As I write this, it is almost 1:00 in the morning. I'm sitting by Scott's bed in the "step down" unit at NY Presbyterian Hospital. The step down unit is a level between the ICU and a regular neuro room...he gets watched a little more closely than a regular room so that is good. Scott had a tough start to the week. In addition to some increased language issues, a lot of fatigue, and another seizure Monday night, we got a phone call on Tuesday early evening that his liver enzyme levels were dangerously high and his platelets were low (but his sodium is good!). The doctor told us that we needed to get to the ER asap. We scrambled to pack bags, make plans for the kids, find a place for the dog, and make the trek into the city once again - IN THE SNOW! No joke - no April Fools - it was snowing/sleeting/raining. On this drive in, I thought to myself there must be some reason why it snows each time we have to make an emergency trip into the city. I decided that it is a sign that his Grandpa Newhall and my Dad are watching over us and blessing us each time we are facing a scary unknown in Scott's cancer fight.
Scott's doctor said that his liver levels were life threatening but that he was very optimistic that he would be able to get them under control with some IV steroids. He has already gotten the first dose of steriods and will stay in the hospital for more tests, drugs, and monitoring over the next couple of days, at least. We think that these changes in levels are due to the immunotherapy drug and I really don't know what that means for treatment going forward as we haven't discussed it yet.
The hardest part of this whole fight in cancer is the affect on our family. Tonight JJ went to a soccer game at Giants stadium with friends to come home and find out Mom and Dad were at the hospital - again. Paige was about to have the homemade chicken pot pie for dinner with us when we got the call that we had to go to the hospital. Bags were packed and plans were made for them to sleep at friends houses. They are worried, scared, and miss us when we are gone. It just feels so unfair sometimes.
Say a prayer that we will be able to take our much anticipated family trip to Turks and Caicos in less than a week! That's not too much to ask, is it????