New magnet on our fridge as a daily reminder.

Having fun with Daddy’s phone.

HUGE smile for Aunt Cindy as she walk into the room.

Loving bath time.

Hi all – Nicole is putting Sally down and then she and I are going to go on a date (or grab a quick beer if you want to take the sexiness out of it) as my sister is here and the kids are all asleep. Nicole went out Thursday night with some friends and although didn’t drink much, was out very late. She had a great time with her friends and a nice break from nurse duties. Although as I went out for a run at 5:30am she was up with Sally, and saw a text from her at 1:15am saying she’d be home in 30 minutes. I received a call from her at 2pm saying she and Sally were still in their pajamas and were just resting all day. Speaking about it tonight, Nicole says yesterday was a recuperation day not only from the night before, but for the last few weeks. She felt very refreshed today, especially after getting to work on patients. Massage is Nicole’s outlet, as running/biking is mine.

Today was a regular Saturday, I took the boys to soccer while my sister Cindy watched Sally. When I got back, I took Sally for a walk and along the way, stopped by many of the stores that have posted the flyer for Sally’s fundraiser next week in their windows and thanked them…or rather shouting my thanks for posting it from the door. Sally was so happy to be outside, pumping her feet and making high pitched squeaks.

This evening, we gave her a bath, her first in several weeks. It’s actually the first time I have seen her in our bathtub since the night before we took her to the ER when this all started back in June. It was awesome to see, and Nicole couldn’t stop remarking, “this feels so normal, thank god.” Sally was happiest of all, having a ball playing in the water.

We had to put her central line in a bag and then saran wrap it to her back so no water could get near the site. When it started to loosen that was our cue to take her out. For the first time, we put on a pad we ordered online around her g-tube (feeding tube) that should soak up any normal leakage and prevent it from rubbing on her skin.

I’ve included some pictures below of her central line and g-tube, you can scroll down if you want to view. They’re not graphic at all, but we’re also used to seeing these (well, as much as we can be) but know not everybody is or might be comfortable seeing them. Nicole and I have started this blog for 2 basic reasons:

1) To keep people informed (the obvious one).

2) To act as a journal, hopefully one day Sally can look back on this and see a part of our life that she won’t remember. Many have commented on how we’re honest about our feelings and how unusual it is. Well, we want Sally to understand the hell she put us through! Ha, no, for me personally in addition to being therapeutic I want to capture how I truly felt without a filter. I’d never write this if it was just me reading it, so this forces me to get these feelings out and always feel better after. Some people vent by talking, I type. We also go back and reference old posts when she’s taking a form of chemo or treatment she hasn’t had in awhile and want to see what the side effects were, or if we need to reference a date.

3) Finally, this blog is to help spread awareness. When thinking about pediatric cancer, most people assume it’s those smiling kids on TV missing their hair and that it’s all a cakewalk. That is so far from the truth. The treatment is painful as evidenced by what we’ve seen with Sally and the other kids on the floor. It has a major impact on families, even those that handle it well. And sadly, 1 in 4 kids don’t survive it. Sometimes you hear a 90% survival rate, unfortunately that only applies to a segment of Leukemia patients that fit a very specific criteria. The odds are not as rosy for those who don’t fit that criteria (like Sally) or have another form of cancer. People choose to ignore this as they don’t want to hear about children in pain or dying. This somewhat open book into our experience shares the real story in hopes that real awareness is spread.

Alright Sally is sleeping, Nicole is changing, I gotta go throw on a nice (somewhat) shirt and get out for a rare date with my beautiful wife. Not even going to re-read and proof-read this so apologize for any typos.

Please keep Sally in your thoughts and prayers.

The central line is what Sally receives IVs through, including for her chemo and taking blood samples. We had to wrap it up with a bag and saran wrap so no water could get near it.

No water getting near it!

This is Sally’s g-tube, the owl pad surrounds it.

Matt