Hello, FOB! Nice to see you. In the last few weeks Boo/Ravi has grown in a full head of hair and very expressive eyebrows. I have to admit, I have a hard time keeping my hands off of his head, he is so furry! In other news, we wish his kidneys were doing as well as his hair. They are still acting up, as is some sort of fungal infection in his lungs, kidneys, and spleen. This was discovered during his last PET scan. The good news is that his mets are mostly stable, the bad news is that our boy is a walking infection. No wonder he feels so crummy. His weight has tanked, he is refusing to eat or drink anything, and thank the goddess for IV saline infusions and his g tube. He was supposed to start his next cycle of chemo on Monday but did not due to poor kidney function and being drastically underweight. Instead, he got a liter of saline and was sent home. We went back into Journey Clinic yesterday and his kidney function was still poor, so more fluids were needed. We are coming back in again today and Saturday for more of the same. He is being a very good sport about all of this, but it is taking a heavy toll.
In the race to obliterate cancer cells, doctors often forget that they are dealing with a sentient being, a being that can get scared and anxious. Ravi has been so incredibly brave the last 11 months, but he has had about enough. I struggle with depression and anxiety and know the signs. I began pushing his team to bring on board some Zoloft and some Buspar. We began that yesterday. The Zoloft will take about 6 weeks to really kick in, but for me, Buspar was a game changer. It is not a benzo, it does not dope me out, it kicks in immediately, and allows me to function. I am hoping it has the same superpowers for Boo.
Everyone needs a life outside of cancer. Boo graduated from school last June but has yet to come to the top of the waiting list for Midwest Social Services, the day program we want him to attend. For a while, he was so sick, no of us were even thinking about a life outside the hospital. But Boo wants that life. He misses his friends. His awesome former teacher, Rosalind, suggested St Paul adaptive recreation and also Highland Friendship Group. Both look like great ways for Boo to be out in the community, engaging in the things that he loves, like bowling and music. Today, after his saline infusion we are going to Como Zoo. I don’t know if he has the strength to walk around the zoo, but we can rent a wheelchair. Saturday, we are going bowling. He has been telling me that he wants to bowl, so we will make it happen. Hopefully, we will be able to get him out of the car. He wants badly to go do fun things, but when we arrive the anxiety takes over and he is afraid to leave the car. We tried to take him to Culvers the other night, but he refused to leave the car. We drove around for a while, which he liked, and ended up at MOA, where he used to love to go walking. He still refused to get out of the car. So, we drove around some more and he seemed happy. Interestingly, the one place he does not refuse to leave the car is at the hospital. I am grateful for that. I took him to clinic by myself yesterday and had he refused to leave the car, I would have been stuck. As it was, there was not a problem. Boo saved the day!
So, where are we now? Today and tomorrow, we go into clinic for labs and fluids. If his kidneys are stable, he can have an infusion of chemo on Monday. This will be given outpatient. On Friday, he has PT to learn to reuse his left arm. On the following Monday, he will have chemo again. Then, hopefully, we can enjoy thanksgiving together. By then, he should be done taking the micro fungal medicine which is making him feel so icky.
We wish you all a happy Thanksgiving, or whatever it is you chose to celebrate. We are hoping for a quiet day at home. Thank you for the thoughts, prayers, good energies, socks, hats, and stuffed animals. They are deeply appreciated. Be good humans and we will be in touch.
Harriet's Hedgehogs and Autism Advocacy 