Saturday, July 12, 2014

Mid-Summer: I Blinked And Time Disappeared

This will be a short, boring, light and fluffy post for a change. I'M KIDDING, of course. It's been a month so that means that one gazillion things have happened and that I'm sleepwalking through life most of the time. So here is your monthly (so much for my plans to go weekly...what's that saying about making plans?) drama-filled update:

Spencer had his MRI, MRV, and spinal tap as I mentioned in the last post. I wasn't there because I had to attend the meeting with all the preschool folks. He's in!! He starts Bright Beginnings preschool in the Brunswick school district in September. I've heard it's really amazing and all the therapies have set some great goals for him so I'm excited to see what he achieves. He's a bad ass! Anyway, back to the hospital...all looked good. Cranial pressure was still normal from when they removed fluid during the previous tap and nothing fishy to indicate why his nerves are swollen. This was both a good and bad outcome. Good because nothing horrific was wrong. Bad because if something WAS wrong, they could fix it and we could be done with this but there's nothing obvious presenting itself. Still in limbo. Phantom swelling. So his Oncology team sort of washed their hands of it for the time was really up to the Opthalmologist how often he wanted to monitor Spence. Even though we were scheduled to have the stents in his tear ducts removed in 4 months, we were going back in 1 just to stay on top of things.

So 1 month takes us to last week. I took Spencer to his post-surgical follow up. We're not even sure if the tear duct surgery worked. At least not 100% anyway. His eyes are clearer but not clear. We'll have to see what happens over the next few months. But what blew my already frazzled mind is that his nerves look WORSE. In 4 weeks the swelling has gotten worse. The doc said it was "quite significant", so he wanted to see him again in 2 months. WTF?? It's progressively gotten worse and no one can do anything about it? These are his EYES!

We managed to have a little fun camping at Pymatuning State Park for 3 days. Sully was pretty good for being such a busy body. My little timebomb. It wasn't a perfect mini-vacation but it was fun to do something besides school and doctor's appointments...which started back up when we got home. This time it was the Oncology clinic. He's gained a little weight (finally at 28 pounds!) and looks physically good, per usual. The Neurologist was there and she was up to date on the goings-on at the Opthalmologist. I should just start referring to them as the eye guy and the brain guy so I have to type less. Anyway, Eyeball & Brainy were on the same page about the increased swelling and they think it's time to bring in...a brain/eyeball guy! Yes, it's time to add a Neuro-Opthalmologist to his team! That actually exists. The bottom line is that if this is actually papilledema, he's at risk to lose his eyesight. The NO is all about the nerves, that's his gig. Hopefully he can be a tie-breaker or say something more concrete. I will NOT let him lose his eyesight. This kid has had ENOUGH.

His Oncologist thinks we're...he didn't say "blowing it out of proportion"...but he's not AS concerned. Then again, he does agree that the eyesight could be in jeopardy if it truly is papilledema so he's on board with Spencer seeing the NO. On top of all this nonsence, something was off about his white blood cells. No abnormal cells were spotted but the counts were lower than the last visit. This could just mean that Spence had a bug. He did have a verrrrrry low fever at school that morning. But since the numbers changed, we're back on monthly visits. I could've cried but if the numbers bounce back, the appointments will stretch out again. And at his next appointment, he'll have an ECHO since it's been almost 1 year since treatment ended. Chemo can damage the heart so that's another thing to stay on top off.

In happier news, Spencer might be involved in some fancy pants benefit in the Fall. I REALLY hope he's selected because it sounds amazing. With that and being the Honored Hero at the Light The Night walk, this kid is going to be pretty popular this year! Our Light The Night team has raised $735 and the fundraising has just begun! I can't wait to see what we can pull off by October. We'll never be able to repay everyone for what they've done to help our family but this is a way we can do some good. 

And in additional happy news, I'm getting my first passport stamp this week! I'm leaving the country with Sugar and meeting Lisa in Cancún! Lisa and Todd planned the trip on the sly as a thank you (a WAY TOO EXTRAVAGANT thank you) for helping with Lisa's wedding...which I loved doing. I didn't need a trip to an all-inclusive resort, but I'm not gonna say no!!! I haven't been on vacation since our Honeymoon and the last 3 years have been beyond stressful. I could use an umbrella drink and some girl time. I'm experiencing some anxiety about leaving the boys...I've never left them both, not even for an overnight...but I need this. I have books to read poolside, 3 new bikinis, and a new haircut (as of first in 15 MONTHS, gross).

I promise, promise, promise to post some pictures soon but for now...OLÉ!

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