3 y/o winning tough battle with JPA brain tumor

September 25, 2008 | New Bedford, Massachusetts | Vetting explained

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Last updated: September 25, 2008

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http://www.braidennorton.com/ Braiden turned 3 on July 27. He was diagnosed a year and a half ago at Children's Hospital Boston. He went into emergency surgery which lasted 14 hours. He also had a subderal shunt placed. He's been through a total of 7 surgeries since he was born. His tumor continued to grow over the next year eventually back to its original size. The Neurosurgeons refused to operate anymore because of its dangerous location. They transferred us over to Dana Farber where they decided chemo was the next step. Vinchristine and Carboplatum to be exact. As a curious father, I decided to research this stuff and after weeks and weeks of endless research, most of the time at night when I should've been asleep, I became sick to my stomach with the facts I came across regarding how this chemo combination would work on a JPA (or in reality, wouldn't work). When I brought my list of facts and concerns that I had to our last consult before chemo would begin to Dana Farber, they seemed shocked with what I learned. Their rebuttals were poor, and non convincing that their chemo was the way to go. I refused. Parents must not let their guard down during times like these. I was very stressed and still am that I could no longer go with the flow of the white jackets I had always trusted and never second guessed. So I found myself, and still do, weaving my way through the thousands of alternative medicines and treatments looking for a way out. I found Protocel, Ruta 6/Calc phos, Boswelia, IP6, the list goes on. All these made sense. But it was because of God that I stumbled across a clinic in Houston TX called the Burzynski Clinic. I found that he had great success treating pediatric JPA with his "Antineoplastins". It's only in phase 2 of FDA approval but it was worth a phone call. I took a big risk and flew my family to Houston for a consult. Braiden met the requirements to be on this treatment if we decided to. Impressed with the staff and clinic we gave it a go and being that he had already had a portocath placed weeks before in preparation for chemo, we were able to start the next day. We spent a month in Houston living out of a hotel, going to the clinic daily as they closely monitored his acceptance of this genetic targeted treatment and also training my wife and I how to care for him. It was like school. Except we could not slack off and had to force ourselves at times to pay 100% of our attention to the very detailed steps. After all my sons life is on the line. He's been on this treatment for 6 months. At first the 3 month MRI showed good news because the tumor had seemed to stop growing. But the news got better with every 8 week MRI. July 7, 2008 - tumor shrunk by 24%. September 3, 2008 tumor shrunk additional 23%. His dose level continues to increase every other day. This is all great news, but this treatment is grueling, very stressful and requires our attention 24 hours a day. We do everything ourselves as after learning a lot about nursing skills we find ourselves correcting real nurses whenever we go to get our 8 week MRI about sterile procedures. We don't trust anyone, which is sad, but true. I guess this related back to the old saying "If you want it done right, do it yourself". Now the tables are turning as Dana Farber has called us once asking more about what we're doing after they've seen the MRI's for themselves. They can't achieve these results without huge side effects and permanent damage. So, as I mentioned earlier, this affects everything, and I mean everything. My salary is reduced because I can't work overtime. My wife can no longer waitress at night. I can't afford the mortgage for our house that we bought right before the market crash 3 years ago. I'm in the middle of possible foreclosure if I can't come up with the $$K I owe for past due mortgage payments. Yes, I am also a victim of this mortgage crisis you hear about daily. Looking back I should've never been given the loan amount they gave me, guess its part my fault as well, although I hate to admit I had been "sold" on the outrageous mortgage. Health insurance is another issue. Blue Cross Blue Shield has been "reviewing" the claims submitted by the clinic since he started treatment, over 6 months ago, and has yet to come up with a decision if they want to help pay for the treatment which costs me over $7,200 a month. Of course I can't afford it, the tab just grows. It's over 40K by now. My marriage is another issue. I can see why people divorce during crisis like this. The stress is unbearable at times, or should I say most the time. Somehow we're hanging in there. Beer helps, but only temporarily. The never ending fundraising from outstanding citizens helps greatly. I find it hard to believe that I should lose my house, have my credit destroyed, because I have an ill son. It' makes me sick. The "system" makes me sick. There are investigations launched for both my mortgage and the health insurance issue but still must sit and wait a few more weeks for answers, so until then I'm trapped. I have big plans to bring any negative outcomes from these investigations public. I hope I don't have to though, I'm too tired to take on anything else. Maybe I should take my mother in laws advice and hire an attorney to sort this all out. I remember when life was easy. When my wife and I are getting along, we talk about how some day it will be easy once again. Except I know we'll enjoy it much more as we are living the dark side right now. Another old saying "You don't know what you got until it's gone" I guess would fit here. Braiden is doing extremely well, and this is our only fuel. He has almost no disabilities, his eyes don't dialate normally, and he has a limited up gaze, he's not as "fast" or "energetic" as the normal 3 year old, but none of this we can complain of. We think about how he would be if we went with chemo. Instead we have the most well mannered, smart, EXTREMELY loving boy who loves to help with everything mommy or daddy does. We try hard, and are successful at hiding the stress from him. I can guarantee that Braiden will take this experience and use it for all it's worth when he grows older. It feels good to write this. Don't know who will read it, but I guess it doesn't matter. I saw a show on stress on PBS last night as I lie next to Braiden in his sleep. It spoke about the stress parents carry when they have ill or disabled children. Supposedly one of the most stressful scenarios known. I'm going to order it so my wife can watch it. I guess I should get back to work, I'm sure my employer wouldn't mind that I'm using this time for this as they've been more than understanding and supportive, but I'm done anyway. Thanks for listening to this struggling, exhausted father. Please pray for us all, but mostly for Braiden. Phil

Posted in Assignment:
Surviving a brain tumor

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