Our oldest son, Josh, is currently a patient at the Devos Children’s Hospital being treated for a brain tumor. The tumor was discovered thanks to a great deal of persistence on his part, and the observation of his doctor.
Josh had been complaining for a few weeks that his right leg was bothering him. He said that it would “go out” when he walked. At first, we said that maybe it was temporary, like he might have sat wrong or bumped it. But, the problem continued, and we began to notice that it was affecting how he walked. Then, he asked again about seeing a doctor. We made an appointment with his doctor on Tuesday.
During the examination, she examined his knee, and asked him to show her how it affected his gait when he walked. She asked about headaches, and noticed that his leg was shaking while he was putting his shoes back on. Josh said that he does get migraines sometimes, and I said that I had seen his leg shake like that before.
She referred him to Neurology, and we went on our way. At this point, we were still thinking that they would be investigating Josh’s issue with his knee. Josh said that his doctor had seemed “skeptical,” as if she didn’t believe him. I told him that the opposite was true, and that she was just asking questions as she narrowed down a possible cause.
We drove down to the ice skating rink to meet Kayla, Theresa, and Elijah. I was going to pick up Elijah, and thought that it was a good chance to discuss the doctor visit with Theresa. While we were there, his doctor called saying that she wanted Josh to be checked out much sooner than an appointment with a neurologist might allowed, and suggested that we took him to the ER if we couldn’t get an appointment sooner.
On Wednesday Theresa took Josh to the ER for a CT scan. The CT scan showed that there was a mass in his brain, and signs of swelling. He was transferred via ambulance to Devos Wednesday night. Theresa and Kayla followed separately.
At Devos, additional testing confirmed that Josh has a tumor in his head and it is between the size of a golf ball and a tennis ball. By Thursday, he had lost feeling in his arms and legs and couldn’t move either without help. His mouth started to drop. Over the weekend, he has been working with physical therapy and has been able to get more control of his right leg and has been able to sit up and stand with assistance. He is still struggling to move his right arm.
The original plan was for Josh to have a functional MRI on Monday and for us to meet with the full team of doctors to discuss the plan going forward. Due to his decline they have changed that plan and will do another MRI today (3/17/19) and will be doing surgery tomorrow to remove as much of the tumor as they can. They will then biopsy the tumor to see what we are dealing with and what future treatments will be.
Through this all he has been in as good of spirits as he can be. The whole staff at DeVos has fallen in love with him immediately and they are giving him the best care possible. We are so grateful for the support we have been given, for all of the good thoughts and prayers and we will be forever grateful to Josh’s pediatrician for pushing forward for the testing he needed.
We promise to keep everyone as updated as we possibly can!