Pylocitic Astrocytoma were words that Tatia and I never had in our vocabulary; that is, until May of 2007, when Braiden was diagnosed with this type of tumor at Children's Hospital Boston. The events leading up to this day were very interesting to say the least, but if it were not for Tatia's intuitive motherly instincts, life for Braiden, Tatia, and I could have been very different
For several months Braiden had been having eye problems and balance issues. These issues were not major, and did not become a big concern of ours until Braiden had what we thought was a seizure in December of 2006. In the months following this “seizure”, several local doctors repeatedly diagnosed Braiden with having an eye disorder called Strabismus and wanted to have him fitted for glasses. We researched Strabismus ourselves, and it just didn't connect with us that this was the source of Braiden’s eye and balance issues.
On May 24, 2007 Tatia frantically called Dr. Hunter, who through our research, we found to be an eye specialist in pediatrics and the chief Ophthalmologist at Children’s Hospital Boston. Tatia told Dr. Hunter that Braiden's balance had been quickly degrading, and she felt that there was much more to Braiden’s eye and balance problems than needing prescription glasses. Dr. Hunter scheduled an immediate appointment for Braiden to be seen up in Boston.
Shortly into this eye exam, the appointment came to an abrupt halt and we were directed to the emergency room for a CT scan. Dr. Hunter had observed that Braiden’s optic nerves were being pressed into the back of his eyes. Dr. Hunter stated that this was an indication of Hydrocephalus, which is a buildup of fluid in the skull that causes pressure behind the eyes. Shortly after the CT scan, a group of doctors entered our room and greeted us with handshakes. We knew that what we were about to hear would not be good, especially since I had spoken with these same doctors shortly before, and no handshakes were exchanged then. We were told that Braiden had a 4cm mass on his brain stem. Not only did they tell us that this was one of the worst spots for a tumor to appear, but they then said that he had only a fifty percent chance of survival. This was, of course, any parent’s worst nightmare, and emotions previously unknown to us consumed Tatia and myself.
The following day we were introduced to Dr. Lillian Goumnerova, a highly respected neurosurgeon. She would ultimately be the one who would perform surgery to relieve the pressure being caused by the tumor as well as doing a biopsy to determine the type of tumor Braiden had. After this initial 4-hour surgery, our spirits were partially lifted, because the pressure had been relieved behind Braiden's eyes, and they looked so normal compared to the past few months. The doctors explained to us that Braiden had most likely been living with constant headaches due to the extreme pressure which was a direct result from the tumor placement. It all came into focus as to why Braiden had always been so reserved and seemed so quiet. Imagine living every day with a migraine and you can only begin to see how awful poor Braiden must have constantly felt.
It was 5 days after this pressure relieving surgery that Braiden was scheduled for tumor resection surgery. This surgery involved removing most of the tumor – the part that was accessible and which removal would not threaten vital body functions. The surgery took nearly 13 hours; it felt a lot more like 13 days to us. A surgery of this magnitude is extremely risky and delicate, especially on such a young child. All we could do was pray that Braiden would pull through and that nothing in Braiden’s brain or other systems would be damaged during the procedure. Tatia and I, along with her parents who had flown up from Florida for the surgery, had made a vow to each other, but mostly to ourselves and to God, that since Braiden could not eat or drink during this surgery, that we would fast as well. It was a small sacrifice, but it was nothing compared to what our little boy went through. Braiden came out of this lengthy surgery with no complications, thanks to God and the gentle touch of Dr. Goumnerova and her caring staff.
We had to wait nearly a full week to receive the results from the Pathology department as to what type of tumor Braiden had and whether it was benign or malignant. The results were in our favor. Braiden was diagnosed with a low grade, benign, Pylocyic Astrocytoma, which is a common brain tumor in children. We were told this was a slow growing and mostly harmless tumor, which set our minds at ease, at least at that time.
Over the course of the next few months Tatia and I kept a tireless yet mandatory, and constant eye on Braiden’s every move. The three of us made several trips back up to Children’s Hospital Boston for various reasons ranging from a fall to a common fever. We became quite familiar with these trips and the hospital itself, and literally, just so happened to spend every holiday weekend stuck in a 10x10 hospital room. A small price to pay for the health of our son.
It was August when we were rocked to our cores again. Tatia and I attempted to take Braiden for a bike ride in his baby seat, which had been mounted to the back of my bicycle. While trying to put his helmet on, we realized it wasn’t even close to fitting on his head. This was shocking to us because merely four weeks earlier we had put the helmet on him and it fit fine. We instantly knew that the problem was Hydrocephalus, which meant the fluid and therefore pressure was back inside Braiden’s head. Our fears were confirmed the following day when we went back to Children’s Hospital and had his head measured. It was 2 cm larger than it was just 4 weeks prior.
This unforeseen setback put Braiden back in CHB where they performed yet another CT scan to get a closer look at his ventricles. On August 30, 2007, we were admitted once again to the ninth floor of Children’s Hospital. By now it felt like our second home, which is not a good feeling to have. We spent every waking moment feeling totally numb, just thinking of and praying for Braiden. Our nights were sleepless for the most part, the little sleep we got being curled up in a fold- out hospital chair.
The following morning Children’s Hospital surgeons installed an external shunt to relieve the pressure inside Braiden’s head. The doctors were hopeful that after the pressure was relieved that his brain would be able to maintain the decreased pressure by itself. This external shunt was the last alternative to Braiden needing an internal and permanent shunt. For Braiden this was a necessary but torturous operation, as he had to lie flat on his back for a continuous 24-hour period because the drain used gravity to relieve the pressure. Attempting to keep a two year old still, never mind flat on his back is not the easiest thing to do, but Braiden pulled though with little difficulty. Remember that Braiden had been through so much in 2007 that he has learned to adapt to hospital procedures quite well, probably more so than an adult. In Braiden’s first two years he has had 5 surgeries, and he was becoming quite used to them. Our little guy is a lot tougher than we, because each surgery drained us and aged us more than we would like to admit.
With the way things had been going we were not surprised that Braiden’s brain wasn't able to maintain the new lowered pressure. This was what we had feared might happen, and Braiden’s neurology team determined that the dreaded internal life- long shunt would have to be installed. We had anticipated this, and had done an enormous amount of research prior to heading back up to CHB. An internal shunt is a device that is surgically inserted into the brain and attaches to a long tube that runs through the body and into the stomach where the built up fluid from the brain is deposited. Our research made us very concerned about this shunt because it has been well documented that these shunts are fairly high maintenance and have a high rate of failure. As usual Braiden took the surgery quite well, and he recovered faster than the team of doctors had expected.
A few days after the shunt surgery Braiden was walking around the Neurology ward pushing his new favorite toy, a toy Dirt Devil vacuum. He became so attached to this toy that he had to sleep with it each night. Tatia and I became very familiar with the little motor churning away as we watched Red Sox games on the small hospital television. Needless to say, when we were discharged later that week, the wonderful nurses at Children’s didn't think twice about giving the vacuum to Braiden and letting him take it home.
For the following three months life became much more stable and nearly normal which we didn’t think could be possible. We finally came to terms that the shunt would be a permanent part of all of our lives. Braiden was eating, sleeping and playing very well. We even felt comfortable enough to take a couple of weekend trips to our favorite cabin in the White Mountains, New Hampshire. During this calm period before another storm Tatia and I only had a few concerns as to whether Braiden’s shunt was having complications, which we were able to quickly dispel following frantic trips back up to Children’s Hospital Boston.
Shocking news and more hard times fell on us again when we took Braiden for his quarterly MRI on Monday, December 3rd. These MRIs are scheduled to monitor the remaining tumor for changes, and unfortunately Braiden’s tumor had changed. The scan showed a .5cm growth. This was beyond devastating to Tatia and I, and once again we were at an utter loss. Feelings we never knew were possible filled us both again as we thought of Braiden and why this was happening to such a kind and special little boy. We have never felt so helpless. Braiden had no idea what was taking place inside of him. Even more frustrating is the fact that Braiden is too young to tell us exactly how he is feeling.
The news of the tumor growth crushed us, and was made even worse because the doctors could not even provide us with a prognosis. It would have to be something that the specialists at Children’s Hospital would have to discuss in a conference with the Oncologists at Dana Farber. The two teams of specialists met the following Thursday and ultimately determined that the next step, and only alternative for Braiden, would have to be Chemotherapy. This was due to the fact that the location of the remainder of the tumor was located on the brain stem and surgery was too risky.
The specialists outlined a chemotherapy plan that scheduled Braiden to receive intravenous injections once a week for an entire year beginning in January, 2008. A new low hit Tatia and I. At every step of the way we thought things could not get any worse, and each event proved us wrong time and again. The emotional roller coaster Tatia and I have been riding this year is indescribable. Picture the highest and lowest parts of your life, then multiply them by ten and group them together in a 6-month span and you can only begin to understand what we have been through.
This diagnosis prompted more hours of research as to what Braiden would soon be put through. It didn't look promising. Our appointment with our Oncologist, Dr. Chi at Dana Farber's Jimmy Fund, confirmed that chemotherapy is by no means a fix, but merely a hopeful halt to further tumor growth. Indeed even if the chemotherapy was successful in stopping the growth it would cause massive havoc on his entire body and more than likely only be effective for only a couple of years. If it were to grow back again he would require more chemotherapy until he reaches an age of around 10 at which time the doctors would feel comfortable performing radiation therapy on him, which is just slightly more promising than chemotherapy.
We soon educated ourselves about the world of alternative cancer treatments through countless hours of online research. We spoke to many Natural-Pathic doctors and received many opinions. Through devine appointment, we obtained the phone number of a family who had gone through an almost identical experience as we had just a few years ago. This family also had rejected the conventional chemotherapy treatment because of its devastating side effects on children. There are too many awful side effects to count, but they can include loss of hair, nausea, hearing loss, kidney and liver damage. Instead, they put their daughter on a supplement called Protocel. Through our research, we found Protocel to be surprisingly effective and decided it was worth more than a cursory look. We were blessed to learn that our Neurology/Oncology team would allow us 8 weeks to try the Protocel before they would push to begin the chemotherapy treatments. This 8-week period is exactly what we were hoping for, because if Protocel works, it is possible to be evident within this time frame.
In addition to the Protocel, Braiden has been on a whole foods, organic, and sugar-free diet for the past few months. We, along with other researchers believe that this can only better his chance for a complete cure.
If you’re interested as to what exactly Protocel is and how it works, as well as a few positive testimonials, please visit the link page on Braiden’s site. By no means are we ensured a cure through Protocel but we feel very positive about it, as it certainly sounds more promising than the chemotherapy treatment and its side effects that Braiden could very easily still receive.
In the past 6 months Tatia and I have seen a whole different spectrum of life that we never imagined or hoped we would encounter. The experiences we have had to endure have made us totally selfless and put every other aspect of our daily life into clear perspective. In 1996 I joined the US Navy, and while in boot camp I was taught an invaluable phrase. I can now relate this phrase to almost every aspect of my life. This phrase is "Adapt and Overcome", and that is exactly what Tatia and I have had to do. We hope and pray that 2008 will bring positive change for the three of us, and all we ask of each of you reading this will be to keep Braiden in your hearts and prayers. Thank you one and all for the support you have given to us and for taking the time to read about little Braiden’s experience thus far. Please continue to check back into this site, as we will update it as necessary. Once again and in closing, we plan to Adapt and Overcome.
Phil and Tatia Norton
