I struggled to think of an appropriate post to do about this fact that I learned about half way through the month of May. I felt like I needed to post something about it. Something significant about this disease that Kenny has. Then I realized, it’s Brain Tumor Awareness Month and I only learned of it HALF WAY THROUGH THE MONTH OF MAY! Why is that? Why don’t we hear more about brain tumors? We hear about so many other types of diseases and we don’t hear a lot about brain tumors. Not in the every day news. Not on the radio. WHY? I don’t have an answer to that. I wish that I did.
Kenny’s brilliant doctors take such good care of him and we know are they are the best we could ask for. Kenny has an amazing attitude. He laughs, he smiles, he jokes with the doctors. We continue about our life in a pretty normal way. Sometimes we are reminded that it’s there, when we have to visit another doctor for follow up work, tests, visits. We have HOPE though, that some day our doctor will say there is a cure for this, not just treatments. A way to make sure the tumor never returns. Our doctor has HOPE and gives us a better reason to HOPE. Our doctor has never given us bad news, maybe a setback, but always news that gave us reason to HOPE and BELIEVE.
While Kenny’s type of brain tumor is serious, he is lucky because it’s benign and although it can harm him, it can also be treated pretty successfully. Malignant brain tumors and even some that are benign can be much more serious…not treatable…deadly. Sometimes it depends on when you find them, how involved they are, where they are. Those things can make benign tumors much more serious sometimes than malignant.
As I said, Kenny is lucky. His tumor was caught early and he is being treated. He will live for many, many years to come. Many people with brain tumors aren’t as lucky as Kenny. The stories are sad. They break your heart. One day a person goes from living a normal life and the next they have a brain tumor and are given a very short amount of time to live. Kenny is lucky. Charlie is lucky…he gets to have his Daddy for a long, long time. I am lucky…I get to have my husband for a long, long time.
He can live a long, healthy, normal life given the proper medical treatment and care. When people hear brain tumor, they get scared. It is scary, but educating yourself is important. Sometimes it’s easier to explain things in a simple way, rather than overwhelming people with medical facts. So, a very simple way of thinking of it is as diabetes or heart disease, something that many people are familiar with. If you take care of yourself, listen to your doctor and follow up with them regularly for tests and appointments, take your medicine, there is no reason you can’t live a long, healthy normal life. That’s our belief about Kenny’s condition. We listen closely to the directions we are given and follow up carefully and his treatment will be successful.
Of course, it’s not that simple. There is a lot more to it than that. But we learn and educate ourselves and research and ask lots of questions and we are empowered by the knowledge. I carry this big dorky binder with me to all of Kenny’s medical appointments and it comes in handy. I have almost all of his records in there and quickly can access information for the doctors or nurses. We are forever looking for more information on brain tumors.
As I considered a way to get a message out there for Brain Tumor Awareness Month, I realized I could pay some of the kindness forward to others with Brain Tumors. Finding a cure for these tumors would be an amazing thing that we could see in this lifetime. We BELIEVE that we will.
When Kenny was hospitalized and recovering last year, our family was blessed with a huge, loving support system that took care of us, made offers to help us, sent food, gifts, cards, emails and prayers. There is no way to ever pay those people back for their kindness that often moved us to tears. We pledged to pay it forward, to give back when we hear of those in need.
I think that one way we can give back is to make others aware of some wonderful organizations that do amazing things. Organizations that publish medical information that is necessary for patients to learn more about brain tumors and that support the research to find a cure. Brain tumors don’t get the attention they deserve. They are serious. They affect so many people. If you ever feel lead to give to an organization to benefit a cause or a medical condition that doesn’t get the attention it deserves, check these out.
www.pituitary.org (Pituitary Network Association – Kenny’s specific type of brain tumor is a pituitary tumor)
www.abta.org (American Brain Tumor Association)
These organizations are fantastic tools for patients and their families. Knowledge is power and we feel powerful from information they have provided us with. We HOPE for a cure for brain tumors every day and we BELIEVE that someday, we will see that cure in action.