We had a PET scan, second liver resection, and celebrated our son's first birthday in the hospital.
I did not mean to go so long between updates, but it has been a hectic couple of weeks.
First, we got the results of the PET Scan. There was no evidence that the cancer had spread outside of the abdomen. Big sigh of relief. I think we were terrified that since everything had gone so well with chemo that it meant we were due for something terrible. I know, totally irrational, but honestly there is nothing rational about this experience. I did not realize that I was so scared until we got the results and I felt the weight lift.
The surgeon ordered the PET because he was concerned that an area of fluid near his liver could be masking some remaining tumor cells on the MRI. He was right. The scan showed that there seemed to be some cells in the area. It allowed him to plan better for the surgery, making it less likely that a third surgery will be necessary.
We went in for surgery on the 12th. Thank God for xanax. We trust our surgeon, he saved our little boy's life, but you never know what will happen. We took turns comforting and calming each other during the surgery. They told us to expect a four to five hour surgery--but it went very fast--only three hours.
We were a little scared that they finished so quickly. Of course my thought was, "Oh god, did something go wrong? Is there more tumor than they thought? Could they not remove everything? Are the tumor cells too close to the blood supply?" You know, the power of positive thinking. Luckily, it was fast because it was very clear which cells on his liver were abnormal, and the surgeon deftly removed them.
Little Buddha went to the PICU post surgery for observation and pain management. Unfortunately he was there for two nights. He ended up with a post-op fever from the inflammation associated with the surgery. That was really hard, there was very little we could do to make things more comfortable for our little guy and we were terrified that it could be caused by an infection. When your child receives chemo the nurses and doctors constantly tell you that any fever above 100 degrees is dangerous. His fever spiked at 104.2 and we were freaking out while the doctors were acting like it was no big deal. Ugh. I think I will be writing a second post about the frustrations of PICU, let's just say that we were happy to transfer out to our normal floor.
We were in for six days in total, which meant our little guy had his first birthday in the hospital. Our doctors tried their best st get him home for his birthday, but we just were not comfortable taking him home until his fever stopped spiking. Still we managed to have a little celebration for our tiny guy. Little Buddha had his first cupcake! We brought in extra cupcakes for the staff and some of the other patients.
The aides and nurses made him a banner for the door and the playroom staff made him a poster. It really reminded me of how lucky we are to have such great people around our little guy all the time.
We have to meet with the surgeon for a follow-up and when he gives the all clear our oncologist will schedule our next round of chemo. After that only one more round (God willing) and then scans. If he is clear on the scans we get NED! In someways this is more terrifying than the beginning. The shock has worn off and the numbness cleared. There seems like there is so much more to lose.
That is the reality of cancer, it never ends. This is our new normal, recurrence will always be a possibility-- we just have to adjust mentally. I keep telling myself not to fight it, but let it in. I don't want to spend my entire life in fear. I don't worry about Little Buddha in this regard, it will always be his normal. He is much more resilient than his mama. I am so proud of him.