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12/29/2016 Latest post:
Fynn is a shining light, infecting everyone he meets with love and laughter, and continuing to teach his parents, family, and friends around him the meaning of life.
Fynn was born into this world at 10:57am on July 29th, 2009. Weighing 6lbs 2oz and sporting a full head of black hair! He was welcomed home by his older brother, Wyatt and our Bernese Mtn. dog, Argus. Fynn was a sweet, happy, snuggly baby. Sixteen days after he was born, Fynn developed a mild fever. Just to be on the safe side, we brought him to our pediatrician to make sure everything was okay. By the time we reached the office, Fynn’s temperature was over 101 and he was promptly admitted into Lutheran Hospital. Within the hour he had endured his first spinal tap and was checked into a room where we ended up staying 5 days as we waited for test results. It was confirmed that Fynn had contracted viral meningitis.
As a baby, Fynn was slow to develop fine and gross motor skills, as well as speech. He first sat up independently right around the time he turned one year old. We saw a neurologist at Children’s and he was first diagnosed with a condition called hypotonia. Basically, Fynn had low muscle tone, feeling like a “floppy” baby. In the Spring of 2010 we began OT and PT to strengthen his muscles. The research began to find out what was going on – initially an MRI for which our little baby had to be anesthetized. On July 3rd, 2010, the MRI results showed a “lesion” on his brain, but nobody seemed to know what it was. We were advised to do nothing and wait for another MRI scan in 3 months. In the meantime, after a sloo of blood tests, results revealed that Fynn (age 15 mos.) had a rare genetic disorder called Isodicentric 15, or Dup15q for short. This is a duplication of the 15th chromosome in every cell of his body – an irreversible and incurable condition. Devastated and completely ignorant to this condition, we began our learning process and fight to help Fynn develop and grow with this condition. When Fynn was 2 years old, he was diagnosed with Autism. We learned that many children diagnosed with Dup15q are also diagnosed with Autism. And his life journey began… with elements of fear and reaching to understand and make peace with the cards Fynn was dealt. We began therapies and what seemed like endless doctor’s appointments. Fynn was always a trooper…always happy.
We continued to watch the “lesion” on his brain every 3 months, then 6 months, then every year, and lastly we were up to every other year. Since the lesion was not growing, there was no need to keep as close a pulse on it and it saved Fynn the experience of being anesthetized. Then, (after 2 years) the next MRI in May 2016 showed that the lesion in his cerebellum was still stable, but a new lesion was now visible, this one in the pons area of his brain. Again, the advice was to do nothing and wait 3 months for another MRI. On July 28th, the next MRI showed growth, but it didn’t “look” or “act” like a typical cancerous tumor- -Fynn showed none of the expected symptoms. The medical team thought it could be something caused by an unknown inflammatory process, so we embarked on more blood tests and another spinal tap. The tests revealed nothing conclusive. He did not have MS, or leukemia so we were thankful for that, but we were still left not knowing what the lesion actually was, so we again waited to do another MRI scan in November. This scan showed that the lesion had doubled from May and was now 24mm in size. At that point, it was recommended that we do a biopsy.
On December 11th, 2016, Fynn was at home, happy as can be – roaming the house, playing with his favorite toys, listening to music, riding his bike – doing all the normal things that he loves to do. Since he had to have anesthesia the next morning and would not be able to eat breakfast, we made him his favorite meal, Spaghetti. We read him his social story that illustrated the events of the next day.
At 5am on December 12th, Colleen and Fynn left the house for Children’s with nothing to drink or eat that morning. By 9am, he was asleep again, with no understanding that a surgeon was going to drill a hole into his skull to find out what this thing is that is growing in his brain. The surgery was a success, but he had a rough time coming out of anesthesia and he lost control of the right side of his body, a “neurological deficit” common to a biopsy to the pons area (notably his arm and leg) – he woke up and couldn’t walk or move his arm anymore. If that wasn’t enough, he couldn’t eat much the next day either so he could get another MRI at 4pm. Following these rough couple of days, he began physical therapy to get his right side working again. Remarkably, he was able to walk again within 6 days with help of an adult or something to hold on to, but was still very weak. Fynn hated being at the hospital for an entire week, and was very home sick and did not seem to understand why we had to be there. He kept saying “Truuuck”, which meant he wanted to go to the truck and drive home!
It wasn’t until 1 week later, on December 19th, that we received the biopsy results. Colleen and I sat in the room with his surgeon and Oncologist to receive the news, it started with “It’s not good news…”. It was shocking to say the least, and Fynn picked up on the vibe right away (he went out to sit with our nurse while we received the news.)
The news: Fynn has DIPG – Diffuse Intrinsic Pontine Glioma – effectively a stage 4 incurable cancer that affects some 2-300 kids in America every year. Prognosis: he has less than 6 months to live without radiation therapy (RT); optimistically up to a year with RT according to 95% of the statistics. Because they did a biopsy on Fynn's tumor they were able to learn that his tumor has an anomaly which can sometimes extend the prognosis in about about 5% of the children. If he’s atypical and fits within the 5%, he could have 2 more years with us. Our hope is to beat the odds....
We are numb and heartbroken as we have been thrown into the reality that is, the circle of life. As we embrace this new reality we will share information with you through this sight. We are thankful to have all of you with our family as we embark on this humbling journey.