July 29

Last week we took a trip to Ann Arbor with Max. He was sooooo great. He chit chatted with the docs, played with his toys, gave high fives and waves to everyone, and sat still and quiet when needed. Such a trooper.
The consensus is that Max needs a transplant. Not a partial either, a full liver.  The way his tumor is in his body makes it impossible to do anything else but a transplant. Not what I was expecting.
We go back this week Wednesday to meet the rest of the transplant team and to hopefully be put on the list.  We will also get more concrete information on what to expect through this process and life after.
Again we find ourselves in the process of hurry up and waiting.

July 23

Tomorrow is the big day in Ann Arbor. We won't get a lot of info on if he needs the transplant tomorrow. It is more of getting all the tests done to get on the transplant list, and see if he is healthy enough to even be considered.
I will update you on how the day goes and what the tentative plan is.
Please pray for safe travels and positive info on taking out the tumor.

July 18

Max has completed his 5th found of chemo. I can't even describe to you how amazing this kid is. I ask him if he is a Big Brave Boy and he just smiles and says "Yup"!
We have a marathon day set up in Ann Arbor Tuesday. Appointments from 8am until 4 or 5. He will get a liver ultrasound, heart echo, pulmonology appt, cardiology appt, and a couple meetings with the liver transplant surgeons. After all that they will determine what the next step is and we will most likely be on the transplant list.  HOPEFULLY we won't have to go the transplant route but the docs want the option ready if he ends up needing it.
So many thoughts constantly running through my head...so hard to put into words. I am still attempting to be positive but it is hard to manage all the chaos at times.

"Max are you a BIG BRAVE BOY"?
"Yup Mama"
That will help me get through tonight.  =)

July 15

Max's CTscan showed that the tumor(s) are not resectable. So no surgery. This is NOT what I was hoping or expecting.Max's doctor is going to send a referral to a doctor an Mott's in Ann Arbor. He might have a better idea of exactly what the next steps should be. In the meantime Max will have chemo tomorrow (Monday) through Wednesday. His docs want to stay on top of treatment until another plan is determined.
So again its a hurry up and wait situation. I am at a loss. I am trying to stay positive and upbeat for my little guy but I feel like I got the wind knocked out of me. The unknowns are more than terrifying.
As soon as I hear more I will update the blog. Until then I am gonna love on my little guys.  =)

July 11

I know this is late notice ( I really stink at updating the blog) but Max has another CTscan tomorrow. We are hoping that it will show that the tumors have shrunk enough to do surgery. The doctors will call Friday some time to let us know if he is ready for surgery or if he has to do more rounds of chemo.
I am trying my hardest not to work myself up but I am really bad at that. I just really want these tumors out of my son...I know understatement of the year. 
Max is our Big Brave Boy He is so amazing. Its sad that I have learned more from my 3 year old son in the last few months than I have in most of my life.