I work with children that have Autism, and I found out today one of the kiddos I work with has been diagnosed with an untreatable brain tumor on his brain stem. Prognosis is very poor, with the doctors saying he has a matter of a couple months left. He is 6 years old. I have known him for close to three years. Recently we began to see an increase in behavior problems, he began to stutter when speaking, and a loss of skills that he has had for years. The final straw for the parents taking him to the doctor was when his eyes began to cross and he lost some use of the muscle in his face. The tumor is inoperable and the doctors advised against radiation therapy.
I am so, so indescribably sad for his family. He is one of my favorite kiddos, too cute and truly hilarious, despite his limited communication skills. While I am used to getting extremely attached to the kids, I have never dealt with somethings like before and I am at a loss. Its funny how something happens that makes your problems seem so insignificant and make you feel like an idiot for worrying about something so stupid.
When my husband was dying from leukemia he'd often go over to the children's hospital next to the university hospital. He said it put his problems in the proper perspective to see the sick or dying children. Even in our worst and hardest situations there are always people worse off than we are.
I am a social worker at a top 10 hospital for hem/onc and rad/onc oncology (head, neck, and lung). I work primarily with adults, but we do share a radiation department with the children's hospital. So depressing.
Some days totally, totally suck. But, whenever I have a "bad day," I just take a step back and realize my bad day is NO WHERE close to their bad day. We have many patients who have stage 4 lung cancer that have never touched a cigarette. Talk about bad day.
So sorry to hear about your kiddo...sometimes life really does stink
(another reason why I will never sell my horse...he is my escape!)
I teach 8th grade and I've had two students over the years with some type of cancer. One had an operable tumor near his brain stem and then received radiation. The other had leukemia and is currently in remission.
It was incredible how stoic both kids were. They came to school when they could, and when they were recovering from a major procedure or were too sick from medications, we sent a teacher to the house for home-bound instruction.
Both are now in high school, are healthy and leading active lives.
The first student is an avid hunter and actually created (with his family's help) a non-profit designed to allow kids with cancer the opportunity to learn the basics of hunting (safety, shooting techniques, camping, etc.). He says, at the ripe age of 17, that is the best thing he's done in his life. : )
I'm so so sorry.... You are so right though, when something like this happens to someone you spend a lot of time with, it makes everything else seem so much less significant. It makes me wonder why it takes bad stuff to make us realize how really lucky we are.
When I was going through a really rough time, I found out that a kid who I had spent time with at an orphanage in South Africa passed away from a terminal illness. At the age of 14. It made me realize that no matter how huge my problems seemed, in the grand scheme of life they really weren't that significant, like you said.
Hugs to you, the kid, and his family.
"Choose to chance the rapids, and dare to dance the tides" - Garth Brooks
"With your permission, dear, I'll take my fences one at a time" - Maggie Smith, Downton Abbey
So many hugs for you, the kiddo, and his family. I can't imagine going through that, for the kid or his family. Hug where you can, bring happiness where you can, and know that that means so much. It never feels like enough, but it matters so much.
Donna's Cancer Story on the blog Chicago Now (and published on huff post this year too) changed my life, or at least my perspective. It's a daily installation of columns detailing each month of a little girl's battle with cancer. It is simultaneously the most heart wrenching and beautiful tribute. I read it last year and have thought of her nearly every day since. It certainly shakes me out of myself when I need it. Her momma is just amazing, too :-)
Last edited by bits619; Nov. 3, 2012 at 12:31 AM.
I thought of this thread today. My step-daughter has a friend with a young daughter who was also diagnosed with an inoperable brain tumor (DIPG) in January. The friend has kept a blog of their journey. She has an amazing way of writing from the heart to share her thoughts and cause you to reflect on what you have. Her blog can be found at http://www.cheeringforcaitlin.com/. There is also a Facebook group: https://www.facebook.com/groups/295481080513835/.
Just had a wake-up call myself: a long-time friend of mine was killed in a head-on accident on Sunday, and she left behind her five children - the boys have Autism, but the girls are typically developing - and a devastated husband. One daughter is still in the hospital, but she'll be ok physically.
The man who was driving the other car made an illegal lane change over a divider in her lane to pass a car over the hill may not make it himself, and his wife was badly injured as well.
My take on this:
YOU are irreplaceable.
You are precious to somebody.
Slow down. Count your blessings. Always, always take a moment to tell someone you love them.
Life is far too short.
Don't tell me about what you can't do. That's boring. Show me what you can do. - Mom
I've had 5 friends with brain tumors over the years. My friend in high school lived, altho years later her daughter was murdered by a coworker. The coworker was never arrested. (And my friend's other child was born physically and mentally disabled, and her husband divorced her soon after that birth.) Of my other 4 friends, 3 died, and 1 lived. I helped one of them through 3 years of treatment, as he worked in the same office and was a personal, platonic, friend. He died. The last friend who died was the friend who helped me find Cloudy. She left 2 preteen sons (by her first husband who was killed in a farm accident) who were adopted and raised by her sister and sister's husband. (I tried and convicted my friend's 2nd-husband for murdering one person and for trying to kill her.) One of her sons had been diagnosed with juvenile diabetes 6 months before her tumor was discovered.
I've seen so many child molestation victims and rape victims and families of murder victims over the years that I never feel sorry for myself very long. I have one friend who was paralyzed for c-11 down in an auto accident, not her fault. She then went to law school and is a magistrate in Atlanta. If she can do all that, I can manage minor problems. I have another friend who was shot (he was a cop) and is paralyzed from c-4 down.
I was hit by an 18 wheeler on I-75. I wasn't injured badly, but 2 of my aussies were killed when we were hit from behind. I don't think that anything that has happened to me or that could later happen to me could possibly be as bad as what has happened to my friends and to "my" victims over the years as a prosecutor.
I listen to people whine about trivial things and wonder why they don't realize that so many people are in constant pain from cancer or hungry or homeless.
Life is so much more important that material things. We have to appreciate the time we all have with our loved ones, both human and animal.
I work with blind or visually impaired adults and tomorrow go for a job interview to work with people who are Deafblind. (fingers crossed). I live in SW VA and work in the "coal counties". I can't begin to tell how many wonderful people I have met in "Appalachia". Men who have worked all of their lives in the coal mines and are the nicest, most polite people who truly have class. One man walked, WALKED ten miles each way to work in a coal mine all day. You know what? Some of the most wonderful ones are the people (men and women) who had to quit elementary school to help at home. They may not be "educated" but they are smart. These are the people who will survive because they know how to take care of themselves. They can garden, can, hunt and deal with disasters.
Me? I hope I have learned enough from them to deal with whatever life hands me.