Dancing Cows, Fruit and Dinosaurs!

So, today was a busy one to say the least. We slept in 'til about 7:30am and then I got up and got things going. Aiden and Sophie both had doctors appointments. Sophie, at the cancer center and Aiden at the pediatrician to check on his bump.

We arrived at the cancer center and drove through quite a bit of construction on the way there. I am glad we know the medical center so well... for parking's sake at least. They told me to park in a specific garage so I could have easy exit in case she ever felt woozy after anesthesia or chemo. Thankfully today she wouldn't need either. As we walked in the new way, we were greeted this time by two giant cows. So cute! They were dancing like Disney Fantasia Hippos as we walked toward the elevators we needed to be in. It made Sophie smile. Good comic relief at that moment.

As we rode up the elevator, Sophie kept laughing and making funny faces in the elevator. I am so glad that none of this really seems to phase her yet.

After making funny faces for a few minutes, at about 10:30 and got a snack. Sophie sure seemed in good spirits. She is such a trooper, and to her, this is all just another doctors appointment. She has been to so many doctors lately, I just don't think it gets to hear anymore. It took some convincing for her to get fruit and a diet coke, though I knew that eating a full breakfast and then having tests run may not be a good combination.

Though she was in good spirits, I started to tremble as we got up to the waiting area. We checked in and noticed again many kids that were much much sicker than my Sophie. She has something going on in her body, but it's not even close to what some of these kids are going through. At about 11:30am, they announced that there were pizza and toys and cake back in the Fusion area for the children that were there. I thought, okay, I will let her dad take her back and they can get some pizza and I will lag behind so when they call, I can check her in. Just about the time they walked off, they called, and I registered her at the desk. They then gave us a pager and said I could follow them as long as I kept the pager with me. So, I walked with my mom back to the Fusion area, not prepared for what we were about to see.

The facility, amazing in its own right, was still terrifying to me. I never thought I would be the mom that would be taking my daughter to receive treatment for an illness like this. I took a deep breath and felt thankful, but had great empathy for what these little guys and gals were going through. Though mine is not among the sickest of kids (and I pray that she never will be), it was still terrible to see the ones who are suffering. There was a boy with a wide smile, big brown eyes, no hair and a scar from ear to ear across the back of his head. He wanted a piece of cake really bad and dug right into the piece he was handed. He had the biggest brown eyes... Then there was a little girl, probably three or four,with sandy blond hair and with a nurse and her dad by her side. She was screaming, saying, "It hurts, it really hurts!" until they were able to calm her down. It brought tears to my eyes.

Though I realize that chemo may come eventually, for now, our visit was relatively straight forward. 154 days into treatment, the "fellow" came in and examined Sophie and asked how she had been doing. We talked about her history and then the main specialist came in. He is a world renowned expert in this disease, and it was great to have him look at all of us and explain that, though they needed more tests in 30 days, that blood work was all that was needed today. They said that they would probably want to repeat the CT, MRI and the PET Scan because she's having the symptoms she's been having (fever, headaches and fatigue). They also all agreed that a sleep study was a good idea due to the extreme fatigue she'd been experiencing. The doctor also explained to us that the first 12 months post-op are critical for the children with a single bone lesion (hers was removed on 1/28/2011). He said that the recurrence rate is 20-25% so we need to monitor her carefully this year. He said that they don't prescribe chemo frivolously and feel it's something to be entered into cautiously. I totally agree. I'm frustrated because she still feels lousy, but also know that today was a relatively good day.

I am also praying for Sophie's dad tonight. I don't think he realized the gravity of the situation until today and I also think he's having a hard time coming to grips with the fact that her team all just wants the very best for her, which means a united front on our parts. We have been divorced for six years and I don't have any bitterness about what happened anymore, it's an entirely moot point in the shadow of what's going on with Sophie.

Tonight, I am so thankful that after going through the day, Sophie's still smiling and is now snuggled up watching the Land Before Time (the 90's cartoon with the dinosaurs) on Netflix. She's laughing and saying, "Yep, yep, yep!" hehehe...

Aiden's visit was less eventful. The pediatrician thinks his cyst was attributable to cradle cap, but I don't know if I agree 100%. She said to watch him carefully for color change or a change in the firmness of the bump. She did say she understood my concern and why I would want him to be seen given what we've gone through with Sophie. I am glad she was able to take a look at him. I wonder what will come of the bump. He doesn't seem slowed down by it, though he was asleep by 6:30pm, which is kind of odd. He usually doesn't go to sleep until 7 or 7:30, but he didn't have much of a nap today, so we'll see if he's up all night or not....lol...

For now I am counting my lucky stars that they are both all right. God is good, even though we really don't know anything new, other than, right now... no chemo! Yay!

Goodnight friends!
J