THERE’S NO PLACE LIKE HOME
There’s no place like home.
Scarlett is now an outpatient at MSK which means we are HOME. It is such a nice feeling to walk past her bedroom and not see the perfectly made bed with Riley standing vigil or the bookshelf in perfect order or the army of American Girl Dolls and stuffed animals lined up waiting for her to return. She is here and it feels good.
I heard countless times over the previous week from Scarlett that she just wanted to go home and see Riley. On Tuesday, she got her wish. Our doctor believes that while a child’s blood counts are good and the child is not with a fever, they should be home. I second that emotion! Coming home was amazing but did present itself with new challenges. Leaving the safety of the hospital was (and still is) daunting, Scarlett must take 9 doses of medication each day. For a child that has never had more than Tylenol through a dropper when she was two years old, it’s been a challenge. We are trying to learn to swallow pills using mini M&M’s which will make life easier as most of the medicine tastes like battery acid. (I know because I have tried them.) Thank you for the suggestion to go to Cherry’s Pharmacy on 66th Street. They are brilliant there and have several flavors they use to mask the taste of the medicine.
Scarlett is thankfully still asymptomatic. The chemotherapy is making her sick but her body is responding well to it. We are trying to figure out the right combination of medication to help fight the nausea (pretty soon I will be able to spell that word and its derivatives without spell check!).
Austin is also coping well. He wants to know when Scarlett’s first Christmas will be over! Thank you for the outpouring of email, notes, meals, visits and gifts. It has made our life easier. Because this particular cancer has a long treatment, I have put some gifts aside so I can spread out the love! If you sent something seasonal, let me know so that I can make sure it’s opened!! I will be honest, a few cards got lost in the chaos in our first week of this “new normal.” Whoever sent the giant container of every rainbow loom color imaginable- thank you!!!! Please let me know who you are so that I know who to thank!!! Many have asked what else they can do to help. Please get your flu shot! You can’t visit us without it!!! If your son is at school with Austin, please be so mindful of his health and keep him home if he is ill
We have been back to the hospital every day this week for procedures and amazingly we are building a community there. Cancer in children is so rare that you find out quickly when someone knows someone that also has a child with cancer. These Mothers have been an incredible resource to us. Their advice has proven invaluable and their insight has helped us cope with the reality of what lies ahead
For now, we are taking it day by day. Each day has definitely had some lows, but each day we are reminded of the power of love and how we draw strength from others.
I asked Scarlett last night how her day was and she replied,”It was good, Mommy. I got to spend the whole day with you.” Perspective. Enough said.