Jace-Man's Neurosurgery Costs
Donation protected
Hello,
First and foremost we are asking for prayers. Jimmy and Jamie have a wonderful and healthy four year old daughter and a 7month old son who has been through a lot this past few months.
Jace Rome Mathews went from a perfectly healthy infant-who's mom's only complaint was he didn't seem to have bowel movements enough---to a boy with a 5" tumor in his spinal chord.
Jace was born in August of 2015. At 5 months old (January2016) he was diagnosed with 44* infant idiopathic scoliosis-at his age it is a scary, but treatable deformity.
Before being treated for this, doctor wanted his gastrointestinal back-ups dealt with. Once seen by the GI, there wasn't much the specialist could do, both doctors ordered an MRI as they felt his issues were due to nerve blockage.
During the waiting period for the MRI he slowly deteriorated. His bowels weren't regular; he wasn't urinating normal; his leg was turning purple off and on; leg stiffness; sweating when he would be upset; he seemed in pain and would scream through out the night; his feet were freezing all the time. On top of all that, he had "normal" baby pains like teething and ear infections and gas pain.
On Friday, March 18 they finally received the MRI they had waited a month for. It showed everyone's worst fear of a very large tumor--in the worst case scenario-his spinal cord. An intramedullary (inside the spinal cord) mass measuring 1cm AP x 1.2cm transverse x 12cm CC (double circumference it should be and almost 5” in length) spanning from T1-T11 (basically his whole back-especially after swelling). They were released from the hospital with an appointment with the neurosurgeon the following Tuesday. The next day (Saturday), they realized Jace's legs weren't functioning at all, responding to any stimulus, or performing reflexes. They took him to Memorail ER and he was given steriods while they waited to transfer him to the Tulane-Lakeside hospital.
Saturday evening, after arrival at Tulane, they met with the neurosurgeon and Pediatric ICU teams. The amazing Neurosurgeons at Tulane called in their “A” team on a SUNDAY-March 20 and performed a T1-T10 miraculous surgery. They feel confident they removed 90-98%.
Doctors were honest and not very hopeful that they could remove much because it was aggressively growing. They warned us it was probably cancer. However, they did need to at least biopsy it and put a shunt catheter in his brain to relieve swelling.
Mommy & Daddy got to see their brave little man at 4PM that Sunday after a 6 hour surgery. The doctors were confident they were able to remove 90-98% of the tumor and sent the biopsy for pathological analysis! Praise God for these Doctors and guiding their hands in surgery! We are unsure if the paralysis will continue, but doctors seem confident, because of his young age, that his brain will be able to find or heal the neuro pathways. We have faith he will be able to move his lower extremeties once again with intense physical therepy.
Two days later the Post-op MRI shows [“less expansile with less conspicuous central nodular component compared to prior exam.”] Jargon for basically looks better, but still too swollen to tell. However, shortly thereafter he was getting his reflexes back so there’s a little hope.
Tuesday, March 29 he had a VP Shunt put in to help with hydrocephalus (intracranial pressure).
Pathology report came back Friday, April 1 with the final diagnosis of intramedullary spinal cord tumor-myxopapillary ependymoma, anaplastic variant (Grade 3/Stage 1 cancer) with KI67 proliferative index of focally up to 80% (growing at a rate of 80x normal).
Another post-op MRI was ordered for Thursday, April 7, shows a significant decrease in the tumor with a very thin layer remaining. We are currently waiting to hear back from Cinncinati and St. Jude for confirmation and proposed treament plans. It will most likely be a combination of chemotherapy and radiation.
In 3 weeks—that have felt like an eternity—Jace has gone from scoliosis to cancer; the tumor is malignant. Worse yet, the tumor is anaplastic and it is growing at 80x normal which makes it very aggressive. To make matters even worse, his cancer is very, very rare. It makes up less than 1% of all cancers diagnosed in the US.
We will leave you with this smile for your day. He is so strong!
We have been accepted by St. Jude Children's Reseach Hospital and are loving it here.
He has started chemotherapy and has been doing as well as expected.
Thank you and God Bless you.
#PRAYFORJACE
First and foremost we are asking for prayers. Jimmy and Jamie have a wonderful and healthy four year old daughter and a 7month old son who has been through a lot this past few months.
Jace Rome Mathews went from a perfectly healthy infant-who's mom's only complaint was he didn't seem to have bowel movements enough---to a boy with a 5" tumor in his spinal chord.Jace was born in August of 2015. At 5 months old (January2016) he was diagnosed with 44* infant idiopathic scoliosis-at his age it is a scary, but treatable deformity.
Before being treated for this, doctor wanted his gastrointestinal back-ups dealt with. Once seen by the GI, there wasn't much the specialist could do, both doctors ordered an MRI as they felt his issues were due to nerve blockage.During the waiting period for the MRI he slowly deteriorated. His bowels weren't regular; he wasn't urinating normal; his leg was turning purple off and on; leg stiffness; sweating when he would be upset; he seemed in pain and would scream through out the night; his feet were freezing all the time. On top of all that, he had "normal" baby pains like teething and ear infections and gas pain.
On Friday, March 18 they finally received the MRI they had waited a month for. It showed everyone's worst fear of a very large tumor--in the worst case scenario-his spinal cord. An intramedullary (inside the spinal cord) mass measuring 1cm AP x 1.2cm transverse x 12cm CC (double circumference it should be and almost 5” in length) spanning from T1-T11 (basically his whole back-especially after swelling). They were released from the hospital with an appointment with the neurosurgeon the following Tuesday. The next day (Saturday), they realized Jace's legs weren't functioning at all, responding to any stimulus, or performing reflexes. They took him to Memorail ER and he was given steriods while they waited to transfer him to the Tulane-Lakeside hospital.
Saturday evening, after arrival at Tulane, they met with the neurosurgeon and Pediatric ICU teams. The amazing Neurosurgeons at Tulane called in their “A” team on a SUNDAY-March 20 and performed a T1-T10 miraculous surgery. They feel confident they removed 90-98%.
Doctors were honest and not very hopeful that they could remove much because it was aggressively growing. They warned us it was probably cancer. However, they did need to at least biopsy it and put a shunt catheter in his brain to relieve swelling.
Mommy & Daddy got to see their brave little man at 4PM that Sunday after a 6 hour surgery. The doctors were confident they were able to remove 90-98% of the tumor and sent the biopsy for pathological analysis! Praise God for these Doctors and guiding their hands in surgery! We are unsure if the paralysis will continue, but doctors seem confident, because of his young age, that his brain will be able to find or heal the neuro pathways. We have faith he will be able to move his lower extremeties once again with intense physical therepy.
Two days later the Post-op MRI shows [“less expansile with less conspicuous central nodular component compared to prior exam.”] Jargon for basically looks better, but still too swollen to tell. However, shortly thereafter he was getting his reflexes back so there’s a little hope. Tuesday, March 29 he had a VP Shunt put in to help with hydrocephalus (intracranial pressure). Pathology report came back Friday, April 1 with the final diagnosis of intramedullary spinal cord tumor-myxopapillary ependymoma, anaplastic variant (Grade 3/Stage 1 cancer) with KI67 proliferative index of focally up to 80% (growing at a rate of 80x normal).
Another post-op MRI was ordered for Thursday, April 7, shows a significant decrease in the tumor with a very thin layer remaining. We are currently waiting to hear back from Cinncinati and St. Jude for confirmation and proposed treament plans. It will most likely be a combination of chemotherapy and radiation.In 3 weeks—that have felt like an eternity—Jace has gone from scoliosis to cancer; the tumor is malignant. Worse yet, the tumor is anaplastic and it is growing at 80x normal which makes it very aggressive. To make matters even worse, his cancer is very, very rare. It makes up less than 1% of all cancers diagnosed in the US.
We will leave you with this smile for your day. He is so strong!We have been accepted by St. Jude Children's Reseach Hospital and are loving it here.
He has started chemotherapy and has been doing as well as expected.
Thank you and God Bless you.
#PRAYFORJACE
Organizer
Jamie Joy Mathews
Organizer
Gulfport, MS
