was time for some bad news... but... sigh.
I brought back this post title because the concept resonates with me: when life gives you lemons, make lemonade right? But, can I be brutally honest with you? I need some help making lemonade. I cannot daydream about leading a different life - this is my life and I am supposed to make the best of it, but... where's the lemonade? There's a very popular essay Welcome to Holland in which Emily Perl Kingsley depicts her life of raising a child with special needs. I cherish this poem, but I need help finding Holland, and it pains me that I haven't found a way to be drinking lemonade in Holland yet. I remind myself daily, one day at a time but oh what I would give to be in my shoes just two years ago.
Toughen up Dipo, remember you and Miles both got drafted - it's time to fight.
We have a wonderful support network, and because I know you, I know you're going to jump all over this disheartening news with offers to help and for this I love, appreciate and need you. We can actually put you to work this time even from far away! If you want to help, here's how: https://thehomedipo.blogspot.com/2017/03/will-you-walk-with-us.html
Also, if you are in the mood for a philosophical discussion on turning lemons into lemonade, Italy into Holland, employment for the mentally disabled, shifting perspectives and the meaning of life I am ever-game.
I am so sorry, Jenny- and Miles and the Dipo's. SEGAs are not news anybody wants. Your neurologist is not just one man, tho- he is with a group of experts. There is SO much they can do so while in Holland I guess be excited you were not in Holland as little as 5 years ago! And when counting chickens before they hatch remember not to discount the ones that you don't think will be as promising as the others because nobody knows either direction! Even now you have likely met some incredible nurses, doctors, therapists... and talked with some parents in waiting rooms in their own part of Holland. The google button on your computer has brought you into a whole new world for likely many reasons- the lives Miles will touch and the people you would never have met otherwise. These connections may have many purposes we can't possibly fathom. Some days like this are deserving of a huge scream of frustration! Other days Holland isn't so bad. Every cuddle, every milestone even later than others is an amazing moment savored. Nothing is ever taken for granted in Holland. Tomorrow my girls swim at BI Aquatics and they are learning and having fun and spreading sunshine all over Holland. Want to join is? Hugs to all!
ReplyDeleteThank you - all wonderful points. You are a beacon of good information and inspiration.
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ReplyDeleteJenny, It's times like this that there isn't anything someone can say that will ease the pain, and the lot that you, Miles and your sweet family are having to go through. Count Shane and me in on donating to the walk. Your family is always in our prayers. We love you guys and wish we lived closer so could do more to help.
ReplyDeleteThanks Kamber and Shane it means a lot to us. Dealing with major life changes you never wanted or planned for SUCKS. Am I right? You know it better than most.
DeleteWell, I guess it depends on what the definition of lemonade is. In my dark days, my mom reminds me that's it's ok to just survive, not worry about the "Thrive!". Especially after a round of gut punches like what you just got. I guess where this fits in to the metaphor is: don't beat yourself up about not being in Holland. Is ok to just focus on staying on the road for now. You'll get there soon enough. We love you guys!.
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