The William Journey 

So one week ago yesterday he started chemotherapy. Trying to shrink the brain tumor. And if it helps with seizure activity that’s a bonus. Which is weird cause a side effect could be seizures. He takes a lot of meds that are to control seizures that can cause seizures. Crazy weird. But chemo just scary.

Epilepsy is just a way of life for us unfortunately. My family is just blessed with of course the rarest form Tuberous Sclerosis. TS TSC. It isn’t as rare as it used to be which is great. William’s neurologist here in Reno was actually the same doctor that diagnosed me ohh so many moons ago. He now has another doctor William sees who is sorta taking over the practice. Which is understandable I’m old af. But he’s the doctor that refered William to his neurosurgeon back in 2007 for his first brain surgery st Lucille Packard Children’s Hospital in Stanford.The removal of his left frontal lobe. Which was to hope to control seizures because no medicine was. We had switched my baby form med to med it was crazy. It was a hard decision to make. Brain surgery on my 5yr old. He was in the hospital on his 6th birthday. But it seemed to work for a long while. With seizure activity at least he wasn’t having 20-30+ in a day… for a while… The left frontal lobe of the brain controls intelligence and behavior. Language and other logical tasks, the left side is generally dominant for language. And controls the muscles on the right side of the body. So my 5yr old almost 6 who was almost potty trained, understand right from wrong, autistic but dealing on the lower scale but would almost only seize scream and sleep… after the seizures definitely slowed wayyy down which was what we we going for but almost completely stopped talking, behavior sky rocketed, not at all potty trained (and still not to this day he’s 14 almost 15yrs old) left handed because that’s what his right side of the brain control. Autism not so much on the lower scale anymore. Don’t get me wrong I’m not complaining the surgery worked. The seizures slowed and that was what we we after. It was still the right decision we made. And speech had gotten soo much better in the last year and a half.

Now let’s fast forward til al lil more than a year ago August. William has yearly MRIs as do I. You know it’s bad when the doctor calls and says we need to get you in asap! Everything has been really bad lately seizures uncontrollably behavior ohh man. And he’s as big as me. Weights more than I do. Hard… just hard… he has been seeing a specialist at Stanford at Lucille Lackard. So we all were waiting for this MRI. —Brain Tumor—  not at all what you wanna hear wanna see! Giant Cell Astrocytoma SEGA Benign thank goodness!!! But it’s in the ventricle going down the spine. It is very AT risk at growing to big and shutting off spinal fluid. Which would cause hydrocephalus, paralyzed or DEATH! Yes.., NO thank you please!!! It’s already sooo big there’s barely fluid going thru!!! — side note Hydrocephalus is which there is an abnormal amount of cerebrospinal fluid in the brain. Because ya know… it has nowhere else to go!

So, last November he was admitted into Lucille Packard taken off all meds and we just waited! Week long of crazy horrible ness. Video EEG. Video EEG records brainwaves on the EEG and video to see both what’s happening during a seizure. Also to pinpoint the region on the brain where the seizures begin. Keeping William in a bed for a week was something also someone had to be away the whole time to record seizures we see. Truly hard. William is stubborn to took him days to seize. Even without meds and he was seizing baddd leading up to the hospital. But of course when he started and we got meds in his system it was hard to get the seizures to stop. He even started these like suto seizures. Like pts from the hospital. It was hard a hard hard week.  We ‘think’ we got where the majority are coming from. ‘Think’ is the crazy thing’!! It’s like by the time the seizures hit his skull they ricochet. But ‘thinking’ we know the region just isn’t good enough to cut his head open!! So, out next step is a Stereoelectroencephalography SEEG which is, electrodes are surgically implanted into the brain tissue. Implant 20-24 electrodes through small holes into the skull about the size of a piece of spaghetti. Using ROSA. Robotic Operating Surgical Assistant. Electrodes are kept in until seizures are recorded usually a week or so. They also send electricity into the electrodes to map functions of the near by brain. As soon as they have all the info needed electrodes are removed. Which is another procedure. And we will know exactly what part of the brain will be removed. Anddd…. that surgery will be scheduled. 

Sooo everything in William’s brain is just sooo everywhere. For the tumor we are trying chemo to shrink it. Hoping that will work even with ALL the side effects. Seizures we will be doing the SEEG to know exactly what part of the back left cranium will be removed. SEEG is still surgery still drilling 24 holes into my sons head! Butttt…. we are pretty sure the region but need to know 100% because there are Vidal functions all around. Which is the reason for not being able to remove the tumor at the same time! The only way to surgically get to the tumor would be thru the same as his 2007 brain surgery. Which wouldn’t be easy but possible. It is more towards the right lobe. But him already without his left frontal lobe… he can not have NO frontal lobes. No front of the brain. 

Just the crazy things I have to worry about with my son. I don’t wish on anyone! If I could take everything away I would in a second. But life doesn’t work that way. I just do what I can and to believe it’s the best and right thing. I really couldn’t do it without Billy. That one person that no matter what, no matter the crap– and yes I mean crap– he is there to do whatever and I smile and know everything will be okay. 

With everything William deals with, with everything he goes through he is always a happy happy boy. Always smiling. If I’m not having the best of times he comes to me and saying ‘Moms having a rough time’ and I say yes William I am and it makes me smile. I love my William and he is amazing. Everyday is just a journey. Let’s see where today brings us.

Only thing I know is he’ll smile through it all!

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Filed under Autism, Life, Tuberous Sclerosis, vent

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