Roof Repairs Needed for Josh's Safe Home

I am fortunate enough to have a good family come into our lives at an unfortunate time. Two brave young boys met in a waiting room, fighting for their lives and receiving radiation. Fast forward 27 years later, one of those brave boys is now a grown man, still fighting. To witness his perseverance all of these years is amazing; but even more amazing is the strength of his mother, who has been there every minute of every day. Sometimes we all need help; asking for it can be hard, but this family truly needs your help. After all these years focusing on medical needs for both Josh and his mom Stephanie, the home they live in needs emergency maintenance. The roof has several leaks and is at risk of making the home unlivable.

The Story of Josh Nickerson

When Josh was first diagnosed in 1996 at the age of 10 with his first brain tumor, he was an incredibly bright, athletic, funny, energetic little boy. He was in the Gifted and Talented Education (GATE) program at school, even testing to get into the program while having an undetected seizure. For 2 years prior to his diagnosis, Josh suffered horrible headaches, behavioral issues, dizzy spells, and other brain tumor related symptoms. Each symptom was horribly misdiagnosed by his PCP as migraines, depression, oppositional defiant disorder, and hypoglycemia. He kept telling his doctor that he had a brain tumor, and it was only after he collapsed with a seizure at school that we finally were able to get the medical world to take him seriously. From that moment on, we were swept up into the brain tumor world and nothing would ever be the same again.

Josh had his first of 5 tumor resections by open craniotomy a week later. Brain mapping was relatively new and unfortunately, the computer which let the neurosurgeon know he had reached healthy brain malfunctioned during his first craniotomy and resulted in the need for a second craniotomy to remove the rest of the tumor. Josh recovered without many side effects and life continued on for 3 years, minus being able to play football which absolutely devastated him. Since the tumor was a benign ganglioglioma annual scans were done to monitor for tumor regrowth.

It was during his annual scans 3 years later, in 2001 that we learned that his tumor had returned and he underwent a 3rd craniotomy. This time the tumor was a malignant Oligodendroglioma. Following that surgery, he underwent 6 weeks of radiation during which the tumor returned so they performed stereotactic radiosurgery followed by a 3 drug chemotherapy protocol. The chemotherapy protocol was very harsh and he developed so many side effects resulting in recurrent hospitalizations. During a scan it was discovered that his tumor continued to grow so that protocol was stopped and he was scheduled for a 4th craniotomy.

Josh underwent his 4th craniotomy in the summer of 2002 and they were more aggressive and resected beyond the tumor bed into healthy brain. I’ll never forget the expression on his neurosurgeon’s face when he came into the waiting room and informed me that Josh had a big hole in his brain and that we would just have to wait and see what, not if, the deficits would be.

Life became a nightmare for us from that point on. Josh had so many complications in the days and months to follow: chemical meningitis, hydrocephalus, MRSA infection in cerebral/spinal fluid just to name a few. I think he had 13 surgeries in that 4 month span. Because of the complications, Josh was unable to do much rehab for the loss of motor function from the damage to his brain from the craniotomy. The brain damage resulted in right sided hemi-paresis as well as cognitive difficulties. He went from being an athletic and exceptionally gifted student to a young teenager in a wheelchair who could no longer read, which he had loved to do. Because of the mobility issues, he was no longer able to play baseball and soccer.

Josh started a 2 drug chemotherapy protocol as a last ditch effort and remained on it for 2 years. During all of this, Josh continued his education as homebound with his teacher coming to him. It greatly limited his opportunities to make friends. He did not have the normal teenage experiences. He cannot drive a car because of his seizure disorder. This is the point when Flash entered our lives and brought the sparkle back. I gave her a surly, bitter teenager at the beginning of camp and she returned a happy young man.

Josh relapsed in 2012 and underwent his 5th craniotomy. This surgery left him with even more challenges including chemical meningitis, staph infection in cerebral/spinal fluid, VP shunt infection, damaged bladder, and additional mobility issues. He underwent 5 additional surgeries that summer to try to combat the infection in his brain. In addition, because of all of the trauma to his scalp and head from the numerous surgeries, infections, and treatments, his main incision (which runs from ear to ear across the top of his head) would not stay closed. This complication will impact the doctors’ ability to perform additional tumor resections in the future.

Josh currently has another brain tumor. His quality of life is only marginally acceptable to him at this point. Surgery and treatment would do more damage than good. The plan now is to stay on top of all of his symptoms (seizures, nausea, headaches) and try to manage them and keep him as comfortable as possible while keeping an eye on tumor growth. He constantly falls because of his mobility issues and ends up in the ER with head injuries. He even fractured his ankle/leg in 2017 and required surgery further impeding his mobility.

I would like to point out that throughout the past 27 years while we have continued to battle this insidious cancer, Josh’s father has had zero interest in being in his life (financially, physically, or emotionally). His father has since passed away so there is no hope of him ever helping us. Josh has been unable to live on his own because of his disabilities and as his health continues to deteriorate, he is no longer able to attend to some of his activities of daily living. He can no longer get around without use of his hemi-walker or wheelchair. I have been his sole caregiver and financial supporter and as such my savings is totally depleted and we are struggling financially. The roof on my house is 30+ years old and desperately needs replaced. There are leaks in every room of my house and some of the ceiling has collapsed (garage & spare room). My homeowners insurance lapsed and I cannot get coverage again until I have the roof replaced. I need help and don’t know where to turn.