Halloween has come and gone for 2016. The family and I had a great time this year trick or treating, spending time with friends and enjoying various festivities. Despite Evan's mobility challenges we made the most of the evening and collected quite a bit of candy. I never realized how hilly our neighborhood was until last night.
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| Fell asleep watching Star Wars earlier this week. |
While we're on the subject of food I thought I would update folks on the biggest development since my last blog entry. Evan's appetite has taken off due to the steroids. Last week Cristy and I didn't feel like dirtying the house cooking so we ordered Chinese food. Evan thoroughly enjoyed the fried rice, so much so that the next morning he asked for more. And then again at lunch. And again at dinner. We're at about five days in a row now of fried rice. The restaurant in our area surely appreciates our near daily visits for refills. Evan has requested fast food more than normal as well. The mood swings are a bit of a drain, but as long as he's eating we can deal with it.
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| Updated schedule along with Cristy's meticulous time keeping. |
Late last week Evan's PICC line was becoming sluggish. Cristy called the hospital to raise the concern and they asked us to come in yesterday to flush it. The main fear is allowing bacteria to fester in his line and then go directly into his heart and blood stream. I'm happy to report the nurses got it cleared and for now it's fully functional again. While there they weighed Evan and he gained two whole kilograms, up to 20.9 kg (46 lbs)! He's still down overall, but his increased appetite, combined with the food we feed him via stomach tube each night, will surely put him in a more healthy state ahead of these tough chemo sessions.
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| The boys were beyond excited to get out the door. |
Monday afternoon we also received the results from some blood work that was drawn last week. His anti-fungal levels have returned to a therapeutic level. We saw a dip in the numbers a couple of weeks ago and there was talk of increasing his dosage again. The medical team has to be very careful dosing this particular drug, Voriconazole, as it can cause hallucinations, color blindness and temporary blindness. His skin has started to look better over the past week and his cysts are decreasing in size.
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| 8:00 medications being administered while out trick or treating. |
Evan has another session of chemo tomorrow, followed by another heart ECHO on Thursday. He's also scheduled to meet with the plastic surgeon on Thursday to check all the surgical sites for his most recent operations. I won't know his blood counts until tomorrow at the earliest, but I'm expecting a noticeable drop because of his last chemotherapy session. As more sessions take their toll Cristy and I will need to be vigilant with his health and cleanliness.
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| Evan was a little wobbly, but rarely complained. |
With another Halloween in the books we continue to look towards the future. We're pleased with the progress so far, but we still have a ways to go. Counting the days of this treatment phase and hoping for the best.
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| Happy Halloween! |
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