The bone scan looked okay. There doesn't appear to be any more spots on her bones. The CT scan confirmed the large bump in under her arm and there may be a spot in her abdomen about an inch in diameter. The doctor wasn't positive about the abdomen, so hopefully it isn't anything. To make sure that this is indeed the neuroblastoma cancer under her arm (the doctor seems pretty convinced that it is), we have decided to go ahead and get a biopsy done. That will be in the next few weeks. She is also going to have an ultrasound done of her belly to get more information about that possible tumor. It could be in her pancreas or another lymph node near the pancreas.
The hardest news is the possibility that it could be in two spots this time. I wish we knew for sure. We've been fighting one fire at a time up until now. We may or may not be able to get radiation done to the lymph node under her arm because it may not respond if it was already in the field from her last treatment. The only other real options are systemic drugs that are available on experimental protocols or possibly chemotherapy which we have always wanted to avoid. We will find out our options after the biospy. The doctor said she would sit down and weigh the pros and cons with us for each option keeping in mind that we want to keep Kelby as comfortable, normal, and close to home if possible. She still can't provide any guess at a timeline for us. Some families might choose to do nothing beside watchful waiting at this time. Whether it is in two spots or one will make a big difference in our decision.
Her blood counts on Monday were a little on the low end, but the doctor wasn't too concerned because they did this last fall with no explanation. However, I'm concerned because her ANC (infection fighing white blood cell count) went from 1612 down to 960 in two days. An ANC of 1000 is usually needed to even start chemotherapy, so it is well below the average childhood ANC. I don't know if that means anything, but I included her blood results below. I imagine they'll be watching that.
The day was long down at Children's today, but it wasn't as bad as some trips have been. This time Kelby didn't have to get anesthesia because she was older and brave. She really wanted to get the "dizzy medicine", but she did really great without it. She was so brave that she earned herself tassels for her bike handles!
Mike came with me, so that was much better. He and Kelby watched movies on his lap top while we waited. At 9:00 am they gave her the bone scan nuclear med so it has time to up take into her bones before the scan. Her CT Scan was done at 10:30 and bone scan at noon. Luckily we could eat in between. We were all hungry because they didn't want her to eat breakfast before the CT because the contrast they inject sometimes makes kids queasy. She didn't get sick at all.
After sitting and listening to Mike and I talk to the doctor, I asked Kelby if she had any questions or was worried about anything and she said "No" very matter-of-factly. Dr. Park described the biopsy to her and she was fine with that (especially the dizzy medicine!) She is such a strong kid. I don't know if she doesn't realize what is going on or if she just doesn't care. Dr. Park told us to only answer her questions rather than trying to make her understand everything. She said that kids think very concretely and live just for the day, so we shouldn't get too much ahead of her. That is the way we have dealt with this from the beginning, so I guess we are on the right track. We never lie to her, but wait until she is ready to hear it.
Tegan and Anika were very good girls at Gramma Debbie's house today. Debbie and George got us pizza for dinner when we got back to pick up those girls. That was nice and relaxing. I have a feeling that Tegan and Anika don't miss me quite as much as I miss them when I'm gone for the day.
I better go to bed now, so I can stay on top of things. We are doing pretty good. Don't worry about us too much. There is that "peace that passes all understanding" again...even when we cry...we need to cry sometimes. We don't know what the future holds. Keep praying. God bless. Only two more days of kindergarten!
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