Update on Emily

This post is written by me and Scott.


Oh man what a crazy couple of days it has been. I don't even know where to begin.

As you know from reading my last post we were having a lot of trouble finding a radiation oncologist to talk to us. So my husband has been on the phone for the last 2 days trying to get a hold of someone. Since the doctor from Loyola never called us back we decided to call Children's Memorial. Scott left several voice mails and finally a nurse called him back Monday night. Scott explained to her Emily's situation and that it is urgent that we talk to a doctor ASAP. She told Scott that patients aren't allowed to talk to doctors only doctors can talk to doctors. So Scott asked if there was a number for their doctor we could give to our endocrinologist.

At this point we were tired of the phone tag game and waiting for a doctor to call us back. This is Emily's LIFE we are talking about. So Scott called Children's Memorial's pediatric radiation oncologist himself and he told me she was very nice and she told Scott she would call him back. Guess what? She NEVER did.

Tuesday morning someone at Scott's work suggested Lutheran General. So Scott got back on the phone and called them and talked to one of their nurses who worked in oncology. He explained Emily's situation all over again and this nurse said that she thinks it's very important that Emily be seen right away and that she would call us back. So here we go again right? Well no this nice lady called us back and said that she spoke with the doctor (who was in surgery) and that as soon as he is out of surgery he will see how soon he can see Emily this week. So long story "short" we got an appointment to see him on Friday morning. We were very excited and I was so impressed with Scott's determination to find Emily a doctor. We were still going to go to the scheduled thyroid scan at Loyola, but we were going to have them transfer the results to Lutheran General.

Scott called our endocrinologist to tell him that we found an oncologist that would see Emily sooner than next week. He wasn't in the office so Scott left a message with the nurse there. This all happened before noon on Tuesday and we still had the scan at Loyola scheduled for 3:00pm. When I got to Scott's work at about 2:15 to pick him up for the scan he told me that the oncologist from Loyola had just called him. He was on vacation but apparently when our endocrinologist got Scott's message that we were going to go to Lutheran General he called the Cancer Care Center at Loyola and wouldn't leave them alone until they promised to get the oncologist to call Scott and talk to him personally. The oncologist explained to Scott that he was on vacation, but that he was only at home and that he would come to the hospital and see Emily later this week if we needed him. This was reassuring but we didn't cancel our appointment at Lutheran General just yet.

It was now time to get to Loyola for Emily's scan. Upon arriving Scott, Emily, and I were sent to a waiting room where we're expecting to wait for a nurse to call us in for her scan. Pretty soon though, in walks a doctor who looks very important who takes us to a conference room. We all sat down and he told us that the wrong test was ordered for Emily and that we will have to wait 2 hours because they had to order some iodine for Emily to drink for the first part of her test and then come back on Friday for the second part of her test. We were stunned and wondering what the heck we're going to do for 2 hours when he explained to us that he was the Director of Nuclear Medicine at Loyola and that he would be taking care of Emily personally for the duration of her treatment at Loyola. All of a sudden we are getting the VIP treatment!! I really believe that this is an answer to prayer and Scott's hard work and determination to find our girl a doctor ASAP.

Ok so there is more to tell...this Doctor was so incredibly nice and full of information. He felt really bad that the wrong test was ordered and just wanted to do everything he could to serve us. So we sat with him for about an hour as he explained more in depth what will be going on with Emily. He explained that the first thing she needs to do for her scan is to drink a low dosage of iodine (radiation). He explained that Emily will be radioactive for 3 days and told how to use precautions at home to prevent any of us from coming in contact with the iodine. Basically we just have to stay away from her urine, which isn't so hard to do. So I clean the toilet after every time she uses it. He also said that Emily shouldn't sit close to Frank and Madison for long periods of time just to be extra cautious. Anyway the reason she needs to drink this iodine is so her thyroid cells will light up when they scan her on Friday to locate any and all of left over thyroid cells/cancer.

After that if she has less than 2% (that was just a number he threw out there I'm not sure what the actually % would be) of thyroid cells left in her body than they won't do anything further. She would just start to take her sinthryoid and we would continue to monitor her. If she has over 2% left of cells than she would need radiation treatment using the iodine to kill everything that is left. This is when the sad part comes in...Emily will need to stay at Loyola and be completely isolated from everyone for at least 48 hours, maybe even 72. We would not be allowed to stay with her and would only be allowed to visit her for 30 minutes a day. This was EXTREMELY hard for Emily to hear and for us. Emily immediately started to cry and so did we. The doctor tried to help comfort Emily and assured us that she would only have to stay if the scan came back higher than 2%.

He also spent some time explaining the different opinions on treating thyroid cancer and why Loyola treats it the way they do. He told us that if we wanted to get a second opinion on the treatments after the scan that he wouldn't be at all offended.

Well, anyway, like I said we talked to him for about an hour and then we went for a drive looking for a Target (which we never found)to get Emily a movie she wanted. After another hour we went back to the hospital and we were taken in immediately by a young doctor who took a picture of Emily's neck and gave her the radioactive iodine that she had to drink. Emily drank it with no problems and later said it tasted just like water.

That kind of sums up all the news I guess. We're now waiting for Friday to come to go back to Loyola and get Emily's scan. (Scott did call the Lutheran General oncologist and put that appointment on hold) Emily is feeling fine despite being radioactive. She's not glowing or growing extra fingers (yet) but she did get a bit of an upset stomach last night and threw up. She's feeling fine now.

Scott and I are both tired. Yesterday was a hard day. We finally got to talk to a doctor, which was great, but the day as a whole was pretty exhausting. We're anxious for Friday to get here and hoping that Emily's results will come back less than that 2% level so we can stay away from another hospital stay.

I'm not sure what else to say. I think that's everything, but it just seemed like so much happened yesterday and this is only a little bit. I think I got all the important parts though.

Thanks again EVERYone SO much for praying for us this has been one hard but amazing experience for us. The love, support, the togetherness, the prayers, our neighbors bringing us food, the relationships that are forming with fellow bloggers, everything has just been so amazing to witness.

Ken and Tammy if you are reading this thanks so much for offering to make us dinner again on Friday. It is very much appreciated especially because we will not be home all day Friday.

Sadie thank you so much for the AWESOME gift you made for Emily we all just love it so much and think it's just so neat that you did that for her. Thanks!

Dad Miller thank you so much for coming over and making us dinner tonight!!!!

Mom and Dad Kunze thanks so much for watching our kids last Friday so Scott and I could go on a date. For those of you who don't know Scott and I received a gift certificate to Red Lobster which was so awesome.

Mom and Dad Miller, Mom and Dad Kunze, Georgie, Gretchen, Corey, Kim, and Steph thank you so much for all of the baby-sitting you have done for us. I just can't tell you how big that is that you all would help us in such a way.

Scott and Crystal