Hi all – Nicole and I are about to try and head out to a local party in a bit. With adults only. A concept very foreign to us and is much needed after last weekend of hospital trips and a crazy week ahead. I just wanted to post a quick update as we haven’t in almost a week.
Sally had an OK week that improved each day. Nicole did a great job keeping her hydrated (barely) despite Sally throwing up a lot and having the runs. We feel this was mostly due to the antibiotics she was on for her ear infection, the antibiotics she got during each hospital visit, and the mucositis (AKA mouth sores that may have been in her digestive track as well). Sally received OT/PT this week and saw some improvement in her motor skills, including being able to move her legs independently while sitting to get around and reach for things.
This is actually the first week in awhile that Sally didn’t receive any chemo. On Thursday she just went in for blood counts, which looked good. They also informed us that she still has an ear infection. Nicole decided not to give her another antibiotic as her stomach needed a break. She also figured out that Sally needs something thicker in her stomach to help with her indigestion, so we’re now giving her formula mixed with some cereal every couple hours through her feeding tube to provide a ‘base’. It appears Sally’s sores have begun to heal since yesterday and today she was able to eat a saltine cracker. Have I ever said how amazing Nicole is at being Nurse Mommy?
This coming week starts Hell Week 2, and the completion of this current cycle. Sally will receive very intense chemo on Wednesday, Thursday AND Friday. It’s a lot, in fact they will allow Sally two full weeks to recover from it before starting the next cycle of treatment. We can expect the following week to have challenges as Sally’s counts will drop. On top of that, we have her OT/PT and evaluations for our oldest son Thomas over the next two weeks. We’ve been on a wait list for three months to get this evaluation for him, figures it would fall during Hell Week 2.

Walked into this craziness after work the other night, Thomas giving Mommy a massage with Sally/William enjoying the show.
We also received this letter from a mother, her 4 year old son and his friend set up a lemonade stand to raise money for Sally:
So the next two weeks are going to be really busy and rough. Thursday is also Halloween, a huge deal at MSK for the children. I took off from work so I could spend the day there with Sally which would allow Nicole to go to the first appointment for Thomas, and then run home and take the boys trick or treating after school.
Until then, just going to take it easy and enjoy the calm before the storm. Please keep Sally in your thoughts and prayers.
Matt
So glad to hear Sally is feeling better. Those antibiotics reek havoc on their tummies! Can she have some Culturel sprinkled into her beverages/feeding tube when necessary? That certainly helps the intestinal upset. Can’t wait to see the Halloween pics!! God Bless you all… xoxo …I think it was Halloween when we saw Thomas eat pizza for the very first time! He was like 7 months or so, I think! Wow, time goes by too quickly!
Keeping you all in my prayers always!
Are you going to wear your tutu, Matt?
It was good to hear about what is going on with all of you. I keep praying for everyone. Love you all. Gram K
Sending healing energy to the whole family