A Quick December Update

Hello to Friends of Boo! We are now over a year into this strange journey called Osteosarcoma. Ravi is a year old, a bit more battle scarred, but still has the same beautiful smile and sunny outlook. Yesterday he began his second cycle of gemcitabine without much issue. The three of us have been passing around some sort of virus, and we debated giving him the chemo, but decided to forge ahead. We preceded the chemo with a liter of saline to keep his kidneys happy. Today, he seems a bit slow, but still greatly enjoyed going to PT. He got to work with a basketball, walk on uneven surfaces, and was encouraged to whack at things with his left hand. We followed this up by a treat at the upstairs coffee shop. He got gummi worms, I got a latte. Later, we swung by Taco Bell, so he thinks today is an okay kind of day. We are concerned about his weight, as it has dropped dramatically. Right now, we are meeting all of his dietary needs with formula through his G tube and offering him anything and everything else he wants to eat. We did have to have words with the dietician. Her answer to the weight loss was for us to have him hooked up to a feeding pump at least 12 hours a day. This was met with a hard no. He has to have a life, as well! We can’t run the feeds overnight, as he is savy enough to unhook himself and let the formula go wherever it likes. This particular dietician knows how to crank numbers but fails to realize that there is a person at the other end of the equation, and people and equations rarely fall neatly into synch. So, we do the best that we can.

We are not really celebrating Christmas this year. Ravi has a round of chemo on December 26, and we are at the clinic at least 3 days a week. We will celebrate when chemo is over, and he gets to see the Pacific Ocean. For now, we are just enjoying each other’s company and doing the best that we can. This winter will be busy. In addition to chemo and PT and all the accompanying labs and scans, Ravi will be doing outpatient OT starting January 8. In February, he will be getting speech language therapy. I am thrilled about both of these opportunities. He has not had OT or SLP since last year when he got sick and had to leave school. This will be so good for him, and I think he will really like it. The more we can keep him learning and engaged, the happier he is. We are still stunned by his willingness to go to the hospital so often, even after having been stuck there, inpatient for a month this fall. If nothing else, Ravi is a trooper.

We wish you all the best this holiday season. For some, this is a season of joy. For some, this is a season of pain. For me, it is more of a continued Advent, a season of waiting. But Advent is also hopeful season, as well as an introspective one. As I go through my day, I try to remind myself that I do not know what those around me are going through, and I try to be kind, even though the inner me tends towards being impatient. Everyone is carrying a burden of some kind. When in doubt, be a good human. Peace.