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.
Sunday, October 26, 2008
Thursday, August 7, 2008
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
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
Friday, May 2, 2008
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.
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.
Thursday, March 6, 2008
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
Love,
Deb, Mike, Emma & Evan
Wednesday, March 5, 2008
mIBG Test Today
We just got home from the mIBG test and just got a call from Dr Wheeler with the preliminary results. Although the results are preliminary, he feels confident that they won't change, which is a good thing since they came back negative. Our prayers have been answered.
We'll meet with Dr Wheeler tomorrow morning to discuss all the results and the follow up scans. No additional treatment should be needed at this point.
Thanks again to all of you for helping us through the past two weeks.
We'll meet with Dr Wheeler tomorrow morning to discuss all the results and the follow up scans. No additional treatment should be needed at this point.
Thanks again to all of you for helping us through the past two weeks.
Tuesday, March 4, 2008
3 more pokes and Pathology Results
The pathology report confirmed today that Evan has (or hopefully had) Neuroblastoma. The good news is the limp node and the bone marrow biopsies were negative and although the tumor was neuroblastoma they’ve termed it as favorable histology, which essentially means that the cancer cells are the less aggressive type.
http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_neuroblastoma_staged_31.asp?sitearea (see staging, prognostic markers, tumor grade)
Today Evan received a radioisotope injection for tomorrow’s mIBG scan. This was after the IV team poked him 3 more times. It’s a good thing the third attempt worked, because if it didn’t, the only spot left for them to poke him was his head. Because of this, the doctor changed the orders so that Evan could go home with the IV so he won’t need another IV to put him to sleep for tomorrow’s test. Now we just have to make sure he doesn’t pull it out (we have it wrapped up pretty good).
Tomorrow’s mIBG scan will take about two hours, and hopefully this will be the last test. We will meet with the oncologist team on Thursday to discuss the results of the tests and any treatment if needed. As long as the mIBG test comes back negative, Evan shouldn’t need any additional treatment.
http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_neuroblastoma_staged_31.asp?sitearea (see staging, prognostic markers, tumor grade)
Today Evan received a radioisotope injection for tomorrow’s mIBG scan. This was after the IV team poked him 3 more times. It’s a good thing the third attempt worked, because if it didn’t, the only spot left for them to poke him was his head. Because of this, the doctor changed the orders so that Evan could go home with the IV so he won’t need another IV to put him to sleep for tomorrow’s test. Now we just have to make sure he doesn’t pull it out (we have it wrapped up pretty good).
Tomorrow’s mIBG scan will take about two hours, and hopefully this will be the last test. We will meet with the oncologist team on Thursday to discuss the results of the tests and any treatment if needed. As long as the mIBG test comes back negative, Evan shouldn’t need any additional treatment.
Monday, March 3, 2008
Still no Pathology Results
We talked to Evan's oncologist today. Unfortunately, he still hasn't gotten any results from the pathologist. We're not sure if that's a good sign or a bad sign, or means nothing. We're not going to read anything into this and hope we get it tomorrow. I'll provide an update once we know something.
Thanks again.
Thanks again.
Friday, February 29, 2008
Today's Bone Scan
Today was another long day at the hospital for Evan’s bone scan. We left our house at 8 am and didn’t get home until 6:30. Poor Evan, the scan was supposed to start at 1 pm, but didn’t start until 3 o’clock because it took almost 2 hours to get an IV in him. It took 5 attempts before they finally found a spot that worked. After 3 different nurses tried four times, they called a special IV team of two skilled nurses with a portable ultrasound device. By this time it was about noon. To make matters worse, once the IV was in, they had to give the little guy a catheter (while he was awake). So around 12:30 they were finally able to give him the special radioactive tracer. Then we had to wait another 2.5 hours before they can do the scan because they had to give the tracer time to get into his entire blood stream. By this time Evan was so tired from crying, he slept until about 2:30, which was fortunate considering he was fasting because he would have to be sedated for the test. The nuclear scanning test began about 3 o’clock and finished at 5. Evan woke up shortly after the test and quickly downed two bottles.
Like I said, it was a long stressful day, but we did get a call from Evan’s oncologist, Dr. Wheeler, shortly after the test to tell us that the test came back negative, no cancer seen in the bones. What a relief that was. We’re fairly certain that Evan has no other tumors in his body and now hearing that it’s not in his bones is a great feeling. We still have to wait for the official pathology results on the tumor and the bone marrow, which we should get on Monday. We also have the full body mIBG test next week to scan all the tissue and organs. We’ll then meet with Dr. Wheeler on Thursday to discuss all the test results and discuss the next steps.
Now about today’s test; Nuclear scanning test, radioactive tracer, you start to wonder if all of these tests cause more cancer than they cure. But actually the amount of radiation is very small and the equipment used to scan the body doesn’t emit any radiation (at least not any more than any other big electronic machine), it just measures the radiation from the tracer in the body and creates an image. It’s actually pretty cool, we were able to see Evan’s complete skeleton in pretty good detail. Next week we’ll go in for the mIBG scan, which uses the same equipment, just a different radioactive tracer. This one has to be injected, again by IV, the day before the test on Tuesday. We’ll go back on Wednesday for the actual scan, where poor little Evan will need another IV to be sedated (but no catheter this time). We’ll be sure to ask for the pro’s for both IVs next week, there aren’t many spots left they can stick him.
Thanks again for all your thoughts and prayers, and all the wonderful meals we've been given.
Wednesday, February 27, 2008
Evan's Surgery
We just got home from the hospital. Yesterday, at 4:00 pm, Evan went in for his surgery to remove the mass. Shortly before the nurses came in to take Evan to the OR, he fell asleep in Debbie's arms. Deacon Bill, who baptised Evan on Sunday, was nice enough to stop by and give Evan a blessing and help reassure us before the surgery. Evan awoke about 3 hours later, back in Debbie's arms. All in all, the surgery was a success. The surgeon, Dr Brand, was able to remove all of the tumor and did not need to cut or remove Evan's collar bone, and there were no other complications. Unfortunately, we did find out that the tumor was malignant and is consistent with neuroblastoma. We should get the official pathology results for the tumor, limp node, bone and bone marrow biopsies by the end of this week. On Friday, Evan will go in for a whole body bone scan, then he'll have the MIBG scan on Wednesday next week. We'll then meet with the oncologist on Thursday, March 6th to discuss the pathology and scan results and begin planning out the treatment process if needed. For now, we are still hopeful that this was the only mass and it has not spread to his bones or limp nodes. If it has not spread and if the surgeon was able to remove the complete tumor (no residues cells), no additional treatment would be necessary, just years of testing and followups. For now, it's just another waiting game. A week doesn't sound that long, but then I remember that it hasn't yet been a week since the mass was found, yet it feels like it's been a few months.
For now, we're just glad that Evan has recovered so quickly from the surgery. It didn't affect his appetite or his happiness one bit. He was a bit groggy last night of course, but today, he's already moving around and smiling and laughing a lot. One of the side affects of the surgery is that Evan now has a permanent Horner's Syndrome due to cutting into the nerves to remove the mass. In the scheme of things, this is a small price to pay and things can be done later if needed to make this less noticeable.
Thank you all so much for keeping us in your thoughts and prayers.
Monday, February 25, 2008
Met with the surgeon today.
Today is a day I would love to stop time and look at Evan eyes all day long. It was another long day at the Drs. Evan started getting sick on Sunday; he had a runny nose and a slight fever. With the flu going around, the anesthesiologist nurse practitioner was worried Evan might have it, which would mean we would have to postpone the surgery. After doing his pre-op at the hospital, then visiting with the surgeon, we took Evan to his pediatrician. Turns out he has an ear infection. He was put on an antibiotic and we can still continue with the surgery tomorrow at 3:45. The nurse did mention that because of a lot of people coming down with the flu, there have been a lot of cancelations which means there is a possibility of Evan’s surgery happening earlier. We hope that happens, because 6 month olds don’t quite understand the need to have to fast before a surgery. Evan is not going to be happy this afternoon. He can have pedialite until 11:45 am, after that, nothing. It has been now a month since this all started. Surgery couldn’t be soon enough.
Before talking to the surgeon today, I didn’t realize how big the mass was, it’s the size of a cherry. Although the surgeon mentioned that that is small, we thought it seems so big for such a small child. Our surgeon, was not able to look at the actual CT images before we talked to him, he only had a report. We were just happy he was able to squeeze us in, just coming back from being out of town. The surgery should last about 2 hours or so and we hope to get the biopsy results within 24 hours. The location of the mass is not easily accessible. The surgeon mentioned that he may have to pop out or cut Evan’s collar bone to get to it. The incision will be a couple inches long, but the scar should become less visible with time. The Dr did warn us that Evan will almost certainly have a permanent Horner’s syndrome because most likely, the mass is intertwined with the nerve, so removing the mass will mean part of the nerve will also come out. This won’t affect Evan’s vision and there are things that can be done later to make the droop less noticeable, but with all the other possible, unthinkable outcomes of all of this, if the only long term problem he has is Horner’s, we’ll be happy.
Evan continues to Huff and puff since 2/11. This might be related to the mass. The surgeon didn’t think the mass was pushing on any of his airway, but he did explain that there is another nerve nearby that travels to the diaphragm that may be affected by the mass. They also plan on removing any enlarged lymph nodes as well as a random sample to test.
Tomorrow is surgery, Evan was so tired tonight. He is sleeping in our bed with Mike right now. I don’t quite understand while a little 6 month old has to go through this. He just turned 6 months on Sunday. I had a hard enough time sending him just to do a CT scan. It is hard to think what will actually happen in the next 48 hours. The only thing I just pray for the best for our sweet baby boy.
Thank you all for keeping little Evan in your thoughts and prayers.
Before talking to the surgeon today, I didn’t realize how big the mass was, it’s the size of a cherry. Although the surgeon mentioned that that is small, we thought it seems so big for such a small child. Our surgeon, was not able to look at the actual CT images before we talked to him, he only had a report. We were just happy he was able to squeeze us in, just coming back from being out of town. The surgery should last about 2 hours or so and we hope to get the biopsy results within 24 hours. The location of the mass is not easily accessible. The surgeon mentioned that he may have to pop out or cut Evan’s collar bone to get to it. The incision will be a couple inches long, but the scar should become less visible with time. The Dr did warn us that Evan will almost certainly have a permanent Horner’s syndrome because most likely, the mass is intertwined with the nerve, so removing the mass will mean part of the nerve will also come out. This won’t affect Evan’s vision and there are things that can be done later to make the droop less noticeable, but with all the other possible, unthinkable outcomes of all of this, if the only long term problem he has is Horner’s, we’ll be happy.
Evan continues to Huff and puff since 2/11. This might be related to the mass. The surgeon didn’t think the mass was pushing on any of his airway, but he did explain that there is another nerve nearby that travels to the diaphragm that may be affected by the mass. They also plan on removing any enlarged lymph nodes as well as a random sample to test.
Tomorrow is surgery, Evan was so tired tonight. He is sleeping in our bed with Mike right now. I don’t quite understand while a little 6 month old has to go through this. He just turned 6 months on Sunday. I had a hard enough time sending him just to do a CT scan. It is hard to think what will actually happen in the next 48 hours. The only thing I just pray for the best for our sweet baby boy.
Thank you all for keeping little Evan in your thoughts and prayers.
Sunday, February 24, 2008
Evan's Baptism
Since we won't be traveling to Chicago next month to get Evan baptised, we decided to have it done today at our church in Georgia. Because of the circumstances, we kept it a small ceremony (only us and Deb's parents). More pictures are online at http://picasaweb.google.com/foleymic 
Early morning
Since I couldn't sleep, I got up at 5 am this morning, did some cleaning, laundry and updated our online photo album (http://picasaweb.google.com/foleymic) and created this blog from Debbie's emails.
It's going to be a very long week for us. We have an appointment in the morning with the anestialogist, then we get to meet the surgeon. At least then we should know if this will be an out patient procedure or if Evan will have to stay in the hospital. Then we have the surgery on Tuesday. After that we have to sit an wait on pathology results which can take a few hours or a few days. I just hope we get them before the end of the week.
It's going to be a very long week for us. We have an appointment in the morning with the anestialogist, then we get to meet the surgeon. At least then we should know if this will be an out patient procedure or if Evan will have to stay in the hospital. Then we have the surgery on Tuesday. After that we have to sit an wait on pathology results which can take a few hours or a few days. I just hope we get them before the end of the week.
Friday, February 22, 2008
Evan's Eyes - Oncologist meeting.
Wednesday almost feels like a whole week away. Thursday we spent just about the whole day at Children’s Healthcare of Atlanta (http://www.choa.org/cancer) with a pediatric oncologist team and our pediatrician. The mass is on the left carotid space, immediately above the thoracic inlet (his neck). The size is 2.3 x 1.9 cm. Based on the size, its location and the Horner syndrome, the doctors are fairly certain it’s neuroblastoma. This is an aggressive cancer, but there still is the possibility that it’s benign. If not, then we just pray that we caught it early enough before it has had a chance to spread. Assuming it is neuroblastoma, the prognosis is still very good since it was caught before age 1.
Monday morning we will be meeting with the surgeon who will be removing the mass. The surgery is scheduled for Tuesday afternoon. The surgeon will remove as much of the mass as he can and will also do a bone and bone marrow biopsy while Even is under anesthesia versus waiting for pathology results then having to sedate him again and wait a few more days for more pathology results. These samples, as well as, a biopsy from the mass will be sent to a pathologist to analyze. Hopefully we will the results before the end of next week. We also have a MIBG scan scheduled for Wednesday, March 5th. This will be a whole body scan which will be specifically looking for neuroblastoma cells so that they can see if the cancer has spread anywhere else in the body (except for the bones, which is why we need the bone and bone marrow biopsy).
Fortunately, since Mike was scheduled to be in India next week, my parents had already planned on coming down to help me with the kids. They will get here Sunday afternoon. We’ve also decided to get Evan baptized on Sunday since it is highly unlikely we will be able to travel to Chicago in March. Thanks for all your thoughts and prayers. http://www.cancer.gov/cancertopics/pdq/treatment/neuroblastoma/Patient/page1
Monday morning we will be meeting with the surgeon who will be removing the mass. The surgery is scheduled for Tuesday afternoon. The surgeon will remove as much of the mass as he can and will also do a bone and bone marrow biopsy while Even is under anesthesia versus waiting for pathology results then having to sedate him again and wait a few more days for more pathology results. These samples, as well as, a biopsy from the mass will be sent to a pathologist to analyze. Hopefully we will the results before the end of next week. We also have a MIBG scan scheduled for Wednesday, March 5th. This will be a whole body scan which will be specifically looking for neuroblastoma cells so that they can see if the cancer has spread anywhere else in the body (except for the bones, which is why we need the bone and bone marrow biopsy).
Fortunately, since Mike was scheduled to be in India next week, my parents had already planned on coming down to help me with the kids. They will get here Sunday afternoon. We’ve also decided to get Evan baptized on Sunday since it is highly unlikely we will be able to travel to Chicago in March. Thanks for all your thoughts and prayers. http://www.cancer.gov/cancertopics/pdq/treatment/neuroblastoma/Patient/page1
Wednesday, February 20, 2008
Evan's Eyes - CT Scan Today results
About an hour after getting home from the CT scan we got a call from our doctor with the results. Evan has a mass in his neck. They will have to do a biopsy. We will schedule it next week. All we can do now is hope and pray for the best.
Evan's Eyes - CT Scan Today
After getting a second opinion and going to the dermatologist and finally talking to our pediatrician. We will still do the CT scan today. Right now they are all telling us the benefit outweighs the risks. The birthmark was diagnosed as a hemangioma, but not one that would cause Evan's eye problems. The good news is that the birthmark should go away in time.
Sunday, February 17, 2008
Evan's Eyes - Update
Here is an update. After being very concerned my pediatrician suggested to take pictures of Evan's eyes. I started taking pictures and Evan's dilation issues are happening about twice a day, what I can catch anyway. On Valentine's day it happened 6 times, so I made another appt on Friday with the optomologist again to give updated facts after taking many pictures that captured his left eye with a droopy eyelid and a small pupil (same eye with birthmark) and the right eye dilated (large pupil). The droop and dilation issues are happening at the same time. These episodes continue to come and go, therefore they go back to normal. They think Evan has Horner's Syndrome. The optomologist's opinion at this point is to do a CT Scan. We have one scheduled on Wed at 1PM, but I still need to talk to my pediatrian. I'm going to try to squeezed in another appt with another group of optomologist and a dermatologist (because of the birth mark near his droopy eye) before Wed. Mike leaves for India on the 25th, so I'm rushing to get as much as I can done before he leaves. If we go with the CT Scan we should get the results in 24hrs. In the office yesterday, they put eye drops in and dilated both eyes. Also, I decided with the permission from my DR to stop the nuberlizer treatments of Pulmicort and Albuterol. Although the optomologist and the pediatrician did not think these medicines were causing these issues.
Friday, February 1, 2008
Evan's Eyes
For the past few days we have noticed that Evan's left pupil is sometimes smaller than the right and occasionally his left eye lid also droops. This only happens a few times a day for a couple of minutes. After taking him to his pediatrician, today we took him to a pediatric opthamologist (a medical eye doctor) where he was diagnosed with physiologic anisocoria. Nothing serious, most likely he had this at birth and will continue to have it. I'll have to do more research. He will be looked at again in another month. His droopy eye lid is slight. If it wasn't slight then he would do more testing. Basically his eyes were dialated and his pupils were normal in dark and normal light. I usually only see it in bright light.
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