Robert and I have absolutely no regrets about getting Ravi the G tube. After his last round of chemo, he did not have mouth sores (hooray!) but still was not able to eat all of his meals. He needs to be getting at least 2,000 calories a day plus 2 liters of water, to wash out all the chemo. That is a lot of fluid to drink! Enter the G tube. Right now he is eating about 2 meals and 2 snacks a day. He is eating a wide variety of food and often seems to crave salt. Not surprising, considering how much fluid he is taking in. This is where Osmolite enters the scene. It is an adult formula that can go right through his tube. One serving of formula is 355 calories and it is easily digestible. Each tube feeding, when hooked up to the pump, takes about 45 minutes. Ravi does not mind his feedings at all, as he knows they make him feel better. When you ask him, “Who wants a feed?” He answers with a big smile. Yesterday, he had 4 tube feeds plus 2 meals (Carbonne’s pizza!) lot of Gatorade (both by mouth and by tube), some snacks, and was in a wonderful mood. His color is better, he has more energy, and does not seem to be experiencing any nausea. We will count this as a win!
We do not have chemo for 2 weeks. Now that we are into a “normal” schedule without medical emergencies every few days, he usually has chemo (1 or 2 infusions a week) for 3 weeks and then is off for 2 weeks, just checking in for labs twice a week. We go in for labs later today. I am curious to see what his levels are and if he has gained any weight. Every week he has been slowly going up a pound or two. He is still dramatically underweight but is heading in the right direction. What puzzles me is his hair. After the first round of chemo his hair mostly fell out and we shaved the rest of it. I looked at him the other day and realized that his hair is growing back in. He looks like he has a 5 o’clock shadow all over his head! This surprised me as I did not expect any hair to grow back until the completion of chemo. He also has the faintest hint of a moustache. A quick google search told me that sometimes hair can grow back during chemo. The search did not tell me if the hair stays. My dear sister-in-law, Cindy, wondered if “the hair follicles were shocked into dropping the existing hair, but aren’t suppressed enough to prevent new growth.” She may be right. I also wonder if the added nutrients are helping. When people are dramatically underweight, they can experience hair loss. When nutrition is re added, the hair grows back.
So, we are in cycle 3 or 6 cycles on chemo. We are almost halfway through. Spring is slowly coming and with it, new hope. It is hard to hopeful about cancer, or anything else, in the depths of winter. With the help of the g tube, despite the chemo being pumped into him on a regular basis, Ravi is surviving. He is still low energy, but his smile is back, and he happily likes to chat with people via Sam. Last week, something adorable happened. At home, he has a poster of the MN Women’s hockey team on his wall. Last Thursday, the women’s hockey team visited the oncology ward. The same 4 girls that are on his poster showed up in his room! The look on his face was priceless. It was like seeing one’s hero come to life. He gave them a huge smile, then got bashful and dove under the covers and would not come out. They cooed and laughed with him, dropped off some cookies to decorate and went on to the next room. It definitely made his day. So, to the Gopher Women’s hockey team, best wishes in the Frozen Final Four. We are cheering you on.
It is 4:00 am, because my muse does not keep regular 9 to 5 hours. I have a new kitten playing at my feet. His name is Fred, and he is mostly nocturnal, so he is happy for the company. The hedgehogs are also up. The dogs are crashed out at my feet, wondering why I don’t just go back to bed. Thank you all so much for your love and prayers. Keep them coming please! They are working. Be good humans and we will chat soon.
Harriet's Hedgehogs and Autism Advocacy 