Hello, again

Hello, FOB, or Friends of Boo. It is 4:38 am. Boo is in his room happily hooting. We are not sure why. He is not hungry, he is not thirsty, he is just awake and rocketing around his room like some sort of demented owl on speed. If we weren’t so tired, this would be absolutely hilarious. But we are tired!

In a few hours we head to Mayo, in Rochester, so the surgical team can get a good look at Ravi’s arm. To my eyes, it looks like it is healing nicely. Our Minneapolis team sent a picture of the aforementioned arm to Mayo two days ago. Mayo thought the arm looked a bit red and called me back. They asked for us to bring him down at 9am instead of 12:45 pm. The plan is to look at the arm, see if it needs to be cleaned out (ie: another surgery) and then he would stay the night for observation. I flat out do not want this to happen. Boo has had more than enough surgeries and hospitalizations in the past few months. As I said, the arm does not look really red or angry to me. My fervent hope is we go see his team, they examine the arm, maybe take out the stitches, repack the arm in its brace, and send us on our merry way. As a precaution, I will pack another set of clothes and meds for us, but I really hope we are home by midafternoon.

I continue to love Fairview Home Infusion. Every few days, we get another installment of supplies. Once or twice a week, a nurse shows ups to do a home visit. They can re access ports, re-dress wounds, take labs and vitals, and just do all the things that are usually done in the clinic. All of this takes about 30 minutes, tops. This is a huge timesaver and is greatly appreciated by all of us. The dogs, of course, think the visitors are all for them and greet every nurse or delivery person with proper enthusiasm.

We met with Dr. Terazakis earlier this week. She is planning for Ravi to have an MRI to best target the bony tumors in his body. Then, she will build a form to go around his body to prevent him from wiggling (he loves to wiggle!) during the radio therapy. He will also be sedated. Treatments will take 5 days. He will come in once a day for 5 days for the therapy. The sites targeted will be in his cervical spine and lumbar spine. For right now, the two new spots on his mandible and base of his skull are just going to be watched. She says that these growths are tiny, and she does not want to do anything with them yet. If they grow, we can target them at a later date. There are always risks when doing anything with the spine, and it could cause neurological damage. On the other hand, the chances of damage being caused are greater is we were to leave these spots alone. So, we are weighing the odds. From what I am told, radio therapy is less hard on the body than chemo. He may experience some fatigue or some GI upset that should go away promptly. Any pain can be managed via medication. We are not sure yet when the radio therapy will occur, probably sometime in mid to late June (happy birthday, Boo) but we know that it will be a very intense week.

Thank you to all of you who follow our story. I seemed to have morphed from being an autism advocate to an osteosarcoma advocate. This does not mean that I am any less passionate about autism awareness and acceptance, but I am also passionate about wiping out a deadly disease. It is nearly 5am. I am going to change clothes and go for a run with the dogs. They will be on their own for much of the day, so this is a chance for them to get their wiggles and barks out. Wishing you all a blessed day. Be good humans. Peace, Harriet.