When Life Gives You Lemon-Shaped Tumors: Part Two

Do you have those days when you just can't help but feel somehow you made a very wrong turn in your life? When you look at someone else and think that's how my life was supposed to be... what did I do wrong? It was one of those days.

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.

Springtime for Miles

Spring is here. With the turn of the season, the sun is coming out and the air is thick with moisture as it's wicked away from the saturated moss blanketing Bainbridge Island. Miles' appointments are spreading out; doctors are starting to let down their guards. To the surprise and delight of all, our little miracle boy is meeting his milestones. We are just about done fine tuning our medical team and are settling into a rhythm with a wonderful team of nurses and doctors. 

Over the last couple weeks we had a handful of really big appointments. We had another EEG, met with a neurologist, visited our pediatric neurodevelopmentalist, had an MRI done, and met with a new cardiologist for an echo and EKG. 

This was our first time not doing an overnight EEG. Since it's only a couple hours, they don't have to glue on the probes, but that means you have to keep your little guy still and on his back the whole time. I had to lay on top of Miles while keeping his head between my hands just so he could be still enough to get the probes on. After he was wrapped up I thought he'd be able to play, but not so, he had to lay on his back the whole time. He was so miserable he fell asleep (which was a blessing) but then SEVEN minutes later they made me wake him up because the technician had to go to lunch. It's tough desperately wanting to play the part of mama bear when you know you're going to be receiving care regularly from these people for the rest of your child's life. But ser.i.ous.ly.

Fortunately, it was all worth it - his EEG came back normal this time! Not even any brain wave slowing or whatever the heck they had me all worked up about last time. I am now jaded enough to know that next time we'll get terrible news all over again because that's how they roll, but for now, huzzah!

MRI's are not fun and particularly stink when they require sedation which means fasting. But they are made more fun when grandma comes along and makes everything better. 

Laughing gas while getting the IV. (I wish they would do that every time a kid needs a poke.)

He fought the anesthesia hard, but finally succumbed and was wheeled away for the MRI. No results yet.

Our echo was at 7:30am at Children's which meant a 5:30 wakeup call for Miles but he was such a trooper. Want to hear a funny joke? Put twenty cords and stickers on your 10 month-old's tummy and say don't touch and keep still. HAHAHAHAHA. 

Ha.

(PS this is what an EKG looks like.)

I kept bracing myself for the bad news but at every appointment the doctors marveled at Miles' progress and commented on how engaged he seemed to be - it was truly good news all around. The neurodevelopmentalist was shocked this was the same kid he saw only three months before and both he and the cardiologist said they thought this would be their best appointment all day. I hate having to put him through all of this but if enduring early mornings and some rough appointments is all I have to complain about, I have A LOT to be grateful for. Bring on the sunshine.