Emily Update

Yesterday Emily's surgery was confirmed and she will be having it next Tue, Feb 28th. We need to be there by 5:30 am and her surgery is scheduled for 7:30 am. The nurse told us that they reserved the room for 4 hours and that it doesn't mean the surgery will take that long just that it could.

I just called Emily's doctor and her test results are in but we are waiting for him to call us back. So we should know more information soon, I will post as soon as I can. I am feeling pretty nervous and anxious right now.

Also Emily made a post on her blog about her experience this last week.

Edited for UPDATE:

So we heard back from the doctor and he told us that they found a nodule in her thyroid and cancer in the lymph nodes of her neck. He also said (and this is the good part) that it has NOT spread to her chest and her lungs are clean so YAY! So next Tuesday he will take out the entire thyroid and all visible and reachable nodes on the left and right side of her neck. Just in case you didn't know there are 160 lymph nodes in our necks. So obviously he can not get them all. The rest will have to be killed by the iodine 131. Her blood tests also all came back normal. So for me and Scott this sounds like great news. Praise God that it is not anywhere else.

Also our doctor is going to be getting us numbers to an endrocologist most likely from Loyola (Ronald McDonald Children's Hospital) or the Children's Memorial Hospital in Chicago. We also got a name from Scott's basketball coach of an endrocologist that he and his wife liked. His wife also had thyroid cancer.

Scott and I have also been talking to a woman who is an advocate for the American Cancer Society and a Papillary Thyroid Cancer survivor. One of my best friends, Jami, in -laws gave us her contact information. We are very grateful to them for that. She also had the exact same surgery and treatments as Emily. We have found great comfort in speaking with her.

Her are some key things she as said....

"I am very involved with the American Cancer Society. I am a patient partner and advocate. What this actually means, is that I am a thyroid cancer survivor and can now offer advice, support, and wisdom...having lived thru this. I am a human information support person. I have been matched to many patients since then....

As far as, the treatments....you asked if this sounded right.....Yes, that is exactly what my treatments were. I will say this....they are painless...and we are fortunate in the fact that we do not require chemo. While it will be heart wrenching to see your daughter go thru surgery and recovery....she will do it. She will be scared and very sore....but with the love you have for her.....time will heal and she will make it. I myself, have talked with many thyroid cancer patients and am happy to say, enjoyed that I could offer hope. I am sure that they explained to you and your wife that Emily will be on synthyroid for life. This too...is a maintenace medication and that is all you have to do to maintain daily living. My heart goes out to all of you.....the stress alone is so hard to deal with.....

Now...let me offer you some very sound advice. I had a wonderful doctor. I was referred up to Milwaukee...to the top head and neck cancer doctor in the Midwest!! He was so good. It took a very long time to be diagnosed for me....but once I got into him....he looked at all my MRI"S, Cat Scans, etc...and told me and my family I had this cancer. He also said....You will be fine.....It is the most curable cancer to treat. He said...If you are going to get cancer... this is the one to get..because.....once they remove the gland...and follow it up with the treatments...you go on to live a long happy life. I do hope this puts you at ease alittle."

I high lighted the part above because this is exactly what our doctor told us too. He even said if he had to choose a cancer for his daughter it would be this one. Yes that does ease our minds.

She also asked...

"I am curious...how did you come to find this out? Was Emily experiencing symptoms?"

I thought some of you may not know or remember how this all came about. This is my response to her....

"Let's see how did we find this out? About 4 years ago I noticed a bump on Emily's neck and went to the doctor to check it out. They said it was just an enlarged lymph node and that it's totally normal for kids to have them and it should go away in a few months or longer. So for 4 years we kept on eye on it (I actually felt it nearly everyday). We took her for check ups to look at it about twice a year. Finally last year we noticed there were more so our Dr. sent us to a nose, ear, and throat specialist. This was about 8 months ago and we have seen this dr. about 4 times in the last 8 months. The first visit he said that she had a few bumps and it could be nothing or it could be as bad as lymphoma (VERY scary to hear that). He put her on an antibiotic to see if they would shrink but they didn't. The next visit he said that we could do a biopsy but he wasn't worried about it and if it was his daughter he wouldn't do a biopsy. He felt confident there wasn't anything to worry about (since Emily has never even been sick) and that we should just keep coming back every few months. So 2 weeks ago we went because I noticed that there was another bump and I was really worried. So was the dr. he said that we needed to do the biopsy. This was last Monday, than on Thursday we got the news that Emily had Papillary Thyroid Carcinoma. "

Then she said...

"Very scary...to hear all of this. Well..sounds a lot like my situation. I had noticed a lump on the side of my neck and just thought I has an infection. I knew it was swollen lymphnode....and thought I would be given an antibiotic. My primary physician scheduled me for an MRI..I was shocked. They took along time to diagnose me. They called me after the MRI and told me I possibly had lymphoma too!!!Where are the affected nodes? My incision started at my collarbone abnd extends up to my ear. I has an excellent plastic surgeon. The scar does not matter!! Life does!!! ....

Once the surgery is performed.......it only goes up from there. Emily will have to see an endrocologist for life also. that doctor will be in charge of her treatments, medications and can address and concerns. There are drawbacks to not having a thyroid...but the important thing to focus on is....you can live without it...."

Also I just wanted to add (because I know we wondered and some of you may be too) that we asked Emily's doctor why we didn't know about this sooner? After all I have been bringing her to doctors for 4 years. He told us that is standard for doctors to just monitor enlarged lymph nodes because it is SO common for children to have them. He also said he is pretty confident she didn't have this cancer 8 months ago (but there is no way of knowing either) because he checked her very thoroughly. I feel like this may be a blessing that we did not do the biopsy months ago because what if she didn't have cancer??? Than maybe Scott and I would not know that she has it now. I am thinking this is God's perfect timing too.