The Brain Tumor Foundation for Children is a godsend for families of children with brain/spinal cord tumors. Our son was diagnosed at the age of 8 with a large brain tumor. Thankfully the resection surgery was very successful but he endured many post-surgery complications. The BTFC was very helpful in connecting us with other families who were in the same situation, as well as providing information and support to help us through the entire ordeal. I'm happy to report that my son is now 18 years old and is a freshman in college. Life is not without its challenges but the BTFC is still there to help us.
Evan Carswell, my son, was diagnosed at 15 with a rare aggressive brain cancer he died at 16, with his sweetheart Faith (diagnosed with a brain tumor). They were certainly not their disease however BTFC is definitely part of our families. Here’s partly why.
The financial burden of the disease is monumental for families. It is an easy choice between paying $400 for an electric bill and buying two doses of medicine. (or $30,000 for 60 shots) The medicine came first – Evan’s health came first – and our electricity was cut off. Thanks to BTFC’s wonderful Butterfly Fund, our utilities were restored – not once, but twice. And when I called to get donation envelops for the funeral they asked for Evan’s funeral expenses. It felt too much and I protested… but so grateful again for their donation….
Once the treatment starts you realize that in a few short weeks your child will not feel well. About one month into treatment, Evan gave us a ‘bucket list’ – the things he wanted to do in life. As I read it, I prayed that he didn’t see the disappointment and despair in my face as I realized there was no money for fun…no money for making great memories. Having BTFC pay a $30 water bill may seem insignificant to you, but for our family it provided a night at the movies…a night to make memories. BTFC enables families of children with brain cancer a few moments to devote making life somewhat ’normal’ during a period of time that may be the remainder of their life.
Research is vital and my son felt so strongly he donated his brain tissue and BTFC donates too! It is important to know its not that our son died, but that he lived and lived well - with laughter, love, courage, a little romance and faith….he lived his best. Cancer does not change these children…it reveals them.
We are forever grateful for the Brain Tumor Foundation for Children and those who support them! You would need a whole other nomination for the staff there… we are forever joined by my sons illness and death… Ed and I are proud to be their friend.. The staff are just incredible. I just don‘t see how they do so much.
Any words we could think of really mean nothing. We pray the Holy Spirit will translate those feelings we hold in our hearts … but are unable to verbally express “Evan’s Proud Mom and Dad” Jennifer and Ed Carswell
My daughter was diagnosed with a brain tumor that was discovered to be medulloblastoma brain cancer at 11 months old. Being a single parent, I had to leave everything, including my other 4 children, to be with my baby and care for her at the hospital. BTFC came into our lives and offered caring, compassion, and support that you rarely find. It wasn't just financial. It was emotional. They weren't just there for my daughter. They were there for my other children as well. They know that cancer affects the entire family. They are concerned about "their" kids. They are special people who go above and beyond for complete strangers. I will forever be thankful for them. They shined a light in the midst of all our darkness. Their purpose and cause couldn't be more perfect!
My 18 month old daughter was diagnosed with a brain tumor September 2011. It was the most devastating news any parent could ever hear. She underwent a 9 hour surgery and yak fully the sergeon fully resected the tumor. Our family then had to go to Jacksonville for 6 weeks of radation treatment. The brain tumor foundation helped our family tremendously during this time helping us pay for our bills back at home. It was a super easy process and they made everything simple of us...which is a big deal because nothing was simple anymore. I am happy to say that our daughter is doing very well 1 year later. The brain tumor foundation helped is in a way that we couldn't even imagine. To top it off they still send Anabella cards and letters during holidays and her birthday just to say hello and to let us know they are thinking of us! We love the brain tumor foundation, greatest non profit out there!! Xoxo -Spadaro Family
Our daughter was suddenly diagnosed with anaplastic ependymoma at 10 months old. Prior to resection she suffered a global brain injury due to hydrocephalus caused by her tumor closing off her third and 4th ventricles. She is now home from the hospital but has a g-tube and feeding pump, trach and suction/humidifier/oxygen condenser, & pulse-ox. The Brain Tumor Foundation for Children's Butterfly Fund is helping us get an emergency power generator so this winter and during other power outages that are common in our area we can keep our daughters equipment up and running and not have to go to the hospital with every outage. We are so grateful to them for this as otherwise we would have great difficulty in paying for one ourselves.
In 2001 our son was diagnosed with medulla blastoma. BTFC was there to help us with information, presence, and supportive events. After ten years cancer free, David's cancer returned in 2011 - this time he is considered an adult, but BTFC was there because once you are a part of the "family" you are always a part. Once again, support was given in presence and this time financial to help with gas expenditures. Without this help we would have been in a terrible situation (like it wasn't terrible enough). Even though we lost our son this time, BTFC is still supportive in celebrating our "angels" lives. It is a very personal nonprofit that works at getting to know the people they help which, at a time when friends seem to disappear, is probably the greatest support they give.
In 2006, our daughter Tahjany was diagnosed with a brain tumor and it changed our lives tremendously. The Brain Tumor Foundation for Children were the ones who helped us pull through difficult siutations inside and outside the fight of the cancer. Thanks BTFC for all that you've done for our family. We Love You All! R.I.P. Tahjany, The Duncans.
BTFC takes personal care of each family they serve. They have been a lifeline to me as a momma of a brain tumor patient. They give us opportunities to do events together as a family. Time together as a family is priceless considering we are usually split up due to doctor visits, hospital stays, and therapies. BTFC also assists us financially when the burdens of brain tumor expenses become overwhelming and impossible. Cannot say enough good things. NOTHING negative. LOVE BTFC!!
Our daugher, Julia, was 8 when she was diagnosed with a brain tumor. It was a glioblastoma, and very aggressive. At the time, we lived in St. Louis, MO. One her wishes was to go back to New Orleans, where we are from, to be with our family. Not only did the BTF help us with rent, car payments and other expenses, they kept in touch with us every step of the way. Our baby girl has gone to be with our Savior. After she died, they sent us a lovely angel figurine, I will always keep it next to her picture. We still get personal emails from them, and I can't tell you how much it means to me that they will always remember my wonderful girl. This is a very special organization. Cathy W
October 2011, my 14 year old son Zachary, had some nausea and problems with his vision. His pediatrician ordered an MRI of his brain just as a precaution. I never expected for them to find anything. To my shock, he was diagnosed with an inoperable tumor on his brain stem. We were sent 140 miles away to Vanderbilt Children's Hospital in Nashville, TN for treatment. After taking a heavy dose of steroids for a week to bring the swelling down, he had a brain biopsy at Vanderbilt. Three weeks later, he started six weeks of radiation. I was told by my employer I was eligible for FMLA. But I only had 2 weeks of vacation left, the rest of the time would be without pay. As a single mother, I had no other income. The social worker at Vanderbilt referred me to the Brain Tumor Foundation. I submitted our expenses to the organization through the social worker. The Brain Tumor Foundation paid our house payment and utilities while we were in Nashville allowing me to focus on taking care of my son. They were truly a godsend. I can only imagine what would have happened to our home without them. We have been truly blessed! The radiation shrunk the tumor by half. Zachary has an MRI every 3 months at Vanderbilt to monitor for change. We are so thankful for the help!