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March 31, 2010

Day 43 - Family Feeding

Today's Stats:
- weight loss: 26 lbs
- number of radiation treatments remaining: 2
- number of chemo treatments remaining: ZERO!! Wahoo!
- number of hallucinations today: 8 and counting

As many of you know we have not been hiding anything from the children when it comes to Michael's illness and treatment. If they have questions, we answer; if there is a change in treatment coming up, we explain it to them; if there is an expected change in Michael's symptoms, we talk about what to expect. So it was no surprise that the children want to be involved in the tube feeding!

This morning, Finghin came into our bed for his morning snuggle. Ten minutes later it was time for Michael's feeding. Normally I would have asked Finghin to leave, but he wanted to stay and help. Since I am still getting used to the process of PEG feeding myself, I asked Finghin to do a very important job of holding Michael's hand during feeding. He complied willingly, but was also full of curosity and wanted to touch the tube, asked about the formula, the syringe, what was going on. Finghin was totally engaged in his job and was feeling so proud to be so helpful. He massaged Michael's hand just as I have done his for the last 6 years. He smiled at me, gave me a kiss and said "You learned me how to do that". I was so proud of him. It was a very special moment for Michael too.

The 6PM feeding turned into a party, with me, Finghin, Hannah, Grandma, and Noah all in attendance. Afterwards, Hannah and Noah got the idea to sell tickets to attend the feedings. Four shows daily lasting about 20 minutes, exclusive engagement, limited time only!!!Tickets available soon!

Michael has his last chemotherapy treatment today. He slept through most of it as he had a couple of Ativan on board. I am not sure if there was residual narcotics in his system post surgery, or if due to nutritional depletion the effects of Ativan were amplified. Whatever the reason, he was seeing and saying some crazy things! One time when using the suction machine he said excitedly looking at the mucous "Did you see that?" I said "What?" to which he replied "That was a cricket, did you see that cricket?!". Later he proclaimed that there were small animals in his mouth; later still he was making precise hand gestures that included putting away blankets at the infusion center, outlining his spine, pointing out an unusual eraser to Hannah, opening a can of baby formula.... all very real to him.

During one of these moments (putting away blankets), he opened his eyes and saw me smiling at him. He laughed and said "You caught me, didn't you?" We had a really good chuckle as he explained to the nurses how he saw some shelves, he needed to make some space, and once he made the space, he started stacking the blankets. At least he seemed to be enjoying himself!!!

A huge thanks to all the nurses, pharmacists, and staff at the Infusion Center in Santa Rosa. They are caring, engaging, attentive, and full of compassion. They do an amazing job, and are good at what they do. Thank you for making it as comfortable as possible for Michael, for always making us feel welcome, for answering our questions, for your sage advice, and for flawless IV insertions!

Posted by Claire at March 31, 2010 08:17 PM