1 Week Down

Again it feels good to be home from an all day trip at PCMC. We had Clinic at 11:00, where they weigh her, take her height, temperature etc then back to a room where several doctors talk to us about what side effects she has had, how she's responding to the treatments & any questions we have. After her surgery last week, they inserted the port while she was asleep & left it accessed for the entire time we were at the hospital. Yesterday, we had to access her port for the first time. This was something new and scary for her. We numb the area 1/2 hour before, wiped and cleaned the area, then the nurse put the needle into her port with the IV line hanging down to draw blood and insert more Chemo. The child life coach & I were doing our best to distract her by reading books, playing with toys that light up etc, but all I could hear was Mommy No, Mommy No. Don't let them do this to me. I know with time she'll get used to it, but for now I hate it as bad as she does. It sucks! They had a hard time getting blood drawn and I just prayed they wouldn't have to start all over. They taped the area until after her procedure, in case they needed to access it again before we left or if her counts were too low and see needed a blood transfusion.

Normally your WBC (White Blood Cells) is between 5.5 thru 15.5, when we left the hospital on Tuesday it was .8 and yesterday (Friday 29th) it was 1.2. So although still really low it has improved. Her ANC which is a measure of the infection fighting WBC normally is between 1500 thru 850, when we left the hospital on Tuesday it was 300 & yesterday it was up to 500 still low, but not low enough we had to get a blood transfusion.

We then headed downstairs to the RTU (Rapid Treatment Center) she wanted to know why they were putting her asleep again and what were they going to do to her. In simple 5 year old language, I tried to explain. Last week, she went to the operation room for her surgery where no parents are allowed once they take them for surgery. At the RTU, one parent is able to stay in the room until she goes to sleep so this helped. She fell asleep within 3 seconds. It only took about 20 minutes for the Lumbar puncture or spinal tab to remove a small amount of fluid surrounding the spinal cord for tests. It took longer for her to wake up. They came got me when she started to move. However, when I went back there she was still out big time. I warned the nurse she possibly could be real upset at her after our experience last time. She laughed and said after analgesic some wake up upset. Avery woke up tired and hungry, but pleasant as could be. The nurse asked her if she wanted something to eat and she immediately started munching on chips. We were done. Yeah! We left to get a bite for her to eat, but unfortunately everything started to hurt, including her mouth so she wouldn't eat her favorite, a Roast Beef Sandwich. One of the side effects are mouth sores and of course this was the only medicine we had left at home, not that she would of taken it willingly anyways. Again, today she is having bad mouth sores on her lips. Her bottom lip is swollen and she is crying about them. The so-called magic mouth wash, wasn't magic for us. Lets just hope the sores go away fast.

It breaks my heart, any shirt Avery wears she pulls it up at the top and says she doesn't want anyone to see it. (the scars were her port is) I asked her why it shows how brave she is, but she just hates that she has something there. It breaks my heart..... because when she starts to lose her hair it's going to be a lot bigger hurdle then people seeing little bandages under her shirt. We Love you Avery! You are being so brave!