Evan is now 2!

Easter Pictures
https://www.searsphotos.com/?shareid=S206929079lXA82FC7W8J



Emma 4 and Evan almost 2 Pictures

https://www.searsphotos.com/?shareid=S206995616lZNC359UMQH

Evan had is 2nd birthday a few weeks ago (then a few more cakes in Chicago with family). He still very snuggly. He still has a lot of baby looks to him, which I wish I could just hold onto. He started jumping when he was about 18 month old. He still loves to be chased especially when we have to change is diaper. He continues to climb on everything he can. Like all little boys, he loves cars and talks about them every day. He’s even taken over Emma’s doll house to use as his garage (at least someone’s using it). His singing has increased to singing all the words to Twinkle Twinkle little Star, Rain Rain Go Away, and Bob the Builder’s slogan. He even tries to keep up with Emma when she sings the Disney’s Car song “Real Gone”. He is singing more letters in the alphabet. Despite his singing abilities, he is continues to not say full sentences. Although at night, when the house is quite (Emma is not talking) and he does not want to go to bed, he babbles away which I think are full sentences If only we could understand his conversation. He loves watching the Disney movie Cars. He is saying all done (finally), my turn, Emma (he really doesn't say Evan), watch Thomas, press play, race car, duck duck goose, choo choo train, Yea chips, not me, and thank you. He can name a couple colors, count to almost 10, take off his clothes and diaper, can put pieces in wood puzzles, and just starting to work with real puzzle pieces. His has not been eating much at all, so it is very hard to even know what is favorite food is now. He does like Disney Cars Campbell soup and popcorn. He loves to drink juice, milk and loves his sippy cup. He continues to gain weight and is now 30lb at our last Dr visit.

He had a great time at Disney in June. He really impressed us going into the 3D movies by sitting and wearing his 3D glasses, although each movie scarred him. He loved swimming every day on vacation. The swimming pool was bath water, so it was hard not to enjoy it.

Starting this year I never had to cancel so many play dates because Evan or Emma was sick. In the beginning of the year, I felt Iike I was at the pediatrician office every week. He either had a bad cough, running noise, ear infection, slight fevers, or diarrhea. We’ll be taking him to Mike’s allergist next week to have him tested for allergy related asthma. His symptom is a bad cough which I first noticed in Nov 2008. It sounds like he is gagging or hacking. He had to do several preventive treats with the nebulizer. He hasn’t had an episode of asthma since May so we are a little relieved and we stopped the preventive treatments.

His ears have been another thing; he has never shown signs of an ear infection; however, he has had an ear infection every month for the last 6 months (Jan 09-June 09). He failed a hearing test, which was most likely due to the ear infection he had at the time, but he did pass the follow up one at the ENT’s office. I find that looking in the ears can be really subjective to the person that is looking in his ears. On two accounts, I have heard two different opinions in his ear diagnosis. The ENT recommended tubes due to his speech delays. His pediatrician wants us to hold off right now, be believes that his ear infections will lessen now that he will be two and whatever speech he has lost he will catch up so at the time we did not go forward with the tubes. Mike and I feel his speech has not been progressing and we had it evaluated and they recommended speech therapy due to his speech delays, which he started on Monday. We really struggle communiting with him even though I’m so verbal and he throws tantrums (he buries his head in the floor and cries) because of it. Even though he hasn’t had an ear infection all summer, we’re still concerned with his speech development so we’ll go back to the ENT later this month to see if he still recommends tubes. If so, we’ll go ahead with them after his next CT scan on October 6th.

I think most of you know of the little scare we had with Evan’s April CT scans and NSE results. And it did not help that there was a lot of waiting in-between tests. I’m sorry I did not update the blog through all this. For those of you that don’t know, on April 9th Evan had his 3 month CT scan of the neck. We received a phone call within 2 hours saying they found a bone lesion on the CT scan. The Oncologist informed us that radiology didn’t think it is cancerous, but because of his background they have to make sure by taking an MRI and check for bone cancer. Then we received the NSE test results which were 28.3 the highest they ever been. We were on pins and needles. Our second Oncologist called us and wanted to put the NSE results to rest. She ordered full sets of CTs (the chest, abdomen and the pelvic) since we will be going to 6 month visits. I requested another NSE test and urine test too.

His full sets of CTs taken on 4/17/09 came out normal!! And the MRI taken on 4/20/09 of the Face, orbit (behind the eyes) and neck were normal too!!! The lesion that they saw on the right cheek bone appears to be air in the bone which is part of the normal growth process.

One spike in the NSE results can’t really mean anything at this point, unless it continues to rise. Especially if non-cancerous and other body conditions (infections) can cause the numbers to go up. The NSE test taken on 4/20 continued to rise again to 42.2. On 4/23, the oncologist believed that he still had an ear infection even though he just finished a round of antibiotics for a double ear infection. We were hesitate to put him on another antibiotic since he has had 5th prescription since the end of Jan, I took him to our pediatrician office the next day and she believe he had mild dullness in his right ear.

The Oncologist again reassured us that the scans are more reliable then the NSE results (unproven tumor marker). Since the CTs and the MRI came out normal we were relieved and the doctors were not at all concerned. On 4/23, the urine test results came back normal. The urine test VMA was 8 (normal range 0-27) and his urine HVA was 12 (normal range 0-42) this was great news since these two tumor markers are proven ones for his cancer. Evan had only taken 2 urine tests in the past and both of them were normal. They stop taking them because it never showed up in his urine.

Normal NSE Levels (3.7-8.9)
2/21/08 21.6
2/26/08 surgery tumor removal
4/25/08 26.7
7/17/08 17.2
10/9/08 12.5
1/8/09 13.8
4/9/09 28.3- double ear infection- put on antibiotics
4/20/09 42.2- finished his antibiotics 4/18

Well, even though the NSE was high, all the other test results confirm that he is cancer free. Our next appt will be in next month.

Here are some more photos taken on 2/16/09
https://www.searsphotos.com/?shareid=S206716823l2869YPHNXD




Our little Bugga Boo, little man, one sock man, Evan is now 17 months old. For some reason, during the day, he normally pulls off one sock and at the end of the day he continues to wear just one sock. Sometimes it’s the right foot, other times it’s the left. He also doesn’t like to sleep with blankets. If he’s asleep, but not in a deep sleep and you try to cover him up, he’ll kick off the blankets. He had climbed out of his crib about two weeks ago, breaking Emma's record. At Grandma’s Chicago house, I was playing with Emma’s new cash register and talking into the microphone and I just happen to say to Evan I love you and my heart just jump for joy when I heard him say it back. That same day he also took us by surprise and sang words to Twinkle Twinkle Little Star. He has hummed to songs before, but this was the first time he actually sang words to a song. When we came back from our Christmas in Chicago trip, Evan woke up one morning and did not see Daddy, and he said I want Daddy. I want Daddy. My heart melted again. I was so happy Mike was in the other room at the time. One of his new words is TV, the letter Y which I call the YMCA, car, turkey, juice box, and up-ee. He likes to put toys in and out of buckets, and has just started to build with logos. He makes the car sound zoooooom. Evan doesn’t mind if Emma open’s his string cheese or on rare occasions brushes his teeth. However, he doesn’t want her dressing him (I think he knows it’s only a matter of time before she tries to put her princes’ dresses on him). He does like to join her standing on a chair, or eating some of Emma’s food she could not finish. He really likes doing things she is doing or mimicking noises she is making and sometimes they get very loud. Milk is his favorite food; I have to buy two gallons a week just for Evan, although the DR just said I needed to cut back. He now climbs in his booster chair when he’s hungry and waits for us to bring him food. I can’t wait to hear more what he has to say.



On any other day when I approach the hospital I’m fine passing it. However, for some reason the site of it of it on 1/8/09 the day of his 5th CT Scan made me teary eyed. I told myself, I just needed to stop and I was fine for the rest of the visit. The hospital visit went smoothly. They drew the blood for the NSE (Neuron-Specific Enolase) his tumor marker and the CBC (Complete Blood Count) at the hospital. Evan did not want to wake up from sedation, sometimes I just wish we could let him sleep until he woke up on his own. He wasn’t very hungry after he woke up this time. He has to fast every morning of any of his CT scans. His DR visit was the very next day to go over his Neck CT Scan results and CBC. The CT scans and CBC came out normal!!



We had to take the NSE test twice, his blood always clots for this test. His blood counts actually increased slightly this time from 12.5 to 13.8, normal range (3.7-8.9). I really did not expect this. I was hoping his counts would finally be in normal range. Since I know counts can fluctuate and the NSE test is not a proven tumor marker and DRs don’t get concerned unless it’s in the 100’s, I won’t worry too much at this point. The Dr said since we were a little short of a year since surgery 2/26/08 he would have to take another CT in 3 mos which will be scheduled in April 2009. The next CT scan should be taken after 6mos have past.

October Scan

Here the link to Evan's 1st Birthday Pictures
https://www.searsphotos.com/?shareid=S206370240l3RSB774E7V

Wow the past three months went fast. Evan is now 14 months and we are trying to savor all the baby he has left. He still snuggles and gives really good hugs. He runs into the garage every chance he gets to play with the outdoor toys, especially the chalk. He opens doors and can climb up the ladder on our play set. He is doing things Emma did at 18 months; it must be the boy in him, or trying to keep up with big Sis. He trys to say different words now and then. Recently he has said milk, shoe, Dora, backpack, water, and choo choo. We are singing the ABCs together, he can say some letters. His favorite’s letters are D and G. He has gotten a little picker in the eating department, but still eats well and loves his milk and smoothies. He even uses the potty before bath time. He loves grabbing phones and the remotes. He likes the phone so much, I don’t grab it from him right away, so watch out he might call you. He doesn’t suck his finger, or pacifier, or chew his blanket or is attached to anything yet. The other day he did a summersault, I think the other kids at the YMCA must be teaching him things, Emma hasn’t been doing them and he isn’t in gymnastics. He likes to brush his teeth, just started using a spoon, and can take off his pants.

On Thursday, 10/9/08 we went for our 4th CT Scan of Evan’s neck. Mike and I take turns with him in the Scan room. There weren’t any problems giving him his IV, it was in the first try. I like when they put the numbing spray on him. He didn’t even cry and it did not seem to bother him. It is still hard for me to go back to the hospital and very hard to sit in the Scan room. However, the nurse and the anastelogist stayed in the same room with us which makes me feel more at ease. We are grateful the CT Scan came out normal. The NSE (Neuron-Specific Enolase- his tumor marker) blood counts dropped 5 points and continue to trend down to 12.5 and are almost in normal range (3.7-8.9). His next CT will be scheduled in January 2009 and he has an eye appt in Dec.

Hope all is well and have a Happy Halloween and enjoy your Holidays.

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

Evan's 8 month pictures

https://www.searsphotos.com/?shareid=S206196529l55SD73SJPH

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.

I’m so glad all our prayers are working. For Evan having neuroblastoma, we can’t ask for a better possible outcome than it to be classified today as staged 1 and low risk, basically he is now in remission. For now, no additional treatment will be necessary, just some follow ups. In about three or four weeks we will be back to do a CT scan and take some blood work to establish a baseline. Thereafter Evan will have CT scans and blood tests every 3 months for the first year and then they will space them out further. They will further compare his blood to the neuron specific enolase (NSE) which appeared elevated before the surgery. Well, I’m so glad we can take a break for now after going to 22 Dr appts in the last month. We can’t believe it’s only been two weeks since first learned that Evan had a tumor, it feels more like two months or two years. Granted the best thing would have been for none of this to have ever happened, but since it did happen, we couldn’t have been more blessed with this outcome and we feel so fortunate to have such wonderful friends and family like all of you to have helped us through this. Thank you all.

Love,
Deb, Mike, Emma & Evan