What a Ride..

1 Year, or 365 days, or 8765 hours, or 525949 minutes.

However you choose to quantify it, that doesn't make it any less of a roller coaster. It has been 1 year since Alyssa was diagnosed, and my wife and I spent time reflecting on what we, as a family, have been through. It's not all bad, of course, when I'm feeling a bit mopey I just have to look over at the little princess next to me and she never ceases to make me smile and forget whatever was bothering me at the time.

I have to be honest, had you asked me where I thought we'd be a year ago, I'm not sure how optimistic my answer would have been. But thanks to the support and care of family and, in no small part, the wonderful (and simply amazing) doctors and staff at Arnold Palmer Hospital for Children we will finally get to enjoy the Christmas we so longed for with our daughter. Instead of the beeping of respirators, we'll now hear the jingle of bells. Instead of crying on shoulders, we'll be singing some carols. I've never wanted a Christmas so badly before in my life.

But, enough of that..

I happy to report that, since being declared in remission, Alyssa has been doing quite well. All of her scans and tests up to this point have been spot on, with no cause for concern. All of her levels are within "normal" ranges, and her spirits couldn't be any higher. She quickly went from crawling to walking and is now running at a full gape. She went from having no teeth to almost a full set in what seems like overnight. She's really become increasingly independent, so much so that she'll sometimes refuse to eat unless you let her feed herself.

We now have a little person running around our house! Where did my baby go?!

We'll of course continue with her scans, in fact we have our "final" MRI of the year on the 21st. From there we'll be moved to a 6-month schedule rather than every 3. It's scary, but it's a milestone.. we'll just have to overcome our "scanxiety" and focus our efforts on being alert, and most of all, just being there for her.

No one knows what the future has in store for our little monkey, we have no control over that. However, one thing I can control is the present -- and I can assure you, she will have the best "now" we can give her.

Alyssa: 1, Cancer: 0

"No recurrent, residual or progressing neuroblastoma demonstrated in the abdomen."

This is the summary of the latest MRI.

I can't express with words how happy we are right now. To receive this news 2 days before Alyssa's 1st birthday.. a day which, when we began this whole journey, we weren't sure we would ever see, is finally here.

Our sweet daughter, my hero, officially kicked cancer's ass.

MRI Day!

Going off for an MRI within the hour. Hoping to measure liver size and check for lesions (hopefully lack thereof!).

Someone is a bit excited about it..

One Step Closer to Superpowers!

Ultrasound (and Clinic) day!

Today is the first time since Aly's Broviac removal that they will be drawing blood. I'm not sure how she's going to take the needle, but I can imagine.cThe ultrasound will hopefully provide the results everyone is expecting: a reduction in liver mass and no other "masses".

All in all, Aly has been doing great! She's meeting milestones and in an overall happy mood. She doesn't appear to be in any pain, and is always giggling. Oh, AND SHE'S GROWN LOTS OF HAIR BACK! :)

Happy 0.5th Birthday!

In honor of Princess Alyssa's 0.5th birthday, I present.. photos!



I know, I know. I really need to keep adding previous entries.. but this was too cute not to post. :)

Merry Christmas?

So this isn't exactly how I envisioned spending Alyssa's first Christmas. She should be covered in wrapping paper, not tubes. It doesn't really seem like there's much to be "merry" about -- that may just be the self-pity talking, but it's how we feel right now.

In any event, the family has come to visit and spend time with us in the hospital, as we couldn't possibly bear to leave our little girl's side. Honestly, they're a welcome distraction -- well, as distracted as you can be from all the beeps, buzzes and other sounds we're so keenly attuned to now.

We've planned a "second" Christmas, to be celebrated at a later date once we're out of the hospital. Alyssa's presents are all wrapped and ready for her little hands to work over. The hospital has left a (very) large bag labeled "To: Alyssa, From: Santa" containing what appears to be a bunch of toys. This is quite possibly the most simultaneously heart-warming and heart-breaking event of the past week -- I don't know whether to cry tears of happiness or sadness.

I'd trade it all to just hold her in my arms and have her coo at me lovingly.

Please, Santa?