It was a rough night but still some good news

Wednesday night we were sitting in our room about to enjoy dinner when the nurse came in and asked if we would be willing to be on TV for the KSL radiothon promo they were doing. I didn't really want to be on TV, especially after having slept away the afternoon in Brynlee's hospital and not sure how TV ready I looked, but decided that I would do it in the hopes of people seeing another childhood cancer story and spreading more awareness. We went down and had missed the 5:15 shot, but they wanted us to talk on the radio. So we went back around 5:30, but they decided that Brynlee was too cute for radio and wanted to put her on the 6:30 news live shot. So we had a very short interview on the 6:30 news about Brynlee's story and the treatment that she has received at PCMC. We had out 15 seconds of fame. I still haven't seen it as we don't have a DVR anymore, but people have told me I did a good job. Ugh! Who knows. I was so nervous! 

 

Valentine's Day in the hospital started out a good day and ended kind of a bad day. Brynlee ate a little bit of her breakfast, and she was given permission to get out of her room and go to the physical therapy gym. She loved riding in the wheelchair to the gym and she was able to muster a little bit of energy to participate, but she tired fairly quickly. We came back to her room and found that we had a box ready to decorate for the valentines that she would be receiving. So we decorated her box and made a couple of valentines for her sisters and then ordered her lunch. She ate a couple of bites of her lunch and had a visit from her Grandpa Leonard and Uncle Chad and Aunt Sheri. As soon as they left she fell asleep, and she slept ALL afternoon. She woke up for a few minutes around 3 and I changed her diaper, but then she snuggled with me and fell back asleep for 2 more hours. She received many valentines while she was asleep.  

 

 

 

 

After she woke up we tried to feed her some dinner, which she didn't eat, and she was fevering again. The topetecan chemo drug that she gets can cause fever; however, they have been drawing blood every day to see if anything grows out in the blood cultures, which nothing has grown out so far.

 

I left for the night, and things turned ugly. She has been receiving rocefen as a general antibiotic every day. They decided to go to the vancomycin as the next step in treating whatever was going on, but she had a bad allergic reaction to it and her face swelled up and was itchy. They also swabbed her nose for the flu, and they determined that she has a virus, likely parainfluenza.

 

So this was the little girl I found this morning when I arrived.

 

Blair and Brynlee had a rough night to say the least. She is still swollen, but hopefully it will improve over the next few days. She was still able to have her chemo today, but she started fevering again this afternoon, so we have to do more blood cultures, and we most likely will not be going home tomorrow after her last chemo.

 

We did get some excellent news this morning from Dr. Staddon. He came in to check on Brynlee, and I asked him when we would know the pathology results from her tumor biopsy. He went to check to see if they were in yet and came back in and told us some great news. Brynlee's relapsed neuroblastoma has actually changed to posttreatment ganglioneuroblastoma. Ganglioneuroblastoma is on the neuroblastoma spectrum, but it is a less aggressive form. When cancer grows it is usually the immature cells that divide and grow rapidly. These cells that they took from this biopsy are more mature cells and have been determined to be ganglioneuroblastoma cells. So she has still relapsed, but the bottom line is that the cells are just not as aggressive as the neuroblastoma cells, and so her prognosis is still really, really good. The interesting thing is that her tumor markers that we check in her urine every month are still within the normal range. They are higher than they were in August, but they are still considered to be in the normal range, so that test wouldn't have indicated anything to us anyway at this point. He also told us that her bone marrow aspirate came back negative and that there were no cancer cells in her bone marrow, which, again, is excellent news. We are glad that we seem to have caught this relapse fairly early it seems.