The steroid monster has returned!! It sure didn’t take long for our loving little girl to grow horns and her halo to burn up! We’re only about 3 days in and the whining is wearing on me. Thankfully, Keith, Austin, Grammie and Papa help with her and that makes it easier for me. At least her appetite is back!

We did get a luxurious night at Hotel Emanuel last night. Around bedtime Kennedy began to complain of pain in the area below her ribs on the right side. Since this is where her liver is, I became pretty concerned. I asked her more questions and found that her back was hurting in the same place too. She replied that it was not quite a crying face but it was a sad face. Because of her bout in December and the fact that she is back to intensive chemo as of Tuesday, I called the doctor and she felt it was important to check her counts. Knowing an ER visit would only cause more trauma, we did a direct admit to the 3rd floor. Kennedy immediately started crying; not because she had to get her port accessed, but because she was terrified she would have to go to the PICU. Despite reassuring her, she would not believe us until we were in her room on the school age unit and she saw her favorite nurse, Megan. We knew we had Megan because there was a bear on her bed with a diaper on it’s head. Now, for those of you who don’t know…Kennedy calls Megan “Princess Potty Pants” because Kenn was able to get her to wear a pull-up on her head like a crown. The name just stuck. This was very reassuring to Kennedy last night. Anyway, Kennedy has been suffering from post traumatic stress after her stay in the PICU and in her mind she just knew that was where she was going. In the last week or so she has begun to articulate what the experience was like for her and no wonder she was so scared! That is another journal entry in and of itself. Ok, they checked her counts and because her ammonia levels went from a normal 37 (finally!) on Tuesday to 150 on Thursday, we stayed the night for observation. Dr. McGann, the new oncologist, also ordered an ultrasound for this morning. Everything looked good on that meaning there were no pockets of fluid building up although her gall bladder looked irritated. The believe that her liver is probably irritated by the new chemo and steroids but not functioning at a point they would call “toxic.” Very reassuring I know! Thankfully this time they are watching it very closely so it doesn’t become irritated and shut down completely again. So, the ultrasound looked good and her ammonia level was 115 this morning and we were able to go home. They told us that at noon but you all know how check-out works around there…we left after 6pm. Kennedy was still scheduled to get chemo today and there was some confusion via the resident about one of her meds so things got held up in the pharmacy. All I can say is thank God for childlife and how do we get one for our own??? Melissa was able to distract Kennedy and play with her and found a doll Kennedy could give lots of pokes giving her a lot of power before her PEG injections today. She was able to communicate a lot of her anxiety about getting “pokes” during their play today.

Sorry it is so short but I am totally exhausted! I promise to find time this weekend to write and know that Kennedy appears to be doing well tonight. We are taking a proactive rather than reactive attitude regarding her liver this round and while it may mean more hospital stays, hopefully there will be less, “if we had only been here a few days ago” regret this time.

Love-Hope-Faith,
Mel