We’re home and getting settled in to some new routines. Here is a brief recap of the past two weeks(thank you again for all the prayers)… On Sunday, May 18th, Aidan was complaining of a headache, neck pain and abdominal pain. He was not able to keep anything down, seemed very uncomfortable and was in and out of sleep. We were advised to take him to the ER at CHOP for an evaluation. While in the ER Aidan’s condition rapidly began to decline. He could only stay awake for a few seconds at a time and when he was awake he was screaming in pain that his neck/head hurt. A CT scan revealed severe Hydrocephalus (build up of fluid in the brain) due to obstructed ventricles. He was subsequently rushed into surgery to have a Ventriculoperitoneal (VP) shunt placed. The procedure went as expected and Aidan was in the PICU recovering by 10:30 PM.
The next day brought some challenges in that Aidan was not recovering as expected, the VP shunt procedure was successful, but Aidan was unable to chew/swallow and thus could not eat or drink. We remained in the PICU for another day or so for evaluation and were then transferred to the Oncology wing once the neuro-surgeons were convinced he was stable. Aidan spent a week in the oncology wing where he showed continual improvement day over day. His steroid dose was increased to help relieve tumor related symptoms. He is now able to sit up, move around a bit, chew, swallow and talk at levels close to where he was at prior to surgery. Hydrocephalus (depending on the severity), similar to any brain injury can take a while to bounce back from… his brain was pushed and squished in different directions as a result of the fluid build up and it will take some time to recover. Before leaving the hospital Aidan had a Nasogastric feeding tube placed which allows us to make sure that he gets the nutrition, fluids and medication he needs.
As for the status of the tumor… at this point we still don’t know whether we are dealing with swelling due to tumor breakdown from the vaccine study or tumor progression. When we were getting discharged, the neuro-oncologist said to me that what we are seeing is either really good or really bad and that in normal DIPG scenarios the middle ground is at least knowing what is coming next. We don’t even have the middle ground at the moment just more of the same if you ask me. More uncertainty.
Aidan has been so brave throughout all of this, if you ask him, all he wants is that “boo boo” in his head to GO AWAY! Us too buddy, us too!
Please keep the prayers and positive energy coming, we need them now more than ever.
