Subway for the win

Getting Boo to eat is a fulltime job. He does not like the smell of food and prefers that I bring small amounts of food to him in his bedroom. Keeping him hydrated is relatively easy, but solid food is a bit of a challenge. Today Robert brought him a 12 inch sub from Subway with just about everything on it. For this, Boo mustered enough strength to make it into the dining room and sit at the table. I did not ask him to do this, he just did it. Half the sub vanished in about 5 minutes flat, along with a handful of chips. Then he wandered back into his room. A few minutes later he emerged and ate the other 6 inches. HIs color looked a bit better after that. What I am learning is that each day must start with copious hydration. Then I will offer him Ativan, Tylenol, and his usual other med. This damps the nausea down enough that I can usually get him to eat some meat or some cheese. He has developed a love for string cheese. He is not interested in fruit at all, but happily ate all the veggies on his sub. He has labs drawn every Monday and Thursday. On Thursday I got a call from the lab saying that his white blood cell count was very low. They did not think he needed to come in for a transfusion but wanted me to watch him carefully for a fever. If he spikes a fever, we are supposed to head for the hospital immediately. So far, no sign of a fever, just unrelenting fatigue. His team has given him the okay to go to school, but he barely has the energy to make it from his bedroom to the bathroom. Right now, school is a fantasy. I took him out for a ride in the car and a stop at a drive through yesterday, and that wiped him out for the day. We go into Journey’s Clinic on Monday for labs. I will not at all be surprised if they decide to check him into the hospital. In a sense, I wish they would. The rest of the time it is me watching him, wondering if I am taking care of him the way that he needs. This is the weirdest endurance race that I never signed up for.

On a brighter note, I got outside today and ran 8 or 9 miles. I have not run this far since November. It was slow, but it was such a joy to be out. The path was plowed and packed down. The woodpeckers were raising a happy racket in the trees by the river. There were lots of runners and walkers and tons of dogs. It made my heart happy.

I was about to close out this entry when Boo suddenly got to his feet and headed into the dining room. Mercury, Eliyah and Robert were eating steak. Boo sat down and looked interested. I cut him up a few bites of steak which he slowly ate. He downed this with another glass of Gatorade and headed back into the bedroom. I will keep the steak on the table in case he wanders back in. I have found keeping foods out that he can just graze on at will seems to work fairly well. Too much food offered at once, and strong smells will cause him to flee the scene, but little bites at a time are acceptable.

A huge thank you to my running group, TCRC, for giving Boo a huge supply of technical race t shirts to wear. He seems very comfortable in them and has not been tempted to mess with his port. Thank you also to people who have sent me food, dropped food off for me, or loaned me the charger to their Garmin when i could not find mine. I hope everyone has dug out from the last 3 days of snow. Smile at people and be good humans.

Author: snort262

I am a wife, mom, long distance runner and fierce autism advocate. My background is in education. Currently, I am a nanny, a tutor, and an autism consultant.

2 thoughts on “Subway for the win”

  1. I was thinking back on my cancer journey that started on my daughter Zoe’s 18th birthday. I was diagnosed with cervical cancer on 2/2/2016. It was the hardest day trying to be happy for her while I had already waited an excruciating week for the results of my biopsy which was done on my 25th wedding anniversary (talk about timing 😵‍💫). I’ve been in remission almost 7 years after a stage 3 diagnosis. I hope the nausea meds become easier for Ravi to take because they ABSOLUTELY work if taken before the chemo is given and way before expected nausea. Unfortunately, they are less effective if the nausea has already started until the next treatment. And just like during pregnancy smells and odors and tastes change. Almost daily, so it’s good to have a variety for him to graze on. A big win on the sub indeed!!! Prayerfully he can keep his calorie and fluids intake up!! Our continued love and prayers for a FULL RECOVERY ❤️‍🩹.



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