The Scans

Since this blog documents Brynlee's journey with cancer and her spinal cord injury, I decided that I needed to get on here and blog about the scans, even though we all know what the outcome was.

On Monday, Brynlee had her MRI scan. We arrived bright and early at 7 a.m. for sedation. It did take the nurses two tries to get her IV going, and unfortunately we had the Nurse Practitioner that I didn't want to have. Since Brynlee had a reaction to the Precedex and Versed the last time she had sedation we couldn't use those drugs for sedation. The only other option is to use the Nembutol, which in the past has made Brynlee quite a grouch. However, the Nembutol worked well, and the recovery nurses were great at letting her get the entire 2 hours of sleep that they need to recover from the Nembutol.

During recovery, Brynlee had her audiology (hearing) test. One of the unfortunate side effects of chemo is hearing loss. Brynlee's hearing test went well, although there was some concern about possible fluid in her right ear, but it wasn't affecting her hearing.

On Tuesday, Brynlee had her chest, abdominal, and pelvis CT scans. For the abdominal scan she has to drink a contrast, and we were finally able to get her to drink it with the help of some root beer. In the past we have had to have an NG tube in order to get the contrast in. I was very happy about this. This day the nurses also had trouble getting the IV started, and it also took two tries. Brynlee also had some spine x-rays taken this day as well.

My first sign that something didn't look right on the CT was when they were done and had the radiologist come in to look at the images to make sure they were readable before they let us go and the radiologist came in and introduced himself to me and told me he would quickly review them and get them up to the doctors. This is the first time aside from the time when there was significant shrinkage after the first two rounds of chemo that a radiologist has introduced himself to me. I found this to be odd, and it did make me start to worry a little bit more than I already had been.

On Wednesday, she had the MIBG scan, which is the scan that uses the radioactive isotope that attaches to the cancer. This shows every spot in the body that has cancer. We opted to go straight for the IV team on Wednesday, and they were able to successfully start the IV on the first shot.

This day the nurses woke Brynlee up too soon (in my opinion) from the Nembutol, and she was a royal grouch. We had to go to the lab to get blood drawn before we could go to clinic. I wanted them to just use the IV, but I didn't know that the lab couldn't draw from the IV and that they would have to call the IV Team. So we waited an hour for the IV team to show up and then the IV didn't work and they had to poke her again anyway. So much for that bright idea. Now I know better how to do that in the future. So we were now about a half hour late for our clinic appointment, and Brynlee screamed the whole time we had been in the lab. It was lots of fun.

We met Blair upstairs at clinic and after what seemed like a long wait, which it was a long wait, a nurse finally came in and told us that Dr. Staddon was meeting with the radiologists. I knew this wasn't good. Then Dr. Staddon finally came in and was somber and began examining Brynlee and asking lots and lots of questions. I knew this wasn't good because he usually comes in excited and immediately tells me if the scans were good. Finally, he told us that Brynlee's tumor was growing again. It seems like he left for a minute and came back with Dr. Fluchel, and we began to discuss what would happen with getting her line put back in and getting her started on chemo again.

As for the details, there are two spots of Brynlee's original main tumor that have started to grow again. There is the spot in her chest by her vertebrae and then there is a spot by her ribs. The two spots that she had leftover in her liver from her first time were not larger but did light up a little bit brighter on the scans. It doesn't appear at this point that it has spread anywhere else.

A few people have asked me if Brynlee had been sick or showing any signs leading up to this, and she had. Most of the signs started 2-3 weeks ago. She had several days where she was just fussy for no reason. She also has become extremely attached to me and always wants her mom. The biggest thing though was that she started sweating again. Brynlee sweats on the left side of her face and head and her left arm from the neuroblastoma. She hasn't sweat very much since it got cold this winter, and she has been sweating more and more lately even while sitting still and doing nothing. I had also had a lot of thoughts about relapse lately, and overall I think both Blair and I were not at peace with everything and unsettled with what we should be doing and different things. So it was not a huge shock to me when we found out that she had relapsed; however, it didn't make it any easier to hear that she had relapsed.

The last few days have not been fun. We are not looking forward to spending so much time back at the hospital. I am dreading beyond understanding having to shave her hair. Now that Brynlee is 2 years old and more aware of what is going on around her it really bothers me that she is going to wonder why we are doing this to her. She always wants her hair fixed into "pretties" every day. Soon we will not be able to do this. Please, please do not tell me it is just hair. I know it is just hair, and I know it will grow back. It's so much more than that, and most reading this would not understand. We have a lot of anxiety regarding how this will all go and how Brynlee will respond.

I don't want to get into her prognosis too much. Just know that at this point, she still has a very good prognosis. Of course, this will depend on if they are able to get a biopsy and what those results show, which we won't know the results for a few weeks.