Sterk Family Setback

So... as most of you know we have encountered a small setback on life. On Oct 22 Jer went to the dr. b/c he had blood in his urine and was sent for a CT scan and they found some cysts in his pancreas, liver, and both kidneys. At that point they decided they wanted to look some more and sent him for the contrast dye type of CT scan. That scan showed us that there were 2 masses in his right kidney that have blood flowing to them. Possibly malignant. So... the local urologist set us up for an appt. at U of M to see a specialist. After weeks of fighting with Priority Health to be able to go to U of M, they told us no. It is not in their "network." We had to cancel our Dec. 19 appt. at U of M to be given a Jan. 14 appt at Wayne State. (Priority's choice of hospitals.) Jan 14!?! Are you kidding me? Well that's exactly what Jer's dr. told Priority. Absolutely not, we are not waiting that long. So... somehow as of Weds Nov. 26 we got a call and were told we had a Wayne State appt. on Dec. 2! Yesterday. How they got us in so much sooner I do not know. But man were we ever thankful. That gave us just a few days to get all of his records gathered and all the CT scans onto a disk to take with us for the Wayne State dr. to look at. The dr we met with at Wayne State is Dr. Cher and he seems very knowledgable and caring. We feel very comfortable with him so far. Wayne State on the otherhand is for the birds. Don't stop for gas whatever you do! We learned.
So... the outcome. Jer has a rare genetic disease called Von Hippel-Lindau syndrome. I don't know how to do hyperlinks so you are just going to have to google it if you want to know more. Sorry. Here are the facts I can tell you:
It causes cysts and tumors to grow in all different areas of the body, including pancreas, liver, kidneys, epididimis, adrenal glands, retina, spinal cord, cerebellum, and brain.
It affects everyone differently.
There is no cure for it.
There is a 50% chance that Kaya has it. Please pray she does not.
So far everywhere they have looked there are cysts.
The 2 masses in his right kidney are kidney cancer. Otherwise known as renal cell carcinoma I believe. Neither chemo nor radiation touch kidney cancer. They are not an option. At this point the largest tumor is 3 cm. They do not fear that tumors smaller than 4 cm have spread to any surrouning tissues or organs. So, we have caught it early. Thankfully. He eventually will have to have a partial naphrectomy, which is removal of the tumors. So removing only parts of the affected kidney. They want the tumors to be larger (4cm) before they take them out b/c they will eventually grow back and will have to again be removed. They want them to grow before surgery so that these procedures will be spaced as far apart as possible. Each time a portion of kidney is removed it decreases it's functioning.
We were given 4 appt's to schedule. 3 are scheduled. We will know tomorrow too if we have to go for a liver biopsy. He was hoping to not have to send us at this point, but there is a suspicious mass in there also. He was going to review the scans again and let us know.
We have an MRI of his brain and spinal cord on Sun PM. This is the one that is the scariest to me. There is the possibility that there are cysts in there. What I have read about them is that they can cause blindness, hearing loss, possible retardation. Please pray this scan is as negative as can be. I am scared to death to get the results. Jeremy has not noticed any of the symptoms in himself.
The other 2 that are scheduled are with an opthalmologist and an audiologist to check his hearing and vision at this point so they can monitor it from here on out.
The one yet unscheduled will again be at Wayne State with the genetic testing center. Not sure what they do with all the blood they will need, but I am sure we will find out once they call us with a date. Since Jer is adopted, we have no medical history to go off of. We have no idea if either of his parents had this disease. The genetic testing would be done regardless of lack of medical history.
That is about all I know at this point. I stole my Livestrong yellow cancer bracelet out of Kaya's dress up tub and put it on. It is a good reminder for me to stay positive and keep plugging away at life. Hopefully in the next couple of weeks we will have even more information about the direction our family is headed in. I will keep everyone posted as much as possible as we find things out. Please keep us in your thoughts and prayers. Please pray the MRI is negative, that my daughter got my good chromosome # whatever it is, and that those kidney tumors are slow growing. They haven't been watched enough at this point to know. We love you all and couldn't get through this without the support and strength of our wonderful family and friends. Please hug your family members extra tight tonight.