This and That

Suddenly, we are three weeks into January. How did this happen? One day at a time, I guess. Ravi has been doing well. He had a week in the hospital in early January due to an infection but is now home and thriving. He is enjoying both PT and OT. The OT assessment was eye opening for me. I thought that he had lost a lot of his activity of daily living skills and had gradually taken them over for him after his surgery. It turns out that these skills were not gone, just lying dormant. To my surprise, Ravi is perfectly capable of taking on and off his socks and shoes, washing, soaping, rinsing, and drying his hands, working with putty, and picking small beads up out of putty with his left hand and fingers. It seems he was just waiting for someone to remind him that he still has these skills and was waiting for a prompt or some encouragement. The OT, Katie, was wonderful, and thought that he only needed to come in once a week for about 3 months and he would be all caught up. Ravi seemed very proud of his accomplishments. He continues to love and be frustrated by PT but is always happy when handed a basketball. Next week he begins speech. He is making meaningful communication with his AAC, Sam, and I am eager to see what he can do with extra guidance. 

January is my birth month and I wanted to do something special for our cancer community. St. Baldrick’s is a 501 C3 that raises money for pediatric cancer research. In lieu of presents, I asked friends and families to donate to them, setting a goal to raise $500. I have no background in fundraising at all, so this was done on a wing and prayer. I posted a recent picture of Ravi on social media and a brief description about why we were raising money. To my absolute delight Ravi’s followers came through for him. In less than a week we raised over $500. Friends, thank you so much. We are ecstatic and humbled. You are helping us put cancer research in the front seat and cancer cells in the rear-view mirror. 

Currently, we are in cycle 3 of either 6 or 8 cycles of chemo. Ravi is tolerating it well. It makes him tired and has him craving all sorts of interesting foods, but he is powering through. A nap now and then never hurts. His schedule is packed. He is now being followed by wound care and Infectious Disease. In addition to chemo and labs, he also has PT, OT, and SLP. This means many hours at the hospital, but we sleep in our own beds at night. The PT, OT and SLP gives him something fun and challenging to look forward to, as well as boosting his skills. Shout out to my ever-patient spouse, Robert, for keeping track of the copious amounts of medications Ravi has to take. At last count, I think he is on 9 different medications, taken at various times throughout the day. When he is not cutting up, grinding, or measuring medications, Robert is often found driving Ravi to his many appointments. It takes two of us to get Ravi to the hospital, get him to his appointments on time, and find a parking place. As the nurses are fond of saying, “Teamwork is dream work”, and I could not do this journey alone. Robert, my love, thank you.

It is 5:12 am. I have no idea why I am up. My muse strikes at unusual times. On the other hand, I cherish the quiet early morning hours, when it is just me, my pets, coffee, and my thoughts. Friends, thank you again for your prayers, good energy, food, love, and financial contributions to St. Baldrick’s. We are humbled and grateful. It is good to know that we are not on this journey alone. Be good humans and we will be in touch. Peace, Harriet.