Hi all – As expected it was a long week, hence why we refer to this period in Sally’s cycle as Hell Week 2. On Wednesday we brought her in for the first of three days of chemo, the first two of which are the daunorubicin. Dauno is part of the anthracycline family of chemos, which also includes the well known Doxorubicin. They’re known as Red Devil as other for the obvious red coloring of them, are known to cause heart damage and eventually heart failure in many cases. This is particularly concerning for us since my side of the family has a history of heart issues, including Marfan’s Syndrome. Since 1967 they’ve known Dauno damages hearts, but no better alternative has been developed yet. This and many of the other treatments are why funding for pediatric cancer research is needed so badly. We’ll have a post in the near future with organizations we like that people can donate to.

Daunorubicin

Wednesday started off late. Nicole snapped this great photo of Sally, we weren’t sure if she was angry about the delay, the outdated treatment that she was receiving, or that a snowstorm was expected the next day.

Yes, snowstorm. Nicole and Sally got home late from the hospital due to the late start. I drove the car around our neighborhood looking for a spot that I knew I could get out of with the snow expected. I had a lot of anxiety about this as the snow was going to add to existing ice and snow and was nervous about not being able to get the car out in the morning. I parked in three different spots before settling on one, I mentioned my anxiety online that night and a ton of folks from the neighborhood offered to help dig me out if needed. Have I mentioned how much we love our small town within Brooklyn?

The next morning William’s school was closed but Thomas’ was open (a big controversy here in NYC, but did make life easier for us) so we had to bring Sir William with us. I was able to get the car out as the snow started later than expected, but it hit hard just as I was heading to pick everybody up.

Our neighborhood.

We had to drive very slowly to the highway, people were walking on the street and we had a tractor trailer dangerously do two u-turns and run a red light in front of us, clearly lost. We finally made it to the highway and although was slow, made in into Manhattan and up to MSK in good time as there wasn’t much traffic.

On a normal day you can see the skyline of lower Manhattan below those green signs just before going through the Battery Tunnel.

First thing we noticed was how dark it was in the clinic, which we realized why when we looked up at the skylight above.

The MSK staff HAS to come into work no matter what. We know from some of the nurses that during Hurricane Sandy last year they needed rides from NYPD to get in. That’s the thing with Sally’s and other kids’ treatment, most can’t delay it, they HAVE to get in for it.

I ended up working from the hospital as Nicole had to focus on Sally so I hung out in the playroom with William, who was kept very busy by the Child Life staff with all kinds of Valentine’s Day crafts. The snow changed over to rain in the afternoon so after Sally’s chemo were able to get home pretty easily as again there was no traffic.

Friday we hit a ton of traffic getting in, I guess everybody who didn’t drive during the storm had to drive into the city, plus it was icy out. Sally had on her red dress for Valentine’s Day. She had a great day, enjoying clowns, music therapy and a photo shoot at the hospital.

Thomas made us a Valentine’s Day card and all on his own thought to include a gold ribbon for pediatric cancer awareness on the cover “so Sally would feel included.” William today was helping move Sally’s feeding bag as she scooched around the floor. These are more reminders as to what great big brothers they are for their sister.

Friday morning as we were driving in, Nicole and I both said how the week had been like a marathon, we were both exhausted and felt like we were limping across the finish line. This week is always a rough one for us, luckily we have almost two months til the next one, although Hell Week 1 (Steroid Week) is fast approaching as we close out Cycle 5. This week is a break week, although we have to head in for PT/OT and CBCs. Sally was very mushy and clingy yesterday from the chemo and her temperature got up to 99.5 at one point, but luckily didn’t break 100 as it was snowing. Again. Today she’s improved, but has been pooping a lot so not sure if its from the chemo or if she has some sort of bug. As always, we need to keep an eye on her. William also is showing signs of a cold, so now have to keep an eye on him as well and make sure we keep him isolated from Sally,

Next Monday we begin Cycle 6. Rinse and repeat…rinse and repeat…rinse and repeat. I had Sally on my lap today and realized we were in the same position as a photo I took just before she was diagnosed 7 months ago yesterday. I took a photo so I could compare them, she really does look as beautiful as ever even without the hair.

Please keep Sally in your thoughts and prayers.

Matt