Day 15

Eli is doing so good. He is finally tolerating his feedings. I guess the new medicine to help speed up his digestion has done the trick. He is also starting to get back to his old self. He is laughing and smiling  more. We played on a mat on the floor a lot today. His favorite toy in the hospital has been an empty baby wipes box that i filled with little blocks, balls and other random small toys. He likes to throw these out of the crib a lot. I just pick them up and put them in the sink and when they've all been thrown on the floor I give them a quick wash with soap and hot water and put them back in the box.

Eli in baby jail

I went to the records department today and got the written report and the DVD of the MRI. There is a lot of stuff in the report. Some of it makes no sense to me and some of it scares the hell out of me. The most interesting thing and the thing that made the most sense was the measurements of the tumors.

Neck:                   9/8/11                      4/30/12
Right side:   18mm x 13mm        18mm x 15mm
Left Side      14mm x 17mm        19mm x 22mm

Chest:
Top:             54mm x 25mm         58mm x 33mm
middle:                 5.2cm                       6.4cm

Thorasic Inlet:      5.5cm                       6.6cm
periportal region   3.3cm                       3.7cm

Some of the things that are in the report that scare me:

1. Persistant encasement of the great vessels, trachea and esophagus.
2. Small extension of the lesion into left skull base with involvement of the meckel's cave, cavernous sinus, pterygopalatine fossa, retromaxillary area, infratemporal region and vidian canal is identified.
3. Encases the trachea and the main stem bilateral rhonchi.
4. Extension of lesion into the liver, following the portal triads.

I have no idea what half of it means. Eli's oncologist is out of the country for work. He will be back after next week. I know he will explain everything to me with detail and reassure me of the things that sound bad. He is always very honest and upfront with me. Some doctors hate to be the person to give bad news so they just say I don't know what all this means, I'm not an oncologist and only explains what certain words mean.

Having faith that everything is going to be okay can be really hard sometimes. I find myself thinking about the potential deadly side effects this tumor has and I start crying. How is someone suppose to feel when they see their child unhurt, but so broken with no way of fixing him. I hate neurofibromatosis and what it has done to my sweet Eli. I hate that it has no cure or quick fix. I hate that the Lord has so much faith in me that he would give me such a hard task. What am I suppose to learn from this. All I feel is sorrow and all i want is for this nightmare to be over with. That is just how I feel today. Maybe tomorrow will be a better day.