1-13-17

Well Friday the 13th has been a dramatic day for us. Yesterday Drew's eye was looking puffy again, so I called into Mayo to see if we might need to do more antibiotics. After they looked at him, different antibiotics were prescribed assuming it was the infection from before coming back now that we were off antibiotics. Last night though, he did not improve and by the morning was running a fever and obviously needed to be seen. So to the St Mary's ER we came. They decided to get CT scans of his head and body since he's also been getting sick more frequently and complaining of belly pain. We got admitted after his lab work showed his white count doubled overnight, which would suggest infection, even before CT scans were back.

The CT of his head showed there is an abscess behind his eye, that they'd think is infection since his white count is so high and we just had an infection. But they may need an MRI to be sure its not Neuroblastoma. Opthamology is getting involved to help figure this out. If it is "just" continued infection it sounds like they will try stronger IV antibiotics to get it under control. Please pray that is all it takes. If not, it sounds like next steps to clear it up are pretty scary.

Then the body CT showed what we all kind of expect is happening, even if we hope it's not. The cancer is spreading and the old spots have grown. They think that we do need a better pain plan to manage his pain due to cancer. Which we'll figure out and then work to get it transfered to Hospice so we can keep him comfortable at home and do what we planned on, enjoying as much time together as we can.

So the good news is that we have him comfortable now. After a long day where he was clearly in a lot of pain, we have morphine dripping, IV Tylenol/Ibuprofin, and fluids going, and he's sleeping. They said to expect to be hospitalized through early next week at least until we get the infection under control and also a pain management plan in place so we can take him home.

Obviously we have had a lot going on in the last month, and are pretty exhausted. We are trying to keep focused on each day's tasks, and stay positive. But, as you can imagine, that becomes increasingly hard to do. Please keep praying for strength, peace, wisdom, patience, and rest. It's been a hard day for sure. Facing reality we knew would be hard after the vacation we had, and especially when it smacks you in the face like this. But it does make me even more grateful for our trip. Thank God for giving us that window to be gone and have a family vacation together with Drew feeling as good as he did. Who knew in just 4 days this is where we'd be? We want so badly it hurts to keep him just like he was in Florida forever, but if God in his perfect plan doesn't have that in the cards, I will forever treasure that time we had together.

Please keep praying for a miracle.

~Heidi