I have been wearing a mask around Seth and the rest of the family and not touching anyone because I have a terrible cold. I am miserable and can’t imagine what it might do to Seth. What bad luck. Seth is still only taking a small amount of food despite our efforts. Taking the 3 daily pills of Gleevec also seems to get harder over time. Today’s experience with Gleevec went something like this: - Trina tried for 2 hours to get him to take the first pill. I finally had to help even though I didn’t want to come into the room with my cold. I have been giving Seth “energy” by having him focusing on my hands close to his head. He then takes in the “energy” by taking deep breaths. He reports feeling the energy as heat coming off my hands and it brings him comfort. It worked, and he took the pill without incident.
- We wait an hour before giving the second pill as we have learned that if we give them together that he often vomits them right back up. Trina is having bad luck with it today and spends another couple of unproductive hours trying to get him to take it. Seth is visibly and audibly frightened with each of her attempts as he “feels yucky” and says, “I am worried”. Crying gets his nose running and he vomits some of the mucus produced and swallowed.
- Trina reached the end of her resources today and she and I got on each others nerves easily. I try to come to the rescue again. It is more difficult this time but Seth barters with me that I will give him energy before, during and after he takes pills. He is whimpering as I am trying to rush it because I don’t want him exposed to me any longer than necessary. Seth puts the pill in his mouth and promptly vomits before it is swallowed.
- We retrieve the pill, wipe it and I elect to spend more time with relaxation through the “energy”. After some time we get them all down. We are all exhausted.
This day I was able to do it, other days it is Trina that is successful. Not all days are like this but every day is presenting challenges. I relay this story not because of its significance but just to give a glimpse to everyday life here. There was good today too. Seth is not febrile (thank you God) and is responding well to the antibiotics. We all got out for a walk in the atypical warm spell that we are having with me pushing Seth in the stroller and Savvy pulled by Trina in the wagon. Seth and Savvy are currently resting peacefully. Seth no longer vomits in the middle of the night from TPN now that the volume and rate have been changed. Tomorrow, while I am at work, Trina will try hard to encourage Seth to eat a little of her smoothies each hour (Trina blends fruit and Nutren) and to move around more than he did today. There is over a year more of this chemo intensity that is keeping his systems in such disarray. It is all worth it. Seth has a chance. Gary P.S. Trina is uploading some new pix later tonight---check the "photos" link.
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