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today i am sharing two stories by two sisters. this is their response to the shocking diagnosis of a brain tumour for one of them in their youth. please take the time to read their stories and help spread awareness about brain tumours.

brain tumours are common, terrifying and each tumour is completely unique to each person. there are links on how you can help at the end of this post. please see the tab above for more info and stories about people living with or surviving brain tumours!

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(first, we hear from the sister who received the scary diagnosis)

I was 11 years old when I was told I had a brain tumour It all went by so quickly. One day I was a normal kid and the next I was sitting in a hospital bed.

I started getting really bad migraines and the doctors did not know what was causing them. Were I older and it was simply a standalone issue, I could have had botox applied to help relieve it. Whether you choose to do so knowing that is an option is up to you. Meanwhile, I had an eye exam scheduled and that is when they found out I had a brain tumour. To be honest, at the time, I think I was too young to comprehend the magnitude of what the doctor had just told us. Although, I vividly remember my parents breathing a sigh of relief that someone had caught the tumor before it had a chance to grow even more. To this day, we are so grateful for the doctors, the eye care associates, and all the equipment they had on hand to help give my eyes a thorough inspection and diagnosis. Quite frankly, it saved my life. And we thank them every day. During the exam, the eye doctor could see the swelling behind my eyes and immediately sent me to a pediatrician. Next thing I knew we were racing to the Sick Kids hospital in Toronto.

The tumour was benign and was the size of a golf ball. With the help of some fancy equipment from somewhere like Medicalexpo, the doctors were able to remove 95% of it. I spent 2 weeks in the hospital and many months afterwards recovering. The remaining 5% of the tumour has stayed the same size and I go for annual MRIs to be sure it does not change.

It is so crazy how quickly your life can change. Today I am a healthy 22 year old woman planning my wedding with the man of my dreams and living a great life. I am so thankful for every single person involved in saving my life and I am happy to be taking part in the Spring Sprint to support brain tumour research and everyone affected by tumours.

(now, we hear from the big sister who was told her little sister had a brain tumour)

The day I found out that my little sister had a brain tumour was a day I will never forget. At just 11 years of age, she was diagnosed with a benign brain tumour and had to have it removed immediately.I was working the evening that I found out this life-changing news. My Mom called and asked that I come home as soon as I was done my shift, as they had something important to tell me.

Shortly after 11 pm I got home to find my sister sitting snugly between my Mom and Dad, all three of them had a devastated look in their eyes. Immediately, I knew something was wrong with my sister. I can still picture every single detail of that moment, the fear in my mom’s eyes, the pain and anguish in my dad’s, and the sadness in my baby sister’s, I was also shocked to see how brave she looked at the same time. I can also remember the overwhelming thought of wishing it was me instead of her. I would have given anything to keep her safe and healthy.

The next morning we rushed to Sick Kids Hospital in Toronto and spent the day speaking with doctors and preparing for all that was to come. They scheduled her surgery and told us it would take approximately 8 hours. It took longer, over 9 hours. The last hour being the absolute worst, waiting and worrying that something had gone wrong. The surgeon came out and informed us that they were able to remove 95% of the tumour the tumour was located at the stem of her brain, on the pituitary gland, and they were unable to remove the additional 5%. This was fairly good news to us, but it was still hard to wrap our heads around the fact that 5% still remained. Even to this very day, I find it hard to believe that it’s still just there…

My sister’s recovery was a tough, and surprisingly amazing adventure. It taught me a lot about life and what’s important and what’s not, it put everything into perspective for me. There were so many things she had to learn to do again, imagine helping teach your little sister to walk again, I can still recall the feeling we had when she took her first few steps!

I learned a lot about my family during this process. I learned that my big brother would always be there to protect us and do whatever he could to keep us safe. I learned that my Dad loved us kids more than he could express, and that he didn’t always know the right words to tell us that. I learned that my Mom would do absolutely anything for us and that it broke her heart to see her youngest baby go through this. She refused to leave my sister’s side throughout this whole process. She was the rock that held us all together.

I am so very proud of my sister for all of her strength and courage throughout her 22 years. She is a kind, beautiful and vibrant young woman who loves life and lives it to the fullest!

We are so excited to be doing the Spring Sprint together!

Please help me bring attention to this cause by sponsoring my friends and I, MAMAS AGAINST TUMOURS, in the Spring Sprint.

DONATE HERE!

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.

Source: http://www.thefreedictionary.com/benign

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. This typically would be done using such equipment as a centrifuge to separate the blood and plasma for testing. We were told that you may need to use this equipment for other blood work, etc. so it was a lot to take in. 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.

brain tumours suck :: a tale by two sisters.

a child with a brain tumour.

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