Port Surgery and Chemo?

Thank you for following Noah's journey here.  I moved sites for various reasons, and I am glad you found us here.

Because the tumor is so rapidly growing, and it has not yet affected his brain, we are in a race against time to get the chemo started.  The plan was to have his port put in during surgery Friday morning, and then start chemo the same evening.  The day started very difficult.  When he woke up, he discovered that he was not allowed to eat, which immediately set off the bells that he was having another surgery.  He is still so scared to be sedated and feels so out of control, and since food is one of the only things he can decide and control, withholding it from him is an absolute injustice.  He was an add on to the surgery schedule, and so we couldn't even tell him when he could eat again.  He was screaming, agitated, and super annoyed at the prospect of an entire day without food.  Anytime somone mentioned the word surgery or port, he went ballistic.  They did reduce the steroids, so we are hoping the rage will come down soon.

We got news that they would do the surgery around 2pm.  I met with the surgeon and we went over all the risks.  He kept telling me how low the percentage was that we'd have any complications, and I just rolled my eyes since percentages have really not worked in our favor.  He went for surgery, and when he woke up we were told one of his lungs' collapsed during the procedure and that we would have to postpone chemo.  (Serious hiccup of the day, and clearly odds not in our favor).  We would have a chest xray first thing Saturday morning to see if he could start.  

On a positive note, we were moved out of ICU and onto the oncology floor.  While it may not sound so amazing, we at least have our own room for now, and he is not being woken up and disturbed by a nurse every hour.  It is quiet and he can rest more.  In addition, we have been able to ween him off of many of the drugs, and he is returning to himself a little more.  In fact, he doesn't even remember telling the nurse to "shut her pinhole."  Which, if any of you know Noah, is totally out of character.  

He woke up Saturday morning happy to order his breakfast his mood was much more stable.  The technician came in to give him an xray but was unsuccessful becuase of the amount of pain.  He decided he'd rather try to stand up and go down to the lab in a wheelchair to get it done.   I was celebrating.  Unfortunately, the X-ray showed his lung is still not ready to endure the chemo so we will have to wait another day.  

We also had a heart to heart talk today.  He finally asked if he had cancer, and I told him yes.  We had used the words tumor, mass, chemo, but not cancer.  I told him that he had a certain kind that was very treatable, and went over the treatment course.  We spoke about him losing his hair, which is just devastating to him, and we talked about different options he had.  I am hoping to be able to get him a wig that matches his hair before he loses it.  He is very scared, and we are just heartbroken.

He did receive some very close friends this afternoon which I know made his day.  They were able to play xbox in his room which I know he loved, and we are grateful for.

We are crossing our fingers and toes that he can get the chemo tomorrow.