William and Thomas arguing over who loves Sally more, and who can give her a better hug. She was enjoying every minute of it.

William inspecting Sally’s IV line. We posted this picture to Facebook, only to have one of Sally’s nurses, Mama Adrienne, reach out and tell us we were missing orange sanitary caps. We put them on promptly, gotta love Sally’s nurses!

Hi all – Things are finally starting to get back to “normal” at home. It was a long week for all of us as the stomach bug worked its way through our family, Thomas being the final victim. Only today are we all starting to eat normally again and having meals together. Sally went into MSK on Friday and had the IV Backpack removed, although we had concerns as she was still vomiting from time to time. By keeping a slow continuous feed through her feeding tube we’ve prevented any more puking since, with Sally’s tolerance for food slowly returning.

Nicole airing Sally out and giving her a much needed wipe down.

DAD I’M USING THE BATHROOM! GET OUT OF HERE!!!

Nicole and I are still getting over the rough week, it really took a lot out of us between the hospital stay, the hospital trips, taking care of ourselves and the kids being sick, averaging 1-2 hours sleep a night, a busy work time for me and us managing Sally throughout all of it. Knowing my sister won’t be here the next few weeks taking a much needed break, we decided to take advantage and go out on a quick dinner date last night. We went to a restaurant right around the corner and enjoyed a good meal and some one on one time, although it was accompanied by many yawns at the end. Still, it was great to get out and talk like a married couple instead of a nursing team.

Date Night

DATE NIGHT?! WHAT’S DATE NIGHT?!

This week is Hell Week 2 of our cycle where Sally gets three straight days of heavy duty chemo, including Daunorubicin, the one that is known to cause heart damage. If you remember the last time she got this was Christmas Week, amazing that its already been almost two months. We have to bring Sally in Wednesday, Thursday and Friday with Wed/Thurs being very long days and Friday being a half day.

My sister Sarah shared this graphic with me, people like to talk about “cure” rates with ped cancer. Problem is those are 5 year survivor rates. They don’t include the deaths and complications that occur from the outdated treatment themselves, like the daunorubicin that Sally is receiving this week. They’ve known since 1967 that it causes heart damage, but still use it as nothing better has been developed yet. As much as we know this is Sally’s best option, it does leave us frustrated that she has to endure this treatment with potential long term consequences.

Tonight we all sat down and watch a movie together while eating dinner picnic style, something we haven’t done in a long time. After this week, we figured we needed a little quiet family time together before being thrust into another very busy week.

Please keep Sally in your thoughts and prayers.

Matt