After dropping Ema and Jakob off at a friends house I moved Chan into the middle and asked him what was bothering him. He said he was just tired, but I was worried he was getting sick, or that it was anxiety or a combination. I asked him if he had owies, and he said no. I asked him if he was worried about going to the hospital and he said he didn't want to go. I told him it was going to be ok and that I would hold his hand and he would be just fine.
It was heartbreaking for me to see my baby have such anxiety. It makes sense because now that Chan is in Maintenance we go only monthly and its been so long since his last back pokes. He has been so strong through all of this and I think having to go get back pokes after so long was a reminder that my baby is still very sick and still fighting to keep this terrible disease away. It was a long quite contemplative drive together to the hospital.
I have never watched them give Chan back pokes. I tried to stay the first time when they were doing the biopsy but there were so many people in the room and so many monitors beeping randomly that it was just too much for me. I also wanted to stay when I was 36 weeks pregnant to watch but the oncologist wouldn't let me because she was afraid it would put me into labor :)
Chan is given propofol and fentanyl right before the procedure. The propofol is a short-acting general anesthetic. The fentanyl is pain reliever and I just read (I am floored!) that it is 100 times more potent then morphine! I had no idea. No wonder he never is in any pain afterwards!! It is calculated based on his weight and given through his port tubes. This time around right when Chan was given the propofol he sat up and tried to crawl off the table. Chan was completely out of it and it took all three people in the room to get him to lay back down, and the second he was down he was knocked out.
I left during the procedure with my infant in tow and headed to the little cafe outside the sedation clinic to get something to eat. The procedure itself lasts about 5 minutes. I came back shortly and Chan was asleep. He typically sleeps for at least an hour before we can even get him to respond to our attempts to wake him. It's actually a little entertaining for me to lift his hand and have it plop on the table without so much of a flinch from Chan :) Its also a time that nurse Judy and I talk. I am pretty sure she knows just about everything there is to know about our family, and she is so sweet and remembers a lot. Nurse Judy was the nurse that was in the room for diagnosis as well so she has been with us on this journey from the start.
When Chan woke up one of the first things he said was "Mom, did you hold my hand?". He remembered I told him that I would hold his hand, and I felt terrible that I forgot! I said I am holding your hand now, and he was fine with that. He then wanted his favorite pizza, gatorade, and yogurt. It was too late to order the food (I felt sooo bad I had forgotten), but nurse Judy (shes amazing!) was able to find some yogurt for Chan to have and he ate two entire bowls full of yogurt! Then I told him we would buy him his favorite pizza for dinner. I am pretty sure I would have done/given him anything he asked for at this point.
This last week Chan has been nauseous on and off and we have had to give his anti-nausea medicine fairly often. He has also been a lot more tired, and gets more easily upset. I think that those side-effects are wearing off now. It really is so hard to see him have to go through all of this, especially since its been so long and feels like a life-time ago that we had all of the hospital stays. Its a harsh reminder that cancer is still apart of our lives and will be forever.
Chan's next appointment is 2 days before Christmas. He will be getting chemo through his port and he will be starting steroids. It will be an interesting Christmas break for us making lots of burritos and dealing with 'roid rage'. At least Kindt will be home, and I will not be dealing with it during the day alone.
I am thankful that for Thanksgiving I had all of my children together laughing, screaming, eating, fighting and playing, and I wouldn't have it any other way!
I hope that everyone had an enjoyable Thanksgiving and were able to reflect on all of the many blessings given by our loving Heavenly Father!
