The warm weather allowed us to get out for a walk as a family and pick up a new hat made by a local knitting group, MizaBella BrooklynHandmade.

Brightening everybody’s day.

All that brightening tuckered somebody out.

Hi all – First off, there’s a young boy named Aidan, who has never met Sally but follows her story with his family, that is shaving his head to raise money for pediatric cancer research in honor of Sally. He’s very close to his goal of $1,000. If anybody would like to donate to help him get there and exceed it, you can click here.

Sally had a quieter week as they typically give her a bit of a break at the end of her cycle after she gets the daunorubicin. On Monday Sally and I headed into MSK for her OT/PT, this is the closest we’ll get to a father/daughter date until her treatment is complete at the end of 2015. We unfortunately only made one appointment as our car was stuck in ice. Luckily, some folks who knew Sally were walking passed and helped us chisel out.

Neighbors stopped to get us out, thank you Sosas!

One thing many don’t realize is the effects chemo has on the development of children. For instance, Sally is not expected to grow as fast as other children while receiving treatment. She will also have ups and downs which will hamper her learning and motor development. To counter this, she receives PT/OT to help her move along, extremely important for her age. If Sally is at war with cancer, her therapy is equally as large a battle as the chemo.

One of Sally’s awesome therapists helping her cruise along the wall in the sensory room.

We feel Sally is weeks away from a breakthrough. She’s been cruising along the couch and even did a full 360 around her play table yesterday. She can push herself backwards in a crawling position and is starting to pull herself up. She’s also learning to communicate, she can now tell us when she wants to nurse by opening/closing her hand, and even signed when she felt full this week.

She’s also starting to express her displeasure. She’ll scream at you when she’s mad or wants your attention. When she’s really angry, she’ll throw a tantrum with kicking legs and everything. Nicole and I welcome this, as it means she is developing and learning how to communicate. Nicole even went as far as to nickname her Sassy Sally Tantrum to describe this behavior.

The biggest development of the week is that Sally swallowed food for the first time in three months! She’s been putting food on her mouth but usually sucks and chews on then spits out. The other day she put Cheerios in her mouth (right out of a small box the hospital provided) and swallowed them. We’ve been really focusing on having her sit with us while we eat, and putting her feeding bag at a high rate so she associates a filling belly with eating. We’re continuing to work at it.

Eating together.

We also recognize that we’re at the beginning of a new cycle, Cycle 6, and with that brings potential nausea and exhaustion for her. On Thursday she will head back to MSK for her spinal tap both to insert chemo into her spine and take a sample which will tell us if the treatment is still working. The results take 2-3 weeks, so again, Nicole and I will be holding our breath.

With a cold, I had to wear a mask whenever I was near Sally the last couple days. She also received her first princess toy set, which she loves. We love it as its easy to sanitize.

Also on Thursday she’ll begin her oral chemo treatment at home again. Two cycles ago she landed in the hospital during Thanksgiving after this stage. Last cycle her numbers dropped greatly from the highest we’d ever seen them, despite the dosage being 1/3 of the previous cycle. We know from last week’s appointment that Sally’s counts were dropping from the daunorubicin chemo week, so she is neutropenic. We hope that her counts can rebound before Thursday so we can avoid any hospital stay next weekend when the oral chemo takes effect.

We made a joke about Sally being a doctor in this, only to have Sally’s nurses reach out and tell us she’s actually pretending to be a nurse. Don’t mess with Sally’s nurses!

We’re getting a little better at this each cycle, but is still overwhelming at times and continue to get thrown unexpected curve balls. I’m at a busy/stressful period at work, so the stress between home and office can be a bit much at times. This trickles down to Nicole and the rest of the family as I try to balance both worlds. We just have to continue to take it a day at a time. Please keep Sally in your thoughts and prayers.

Matt