February 6, 2017
Camron Nicholas Cozzi
Time to reflect and update Camron’s journey. Because I know all too well how hard it is to research and get answers for this diagnosis, I will try to describe a brief recap from the beginning.
In December 2015 Camron was being monitored for a concussion he had received the end of November during his lacrosse practice. After several weeks we became concerned because he was not getting better. He was progressively getting worse. His balance was off, stumbling and walking into corners. His eye sight was getting worse but looking back I don’t recall him seeing double at that time. Vomiting was becoming more frequent and random.
December 15th, Camron was evaluated by his doctors. We went home to keep watch making sure he didn’t over stimulate his brain. He did not show signs of improving. I remember he was coaching some young lacrosse players and even missed a practice because he fell asleep and never woke to make the practice. Of course, we were disappointed and attributed his sleep to the concussion and a growing teenager.
That weekend a sneeze triggered him vomiting. I remember thinking how weird – a sneeze leading to vomiting?. We were at a tournament in Oregon for Jordan’s wrestling team. He balance worsening and his appetite not good. I remember having to take him by the arm to get him to his seat in the stands. I feared he would tumble down the aisle..
On December 21, 2015, the first day of Christmas break, I made Camron a sandwich. He vomited after eating only half of the sandwich. I immediately started to cry as I dialed the phone number to the doctor’s office. We headed to their office within the hour. Camron rode to the doctors with his eyes closed. There was too much activity to focus on during the drive. Something we figured was from the concussion. When we were waiting in the doctor’s office all he wanted to do was lay down saying he was dizzy.
Our doctor evaluated Camron and Cam explained about his eyes and how they were bothering him. Because Camron’s balance had gotten worse, our doctor made a phone call to a Neuro Ophthalmologist. We were recommended to see a Neuro Ophthalmologist the week prior, however their office had not called us back to setup an appointment. They were in the middle of moving, so we got lost in the shuffle. But our doctor called as we waited and we had an appointment that Thursday. Camron would never make that appointment. Before we left our doctor asked if we could stop and get a CT scan before we went home. I said sure of course and off we went for the scan. It took all of 3 minutes.
The next morning with both boy’s home on break, we had made plans to go Christmas shopping. About an hour before we left I got a call from the diagnostic center letting me know I could pick up the scans for the neuro appointment. The lady on the phone asked if I could hold to speak with the doctor that had read the scans that morning. He introduced himself and asked if I could make time to speak with him when stopping by the scans. He said that Camron may need an MRI and would hope to get us in for the MRI that day. I recall feeling concerned but not too anxious. Just a numb feeling. Never did cancer enter my thoughts, more of why did this doctor seem so concerned.
The boys and I made our way to the diagnostic center and I left them in the car to pick up the scans and speak with the radiologist. It was there in his office I heard the words tumor as he described his findings on the CT scan. It was later that evening after the MRI at Mary Bridge / Tacoma General we were told, Diffuse Intrinsic Pontine Glioma (DIPG). A tumor found in an area of the brainstem (the lowest, stem-like part of the brain) called the pons, which controls many of the body’s most vital functions such as breathing, blood pressure, and heart rate. And confirming the next morning with our oncologist, this type of tumor is inoperable with a 0 chance of survival.
Camron asked how long he had to live and the oncologist said 2 months if no treatment is given. 9 to 12 months with treatment. Our only treatment option, radiation and/ or chemo, but chemo isn’t recommended because it doesn’t get past the blood brain barrier. What the hell was blood brain barrier. Come to find out, my thoughts of cancer were not correct either. We have learned a lot since December 22, 2015. More than I had ever cared to know.
We decided that following Monday we would treat Camron with radiation and said no the chemotherapy. Paul and I felt strongly about radiation. Camron had 30 days of radiation that ended on February 9, 2016. We fully expected Camron to be placed on steroids at least half way through the 30 days of radiation. Steroids would help with symptoms brought on by inflammation from irritating the tumor with radiation. We believe the alternative meds we started 4 days after diagnosis kept the inflammation down keeping Camron off steroids. Thankfully Camron has never taken steroids.
After researching and traveling on our Make a Wish trip, we decided Camron would benefit from Immunotherapy. We began in April 2016 making monthly trips to Cologne, Germany for immunotherapy. A process that would teach Camron’s body to do what it was supposed to do in fighting and getting rid of cancerous cells. Camron travelled a total of 8 times to Germany. Paul and I each travelled 6. On Camron’s 7th and 8th trip, Paul and I noticed Camron was starting to struggle again with symptoms. His balance was not good, he was struggling with swallowing, and he was tired. After he and I got home from trip 8 in November 2016, he had an MRI which revealed that our concerns were warranted. Camron’s tumor was in progression and causing hydrocephalus (water on the brain) which was causing pressure and pushing his brain down.
Camron had a shunt placed on November 17th, one week before Thanksgiving. Camron’s relief was almost immediate. We were told that his balance would not improve and the shunt was only going to help with pressure. He needed someone with him all the times to make sure he didn’t fall. A few times we witnessed him trying to pick something up off the floor only for him to lose balance and fall flat on his face. He would not be able to catch his fall with his arms. His reflex was not fast enough. Speaking was becoming hard for him. Speaking loud enough to be heard was only frustrating. Camron was more and more moody. The difficulty in walking and talking was taking a toll on him and keeping his mood up beat was hard. Camron also started Avastin, a chemo like therapy that interferes with the growth of tumor cells.
The results of the MRI let us know we had to change our course of action. As much as we believed in the immunotherapy, we have come to understand just how aggressive DIPG can become after several months’ symptom free. They refer to this period as the “honeymoon phase”. And for Camron it lasted about 7 months, April through October. The November 15th MRI showed the tumor was in progression.
With the support of our Mary Bridge team and radiologist, we decided to re irradiate Camron’s tumor. There was a trial where re irradiating the brain stem showed it was safe and Camron fell within the range and time frame to be a candidate. Camron started 12 days of radiation which I referred to as the 12 days of Christmas. Camron struggled in walking to the appointments and used the walking stick and cane a few times, but he was determined to walk on his own. He didn’t want to be in a wheel chair. So, he worked on his balance and started exercising his balance daily. Throughout those 12 days he started getting progressively stronger in his walk. Speech was still slurred and drooling was more frequent. But overall feeling better.
On January 4th, we traveled to Houston, Texas to the Burzynski Clinic to begin an infusion treatment called Antineoplastin. A treatment that would have Camron wear a backpack that holds a pump administering the treatment for 21 hours a day. This is done thru a central line port that was placed before we left to Houston. In adjacent to the infusion treatment, Camron will continue a biweekly Avastin infusion and 3 oral meds daily. While in the clinic, Paul and I would learn how to prepare his meds and flush his central line. A daunting task in the beginning has now become very routine. Our fears of failing Camron as his home nurse team has subsided.
Through all of this our community of friends and family have stood by our Camron proudly letting us know that they are “Ready 4 Battle” and “No One Fights Alone”. Without the support of our community, all of this up to this point would not have been possible. We have traveled in search of a cure for DIPG and our family has grown. We have met new friends fighting the same battles as Camron, trying to live another day and be the best they can be. Along this journey, DIPG has taken too many children. DIPG is diagnosed in 300-400 kids a year and we lose a child almost daily to this horrific diagnosis.
Just the other day with tears of sadness in his eyes, Camron expressed to a friend that the loss of his buddy Hollis was the hardest time in his life. They had plans to defeat DIPG together and when we learned Hollis lost his battle, it shook Camron to the core. I can only imagine the fear Camron has in his thoughts watching his buddy be taken by the same beast that sits inside of him.
Thank you for your support!