Greetings from room 5132

Hello from the oncology ward, floor 5 at Masonic Childrens Hospital. We are hanging out here a bit longer to get Ravi’s electrolytes under control. He had 4 days of chemo and did really well. Everything came crashing down on day 5. He needed two emergency blood transfusions and a lot of balancing of those tricky electrolytes. We were slated to go home on Sunday, but it was not to be. Today, the team is trying to wean him off IV fluids and see if he can handle taking everything by mouth or G Tube. We are so incredibly thankful for the G tube. It has been the only way to get fluids and nutrients into him. He did have a seizure about a week ago, but the doctors fiddled with the meds and now that seems to be under control. This is one big balancing act, or maybe an advanced chemistry equation.

This morning we had a great zoom session with Dr. Allen Rhodes at Mayo. She showed us his scans, walked us through what they meant and was very warm and pragmatic. I liked her immediately. She feels that we are pursuing the right course of action with the Ifosfamide and thinks that 6 cycles of it is reasonable if Ravi is able to tolerate it. We have just finished cycle 2, so one third of the way there. She said that the radiologist we are seeing wrote the definitive book on radiation and bony tumors. Radiation will occur, briefly, after chemo is complete, probably in December or January. There will probably only be one or two sessions of radiation. It was interesting looking at the Scans of his primary tumor. Osteosarcoma looks like an aggressive cauliflower. The primary tumor was about 17 cm long. We are SO very glad that is gone, with good margins. The tumor was about 60 % dead upon removal. The mets in his tibia and L3 are much smaller and show less activity. The mets in his lungs will be dealt with by surgery, radiation, and ablation. This can be done in between chemo cycles.

Thank you all so much for your prayers and good energy. I can see your prayers and energy in action by watching Ravi. Honestly, he is the bravest person I know. I am so proud to be his mom. We hope to go home tomorrow and sleep in our own beds. Every time I go home, the animals have much to tell me. They miss having their humans around. I miss their funny, furry little selves. Be good humans, and next time we touch base, we hope to be home. Peace, Harriet.