A few weeks ago I wrote about enjoying the live rhythms of Ozomatli grooving with one of my favorite musicians, Kanetic Source. Stoked to see him on stage again — six years had passed since the last showing — joy was short lived…he was joining the jam session with Ozo to increase awareness for his incredibly-cute kid, Noah, whom recently was diagnosed with stage 3 Diffuse Intrinsic Pontine Glioma.
Finding out his diagnosis, the family is moving forward and bringing in the best treatment they can find for Noah. With FDA approval, Noah is skipping the horrid and sickly radiation therapy process and working, instead, with world-renowned physician and scientist, Doctor Burzynski. Located in Houston Texas, the Burzynski Clinic is a beautiful example of collaboration between a man whom dedicated his life to battling cancer and others committed to implementing all healing modalities that help the individual survive the disease.
Obviously, working with the best doesn’t erase the devastating challenge that is a day to day reality for this wonderful family.
How can we help?
Kanetic kindly took the time to chat with me about his boy, the effects of a debilitating illness, and where assistance is most needed. Here is what he had to say…
Please give us a little information about Noah…what kind of kid is he?
Noah is a very intelligent outgoing 4 year old who loves music and dancing, most especially he loves playing the drums. He has been with me on stage and in the studio since he could walk and talk. My son is just like any 4 year old except,and I’m not just saying this cause he’s my son but, he was putting full sentences together since he was two, and he plays a five piece drum set, which trips me out by the way. He is just very lovable and anyone who meets him I mean, anyone, they fall in love with him and his cheeks!!
Do you have a favorite story that exemplifies the joy that Noah has brought into your life?
Can you share with us how you discovered Noah was sick?
Well, I was taking a nap in the family room and my wife was in the kitchen. I heard him calling me for help and we play like that sometimes but then the help turned into a cry for help, a cry that I had never heard before. I turned and saw he was on the floor not moving, right next to me, and so I picked him up thinking he was okay…just had a little fall jumping off the couch as most kids his age do, he said he couldn’t move his legs. So my wife came in and tried to stand him up and he fell right to the ground again and was crying more and more. We both thought he had a slight concusion because he would not let neither one of us touch his head to see if he was bleeding or what. Noah was screaming by then saying his head hurts, so we rushed to the San Jose Regional Hospital and they checked him out. The physicians said that he still walks with a little imbalance but they wanted to do a CT Scan to be sure. The Doctor came in and told us that they saw some abnormalities on his brain stem and they needed to do an MRI to see it more clearly. Once again my wife and I were terrified, because up until then our son had no symptoms of any sort no dizziness, etc., and we didn’t know what the Doctors were seeing. Then they came in and told us that our son had a fairly large size Tumor on his brain stem, which to any parent, that is the last thing you would expect to hear about your child. Noah was playing his five piece drum set the night before without any complications, a normal 4 year old. So at around midnight they informed us that he would have to be rushed to Stanford Lucille Packard Children’s Hospital because they are more advanced in this type of diagnosis. On December 28th 2010, a day after Noah’s fall the Doctors confirmed our worst nightmare that our son, Noah Chauncey Stout, has a malignant brain tumor on his brain stem that was inoperable and non-curable called DIPG ( Diffuse Intrinsic Pontine Glioma). Please visit IHeartNoah.org to read more on this.
The worst part of all this is when the Doctor tells you and your spouse that they have some bad news, and it’s like wow what could be worse….. well it was worse. They informed us that our son only had within 12-14 months to live! What a way to start the new year right?
Most definitely. In saying that, how has Noah being sick shifted your life?
Well, it has shifted not only my life and my wifes but it has shifted everyone who knows us and knows my son Noah’s life forever!!! I think that now we look at how much we took time for granted and all the little things that we as humans overlook. I mean just little things like eye movement and being able to smile and show joy and laughing. Some of the symptoms of this cancer are your coordination goes like eye movement and your speech goes, some kids lose the ability to even smile so they have no expression to respond to joy or pain. Thank God my son, up till now, has had none of those symptoms, and he still plays his drums and Rock Band etc.; he’s still Noah.
It was only after he had a biopsy to know exactly what this Cancer was that he had a little trouble moving his eyes to the left without moving his head…… it was at that moment my wife and I realized that it was just those types of little things that most people don’t realize are so precious and a blessing to be able to do.
How can we help?
What we really need is more media attention to raise funds for our son’s clinical trials and treatments. They are going to be very, very expensive and even though we are getting donations now, we need a lot more so that he will continue and finish the treatments and is cancer free!!!!
We need all the support we can get and every dollar adds up. One dollar or 1,000 dollars, doesn’t matter so long as it’s from the heart and the funds keep coming in. My wife works and I work as well, I am organizing with my musician brethren from all over the United States to help me put on benefits and fundraisers, but we still need to keep funds coming in outside of that. I pray that our story is heard and felt by many news stations and radio , etc. Thank you for this opportunity to let the world know about our Noah.
Thank you to the Stout family and Kanetic for taking the time to let us into your life during this ordeal. My thoughts and positive prayers are with you all.
For those that would like to help and enjoy music too, there is a benefit concert for Noah on February 24th in San Fransisco, $5.00 cover charge.