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.

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.

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.

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.

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

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.

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.

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.