Monday, April 15, 2013

Overdue meltdown

It's been a long day, truth be told its been a long few months. I had to take a leave of absence from the blogging world to get myself straightened out a bit. After losing my mom all I could feel was an overwhelming sadness, so when we got the news last month that Brinley's spinal fluid was clear of cancer cells, I literally felt nothing. I wasn't sad, or happy for that matter, I was absolutely exhausted, mentally and emotionally spent. After a 3 week visit from my dad I was able to heal a little, just enough to collect myself and move forward. I still miss mom though, there is not a single day that doesn't go by where I don't wish I could hear her voice, or speak to her, and in the mean time, I'm trying to fill that void with my own voice of reason; which brings forth the saying, "what would momma say?" I imagine this will go on for quite sometimes, so I'm adjusting...a woman in progress.

Last week Brinley broke her arm by falling off of the high part of the baseball bleachers, approximately 7-8ft, straight to the compact dirt below. After being examined, and x-ray'd the results were in and she had broken both bones in her arm...and she's lucky that is all that happened. So early this morning we were out the door embarking on our appointment journey for the day, orthopedic surgeon (no surgery needed), neurology, and oncology. Wait! why is Brinley seeing a neurologist? I'll get there...

During her last lumbar puncture, the doctors checked the pressure in her spine, normal pressure range for her is 10-15, and Brinley was 35. Because of the frequent sharp pains in her head, her oncologist thought that maybe it would be good to have her checked over with a neurologist.

We check into neurology, and had to wait a little bit because I'm always running early. Brinley hates to wait, and she's been up since 6am, and knows that she's about to go into two more appointments where she will be poked, prodded, and asked to do a series of tests. After being called back into the examination room, we go over the questions on the forms I filled out, the nurse does the typical vitals, weight, temperature check on Brinley, and then she hits the wall. She's DONE. This is the second time Brinley has lost her cool about being at the doctors. The first time was when she was first diagnosed, and we had just left the hospital after being stuck for 2 weeks, we had one day at home, and then had to head back the following day for chemo. She wasn't having any of it that day, and she wasn't going to deal with it today either. She sobbed, begged and pleaded for me to take her home, "no more doctors, I'm just so tired of this". I've always bragged about what a trooper she's been through treatment, the countless appointments, needles, tests, she's been amazing through the whole 2 and a half years. Her meltdown point is LONG over due. Eventually she curls up in my lap and sobs while I brush the tear soaked hair away from her face. My baby is exhausted too. After calming the storm, we proceed with the appointment and her neurologist wants a high volume lumbar puncture done on Brinley, ASAP. She's not convinced that one negative test rules out CNS relapse, the more fluid they test the better chance they have at finding something, or confirming that nothing is there. If the test come back negative, Brinley will begin medication for pseudotumor cerebri. The medication will not prevent her headaches, but it will stop her from going blind. Because the brain thinks there is a tumor (hence pseudo-tumor) she runs the risk of her optic nerve failing. So the new medication will help adjust the pressure, therefore giving the optic nerve a break. This medication will have to be taken daily, for the rest of her life (more than likely). The condition is a side effect to leukemia, and/or the use to steroids (which she's had).

So in short, she will either relapse, or run the risk of being blind.

Thank goodness for modern medicine.

We were all ready and set for tomorrow morning, but because they are doing a high volume test they aren't really prepared yet. So next week Brinley will go in for another lumbar puncture. And so we wait...

what else is new?


  1. Poor girl just can't catch a break! Thank goodness she has such an awesome mom for support. Always by her side, always calm the storm. I think there is a lot of your mother in you - the best things you say about her are the things I see in you time and again.

    Love you lady

  2. Oh Morgan, does it never stop? So sorry to hear the latest news, I really am
    at a loss for words today. I think of your Mom and you and your strength
    and once again it is "game face on". Hurry up and wait, my fingers are
    crossed for next week. Good to hear the broken arm didn't require surgery
    and needs a cast only. A normal childhood calamity, whatever "normal" is!!
    Love and hugs...