a friend of mine has a son with a brain tumour and she wanted to share their story here, as a way to create awareness about brain tumours. please read her story, their story and donate to the spring sprint!
thanks.
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(This post was submitted to bear & lion by a mother of two beautiful children ages four and eighteen months old. She chose to omit identifying information regarding her son and his specific diagnosis because of her son’s young age. She feels that he should have some informed consent when sharing his story.)
be·nign (b-nn)
adj.
1. Of a kind and gentle disposition.
2. Showing gentleness and mildness. See Synonyms at kind1.
3. Tending to exert a beneficial influence; favorable: a policy with benign consequences for the economy. See Synonyms at favorable.
4. Having little or no detrimental effect; harmless: a chemical additive that is environmentally benign.
5. MedicineOf no danger to health; not recurrent or progressive; not malignant: a benign tumor.
My nearly five year old son has a benign tumour growing in his brain, on his pituitary gland to be specific. Thefreedictionary.com and most of society will tell you that a benign tumour is “of no danger to health”. I am here to tell you that there is nothing “benign” about brain tumours.
My son is my first born and it was apparent to me, his mother, that something was not quite right from the time he was six weeks old. He was not smiling when he should have been, holding his head unsupported or making eye contact. His growth was slow despite nursing around the clock and his interest in his environment did not match his same age peers. I discussed my concerns with his pediatrician and was brushed off as a nervous first time mother. My son’s delays continued. He was not able to sit unsupported until he was eight months old, could not crawl until he was 15 months, and took his first steps at 17 months. He spoke his first word at 21 months, “more” and struggled to communicate. His pediatrician again, brushed off these concerns. My little boy had referrals and support from Occupational Therapists, Physical Therapists, Resource Consultants, Infant Development experts and Speech and Language Pathologists, but no diagnosis. At two years old I demanded action, knowing that something was not right.
We received a referral to a genetics department in a leading pediatric hospital some ways from home. We spent hours discussing my son’s development and growth, and had blood work and x-rays completed. Nothing was confirmed, no diagnosis was made. Benign brain tumours typically cannot be detected though blood work. We waited and continued our battle to find the cause of my son’s delays. We requested another referral, this time to a Developmental Pediatrician. Another long meeting where development was discussed and concerns with growth were raised. We reviewed all the test results from the genetics department and moved forward with a brain MRI.
My son was two and half years old when he had his first MRI. The results were inconclusive, but it pointed toward an issue with his pituitary gland. It appeared that there was a “dark spot” that would require further investigation. A referral was made to a Pediatric Endocrinologist at another pediatric hospital and our wait for answers continued.
My son started testing for hormone deficiency when he was 3 years old. Multiple trips to a hospital not so close to home for IV’s to be set and blood withdrawn every 30 minutes for hours at a time. Extended fasting tests to evaluate his ability to control his blood sugar levels with blood taken at 30 minute intervals. These tests went on nearly every six weeks for a full year. He failed every test they administered and he started nightly injections when he was four years old. Shortly thereafter he had his second MRI, this time with contrast. A brain tumour was found.
We now had an answer, but no solution. Removing the tumour would mean removing his pituitary gland. He will be followed with regular MRI’s, but at this point surgery is not an option. And even if it was, it would not be a quick fix. The pituitary gland regulates hormones that control growth, not just liner growth, but that of muscles and bones. Muscles for example like the heart, tongue, and limbs.
My son is below the first percentile in both height and weight. That means that over ninety-nine percent of his same age peers are bigger than him. His speech is difficult to understand, most strangers will only pick-out twenty of every hundred words he says. He has difficulty holding a pencil, but has a lofty goal of writing his first name by the time he is in first grade. He continues to have as many as four appointments a week to address his developmental delays.
My son is a bright boy; he is just as smart as his kindergarten friends. He knows he is different. He knows that he struggles in ways his friends do not. He knows that has more professionals involved in his young life then most adults do in a lifetime, and he is tired. He is tired of therapy, he is tired of doctors and the tests they request, and he is tired of being different. He is tired of having to try harder then all his friends. He continues, he fights, and he tries hard every day to reach his potential.
His brain tumour may be benign, but it certainly has an impact on his life and his health. It is definitely dangerous and needs to be addressed and treated. You see, no two brain tumours are alike, and the signs of symptoms in one individual can vary drastically from the next. We have had many therapists, doctors and specialists evaluate our son over the course of four years without a diagnosis. Education and awareness needs to happen in our community today to ensure that other children are not misdiagnosed, and that Mothers are not brushed off as nervous first time parents.
Please help me bring attention to this cause by sponsoring my friends and I, MAMAS AGAINST TUMOURS, in the Spring Sprint. DONATE HERE!
The Brain Tumour Foundation of Canada supports many positive programs in our community including community awareness, support groups, research and information sharing. Lets fight together to support those like my son who are impacted by brain tumours, so they don’t have to fight alone.
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thanks for sharing, mama. it means so much to me that this story is here, maybe it will provide support and inspiration to other’s out there.
Thank you for sharing this story! What a brave little boy!
kiitos, sara! this little boy is tremendously brave, you are right. he is also so much more than this short post tells. he is silly and a great big brother and a dude who loves to play hard!
What a moving story. I hope you get a lot of donations for your cause. Brain tumors do suck. I’ll pass this along and see if I can help.
thanks, lillian! i too hope we get lots of donations, it’s such an important cause! i appreciate you sharing this story and the message that BRAIN TUMOURS SUCK!
Saying prayers for the family. My mom had a brain tumor in grade school. She tells stories about it, especially how she would fall asleep in class and the teacher would scold her for not going to bed early enough. This of course was not the cause and thankfully she was able to be operated on and is is now 72! Education and bringing attention to this is a wonderful thing. Rooting for the little one!! Sounds very spunky and strong!
so glad to hear your mum survived, winnie!
and yes,this wee fella is VERY spunky and a master comedian! thank-you for your support.
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