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indeliblesashaGus 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. :)
http://www.abta.org/understanding-brain-tumors/types-of-tumors/ependymoma.html
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. :)
http://www.abta.org/understanding-brain-tumors/types-of-tumors/ependymoma.html
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Date: 2012-10-10 09:41 pm (UTC){{{Gus}}}
{{{you}}}
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Date: 2012-10-10 10:36 pm (UTC){{{{{hugs}}}}
Also, thank you for keeping us updated at what must be an immensely stressful and painful time!
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Date: 2012-10-11 01:29 pm (UTC)no subject
Date: 2012-10-11 06:03 pm (UTC)no subject
Date: 2012-10-12 01:32 pm (UTC)no subject
Date: 2012-10-15 11:25 pm (UTC)no subject
Date: 2012-10-16 02:36 pm (UTC)no subject
Date: 2013-03-21 11:38 am (UTC)no subject
Date: 2013-03-22 04:43 am (UTC)They told him the blood pressure cuff was just a tight hug on his arm. After a few days of those "hugs" he started refusing to allow his father and I to hug him.
They told him he was "going to sleep for awhile" when they knocked him out for surgery. He woke up in terrible pain with a 5 inch line of stitches down his neck. So for two weeks after surgery he panicked every time we put him to bed because we was terrified of waking up with more stitches.
It was 10:30 at night, two weeks after his surgery, when it all finally clicked for me, and when he woke up in a terror we had a long conversation where I explained everything to him in very large words and apologized for confusing him.
Since then we have just told him exactly what is going on every step of the way, using the medical terminology that the staff uses so he can always know what we are talking about. I should post the video of him I took on Monday describing how chemo is administered. It's pretty awesome. We have a lot of stories of him getting irritated with nurses forgetting and using small words and he corrects them.
He's fairly bright (I asked him what A stood for last summer and he said "apatosaurus!" for example,) and while everything he's gone through has rightfully terrified him, he understands. More than he deserves at four years old, sadly.
He had a tumor in his head that was squishing his brain and gave him headaches and made him throw up, the doctor took it out and his headaches went away. His tumor is called cancer because it can grow back, so we used propofol to sedate him so the doctors could point radiation at the place where the tumor was to makes sure that if any cells were still there, they couldn't grow again.
He has to have chemo in case the radiation missed any cells, like if they moved where the radiation couldn't reach them.
He knows that when it's time to take his port of out they have to "tear" his skin, and he's pretty upset about that, but he understands that surgery put it in, and surgery must take it out.
He understands what a pulse/ox monitor is for, he knows we do blood cultures to check for bacteria in his blood and CBC panels to "check his numbers" and he know that small numbers mean no trips to the community center and big numbers mean we can go to the museum. Blood pressure cuffs check how fast and how strongly his blood is moving from his heart to his body.
Two weeks ago we went over the process for blood transfusions.
He knows the steps for administering medication through his central line, and frequently demands that he get to do the line flushing himself, and when he's tired of being tethered to an IV pole he asks the nurses to "hep lock" his line so he can run around.
When the pump that pushes his antibiotics is done it beeps, very fucking loudly. He pushes the button to call the nurse and says "It's me, Dus. My pump is done can you come make it stop beeping?" if I don't get to the silence button fast enough.
I nearly died laughing the first time he did it.
Also, he gets a lot of anti-anxiety medication before we go in for every appointment because we can't keep it simple enough for him to keep him for melting down because he's tired of it all and scared and overwhelmed, he understands too much and the best we can do is treat his anxiety and let him spend time with our social worker talking about how he's feeling and keep him as informed as possible so he feels some small measure of control.
I maybe should put some of this in the giant wrap up post, I think. :D