This page was started by a good friend, Brandi Barton, to help baby Frankie.
Meet Frankie. Franklin Jack Baker was born on August 8, 2014. Two weeks prior to his birth, a mass was found on a fetal ultrasound, so we knew that our Frankie was going to have to be very strong.
He was born at The Ohio State University Wexner Medical Center. Two days after, Frankie was transferred to Nationwide Children’s Hospital in Columbus, Ohio where he lived for over 2 weeks.
His first week, he had an MRI and MIBG scan completed along with PICC lines and other diagnostic prep work for his big day.
On August 18, at 10 days old, he had major surgery. A left thorocotomy was completed and they removed a large mass, 7cm x 5.5cm 2.5cm confirmed as Neuroblastoma, a pediatric cancer. Recovery was tough with some collapsing of lungs, but overall did well and went home almost a week later.
Soon after, Frankie’s belly started to get larger on the left side. When his pediatrician at Small World Pediatrics checked him, they feared it was his liver. We rushed him to the ER where they did an ultra sound. Five days later an MRI confirmed mass in his liver and a biopsy confirmed that it was more Neuroblastoma
Due to the nature of stage 4S (MS) Neuroblastoma, the oncology team opted to monitor instead of treating with chemo. 4S NB can go away on its own as the cells mature. We decided to monitor his NB and took measurements and bloodwork every week. His belly increased in size and lopsidedness for months and then in December, it started to get slightly smaller and the liver could be palpated and felt smaller.
In February, Frankie was having a hard time swallowing/eating and not making loud cry sounds. They treated him for constipation but after 5 days with no improvement, he was admitted to see what was going on. He had a chest x-ray completed to rule out croup or aspiration of a foreign object and they found a very large mass behind his heart. He was rushed to get a CT scan, which found several masses in his chest. He was also taken to ICU as his breathing became difficult due to the onset of a Rhinovirus (common cold) combined with a large tumor pressing on his left lung.
February 26, 2015, we signed papers and reviewed the chemotherapy drugs and their side effects and started chemo. Frankie was on bi-pap for a while and very uncomfortable.
A week later, we left the ICU and went to the Oncology floor but quickly returned. Frankie had no immune system and went into sepsis and septic shock. His heart stopped and he was resuscitated and put on life-support called ECMO. He had many other complications like a blood clot in his left leg from his A-line that caused his left foot to turn purple, loss of kidney function and barely alive. After 5 days on ECMO, they took him off and he took a turn for the worst on March 12. We were told to prepare to say goodbye.
However, Frankie is a fighter. His doctors did everything they could and were out of options, but Frankie held on and started improving a few days later. Each day, even though something seems to go wrong, he is showing signs of improvement. We were in the ICU for over a month and were very scared every day. Small changes make our hearts drop, but we are still hopeful.
We have moved back to the oncology floor where we are dealing with many residual issues from ECMO (Lung/oxygen drops, vocal chord paralysis, poor kidney function, digestive issues with daily vomiting, difficulty/inability to swallow, weaning off of addictive meds from sedations and septic shock, the list seems endless) as well as resuming the battle against Neuroblastoma. His treatment plan consists of 4 rounds of Chemo. His 4th round is planned to start mid May. After that, he will be sedated for more scans and plan for surgery. Once he recovers from surgery, we will start chemo for another 3-4 months.
We have been in the hospital since February 25, 2015 with him. We will not leave his side. He will not fight alone. We couldn't do this fight without your love and support, helping make it possible to be with him, to protect him, every step of the way.
We love our sweet Franklin so much.
Sharing all of our love,
Ben, Dawn, Patrick, Simon & Franklin Baker (and Mara, the dog, too!)
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