Good results

Rion had a great doctor's appointment yesterday- his blood work is perfect and except for his weight being down nothing much has really changed. He is almost 10 pounds below his starting weight back in March- not too drastic but he feels small when I hug him. With his weight loss & my gains, I'm catching up to him...I do NOT like that idea at all LOL

We are all set to start our next round of chemo in two weeks on June 16th; they will be increasing his dosage again. I am not sure of the exact dosage (I was not at the appointment Tuesday and Rion doesn't ask a million questions like I do) but he was currently on a 25% reduction at 280 mg...I am far too lazy to do the math but it isn't a huge increase. If we can just keep the vomiting under control and keep him eating even when nothing sounds good then we'll be ok. I can't believe we have almost completed a quarter of the year on chemo; it's going by much faster than I anticipated, thank goodness!

The only teeny tiny concern I have is that I think Rion is still having partial seizures- sensory partial seizures to be exact. Here is a link where you can read more about it. Rion is still hearing the "clicking" sporadically that started after his first seizure back in November. He describes it as sounding like the light cord on a celling fan hitting up against the base of the fan- a constant click, click, click that is very loud & distracting. The first few times it happened he actually went around the house trying to figure out which fan was causing the noise. We attributed it to a side effect of his anti-seizure medication since one of the side effects is auditory hallucinations but it has persisted for over 6 months now. He says it is so loud that he can't really concentrate on anything else when it happens and we usually shut off the TV/radio & just sit quietly until it passes. I happened to be watching his face one night last week as the clicking started and his face went blank, similar to what happened when he had the seizure in November except it wasn't as bad. I could tell IMMEDIATELY when the clicking stopped by his facial expressions, before he even told me it was over I asked him. So we're going to be bringing that up next Friday when Rion goes back to the oncologist for his final blood work before restarting chemo.

I started this blog yesterday and had written all of it up to this point. Rion brought something up for the 1st time last night that we are now also going to address with the doctors; he is having what we only know to call panic attacks again. They last a few minutes and he describes it as his heart & thoughts racing and he has to take deep breaths and really focus on relaxing to get it to stop. They don't last long enough to take any anti-anxiety medication but they are disturbing enough that he has started marking them on the calendar to keep track of. I am thinking maybe they need to increase his Celexa dosage which he takes everyday for depression & anxiety but we'll see what the doctor has to say.

I'm sharing all of this because I want everyone to remember that what they see on the outside isn't necessarily a true representation of how Rion is really feeling and that there is usually more going on that you can't see. I can tell that he tries so hard to act "normal" but he is still recovering from MAJOR surgery and taking a fairly high dosage of chemo. Not to mention the 6 weeks of radiation that caused him to lose most of his hair and zapped whatever energy he was able to salvage after surgery.  I feel like I am always the "Debbie Downer" excusing us out of doing things that we normally would have jumped at the chance to do before. It doesn't help that Rion still likes to say yes to everything we're invited to do but in the end often ends up over tired or stressed and then sleeping excessively to catch up. I'm the voice of reason and he's the fun one basically :)

So...pretty good news all around and we look forward to getting some answers to our newest questions. If it seems like there is ALWAYS something new popping up, yup, that's how it feels to us too! But we recognize and appreciate how blessed we are for every day we get together even if some days are more of a struggle than others.

Blessings,

Emily