Back from Hiatus

Sorry for the long delay since we last posted.

Evan is 9wk post surgery now; he just turned 8 months on the 8/24. He is crawling and pulling up on everything and says Da Da, Ma Ma and Emma (at least that’s what we think he’s saying). He laughs at Emma (especially when Emma said he was going to be a ballerina, or when she dances around). It’s so great to see him laughing. And the last two nights he was able to tolerate going into his crib again with a little bit of crying. We just can’t wait until he can sleep through the whole entire night without waking up and having to take him to our bed. He loves walking by pushing furniture around the house. The other day he was pushing Emma’s small table and pushed it into a small night stand on wheels and was pushing both at the same time. He also loves pushing are bar stools and kitchen chairs.

He continues to have Horner’s syndrome, but it is looking a lot better and sometime you can’t even notice the droop at all. When he tires it gets more noticeable. Sometime his pupils are the same size for several minutes. Most likely this is a permanent condition, but we are so happy it has been progressing very well, especially in the last 2 weeks. However, we have just noticed that he has some flushing on his right cheek and ear. We only noticed this after letting him cry it out while trying to get him to sleep in his crib. We been taking pictures and will meet with an Emory pediatric opthamologist on the May 13th to discuss the symptoms. We are hoping we will get some answers, and then they will refer us to an Emory neuro-opthamologist. The oncologist don’t seem to be too concerned with this flushing, but we would very much like to understand exactly what portion of the nerve was affected to cause the Horner’s and what portion causes the flushing.

He took his 2nd CT-Scan on April 4th of the abdomen, pelvic, chest, neck, and the intestines. We are so grateful they did not find anything. However, there is swelling and scaring internally in his neck area, which is expected due to the surgery, but it makes it harder to see that area.

On April 17th we had a follow-up with the oncologist to discuss his progress and to take some blood and urine tests. We were supposed to receive the results of the tumor marker on the 4/24, but the test never took, they might have mixed up the tubes. The tumor marker that they are following for Evan is the NSE (Neuron specific enolase). His count before surgery was high 21.6 and is the only indicator that cancer was present in his blood. Normal range for the NSE counts is 3.7-8.9. The urine spot test came out normal and the CBC had a high platelet counts in the 900’s (however the next day they when down to 500’s, normal is 500 or less), most likely due to him just getting over a 2 week cold.

We took another NSE test on 4/25 and just got the results on 4/30. We had expected this number to go down now that the tumor was removed and all the other tests came back negative. Unfortunately, the count was actually higher than before the surgery. It’s now at 26.7. Although this sounds freighting to us, the doctors do not seem to be too concerned, right now, they are just looking for a trend. Having only two points isn’t enough data for them to really formulate any conclusions, especially since all the other tests and scans have come back negative. They are not sure if they can follow the results, but said they are helpful. Our next appointment isn’t until July 17th so we should find out more then.

Thanks again for everyone’s support and prayers.