Ethan suffers from Anaplastic Astrocytoma Grade III. After fighting it for over a year now; he understands his prognosis is grim.
The neuro-oncologist, Dr. Stapleton and I immediately started Ethan on a protocol of radiation and concurrent chemotherapy with an experimental drug. This failed miserably by May 2012 and Ethan began taking steroids to relieve the swelling in his brain. Later that same month, Ethan would have 3 VP shunts implanted to relieve excess fluid from his brain because his tumor had grown 198%. Dr. Carey, a neuro-science team member indicated his hydrocephalus was so bad that fluid literally squirted from his head during surgery. This was shunt revision number 4. Dr. Tuitt, another neuro-science physician suggested that I take my son home to "make him comfortable" because he would not make it to his 11th birthday. Later that night, I found myself online searching for something..anything that could save him from what the doctors had determined as his fate. I must have reviewed approximately 50-55 clinical trials. Later that week, Dr. Stapleton and I went over each and every protocol until we found one that gave us hope. He began it on June 19th 2012 and this as a sign from God because that was the day I officially became a Marine Corps recruit. It had to work..I just knew it.
After just two cycles, his tumor had reduced 78% in size and after two more cycles, another 46%. I was ecstatic at the progress he seemed to be making. Could this really be his saving Grace? This excitement was to be short-lived though. During this time, Ethan began to exhibit strange behavior and we would discover that it was focal seizures caused by the tumor. My heart was broken! I couldn't believe that this nightmare was now getting worse. As if the seizures weren't bad enough; in the middle of Ethan's 5th cycle, we discovered that his shunt had eroded through both the carotid artery and jugular vein on the right side, somehow becoming wrapped around his heart. This had NEVER occurred before in medical history. The doctors were unsure just how to remove it or if it were even possible. Ethan would now obtain a cardio-thoraxic surgeon and also a cardiologist. We were both so frightened, all we could do was pray. As he was wheeled into surgery, my heart was beating out of my chest! Grace be to God, the shunt was removed like a piece of spaghetti. The NS team was elated that his surgery was so successful and would later publish his case in the Medical Journal of Neuro-Science. Ethan too was elated because he was the first of his kind and his case would help others in the future should they experience the same unfortunate event. All I could think was, what an extraordinary child I have.
Unfortunately because of this unforeseen complication, Ethan developed a 2.33cm blood clot in his right IJ (jugular vein) and we had to pull him from the protocol that was destroying his cancer at such a rapid rate. Desperate, we continued to a patient specific protocol “concocted” by Dr. Stapleton and myself. Something to hold the cancer at bay until we figured out a “plan B”. Ethan now had obtained a hematologist to help deal with the blood clot. As if he weren't on enough medication already, he now had to be subjected to taking two shots a day of Lovenox (a blood thinner) to help treat the clot. What else would my baby be subjected to? My God, hadn't he been through enough?
After the 1st cycle of the new protocol, Ethan had an MRI. I became discouraged to find that his tumor had only reduced 25% at best. Again, I went home and researched but to no avail. He wasn't eligible for any new protocol because of the blood clot. Again, I refused to give up. During a visit with Dr. Stapleton, I indicated to her that I knew what Ethan's odds were. A mere 2-5 years with my son was not enough. I couldn't just give up. There had to be a way. I pushed and pushed until she agreed on another patient specific protocol with 3 very aggressive chemotherapy drugs. After each MRI, my heart sank further and further. Stable was okay but not good enough; there was no progress.
In December 2012, after one of his MRI's, I noticed a small spot on the base of his brain dismissed as “nothing to worry about” as it was not noted on the radiologist's report as a concern. Shortly afterward, Ethan began vomiting blood at an alarming rate and it was only by the Grace of God that it ceased. The ER physicians could find no reason for it beginning nor any reason it stopped so suddenly. On February 18th, 2013, his MRI showed additional enhancement on that very same spot I noted in December; only this time, it was larger. Dr. Stapleton ordered another MRI on February 28th and a tumor board was convened; confirming my worst fear. Ethan had developed a secondary tumor on his medulla oblongata. His cancer was now considered progressive and metastatic. A Lumbar Puncture was performed to rule out any “free-floating” cancer cells. What a blessing, they found none.
March 28th 2013, Ethan began another round of radiation; this time to the secondary site. Again, Dr. Stapleton and I opted for a patient specific protocol. My poor child remained very ill during almost the entire time. He began to speak to angels and this was most frightening to me. The doctors could find no reason for this so I was taken aback at the idea of them coming for him before I was ready to let him go. His seizures became more and more frequent and because of the radiation, his motor skills were greatly diminishing. He couldn't hold down anything and began to refuse food and fluids for fear that he would vomit. I began to buy him foods that he could literally just suck up because his tongue would barely work. He became so frustrated but refused to take any steroid because while he was on them previously, he suffered such a blow to his self esteem when he gained 30 pounds. He still complains of his stretch marks and does all he can to hide them. Seeing my son in such a grave condition, I watched as his spirit began to break. Day after day, I wondered just how much more he could or would take.
On April 23rd 2013, I saw on my son's face the final look of defeat. I was giving him his dose of chemotherapy when he began to vomit. He had only taken the first pill of 6; not counting his dose of keppra, his anti-nausea medication and his muscle relaxant. I could no longer force my child to do it. I was fearful that if I did, he would stay in such defeat and I would lose him. I found myself throwing out the remainder of the evening's dose and emailing Dr. Stapleton that he would no longer be taking his chemotherapy. In the morning when he was rested, I discussed his condition with Dr. Greenberg (Ethan's radiation oncologist) and then presented Ethan with his options.
I asked Ethan to consider taking a small dose of steroids to ease the swelling in his brain to possibly help with the deficits in his motor skills. He agreed but remained determined not to take another dose of chemo. During all of this turmoil, I had his records sent to multiple hospitals with noted pediatric neuro-oncologists and was receiving feedback regarding his options. There was only one protocol that could possibly help us now but we would have to wait until the radiation was finished. I later spoke with Ethan regarding this and managed to get him to agree to it. The catch? He wanted a vacation to see all the landmarks on his “bucket list”.
This protocol is in Cincinnati, Ohio. After speaking with Dr. Stapleton, my heart was ripped apart again. We could go to Cincinnati but at the risk of his dying there. She would try to see if she could perform it “off-study” here in St. Pete so that should anything go wrong, he would be home. I explained to Ethan that I wanted him to take this new chemo; explaining in detail what it was and that should he refuse..he would die. My son met my eyes with his and stated, “Mom, I'm okay with that.”
It is with desperation that speak with you now. I was terminated from my job at his bedside in March 2012 and have subsequently been through another 4 jobs since due to my need to be there for Ethan. Multiple foundations and fundraisers have carried Ethan and I financially up to this point but today, I used our remaining $40 for gas in the car. We used $1,500 in fuel and vehicle maintenance alone during radiation, the majority of one fundraiser. I am frightened that Ethan will not tolerate the chemo well and I am making it my mission to help Ethan finish his bucket list. The Children's Dream Fund helped Ethan see Disney World and Sea World. Children Cancer Foundation helped Ethan swim with the dolphins. He now wants his cross country road trip. His pending treatment is due to start in mid to late June. His MRI is June 3rd and we want to leave the same week. Please help us as we need financial help with travel and also to cover the bills at home until we return. Anything is helpful; we pray that you will find it in your heart to donate to Ethan's Journey.
Maria (Ethan's Mom)