Update on the J-man

First off thank you, thank you for the love and support you have all poured out to our family this last few days. It means so much. It is just the lift I need. The prayers for strength are working. I have my moments and sometimes I just have to laugh at the situation because it is just absurd that we are going through yet another huge health issue with our sweet baby. I mean really?? I have double checked with God several times to make sure He has the right shoulders. My cross is heavy, but I am picking it up daily and know that God will give me the strength to carry it.

I have spent endless time on the phone with doctors scheduling appts, with insurance getting our advocate in place (someone to be on "our side" if any kind of test or treatment is denied), just in case we need one, and rescheduling what was on our schedule for next week so we can be in Fresno the entire week for J, filling out the forms for Kailee to be on independent study next week, refilling it out b/c the school people don't know their own schedule (long story) and the dates had to get changed "on paper", talking talking talking. ugh. I think we have our schedule in place now though. (see below)

We really don't know much more then we did last week... however, we do know his bloodwork (Chemistry, Liver function, thyroid, CBC, everything under the sun) is perfect. So we have ruled out hypothyroidism and know that his blood isn't fighting something VISIBLY. There could be a fight going on that just isn't showing up. Also, his AFP (alfa-feta protein) came back and has decreased since last month. This test is a tumor marker for the cancer associated with the Beckwith Weidemann syndrome they suspected he had earlier. Normal is around 40. When we left the NICU it was around 29,000 (normal for a newborn, it decreases over their first year of life). Last month it was 712 and this month it was 330. So that is fantastic also.

We have a CT scan of his lungs, abdomen, and pelvis with contrast scheduled for Monday afternoon. He will be sedated for this, which means no eating after 11:30 am and the scan isn't until 3:30, SO THAT SHOULD BE INTERSTING! He is not going to be happy about having food withheld. If they see something they are concerned about, they will do a biopsy Wednesday during his hernia surgery. 2 birds with one stone...

After talking with the oncologist, I learned that normally tumors do not present as several spots. They would be 1 solid tumor. IF this situation was cancer, it would be a "metastatic" cancer, meaning it is a cancer that originated elsewhere from a "primary" tumor. Hence, the scan being done on his whole torso region. The oncologist thinks this scenario is "highly unlikely". There are several other scenarios this could play out as, infection still is one, congenital liver disease (basically, he just has spots and we monitor them closely to see if they change). We didn't go through the list of "what ifs" just b/c we really know n othing until we see what kind of tissue it is in the CT scan.

I know that is more then most of you want to know, but for my own sake, I needed to purge the info from my brain.

Thanks for the prayers and support! God is good and I know He has a plan for our family.

Please pray specifically for the following:

All around safety/healing/peace/calmness for J in all of these procedures

Safe travels
Health for all of us!!! (So surgery doesn't get cancelled)
Strength for Mike and I
Balance - that we can give enough to the big girls so they don't feel left out