Sunday, November 9, 2014

They are helpful for walking, but you and Daddy can carry me.

Greetings All,

I’ve spent a lot of time thinking about the blog over the last two weeks, and heard a lot of voices.

Here’s a summary of the main two sides, both of which have very valid points:
  • Quit worrying about the blog and be present with your daughter.
  • Keep writing whatever you feel called to write, it’s therapeutic for you, and we’ll decide what is too much.
I think I’m leaning quite heavily on the 2nd set of voices, but I will say that I’m not going to actively worry about the affect of what I have written here on the people who choose to read it.  In the end, as someone pointed out to me in a FB private message, no one is encountering this stuff accidentally, they have to click through to the blog to see it.

So, the palliative care plan that they laid out is working, and seems to be doing so rather quickly, which we really like.  Amie is much much much more comfortable today than she was two weeks ago, when she was so fragile and in so much more pain.

We talked to Marcia, Amie’s Nurse Practitioner who works closely with Dr. Robertson, and we talked extensively about the plans, and here’s the gist of what I learned:  there’s the brain cancer locations and the cancer in her spine.  The cancer in the spine is going to cause massive discomfort, as it is affecting the spinal column, the nerve coverings, and creating structures that are pressing against nerves.  This is pure pain, and causes radiating nerve pain.  The palliative radiation is to knock this down as much as possible.

Then there’s the brain cancer sites, which are also growing.  The radiation should slow this down and knock it around a bit…but it’s already shown itself to survive through the radiation, so there’s no assumption that it will be taken out.  

In short, the brain cancer will kill her, but the spine cancer will make her horrifically uncomfortable. The cancer is the same type in both areas, to be specific, though.

An Amie story from the last two weeks:

Amie's legs don't really work much anymore.  She has some limited strength to lift up her butt when you're changing her diaper, and can sit unassisted again (thank you steroids and radiation!), but there's no walking.

Shelley asked her if it bothered her that she can't use her legs much anymore.  She responded with “It ok, I don’t need them much” and followed up with “They are helpful for walking, but you and Daddy can carry me.”

How can you not melt at that level of.....kindness and lack of worry?

Another:

We've moved Amie into our bedroom, with a mattress on the floor next to Shelley's side of the bed.  She normally sleeps in her bedroom with Anya, which is about 20 feet away, and harder to hear her.  She really has to belt it out for us to hear her call for us.  

The steroids are making her really eat.  Like 2-3x as much as she normally would, and at all times of the day.  Usually around 4a-5a, we'll hear this little voice chime out...  "Mumma...can I have a clementine?"  So cute.  So early in the morning.  Of course one of us gets up immediately and gives it to her, because it's the drugs talking, not the child.  She'll go back to sleep after the clementine (...or the clementine and a bagel...or the clementine, and a bagel, and a donut).

Any idea of a proper diet is totally gone, btw.  Yes, we're feeding her cinnamon and sugar donuts, and bagels, and toast, and Mini Tater-Tots (these are called hash browns, btw), and buckets of Fruit Punch gatorade.  Her taste buds are shot, but she's hungry as heck.  So crap food it is!

For anyone who wants to watch a LOT of video of Amie and Anya interacting, here is the link to the YouTube channel where I'm uploading our archive of videos.  It's just our desire to take chunks of these weeks and make sure we have really solid memories for years to come.  

We met with the hospice intake nurse on Friday, and the regular hospice nurse is coming for our first weekly visit tomorrow.  Plans are moving to make sure that everything that needs to be in place when the time comes, will be in place.

....I've even got plans in place to buy my first suit since I applied for a job at WNEM in 1998, explicitly to impress Ms. Jennifer Hogan.  :)  Thanks Sarah, btw, for agreeing to go suit shopping with me.  You've got far better taste than I.

One more thing before I check out...thanks for all the incredibly well-thought out responses to my last blog, both on the idea of what is "strong", and what I should do with the blog.  I really appreciated the responses, and they are a testament to the level of respect and consideration y'all give my words.  I really appreciate the time you spent sending them to me....especially the ones from former students, even with the swear words included.  :)