As many of you have heard or read, my family is going through a difficult time right now. So many have reached out, asking how they can help or contribute to my sister's family. Due to COVID 19 regulations and Jack's immune system, I found one way for people to help.
My nephew Jack Ryan Johnson is an exceptionally intelligent and loving little 6-year old boy. Reading at a first-grade level by the age of 4, his love for books and knowledge took off. Jack and his little brother Finn (3) spent their days playing, going to school, and preparing for a fun summer ahead. Chris, Keisha, Jack, and Finn had a picture-perfect life, but everything changed the morning of March 26, 2020.
Jack started having headaches, and vomiting, and was given antibiotics for a strep infection during Spring Break. On the morning of March 26th, his mom instinctively knew something more serious was going on, and she insisted on taking him to the ER.
A scan of his brain revealed a large inoperable tumor in his thalamus that was blocking the flow of cerebral spinal fluid, causing his left ventricle to swell, and shifting his brain from left to right. He was rushed to the hospital for a VP shunt placement surgery to decrease the intracranial pressure and stop the immediate danger.
Jack recovered well from the first surgery and was soon home with his family with a thalamic biopsy scheduled the following week.
Sweet Jack fearlessly told his mom and dad not to worry and that he was going to be a "kid's doctor" when he grows up.
A stereotactic deep brain biopsy was performed on April 1st, and due to multiple surgical complications, the amount of tissue acquired was inadequate. After an agonizing three weeks of waiting, the biopsy results came back "indeterminate." Another more invasive biopsy would be necessary. Jack seemed to be the only one not terrified.
The second biopsy, a 9-hour craniotomy approach was successful in acquiring adequate tissue for a diagnosis, but this surgery also had complications. Jack stayed in PICU for six scary days with his daddy by his side.
While in the hospital, Jack's dad, stressed, tired, and scared received the news he would be furloughed without pay from his job due to COVID 19.
On Friday, May 22, 2020, they finally received a diagnosis of a juvenile pilocytic astrocytoma.
Due to the location of the tumor, it cannot be resected or surgically removed. The good news is there are treatment options, chemotherapy, and possibly radiation in the future.
Even with Jack's health insurance (which ends in 90 days), the bills are now starting to flood in from three brain surgeries.
My sister, Keisha, and my brother-in-law Chris need to focus on the long road ahead with Jack's treatment plan, but now because of a job furlough, no income coming in, and the health insurance clock ticking, there are other challenges ahead. Chris is frantically applying for a job to maintain their health insurance and income.
We are a close family and will fight this together every day. We appreciate all the love, support, prayers, and positive vibes from all our family, friends, and strangers. There have been a lot of hurdles to overcome, and unfortunately, this is just the beginning of a very long road ahead. We are once again waiting patiently for more results before Jack can begin treatment. Below are additional pictures and videos of Jack's journey from the beginning until now. We love y'all!
My nephew Jack Ryan Johnson is an exceptionally intelligent and loving little 6-year old boy. Reading at a first-grade level by the age of 4, his love for books and knowledge took off. Jack and his little brother Finn (3) spent their days playing, going to school, and preparing for a fun summer ahead. Chris, Keisha, Jack, and Finn had a picture-perfect life, but everything changed the morning of March 26, 2020. Jack started having headaches, and vomiting, and was given antibiotics for a strep infection during Spring Break. On the morning of March 26th, his mom instinctively knew something more serious was going on, and she insisted on taking him to the ER. A scan of his brain revealed a large inoperable tumor in his thalamus that was blocking the flow of cerebral spinal fluid, causing his left ventricle to swell, and shifting his brain from left to right. He was rushed to the hospital for a VP shunt placement surgery to decrease the intracranial pressure and stop the immediate danger. Jack recovered well from the first surgery and was soon home with his family with a thalamic biopsy scheduled the following week.
Sweet Jack fearlessly told his mom and dad not to worry and that he was going to be a "kid's doctor" when he grows up.
A stereotactic deep brain biopsy was performed on April 1st, and due to multiple surgical complications, the amount of tissue acquired was inadequate. After an agonizing three weeks of waiting, the biopsy results came back "indeterminate." Another more invasive biopsy would be necessary. Jack seemed to be the only one not terrified.
The second biopsy, a 9-hour craniotomy approach was successful in acquiring adequate tissue for a diagnosis, but this surgery also had complications. Jack stayed in PICU for six scary days with his daddy by his side.
While in the hospital, Jack's dad, stressed, tired, and scared received the news he would be furloughed without pay from his job due to COVID 19. On Friday, May 22, 2020, they finally received a diagnosis of a juvenile pilocytic astrocytoma.
Due to the location of the tumor, it cannot be resected or surgically removed. The good news is there are treatment options, chemotherapy, and possibly radiation in the future.
Even with Jack's health insurance (which ends in 90 days), the bills are now starting to flood in from three brain surgeries.
My sister, Keisha, and my brother-in-law Chris need to focus on the long road ahead with Jack's treatment plan, but now because of a job furlough, no income coming in, and the health insurance clock ticking, there are other challenges ahead. Chris is frantically applying for a job to maintain their health insurance and income.
We are a close family and will fight this together every day. We appreciate all the love, support, prayers, and positive vibes from all our family, friends, and strangers. There have been a lot of hurdles to overcome, and unfortunately, this is just the beginning of a very long road ahead. We are once again waiting patiently for more results before Jack can begin treatment. Below are additional pictures and videos of Jack's journey from the beginning until now. We love y'all!
Organizer and beneficiary
Kaci Stoddard
Organizer
San Antonio, TX
Christopher Johnson
Beneficiary