(no subject)

Oct. 10th, 2012 02:53 pm
indeliblesasha: Tinkerbell resting her head on her arm, looking sad. (Misc - Tink)
[personal profile] indeliblesasha
Gus is 3 years and 9 months old, and on Monday October 1, 2012 was diagnosed by MRI with a brain tumor growing on his brain stem and causing hydrocephalus and resulting in headaches located between his eyes and at his temples, and vomiting, both symptoms becoming worse after laying down. He suffered no neurological effects prior to surgery, such as trouble walking, swallowing, facial expressions, or coordination.

On Friday October 5, 2012 in the course of a six hour surgery at Children's Hospital in Colorado -a Top Ten ranked facility in the country for cancer treatment- his doctors were able to remove the entirety of the tumor, the report from the follow-up MRI states "without evidence of remaining tumor," it was only attached to the brain stem in one small location and came away from his cerebellum without much trouble as well.

He is home now, stretched out on the couch and in considerably less pain than previous days. The pathology of his tumor came back this morning, and he has an anaplastic ependymoma, which is a grade III, fast growing tumor.

This wasn't here for two years, it's likely been growing in the last six months to a year. The oncologists don't tend to refer to brain tumors in terms of "cancer" the way we think of cancers in the rest of the body. If you get cancer in your foot, they can cut off your foot. But this is definitely what we regular people would think of as Brain Cancer.

He will begin five weeks of radiation directed at the location of the tumor (instead of his whole brain or spine) in 30 to 50 days. He may have chemotherapy following the radiation treatment, but we won't know that until later. This therapy is done in an effort to kill any remaining cells that cannot be seen, to protect against regrowth.

We have had many successes in the course of discovering and removing this tumor, the first being how soon we caught it. It is an absolute blessing that we caught it before he had neurological damage. We were able to not only find it quickly but get it removed quickly, and completely, without consequent damage to his brain from the surgery.

After the surgery he had a drain placed into his brain to drain off any excess cerebral spinal fluid that the brain was not absorbing on its own. 50% of patients have this drain placed permanently, as the brain never recovers the ability to absorb the fluid fast enough. Gus did so well his drain came out Monday without hesitation. This prevented a lifetime of having to be cautious of infection at the drain site, and consequently his brain.

He has bounced back amazingly quick, and while he *is* in pain, he is moving well and absolutely himself, if a bit grumpy.

Next week we will have the final information about the tumor (there's a genetic component to the tumor itself that will tell his doctors if they need to monitor him more or less closely in the coming years for possible regrowth) and the schedule for his radiation treatments. I am building a website where will be able to share updates and info and data with ease, and once I have it set I will provide a link and you are welcome to check in when you can. :)

He will be getting followup MRI's every three months for at least a year, and regularly for a few years after that. The radiation can potentially impact his brain development and so he will be monitored closely for many years to ensure he's growing and developing and learning like he should (but the ability to radiate only the tumor site will hopefully limit damage.)

I want to thank you all for your prayers and support and kindness during this unbelievably stressful and terrifying time in our lives. We have had many blessings and we have a long road ahead and I don't have the words to express how much our friends and family standing with us has meant. We will continue to need prayers and positive thoughts that the radiation gets it all, that it does not come back, that his brain itself is protected from the damage of the radiation. The odds are in our favor, but a little positive energy from the universe never hurt anyone. :)


Date: 2012-10-10 09:41 pm (UTC)
kass: Eleven and Amy hug. (hug)
From: [personal profile] kass
I am so glad the surgery was successful, and so glad that the drain came out quickly -- those both seem like good signs, and I will continue to hope and pray for more good outcomes for him and for y'all.



Date: 2012-10-10 10:36 pm (UTC)
cathexys: teen wolf: stiles and dad hugging (twolf hugs)
From: [personal profile] cathexys
All good thoughts and then some for you, Gus, and the rest of the family!


Also, thank you for keeping us updated at what must be an immensely stressful and painful time!

Date: 2012-10-11 01:29 pm (UTC)
willidan: (Default)
From: [personal profile] willidan
That is amazing, wonderful news. I'm so relieved for you and Gus and your entire family. I'll continue to pray for you all and I hope that he doesn't suffer too much from the follow up treatment.

Date: 2012-10-11 06:03 pm (UTC)
heartequals: natasha from the avengers against an orange and yellow background (Default)
From: [personal profile] heartequals
I'm so so glad everything went well. You and your family have been in my thoughts. More good thoughts coming my way to you for a good and quick recovery and for continued good treatment <3

Date: 2012-10-12 01:32 pm (UTC)
lone_lilly: (ga; an upside to free-falling)
From: [personal profile] lone_lilly
Praying for your family. <3

Date: 2012-10-15 11:25 pm (UTC)
dorkpie: ([labyrinth] sarah: not that kind of prin)
From: [personal profile] dorkpie
My thoughts are with you.

Date: 2012-10-16 02:36 pm (UTC)
ainsley: (Default)
From: [personal profile] ainsley
I'm so glad to read this, and I will continue hoping/praying for a good outcome.

Date: 2013-03-21 11:38 am (UTC)
altamira16: A sailboat on the water at dawn or dusk (Default)
From: [personal profile] altamira16
What did you tell your son to help him prepare for the treatment he had to undergo?