May is Brain Tumor Awareness month.
Since the success of the breast cancer campaigns, it seems as though every day, week, month is dedicated to some disease or disorder. Each cause fighting for their 15 minutes in the spotlight. Fighting for funding and research. Fighting for people to pay attention, to understand.
It can be a lot to keep up with and I have to wonder if all of this awareness is really getting through to anyone? Does it really making a difference?
I never thought much about it at all until, May (Brain Tumor Awareness month) 2011, when my own son was diagnosed with a brain tumor. May forever shifted from a time of celebration and renewal, of spring showers and flowers, from the most important and happiest anniversaries of my life (mothers day and My wedding anniversary), to the month my life changed forever. The memories of my perfect beach wedding have been forever replaced with memories of MRI’s and brain surgery. The spring sun will forever be clouded by the grey of Brain Tumor Awareness month. And that’s ok with me, because awareness matters!
To be aware is to have knowledge. And knowledge breeds power, and money and research which all lead to better treatment; cure.
I chose to enter Kai into research studies right from diagnosis. We all know that the answers for cancer are still few and far between and I felt if we were going to be a part of this world, we might as well try to help the cause for everyone.
We have been a part of many important pediatric cancer fundraising efforts over the years, as we all know pediatric cancers get grossly underfunded so the thought of donating Kai’s tumor should he die was always in my mind.
In September when I took Kai off chemo I made sure his team knew my intentions. If Kai does not survive I want his tumor to go to research; for Lexie, and Hailey, and Chris, and Addie, Dylan, Yan, Alexa, Sam, Mackenzie, Sage, Grace, Colin, Adam, Tommy, Alex, and the countless other children and families fighting this fight. I have said it before but I will say it again, brain tumor world is a family. We celebrate together, we mourn together and we go on fighting for eachothers kids even when ours don’t survive. THAT is awareness. That is knowledge and power and hope.
Kai’s tumor was special. Not in a good way, but it was different and I knew that from day one, and I knew it would be important to find out why.
13 hours after Kai’s tumor took his life, Children’s hospital/Dana Farber removed his brain and spine for research.
Monday I was able to go back to Dana Farber and meet with his team for the report.
They told me it could take up to six months to get the report back and I will admit I was counting the days. I was anxious to go back. I was anxious to hear what they would tell me, why his tumor was different. I was anxious to hear what future projects his tumor could help. In all my anticipation, I also became anxious that they would find nothing relevant at all…
Monday morning my mom and I drove into Boston, as we had hundreds of times over the past few years. Along the way we picked up Ashley and Joe (our personal medical interpreters and psychologist <3)
We drove in circles deep underground through the Dana Farber parking lot. We took the elevator up and waited.
Kai’s team, Dr. K, His NP and psychologist were all there. We hugged. We sat and we listened. Dr. K has a unique and beautiful way of describing these impossibly devastating situations. He is thorough and clear. He does not dumb things down. He emphasizes the science, yet he somehow remains warm and heartfelt and caring. He works tirelessly for our kids and I am so thankful we took the time to explain this report to us.
Neuropathology Final Diagnosis:
Pediatric Brain (appropriate for 26 months of age)
RECCURENT/RESIDUAL DIFFUSE ASTROCYTOMA WHO GRADE II, IDH-1 (R132H) NEGATIVE WITH ATYPICAL FEATURES.
Tumor growth is unusually extensive involving multiple lobes and regions (gliomatosis ceribri pattern).
Tumor extensively involves third ventricle region, optic nerves, chaism, and tracts, bilateral thalami, bilateral basal ganglia, and the entire brainstem.
Leptomeningeal spread is extensive alone the optic nerve, ventral diencephalon, midbrain, pons and focally in the medulla with encasement of structures.
Tumor has similar appearance to prior biopsy.
Possible uncal herniation/compression, bilateral, due to diffuse tumor growth.
They spent over an hour going through what each of these findings mean. It was interesting and heartbreaking and in some way a bit reassuring. There is now NO question that I did do the right thing letting Kai go. I have nothing to second guess myself on, his tumor was everywhere and taking over ALL of his brain function. His tumor was strong and unphased by the chemo. He never really had a chance.
Kai’s tumor infiltrated every part of his brain. It was growing on every membrane, in ever fold. There were parts of his brain that were completely taken over and only tumor tissue was left behind. His tumor was smart. It grew in two different ways: it had a diffuse seeding as well as a tentacle spread. His tumor did in fact encompass his entire brain stem, mid brain and optic tracts –all of the places where regulatory body function occurs. His tumor did not have the BRAF mutation, which they have discovered appears in 90% of these types of tumors.
It’s so hard to think his entire brain was being taken over like that, it’s the kind of thing zombie movies are made of, but its also pretty amazing to think of how strong he was despite all he was fighting against. My poor little baby. How can this possibly happen. It’s just not fair. He fought so hard and never had a chance.
The only comfort we have now is that his special, strong, stubborn, smart tumor will be torn apart by science and research revealing something that will one day help the next kid.
I will never know for sure what comes of his tumor, but when Dr. K explained that the current advancements being made are coming from 100 banked pediatric tumors like Kai’s, I realized just how important his tumor is. 100 tumors are changing protocols. 100 tumors!
While we will not be able to specifically track his tumor, I will be updated on advancement made from the projects his tumor is involved in. Projects developed by Dr.K and brain tumor research around the world. Projects funded by parents from the PGLA Foundation. His tumor will travel to Germany -who is currently investing the most money in the world for pediatric brain tumor research. Doctors from Boston, Philly and even China will work with his tumor. They are surrently mapping his genome and will spend the next few years searching for the next mutation (like BRAF) that will help find new treatments for the special tumors like Kai’s. His tumor will make a difference.
None of this would be happening without awareness. None of this would be happening without the dedication of families and doctors.
According to Dr. Mark Kieran, Director Pediatric Neuro-Oncology at Dana-Farber Cancer Institute, Boston,
“Dramatic advances in our capacity to diagnose, treat, and prevent cancers have brought us to a moment when scientific discovery and technology have converged to turn the tide in our fight against these diseases. YET, even with medicine’s many advances, low-grade astrocytomas remain largely under researched and under funded, with treatments unchanged for 25 years. Little is know about low-grade gliomas (LGG) as attention and funding focused on these types of tumors has lagged behind that of high-grade gliomas. Without funding, there is no research. Without research, there is little hope for children diagnosed with PLGA.”
I would like to add to that, without donated tissue to study this research will not advance.
At the end of our meeting I thanked them for the care they gave us during treatment. I thanked them for their dedication as practitioners, researchers, caregivers. I thanked them for the research. And they thanked me for Kai’s tumor.
‘Kai’s life will make a difference. His tumor will one day help others’
It’ a small consolation, but it was all I wanted to hear.
So the next time you see a facebook post or a sign or an articel about awareness for cancer, or autism, or epilepsy, please take a moment and think about the thousands of families who will loose their children. Think of the doctors and nurses working tirelessly to find cures. Think of the children who fight with a smile on their faces, despite the relentless diseases taking over their bodies.
I know we can’t save the world and for me awareness is not all about a cure.
Awareness is about taking that moment to put yourself in someone else’s shoes.
Awareness is about improving quality of life.
Awareness is about uniting to fight for ALL of our kids, sick and healthy.
Awareness is acceptance of those who are different from you.
Awareness builds a Village.
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”