Hello, friends. Ravi just finished a grueling 10 days. Last week he began radiation therapy to the mets in his spine. Each session was about an hour long, every other day. We had to check in at the hospital at 5:30 am. Nurses would access his port and get vitals. The anesthesia team would swing around and talk to us. We would give consent for the procedure. The team would sedate Ravi and head into the radiology room. During this time, Robert and I would duck into the cafeteria for some breakfast and then return to the waiting room. We began to recognize other patients since we were all on a similar schedule. Ravi was the youngest patient there by decades. The most stunning side effect of radiation is the debilitating fatigue and loss of appetite. For the first time in months, we had to return to feeding him formula through his G tube, just to get enough calories in him. This is in addition to the 3 liters of fluid he is supposed to get daily to keep his kidneys happy. Ravi prevailed through all of this with strength and grace. Thank you all so much for the prayers and good vibes. They helped!
Next week we are going to a Reign in Sarcoma party in the park. It is a chance to meet and greet other survivors and have some fun. There will be rides, food, inflatables and more. We are looking forward to it. The rest of the week should be pretty chill. In early August we are going to fulfill Ravi’s wish. We are going to Duluth. While there we will go on a train and eat pizza, take a boat ride, and play on the beach. All of this and more is provided through an anonymous donor at Nik’s Wish. We are eternally thankful for this upcoming respite.
When we return from our trip, Ravi will begin a maintenance oral chemo. I have talked with another mom whose daughter has a very similar diagnosis to Ravi’s. She also went through radiation and has been on this drug for over a year. She has not suffered any ill effects from it. She has had 3 PET scans and all of them show that her disease is stable. This gives us hope for Ravi.
I have some big news coming up, but I don’t want to announce it just yet. It has to do with osteosarcoma research and distance running, two of my passions. I will fill everyone in on my next big endeavor in a few weeks.
The last two weeks have been brutal, and we are happy to put them in the rearview mirror. Thank you for all your thoughts and prayers. Be good humans and we will be in touch. Peace, Harriet.
Harriet's Hedgehogs and Autism Advocacy 