4yr old Noah, has a very rare Cancer, called Neuroblastoma. The family very recently were informed that his Cancer has spread, he now is in the High Risk Neuroblastoma class, & is in need of immediate Treatment.

Noah is scheduled to be admitted into the hospital, to receive his first Round of Chemotherapy, on 12/22. Noah was diagnosed July, 2022. His Tumor was located by accident, following a ER visit, for some nighttime breathing issue he had been experiencing.  Noah’s father accepted a new position during peek Covid happenings, & we were not yet established with the Healthcare System.

The family brought Noah into the ER to be checked. The Hospital Staff administered a Chest Scan, which revealed a tumor in his inner chest.

Noah was immediately transferred by ambulance, to the closest Childrens Hospital, equipped to care for his new found condition. Noah spent the following 3 days in the hospital, where several tests & scans were done. Surgical Resection of the tumor took place Aug 16, 2022. The Surgeon was able to remove 90+% of the tumor.

Following reg protocol, we were told Chemo was not necessary at that time. Noah was in need of a follow-up scan, to determine if surgery was successful, & to look for any residual and/or new cancer.  Medicaid continued to deny the medically necessary PET Scan. For over a 5 week time period, the Oncology office & our family went back-n-forth with the Insurance company, over offering coverage for the medically necessary scan. Scan was denied. Our family ended up committing to pay out-of-pocket for the necessary Scan. We have yet to receive the bill for services. Anticipated bill is $6600-8600. The Pet Scan revealed questionable activity. At that time, a MRI was necessary, to offer clarity, on what was showing up on the PET Scan. The MRI took place, followed by a MIBG Scan. Noah had received a total of 3 scans, along with a Bone Marrow Biopsy, in past 5 weeks. Test/Scans have provided us with the news we now know. Noah’s Cancer has spread. Noah has positive activity in his chest, & through several areas along his Spine, along with a couple areas in his Pelvis. Stage 4, High Risk, Neuroblastoma is the diagnoses.

Throughout this process, our family has been financially affected to a great extent. We have turned into a one income household. With, the main source of income, Noah's dad, taking unpaid days-off, several days throughout each week. Mom, has filed for FMLA through wrk, to provide 24/7 emotional & physical support for Noah. Up until recently, employment had been reduced to one shift a week. Since original diagnoses, July 2022, Noah has began showing sever signs of Separation Anxiety. The more our family is able to be together as a whole, to walk this walk with him, his anxiety has lessened a bit. Noah’s current Hospital/Clinic, is just over a hour away. However, his care/treatment is going to require very closely monitored specific care, offered by highly trained group of doctors. Noahs Treatment will begin at his current location, due to the expedited nature of need involved, he needs to start ASAP. But, a transfer of care will be occurring, following his completion with first Round of Chemo. MSK, Sloan Kettering Cancer Center, New York, has put together a Treatment plan for Noah. Noahs continued care/treatment will take place directly at MSK, in New York, or, at one of two locations, here in Florida. John Hopkins, St. Petersburg location, or, Nicklaus Childrens Hospital, Miami Fl. From beginning to end, Treatment is 1.5 Years. There will a great deal of distance between our current home, & treatment location. Loss of income from work, will be significant for Matthew, Noah’s father.