Stop watching football, pay attention to ME!

Hi all – Sally began Hell Week 2 of her cycle today. She will receive three straight days of heavy chemo, although can come home each night. Sally has had these types of chemo before, but never grouped together at once like this. Independently she suffered side effects from these, including fevers, so Nicole and I have no idea what to expect.

Heading into MSK to start treatment.

Snuggling with Daddy while waiting for the nurse to arrive.

All smiles when we put her in the car.

One of them, which she received today and will again tomorrow, is called Daunorubicin. It’s red, so Nicole and I have always called it “the red stuff”. We’ve learned a more common nickname for it is “Red Devil” as it has a lot of side effects. We’re told it can cause long term problems for Sally’s heart, which is why after using it for a year, they’ll begin rotating it in and out of Sally’s treatment. As Dr. Steinherz told us, long term concerns aren’t something we should worry about now, “long term” problems would be a luxury to have at this point and should cross that bridge one day if we come to it. Kind of a messed up way of thinking about it, huh?

Sally napping while receiving the red stuff.

We also have to wear gloves while changing Sally until it runs its course as it makes her urine toxic. They are keeping an eye on the line in her back, if there is any leakage, they have to stop immediately as the Daunorubicin can burn and kill her skin/tissue. Some have referred to childhood cancer treatment as “barbaric” and outdated. This is one of the forms of treatment they’re referring to. This has been used for over 30 years, and in some cases does as much harm as good. In 30 years, they haven’t been able to create a better alternative. Why? 4% of federal funding for cancer research goes to pediatrics. FOUR PERCENT.

Over the last week where we didn’t have chemo to worry about, Nicole and I have discussed this. Nicole was actually filmed for a documentary that’s coming out that will hopefully get presented to the White House and Congress. It’s the 2nd in a series, we ask that you view the first video by clicking here. Sadly, many of the children featured in this are no longer with us, including Gabriella who passed away just this week. Now that we’re past the initial shock of Sally’s diagnosis, Nicole and I have a growing passion about spreading awareness about what’s going on. It’s great that breast cancer awareness is so huge now, look at the NFL wearing pink. Now we need to do the same thing for the kids out there dying every day. Throughout our journey, we’ll be sure to tell you how you can help.

Prior to today, we had a great weekend. As I mentioned in the last update, Nicole and I headed out to an adult cocktail party. It was a fantastic escape for us, we had lots of cocktails, talked about everything but cancer, laughed are butts off with great company and were out til after 2am. We haven’t done that in years, and felt great to be “normal” again for a night. On Sunday, my brother Jeff was in from London so got to spend time with him, including a trip to a new local beer garden. It’s the one place we can safely bring Sally to eat as they have a huge outdoor seating space with heaters.

Eating outdoors!

Snuggling Uncle Jeff

Sitting with Daddy while he has a beer.

It was all a nice break before the storm. Sally is back at MSK tomorrow for more. It’s Halloween so everybody on the floor gets dressed up and is a lot of fun, we’ll be sure to take photos. We also learned our friend Iliana, who is running the NYC Marathon this Sunday, is wearing this for the entire 26.2 miles:

Such an amazing gesture.

We have been so focused on cancer awareness as a whole the last week, it all came crashing back down for me upon seeing this. I was at work and just started crying at my desk as it was such a beautiful gesture. I thought back to May when I ran my first marathon, and our life was shaken just a few weeks later when Sally was first diagnosed. It feels like eons ago, going on our trip to Buffalo for it was the last normal thing we did as a family and again was reminded of the long difficult road that lies ahead for our daughter.

Our apartment is located near the start of the race, coincidentally about the same spot Sally is in her own marathon of treatment.  One mile at a time Sweet Sally Sunshine, one mile at a time. Please keep Sally in your thoughts and prayers.

Matt