We had him for 2.5 years after diagnosis. We considered everyday a blessing!
It started with headaches. They didn’t happen all the time but when he had them they were brutal. We thought maybe he was getting migraines? However, it became obvious to us after a Thanksgiving vacation at Wisconsin Dells was cut short that this might not just be a normal headache. We went home on a Friday and by Monday he had started vomiting. He stopped for about a week then it started up all over again. We took him to numerous places to be seen all of which told us either it was the flu or sinus issues.
On December 22, 2012; Josh passed out while at work at AMC theatres. He was rushed to the hospital. They did a Catscan since he hit his head while falling – the Catscan showed a big tumor in the center of the fluid in his brain. The hospital immediately admitted him. The next day he had a EVP put in which helped relieve the pressure in his brain. On Christmas, December 25th, 2012, he was moved by ambulance to University of Illinois Chicago (UIC). The same week on Thursday the 27th, he underwent brain surgery to remove the tumor. Six hours later, we were told they had to stop. They also indicated that they couldn’t remove all the tumor but about 90% and that the first cancer test came back malignant. We were told they would run a more in-depth test and let us know in a week or two for sure.
His road to recovery from the surgery was filled with many bad moments but we had hope he would be coming home at some point.
On the 8th of January, we were told his tumor was a Glioblastomamultiforme (GBM for short). A GBM is always an automatic stage 4 cancer because it is so aggressive. Josh also experience a pulmonary ambulism caused they think from the fall he took at the AMC theatres. However, GBM’s we were told have a history of causing blood clots. He also had to have a shunt placed in his head to help with the pressure in his brain. On January 14th, 2013; he finally came home.
Right away, he was seen by his general practitioner at Marcotte group. They called Lurie Children’s hospital for us and contacted one of the Neuro-Oncologist there. He called us within two days. Thus, began our journey with Lurie Children’s and their awesome staff. Josh started the next week with radiation and chemotherapy. He had radiation for 6 weeks and was on chemotherapy for a year. At one point in 2014, he was off all medicines except his Warafin for three months! However, in August of 2014; he had what we can only describe as a mini stroke. We rushed him to Lurie Children’s and they ran many tests including an MRI.
His cancer had spread to the lining of the brain and spine. Josh was such a fighter – he had more radiation which took all his hair and he began another round of chemotherapy. He started the radiation in September of 2014. We took Josh to California in the beginning of 2015 as he had always wanted to go. He had an awesome time there! He would get tired and need to be in a wheelchair from time to time. Josh needed supervision always as the brain surgery affected his short-term memory and he couldn’t always remember things that just happened. As 2015 progressed, he seemed to become sick and would vomit occasionally. By March & April, his vomiting continued to increase, and we noticed he would chew on food for quite a while. He had another MRI in the later part of April and the diagnosis was not good. However, they wanted to start him on a new trial as even though the MRI wasn’t good he looked good physically. On May 31st, the week he was supposed to start the new trial, he had another stroke. We rushed him to the hospital and they wanted to perform another MRI but he was not having any of it. On June 2, 2015; he passed away at Lurie Children’s with his family gathered around him. We had him for 2.5 years after diagnosis.