Our journey has evolved into a roller coaster ride. Everything is up and down...the ANC, the eating, his emotions. We felt discouraged when the ANC went from 550 to 340. The doctors have explained that in the beginning it is like popcorn popping. It takes a  while to get started and then it should continue to rise steadily. It didn't matter how many doctors and nurses I asked...I only wanted to hear one answer.  I understand that they don't know because every situation and every child is different but the waiting, hoping, wondering and praying each day wears you down. We have been doing it for too long. It was so exciting to see his numbers rising in the beginning and it seemed like he had more energy than he does now. This is hard because we feel like we are moving backwards. We realize that we have to be patient. Well, ok we will pretend to be patient because that is impossible! It is killing me to see Luke so emotional. He presents like a lost little puppy. He is trying with everything he has but he is just sad. He can't find the words but that lower lip speaks volumes! Some of his thoughts leak out once in a while but most often he just cries. This is hard coming from a kid that gets excited and happy about everything...including going to the dentist. He feels life is out of his control and it is breaking him down.

In the meantime, the team has continued to lower the morphine and has begun to change over one of the IV meds to oral. The magic word is EAT. Our goal is to get Luke to eat something...anything. Like everything else, one day he will eat (even if it is just one cookie) and one day he won't. Talk has begun about lessening the IV nutrition. The dreaded NG tube conversation has also begun. This was not a fan favorite last time...to be continued...