Our home away from home

Today was a long day. Derek has been steadily struggling over the past couple weeks. Actually since the last couple weeks of radiation, but significantly and rapidly these last 2 weeks. His vision has been fluctuating, he has slept most of the day(we expected that post radiation) and the last couple days he has struggled to walk on his own. It felt like we were back 3 months ago all over again. My husband has been talking with the oncologist's office all week and got them to agree to see Derek today when we went for physical and occupational therapy. We saw his oncologist first this morning at 9. She agreed that yes, the tiredness was typical, but that the extra neurological symptoms warranted a quick MRI. That was schedule for 2 today. Derek did the best he could with PT and OT but it was difficult for him. 

We had lunch and went for the MRI. From there, we headed directly back to oncology. Derek's oncologist came in and said that it really was the best of all of the possible scenarios. A portion of the tumor has shrunk. Answer to prayer right there. Unfortunately another portion of the tumor has essentially liquefied and turned into a large encapsulated cyst. Very large. So large it is blocking off another area of his brain that is not accessed by his shunt to drain the fluid that is now building up in this new area. With all of the backed up fluid and the enlarged area of the tumor, there is also a lot of swelling in his brain. 

With that, Derek was admitted to the hospital this evening. 

At the time that I left the hospital with Kate, Derek was headed down to have a CT scan. His Pediatric Neurosurgeon is not on call this weekend but he came to the hospital tonight to take a look at Derek himself. What a blessing. Derek will be getting an Ommaya Reservoir( https://en.wikipedia.org/wiki/Ommaya_reservoir) placed surgically tomorrow. It does not work like the shunt. It will allow them to manually remove fluid when it increases. Derek will not like that as they will have to insert a needle through his skin into the reservoir to aspirate fluid out. 

Thank you to each and every one of you for your support. We could not have made it through these past three months(yes, tomorrow marks the 3 month point) without your help and encouraging words. Please no flowers(due to allergies). Also, no stuffed animals or blankets for the kids. We are limiting visitors at this time as that is very exhausting for Derek.