Keep My TWIN Alive!

My sweet nephew Jacob McPhie is 11 years old.  He found out on April 15th that he had a pineal region brain tumor.  For a month prior to his diagnosis, he was experiencing severe headaches, nausea, stiff spine, and was sleeping excessively.  Jacob was scheduled, by his family physician, for a MRI which identified the 1 inch diameter tumor centered in the pineal region of his brain.  Jacob traveled that evening, from his home in Idaho, to Primary Children's Hospital in Salt Lake City, Utah.  The physical symptom were exacerbated by the emotional experience of being separated for the fist time in his life from his twin brother Shane.  At Primary Children's, Jacob was operated on to perform an endoscopic third ventriculostomy which relieved a build up of cerebral spinal fluid exerting pressure on surrounding brain tissue and also relieved some of his other symptoms.




After Jacob's initial surgery swelling in his brain was severe and treatment with steroids was required to help reduce the swelling.  Jacob then traveled home to Idaho to recuperate from his surgery for approximately two weeks. Jacob's second surgery to remove as much of a grade 4 aggressive, malignant pineoblastoma tumor as possible took place in SLC, UT on the 29th of April.  Jacob's surgery lasted over 8 hours.  The surgeons reported that Jacob's tumor was different from most they had seen.






Following the attempt to fully remove his tumor, Jacob returned to Primary Children's Hospital on May 14th to meet with the doctors to review the next steps in his treatment and to receive a spinal tap that determined that there were no cancer cells in his spinal column or fluid (this is a very painful procedure).   Jacob and his family were informed that the best and safest treatment option for his type of tumor was a new cutting edge radiation treatment, not available locally in Idaho.  Jacob will  be traveling to the the SCCA Proton Therapy Center in Seattle, Washington to receive this treatment.   Proton radiation treatment will be 5 days a week for a period of  approximately 6 weeks.  Jacob will travel over 750 miles from home in order to receive his treatment at the Seattle facility.  Jacob will be traveling 3 hours each day when in Seattle due to staying with a family friend to save on hotel expenses because cancer patient lodging is closed to provide safety from the COVID-19 virus.   Due to COVID-19 resources that are typically available like the Ronald McDonald house, that would provide free boarding for patients and families like Jacob's, are not available.  For his treatment in Seattle Jacob will travel over 7000 miles over a six week period.  On May 18th Jacob and his mother and father drove to Seattle, Washington, for an initial consultation, and Jacob had a CT scan and was fitted for a mask that will be used as part of his radiation treatment.  On May 21st Jacob returned to Primary Children's Hospital in Utah to have a surgery to  have his chemo port placed for his future chemotherapy treatment.  On May 27, Jacob will be returning to Seattle, Washington, for his first week of proton radiation therapy. 


Following the completion of radiation therapy in Seattle, he will have a month to recover.  Jacob will then travel to Salt Lake City, Utah, for chemotherapy treatment at Primary Children's Hospital.  Chemotherapy will require Jacob to be hospitalized for a week out of each month for a period of 6 months.  Following radiation and chemotherapy, Jacob will require an MRI every few months to ensure his malignant tumor is not regrowing.  Jacob will have to be closely monitored for at least 5 years, and maybe the rest of his life, to ensure that the aggressive malignant tumor does not return.  Jacob has a high probability of side effects from the radiation and chemotherapy, these include hearing, visual, and mental impairments resulting from the impact of radiation and chemotherapy on brain tissue surrounding the location of his tumor.  Jacob's doctors will carry out DNA testing to determine whether or not the tumor has a genetic component and whether or not other family members are at risk.

The quick onset and immediate risks associated with the malignant tumor has meant that in order to preserve Jacob's life treatments, decisions, and arrangements have had to be made without full consideration of the financial impact on Jacob's family. 

Jacob's family would immediately benefit from financial assistance to help with costs associated with travel expenses, surgery for removal of the tumor, DNA testing, radiation, and chemotherapy treatments.