Down, but not out

Hello, friends of Boo. It has been a strange week. Last Monday Ravi had a PET scan. The results of the scan were mixed. The nodules in his lungs are stable. The fungal lesions in his spleen and kidneys are gone. But the cancer has spread to other parts of his body. We are sad. Well, I should say that Robert and I are sad. Ravi seems to be in fine spirits. His hair is growing back in, the IV antibiotics are holding off an infection, and he has been out of the hospital for nearly 3 weeks. So, what is next?

Tomorrow, we meet with Dr. Terazakis, one of the top radiology oncologists in the country. We had met with her once before, a year ago, and liked and trusted her. We are expecting that she will prescribe a series of short radiation sessions for Boo, to try and hold the cancer at bay. From what I am told, targeted radiation is much easier on the body than chemo. The most common side effect is fatigue. Right now, Boo is too weak for chemo. His surgery wounds are still healing. After they are healed, we may try him on a daily, oral chemo that he can take at home. Hopefully, the side effects of this are minimal.

In brighter news, we now have home nursing care! This is a huge blessing. A nurse will come to the house once or twice a week to run labs, give fluids, check the surgery wound, etc. We had a visit earlier this week and she got done in 30 minutes what would have taken us half a day if we had gone into the clinic. I could palpably feel the stress in the house go down when we do not have to report to the clinic every day.

Port de accessing is Boo’s newest game. He has to have continual port access until June 17 for daily IV antibiotics. I do not know if the port tape is itchy, or Boo is just perpetually curious, but he keeps de accessing the silly port. On a weekday this means we have to go into the clinic to have it re accessed. On a weekend, this means we have to spend half a day or more in the ED. Sigh. But, now with home nursing, even on a holiday weekend, we do not have to go to the hospital to get him hooked up again! I simply call Fairview Home Infusion, and the company sends out a nurse to fix the problem. Easy peasy. Twice over this holiday weekend I have had to call for a nurse. We did not have to leave the house, go to the hospital, search for a parking place and then wait for a nurse to help us. We simply hung out at home and when a nurse showed up, she popped in , accessed him, and went on her merry way and we continued with our day! This is an amazing blessing.

Ravi had his yearly assessment by a county social worker last week. I must admit, I felt bad for the poor county worker. He had never had an autism client with cancer before on his case load. He asked me to describe what a bad day with autism and cancer looked like. I told him. He blanched, winced, and then apologized. It looks, though, as Ravi will be able to get more at home supports. Here is my prayer: That I continued to get paid for work for Ravi for 40 hours a week. That we get in home nursing care. That Robert and I get an occasional bit of respite. That Ravi is healthy enough to enjoy a somewhat normal existence.

So, here we sit. Not all good, not all bad, sort of a mixed bag. Thank you to everyone who gave us such a joyous homecoming, who looked after our pets, or who supported us from afar while we were at Mayo. Your actions are deeply appreciated. I am going to sign off as I can hear that Boo is up and about. Anyone want to take a guess is I can still access his port or not? At any rate, he sounds happy. Our boy is happy, and that is all that matters right now. Be good humans and I will be in touch.