July 12, 2007 - We're Home!

It is hard to believe, but 48 hours ago, Keira went in for surgery. We are already home and have been for a whole day. Can I just say what a stud my daughter is! Nothing keeps this little girl down. And we can say that literally because she is walking all over the house and even carrying things with her. She is laughing and playing and eating well. We feel so blessed and so happy.

Thank you for all your prayers. Keira has done amazingly well, and I truly believe that it is because she has so many praying for her.

So, here is the story so far . . .

It began Monday night (7/9). We knew Keira would not get to eat the next day and would not go into surgery until around noon. So, we had to keep her occupied and not let her realize how hungry she was. To help this out, we tried to feed her extra Monday evening so she would have some reserve left the next day. However, despite offering her favorite foods AND waking her around midnight to feed her again, she only ate as much as she normally does. Tuesday morning we even tried to give her juice and gatorade just to get a few calories in her before she had to fast from even cleads liquids, but all Keira wanted was water.

We arrived at the hospital at 10:00. At 11:15 we were finally seen by a nurse practitioner who was doing her pre-operative evaluation. We expressed concerns that things were taking so long and Keira needed to get to surgery. It turns out that the place we were at had no idea that she was going for surgery that day at 12:00 (how does pre-surgery not know Keira is getting surgery?). So they hurried through her evaluation to try to get her to surgery on time. After a series of frustrating events we finally got to the surgical holding area around 12:15 (a closet sized room with a broken DVD player).

At 1:15 they came to tell us that Keira's surgery had been delayed (really? Wow, what a surprise!) for 2 hours. We thought, ok, no big deal. It's 1:15 so she'll go for surgery at 2. However, they explained to us that this was not a 2 hour delay from her original time, but a 2 hour delay from now. Yes, her surgery got moved back 3 hours. But no one told us this until an hour had passed, which meant we were in the 2 hour window before surgery and so we could not give her any clear liquids. Thankfully, Erin's parents and brother and some friends of ours helped us entertain our starving child for part of those 2 hours. Here is the amazing thing - she didn't complain once about not eating that whole time! She did great. She did not even go into surgery until 4:00 and still did not complain about being hungry.

When she did go into surgery, someone called us to come meet with the surgeon only 45 minutes later. It kind of freaked us out. They told us it would take at least an hour. To our relief nothing bad had happened. Now, the results are not everything we would have liked, but Keira was not hurt and they did not have to open her up. The surgeon explained that given the location of the tumor, all he could do without causing nerve damage was a biopsy. He was able to do it with a camera and 2 little holes in her chest.

We spent the night on the oncology floor, and it was pretty clear that Keira was hurting. She was very restless and couldn't sleep for more than 10 minutes at a time (it was a long night). They kept giving her pain medicine, but it really didn't seem to help much. About 4am she finally fell asleep. The next morning she was a completely different girl. When her doctor came to see her, she stood up in the crib and smiled at him to say hello. She did great all day yesterday and only took Tylenol for pain (I'm telling you she is a stud!). Amazingly, she was doing well enough that they let us come home late yesterday and today it is as if she never went through surgery.

So what does all this mean? Keira still has a mass in her chest. Over the next few days, the biopsy results will be back. It is possible that there will be active Neuroblastoma cells in the biopsy in which case she will need more chemo or we will go back to surgery accepting that nerve damage will occur. It is also possible that the biopsy will show scar tissue and mature benign cells. This might allow us to watch her closely and look for any signs of change in the mass. We won't know what the plan is until after the biopsy results are back. We will keep you posted as we know more.

Thank you

Jason, Erin and our amazingly strong and blessed little Keira Grace