Sunday, October 14, 2007

October 14, 2007

Short and sweet, totally unlike my normal ranting. I did conquer my cancer-woes - was feeling up to regaling you with my dietary misfortunes...

Then, my cancer child, Avalon was admitted yesterday, with "suspected shunt failure". Avalon has brain damage from chemo - resulting in pseudo-tumor cerebri (or intercranial hypertension). She has a Ventricular-Peritoneal shunt (VP shunt) in her brain that empties excess fluid from the brain to the abdomen. She currently has an autoimmune disorder that has yet to be completely identified. The auto-immune disorder has led to protein in her Central Spinal Fluid (CSF). Protein in CSF makes the CSF thick - like sludge. (gelatin is protein - think jello) Thick CSF can clog a shunt - causing it to clog.

When Avalon was admitted yesterday, she presentedwith an excrutiating headache, pupils dilated to different sizes, low-grade fever and pain, pain, pain. Gives you any idea, at 1:00 am they gave her IV morphine...and she was still wide awake at 3:30 am. The doc said that indicated the pain was so bad, it "ate" the morphine - not making her sleepy at all. Great.

Shunt study CT scan showed normal function. X rays showed the setting to be OK. WBC came back at 17.5... (normal values are under 15) Yes, I'm getting worried. Today, HR (heart rate)was all over the charts. She's on heart monitors, etc - and making everyone scratch their heads. Oxygen sat has been fine, but she's been constantly setting off alarms for Low/High respirations and High heart rates. HR, will go from105 to 150 to 115 in a few minutes - all while she's perfectly still. She'll be laying watching TV, and she'll be panting like a dog (resp 39+), then suddenly start with long, slow breaths. Its mind-blowing. No question, something is past wonky. She's admitted under Neuro-surgery, but Heme-Onc is considered "consulting" and Neuro is doing anything they request. At least they're all playing nicely together.

If you follow this blog - please think of Avalon tomorrow. We can use any and all positive thoughts. She's on the "add-on" list for a GA-LP (General Anesthesia - Lumbar Puncture (spinal tap) ). They're drawing fluid for protein testing (see how high its gotten), looking for infection, looking for (gulp) leukemia. I'm in no-man's land. One hand - could be shunt failure - meaning brain surgery to replace it - only to face the same issue - until we get the CSF protein under control. Other hand...CNS relapse. What on earth do I hope for? I hope to get through tomorrow.

I HATE cancer.

I LOVE all of you.

Forgive my silence for the next few days. This blog, my mission, and all of you are vitally important to us. But, being 100% mommy to a very, VERY sad little girl is paramount right now. We do not own a laptop - only an ancient desktop PC. Those are a little difficult to transport to and from the hospital when hubby and I do the "changing of the guard". So, my computer time is limited.

Thank you all for understanding. I'll find my humor and assault you with it soon.

- Alicia Hall - the Crazy Cancer Mom - losing weight, and my mind, raising awareness for Childhood Cancer kids. www.crazycancermom.com

*Remember, you can always email me at alicia@crazycancermom.com or comment on this blog.

2 comments:

M said...

GO GIRL! What a great idea! I came on over from ALL-KIDS and will return again to check on your weight loss.Good Luck!

Anonymous said...

Oh, sweetie,

I'm sorry to hear about Avalon's latest travails in the hospital. I hope it comes out as something simple for her. I will keep you all in my thoughts and prayers.

Do you need anything?

Susan