Getting kisses from Sally

Surprisingly happy this week.

Matching pajamas

Hi Everybody,

This is Nicole. Sally has done well post three days of chemo. Overall she has been active and even eating a little. The last three weeks I’ve been going to MSK on some of our days off for additional OT/PT. This past week, we’ve had a few breakthroughs and reached some milestones. Sally said “bye-bye” while waving and also found her way into a sitting position after laying down. She’s also learned to transition from all fours to sitting and she’s also started to move around on her bum (crab crawl)! She is almost 14 months old and has been on hold developmentally since she was 9 months old when all of this started. These recent milestones are huge. Crawling, cruising and rolling are still on our to do list, but we’re so proud of her.

Somebody just sat up on their own for the first time!

Practicing standing.

Let’s catch up on the last week. On Saturday the 2nd I worked, the boys had soccer and our niece Joan had her Sweet 16 in Staten Island. Matt, myself and the boys attended while Aunt Cindy had quality time with Sally at home. Sunday the 3rd we had a family day, cheered on the marathon and prepped for the week.

All of us rooting on the marathoners.

At the marathon we did get to see Sally’s Nurse Practitioner Lauren, but somehow missed our friend Iliana who ran with Sally’s name on her back.  The rest of the week was jam packed for us.

Monday we spent the morning at MSK for OT and PT. Tuesday, Thomas and I went to the city for his psychiatric evaluation. Sally stayed home with Bozena, our friend and sometimes sitter. Wednesday Sally and I were at MSK for more chemo, monthly anti-pneumonia drug and a PT session. Afterwords we headed to Brooklyn Heights to attend her meeting for Early Intervention services. The meeting went well and she was approved for PT 30 minutes twice a week, feeding therapy 60 minutes once a week, and play therapy 30 minutes once a week at home. YAY!!!  It turned out the eval meeting took place around the corner from where I work, so Sally and I dropped by to say a very quick hello. I really miss work and my coworkers, it was great for me to see them and for them to see Sally.

Hanging out at work, even getting a visit from Norman. Funny how they’re the same size!

Thursday was a repeat of Tuesday with Thomas having the second day of his evaluation. Friday came and Sally and I did our best to get the house in order. Yesterday I went to work, the boys went to their last day of soccer with Aunt Cindy and Daddy hung out with Sally and cleaned what we couldn’t get to the day prior. Of course Thomas still made it to chess and karate twice even though he was out of school twice. So yes, it was a very busy week. Thanks to the people who delivered food through the meal train, those fresh direct gift cards people donated and everybody who helped us get the kids where they needed to be.

Sally is going in for her bimonthly bone marrow and spinal tap with chemo this Thursday. After her marrow sample is taken, Matt and I will hold our breath waiting for the results that will hopefully confirm that Sally continues to be in remission. If her blood counts are good (neutrophils over 1) we begin the next “60-day” cycle. It turns out her cycle will actually have a range, 55-60 days depending on how well she recovers. They will increase some of the chemo that she tolerated well this past cycle, and continue to do so each cycle to see how much her body can tolerate. They will also lower the methotrexate they think that gave her the awful mucositis (sores) this cycle. I was warned Sally may not always tolerate the cycle as well as she did this past one, especially as they increase the amount.

I’m thankful for the break this week, Sally and all of us needed it. Thank you all for your thoughts and prayers.

Nicole