Saturday, December 13, 2014

A really overwhelming week...

This has been a really overwhelming week for me.  

How so? (you might ask, if we were sitting across from each other at a restaurant with cold, frosty beverages in front of us.  Coca-Colas, of course. Stop that)

Amie’s health is declining, and I believe it’s happening quite aggressively.

The fluidity of her movements has always been a major flag for us, in being able to see how easily she can pick up things, grasp a crayon, or do other simple movements.  We’ve gotten really used to picking up on that kind of thing as part of our daily monitoring of her.  Seeing it decline, and watch her having trouble doing the few things she can do independently is really hard.

Additionally, her blood counts have been literally the worst they have ever been.  Her platelets, which help her blood clot, were at 12 on Monday. As you’re reading this, yours are probably in excess of 150. She had a 90 minute nosebleed and we could not stop, and just went into the hospital to get her blood checked and transfused.  Her hemoglobin (red blood) was at 6, and yours is probably around 13-15.  That’s a little girl operating at less than 50% of the oxygen that she needs to thrive.  Marcia told me that most people, when they go below 10 refuse to get out of bed because their fatigue is so extensive.  Now make that 40% worse.  Yeah, we've got a tough kid.

Add into the mix that her radiation has all of a sudden exploded into radiation burns.  I could show you the pictures I’ve taken, but in all honesty, that’s not going to help anyone do anything, and is just going to scare and sadden so many of you to see it.  She says it does not hurt, and her blisters do not bother her… (we think we can say thank you to the methadone for that), but it is still REALLY hard to see, and not be overcome by it.

Top it all off with the fact that she’s vomited twice today, for no reason that we can really see.  She had some blood clots in her vomit, but nothing sizable to trigger her vomiting.  It's been a year since she tossed her cookies, so that's a warning sign.  Looking at the wikipedia entry for symptoms of a brain stem tumor, meaning that the tumor is spreading from the cerebellum into the brain stem, we’re hitting several of the qualifying symptoms.  Or she could just be vomiting.

Put it all together, and the signs that things are progressing, that the relief from the radiation is coming to an end, is very, very hard.


This is Amie and Shelley crafting this week.  Emotion shift!

But this week has also been ridiculously full of overwhelming and outlandish generosity from people.  We have received a constant stream of donations on our GoFundMe page.  Then Thursday night a virtual stranger to our family, with assistance from a passel of former students, hosted an event raised a ton of money for us at Egan’s Pub, in Belleville.  They donated 15% of their receipts to my family for all their sales this weekend, on top of the profits from the basket raffles/silent auctions that were held.  Then, tonight, Angels of Hope brought a whole car-load of presents to the girls.

What does a person even say to all of that.  It seems thank you is so pitifully insufficient, but then again, that’s not the reason they are doing this, that you are doing things….  

What does all this mean to us?  

We don’t have to worry, about the extra things.  I know that I will run out of vacation days on January 9th, and the money that is coming in will dramatically help supplement us until I can return to work….whenever that is.  I think we can all agree that the 8th graders don’t need to see a 42 year old dude weeping whilest teaching about the emerging antebellum emancipation movements, and how that helped precipitate the American Civil War.  That’s only going to be scary.

I'll be able to not work, to not worry about the money for as long as we need to.  To take care of our family, to take care of the details, and not have to stress about that side of things.  Oh, don't get me wrong, we've got plenty of stress...just not that stuff....and that's the power of the gift of weeks like these....of people like you. To lift the stress off of us that we have due to all this, at least the stuff that you can.

So, yeah.  I’m not feeling the spirit of writing today, at least like I normally do, but wanted to check in and say thank you, from the deepest depths our hearts, for all the generosity that people have shown to us.