Patience

With all of the things that I think Alicia and I have learned this week, one of them is patience.. Yesterday was the first full day that Michael has been fully awake. This being a good and hard at the same time. Since he has been up, there were portions of the day when he was in pain and he started to notice that he had a tube and staples in his head. He would feel them and cry "oww". There were also times that the pain medication would wear off and it was time for another dose of sleep time.

My father had his first full day of what we have been going through. The routine is simple... We wake up early so that we get to the hospital in time to see Dr. Brockmeyer and ask any questions that we may have and sit.....sit....sit.......eat..........sit..........sit..........sit............sit...........eat..........sit.......then go home for the night. My dad not being an avid reader, found lots of things to keep his attention. He would read every last word in the newspaper, go for a walk, and then take a nap.


Today was a little more stressful than we thought the day would turn out. When we arrived at the hospital, Michael was already fussy and pretty much remained that way throughout the day. We talked to the Dr. and we found out exactly what type of tumor we are dealing with. Michael has a juvenile pilocytic astrocytoma or J.P.A. for short. To put it simple, it is a benign tumor that resides in roughly in mostly young children. We don't know what causes it but the good news is that roughly 85 % of people diagnosed have no recurrences once chemo or surgery is involved. That is good news to hear. So now we have a name for the tumor, but it still doesn't change the fact that he DOES have a tumor. The Dr. mentioned that the CT scan that was performed yesterday shows that his ventricles are flowing where they should be. This is good because if they weren't, Michael would need a possible permanent shunt before he would be discharged. He also did mentioned that we would be able to take his EVD drain out from his skull. That is a huge step to not see my child with a tube sticking out from his head.

We thought that Michael would also be less fussy since that's one more thing less hanging from his body. We were wrong. He has been extremely fussy all day and the nurses are worried that it might be related to pressure buildup. We think its because he hasn't pooped in a few days and hasn't had a solid foods since Friday. So to say the least, its almost 10pm and we are tired. We hope that he will not be as fussy tomorrow but that is still just a hope.

Tired day

Today, Alicia and I were able to have some time to ourselves and went to the Salt Lake Temple this morning. It was so nice to have the piece and quiet that have been absent the past few days. Before we went to the temple, we stopped by to see how Michael was doing and we noticed that they took out his oxygen tube from his nose and finally removed his cathoder. It is always nice to see see tubes disappear rather than appear. Grandma and Sly came by to visit and they brought Connor and Rosie. They saw that the hospital room had a game cube in it so they had a great time playing Lego Star Wars.

My father is flying in today from Mexico. I broke the news to him yesterday and I am not sure how well he is taking the news. He insisted that he come right away and I don't know if I am fully ready for him being here. His presence brings along stress that he will never understand. I still haven't talked to my mother and having my father here will just complicate things. My stress level has begin to rise as I am becoming overwhelmed with family members visiting. I have had a headache all day and I don't know if it will get any better.

In speaking with the doctor today, they are planning a CT Scan in the morning to check on Michael's progress since Saturday's surgery. He still does have a feeding tube inside and his EVD tube his brain. The EVD tube is designed to drain the excess brain fluid caused from he the tumor. If all goes well, Michael should have the EVD tube removed within the next few days. So now we are waiting for the pathology results to come back to see what exactly kind of tumor he has. Once we find that out we will know what kind of Chemotherapy he will need and whether or not they will want to try and start his sessions before he is discharged from the hospital. I still have a big headache and time to drink a Pepsi to calm it down!