Evan's 3rd CT Scan

Here are pictures of Evan's at 9 months and Emma at 3 years taken 6/18/08.
https://www.searsphotos.com/?shareid=S206361859lUT53949682

Evan is 5 months post surgery now; he is now 11months and 22 lbs. We will be celebrating his first birthday on 8/24/08. Wow that year has flown by. He has more hair now and curls. I actually have to comb it now before we head out the door. His teeth started coming early (4 months), and his first 4 molars are just starting to surface, now and then when he smiles you can see his teeth. At 9 ½ months he started walking and is now climbing. His newest words are WHEEEEE, me, and I think he says feed me when Emma has food and he just said baby. He used to call me Ma Ma, but is now saying Mommy. Sometimes he hums to the ABCs and is currently taking swim lessons with his Big Sis. Evan’s and Emma’s smiles, laughter and hugs are the best part of the day.

On July 8th, He took this 3rd CT-Scan and blood test to measure his NSE (Neuron-specific Enolase) number. We were so grateful that his Scan came back negative. As you know we were a bit concerned about his NSE numbers since they went up a bit after the surgery so we were anxious to get the new counts. Unfortunately, for some reason they had issues measuring the NSE numbers again so they had to do another blood test and we had to wait another week. On July 31st, we met with his oncologists to discuss the results. Fortunately, the numbers did go down this time to 17.2. Although this number is still higher than normal range (3.7-8.9), the doctors were not at all concerned. Turns out that the NSE count is not a proven tumor marker and they don’t get concerned unless it’s in the 100’s. In about 90% of the cases, they are able to track HVA and VMA levels in the urine to provide an accurate indicator. Unfortunately for Evan, he was in the 10% whose cancer did not present elevated HVA and VMA levels before the surgery so this is not something they can track.

The good news is that the based on the pathology and biology of this tumor, the odds of reoccurrence are very low and even if it were to come back, it would reoccur in the neck, which they would easily see with the CT-Scan. We also learned that the tests and oncology visits will only continue for two years (from day of surgery). His next CT-Scan will be scheduled in 3 months from now, in Oct 08. After a year of testing every three months, he will be tested every 6 months for another year. Then that’s it, no more oncologist, CT scans and blood work.

I met Evan’s new ophthalmologist at Emory on 5/13. He had called pathology and verified that the sympathic nerve was found the tumor that was removed, meaning his horner’s syndrome would be permanent. I looked back at some of the professional pictures Evan took at 2 ½ months and he might have had a slight droop even then. It’s hard to judge the eyes the first 3 months of life since they aren’t very focused. He also confirmed that Evan has the flushing symptom that goes along with Horner’s syndrome. The flushing on the one side of the face is not nearly as bad looking as it was right after surgery. I think because the other side does show some color. We will have to see how it goes when he plays sports or works out someday. The Dr also indicated that Ptosis (droop) surgery may be helpful in the future. Pictures were taken in the office and we will follow up in six months.

I met with a dermatologist at Emory for a second opinion on Evan’s birthmark on 6/3/08 on the same eye has the Horner’s syndrome. I wanted to see this DR earlier, but I couldn’t get in. The first opinion was Evan had a hemangioma and it would fade away with time, macular, with no capillary or cavernous component. The second opinion is that it is not a hemangioma; that he has thin skin (atrophic) in that area and the red/pink/indigo color is from a blood vessel and it wouldn’t go away. Pictures were taken in the office, and we will follow up in 6 months. Believe it or not, people can see his birthmark from a distance and have asked me if it is a bruise, however, they don’t really say anything about the droop or pupil dilation, but everyone notices his beautiful blue eyes.

Love,
Evan, Emma, Deb, and Mike