During the next ultrasound the cysts were a little bigger. He then referred me over to a place for genetics to do a 3D ultrasound. There we found out that his legs were slightly different in length and an amnio. was recommended. Down Syndrome was ruled out but over the next few months the by-weekly ultrasounds showed an increase in size for 1 of the cysts and it seemed to be filled with fluid. At 22 weeks the fluid was drained in utero because it had grown dangerously large. They drained over 100 cc from the cyst. There was still some fluid in the cyst but it was not dangerous any more. The next couple of ultrasounds showed no increase of fluid and a slight decrease in size of the cyst. My doctor said that there was nothing else we could do until the baby was born.

At about 30 weeks I developed hypertension and was ordered bed rest until the baby was born. I was so big that I welcomed it. The doctor also said that the baby was big from the start but my husband is a big guy so  he also said that I had a lot of amniotic fluid and knew that I would go in early because of the baby's size and extra fluid. This would be my 3^rd c-section.

Christos was born 6 weeks early at 7 lbs 14 oz. (Warning kind of gross) The first thing I remembered was all the amniotic fluid splashing onto the floor and underneath me. They pulled Christos out and the first thing the doctors noticed was the grossly shaped umbilical cord and it was tied in a true knot. Christos was cleaned up and was showed to me for a minute before my husband walked him to the neonatal section of the hospital. I barely noticed his big tongue he was so beautiful. As I was waiting for the spinal to wear off I was informed that Christos had some problems including hypoglycemia and he was rushed to {...} (2hrs away). My memory is kind of fuzzy during this time but I was stuck in the hospital for 2 more days before I could make the trip to Portland. I was able to call the NICU and the nurses told me he was resting fine. Which didn't tell me much.

I went directly from the hospital doors in {...} to the NICU in {...}. Seeing my baby with tubes and needles sticking out of him made me break down into uncontrollable tears. The many doctors that were involved with his case told us his blood sugar was under control but he had a tumor on his left adrenal gland that was producing hormones. These hormones were making him go into premature puberty and that it needed to be removed. The tumor was removed successfully along with his left adrenal gland a week after he was born and he was diagnosed with BWS within the week. After careful study of the tumor itself the doctors said that it was inconclusive if the tumor was cancerous.

Christos was at {...} for 5 weeks. My husband and I would drive there and back every Wednesday and then drive there on Saturday where I would stay the night and my husband would drive back to Eugene and come and get me on Monday. I thank God that my mother-in-law was able to come and help us take care of our daughters while Christos was in the hospital. We were able to move Christos to Eugenes Sacred Heart Hospital for another 3 weeks until he came home, apnea monitor in tow.

We started doing bi-weekly blood tests to make sure the hormones didn't start producing again. I would like to say we were happily ignorant of the danger Christos was actually in during this time but I have to admit that I chose to ignore what the doctors told us. He had to be monitored every 3 months with blood tests in between. After 3 months of self- induced ignorance Christos started showing the signs the doctor told us to look for when we brought him home. Excessive hair in the pubic area, chest and face, BO, aggressive behavior and mood swings. Also a blood test showed elevated hormone levels. Then we went in for an ultrasound, then a C.T.

Christos had a tumor in the same area as the last one. The doctor needed to remove it as soon as possible. January of 2002 the tumor was removed. The oncologist sat down with us and told us that the tumor was not actually in the same place but in his pancreas. The surgeon was able to remove all of the cancer without harming the pancreas but he also found two tumors on his liver and smaller tumor masses all over the liver. He cut out as much as he could taking his gallbladder as well but then Christos was diagnosed with Adrenal Cortical Carcinoma, an extremely aggressive cancer, and it was in the 4^th phase, meaning it was spread to other organs and all of it could not be cut out.

A Hickman line was surgically implanted into Christos' chest and in March he started Chemotherapy. We drove to Portland's Doernbecher Childrens Hospital where 3 different types of Chemo were given to him over the course of 5 days. After we took him home we would have to give him hormone shots in his legs to boost his immune system. We also had to sterile clean the hickman site twice a week to make sure no infection could be introduced into his blood. We continued this for a year. He lost his hair twice and got two blood infections, blew 2 hickman lines and then had it replaced with a port-a-cath and has had 3 different oncologists.

Throughout this time the nurses and doctors said that he was the healthiest and happiest baby they have ever seen going through chemotherapy. He used to go down the halls of the Chemo word in a walker faster than most kids ran. Let me tell you it was hard keeping up with him while hanging onto an IV pole. His oncologist also said that he was responding to the chemotherapy like the adults who have survived ACC, because until this point, according to his oncologist, no child diagnosed with ACC has survived.

Christos is now 1 year cancer free. We get his blood taken every 6 weeks and he goes in for C.T. scans every 3 months. He has had a lesion on his left kidney since he was born but it has not changed. His last C.T. scan has showed a lesion on his right kidney and they are monitoring both to see if they change in any way. He will be going through Eye Surgery March 30^th to correct the muscles in his eyes and I am now in the process of getting his tongue reduction surgery done before he starts preschool in September.

Christos is an amazing child and continues to bring sunshine to our lives.

Our hopes and prayers are with you all.

The Rehfeld Family