There has been so much going on, and things are happening so quickly my head is spinning. I have to keep looking at my watch to see what day it is, and I can barely keep a thought in my head. I don't have much of an appetite, and when I do eat it feels like the food is sitting in my stomach like lead. I hate this constant feeling of fear, dread, and uncertainty.
Monday morning Collin had two therapy appointments. Then around lunchtime I got the call from MSKCC that we had been approved for a consult, and they gave us an appointment on Thursday morning. Next I had to make a bunch of phone calls to reschedule our appointments for the rest of the week, and make arrangements for Neya and Bailey (our dog) to be taken care of while we are gone. With the help of the wonderful people at his office, Bill got lodging arrangements taken care of, and spoke to our health insurance rep.Then it was time to pick Neya up from school, take her to dance, get her to her friend's house for trick-or-treating after dance, and take Collin out trick-or-treating. Needless to say we ate dinner on the run, and we all got to bed way too late.
I had to have Collin at the hospital at 8:00 Tuesday morning for his spinal tap. We started in the pediatric oncology clinic where he was weighed and measured. Since he was going to be put to sleep for the spinal tap, but his mediport was just removed a few weeks ago, he needed to have an IV put in for anesthesia. This can be difficult because his veins are so little, and since he couldn't have anything to eat or drink since the night before, it was even more challenging to find a good vein. One of the nurses spent some time looking for a few good veins, and put emla numbing cream on three possible sites. Then we had to wait for an hour for the emla cream to work. So, we headed to the activity room where we hung out with three THON students who were visiting for the day, and Collin worked on a craft for a little while. Then the doctor who would be doing the spinal tap was ready to examine Collin. This doctor is very laid back and down to earth; he is very entertaining (makes hospital gloves into balloons, etc.) and does his best to let kids be kids. He has tried many times over the last year and a half to make friends with Collin, but Collin hasn't warmed up to him very easily. Well, Tuesday he came into the activity room, put his hand out, and said "Come on Collin, let's go play in the snow." Collin just got up, took the doctor's hand, and off they went! They actually went outside for a few minutes and played in the snow. A few minutes later they came back in, and as Collin came around the corner, he waved and said "Hi Mom!" Then I followed him and the doctor into the exam room. The doctor checked Collin over, and had me sign the consent for the spinal tap. Then we went back to the nurse, and she was able to get the IV in the first site she tried, without Collin even making a peep. Then she put emla cream on his spine, and we went back to the waiting area until they were ready to do the procedure.
Around 11:00 or so, we headed to the South OR where the procedure was to be done. I held Collin on my lap as they hooked up the IV and started the anesthesia. A fellow came in and did the procedure under the oncologist's supervision. I stayed in the room with Collin, and in just a few minutes it was over and there were two small vials of clear fluid that would be tested for cancer cells. Then Collin was taken to a recovery area. It took him a while to wake up, but when he did he was happy and ready to eat. After he ate some crackers, drank some water, and the IV was removed, we were able to go home.
We are now in our (very small!) hotel room in New York City. Collin's appointment at MSKCC is 11:00 tomorrow morning. I spoke to our oncologist earlier, but the final pathology report on the CSF has not been posted yet. She will check again later tonight and again tomorrow, and will let me know when she knows the results.
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