October 16 - part 1

If you only want to laugh - bypass this update and wait for part 2, later on today. If you want an update about Avalon, my cancer child, then read on!

I won't lie or sugarcoat it. It was a long, exhausting, terrifying few days around here. After some rather heated discussions with a neuro-surgery nurse practitioner yesterday, we were released from the hospital. We had to promise to follow up with Avalon's neuro-opthalmologist - and she was kind enough to squeeze us in. (4 hour wait at her office - my kiddos deserve Nobel Peace Prizes)

Here is what I posted to my online ALL-kids group (Acute Lymphoblastic Leukemia). I'll try to explain any shorthand I used. The group are all medical families - so I can "cheat" when I explain things to them.
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Thank you, thank you, THANK YOU!!!

First, thank you from the bottom of my exhausted, terrified heart for all of your support. I really do adore all of you. I knew, come what may - I had help.

Second, thank you for your positive, healing thoughts. We had the best possible of all outcomes. We are currently - *At HOME!*

After being released (long story, won't bore you) - we had to go see Avalon's neuro-opthalmologist. Avalon did, indeed, have shunt failure. She was, in the middle of catastrophic shunt failure when we reached the hospital. The neuro-optho verified that when IV morphine has no sedative effect - it means the body has "used" all of it for pain control. Here's the amazing thing - Avalon "cleared" the shunt blockage, on her own.

Apparantly, the protein in her brain must have solidified into "sand". The doc explained - its like "sleepies" you get in your eyes. Those are just hunks of protein. These same grains can form inside CSF (Cerebral Spinal Fluid), if circumstances are right (actually, when they're horribly wrong). The grain can come from really high CSF protein, or as a result of a viral infection. Avalon had a runny nose last week. Her auto-immune disorder makes her as immuno-compromised as if she were still on heavy chemo. The simple runny nose, led her body to producing extra CSF protein, and it all added together to form these granules. The grains then clogged one or more holes in the shunt system. Clogging the holes, caused shunt failure - and incredible pressure built up in her brain. So high - it was causing autonomic failure(the Heart Rate, Respiration abnormalities)

The reason her pupils were different sizes? She blew one up! Yes, you read that right. On the ultrasounds of her optic nerves that we took today, it showed that she has a huge hole in the covering of the optic nerve - directly behind her left eye. The pressure got so high - it actually formed a bubble behind her eye - that exploded! The explosion (which must have happened on the way to ER) relieved some pressure - and must have moved the grains ofprotein enough to get things moving again. The HR/resp/fever/white count problems that we saw - were all fall-out from the blockage. Had she not cleared, they would have escalated - and she would have required shunt revision (new shunt-brain surgery) , with time served in PICU (Pediatric Intensive Care Unit). Avalon's optic nerves were still horribly dilated today - with lots of peripheral vision loss. (normal diameter 10-12, Avalon's were both over 17) There is no doubt the pressure must have been astronomical - past history of optic nerve diameters, shows it had to be more than 4 times normal (normal adult intercranial pressure is 100-120. The last time Avalon had one optic nerve with a diameter of 17 - her pressure was greater than the measuring device which tops out at 420).

When I asked the neuro-optho if I got my miracle...she said, "You bet! And then some."

As of Monday morning, Avalon's WBC (White Blood Cell count) was down to 9.0 (from 17). Her HR (Heart Rate) stabilized to107, and BP (Blood Pressure) normalized to 89/58. Best of all, she started talking! In fact, she didn't quit talking/squealing/bouncing all day. She had been listless, glassy-eyed, and very, very quiet. As with previous times we've quickly lowered her pressure, it kind of leaves her hyper. We've done LP's (lumbar punctures) to check her Intercranial pressure - and to draw off fluid to reduce the pressure. When we've done that - it lowers her pressure quickly. When her brain gets to expand to normal again, it reacts by making her act like she's taken baby "speed". Yesterday, the insanity was very, VERY welcome.

The giant downside to all of this, it can, and most probably will...happen again. Until we get the protein taken care of - she will be at risk of shunt malfunction with every cold she gets. We have to revert back to induction/DI type of germophobia (Induction/DI are very intese phases of chemo - the kids have virtually no immune systems). The slightest virus - can truly kill her. We got LUCKY. Next time, it might be brain surgery, or worse. That kind of pressure is lethal...quickly. Its hard knowing that its lurking, but we figure we can learn to deal. We learned to live with cancer! This is just shades of the same. Avoid germs at all costs, watch her behaviors, listen to what she tells us - respond as quickly as possible. The good news is, next time - I think I'll be able to remove the relapse terror from the table. The WBC were simply responding to her pain and brain malfunction. Nothing more. Whew.

We have clinic this week, so we'll be able to monitor blood values. We'll see the neuro-surgeon within a week or so, and are still waiting to hear from Physical Medicine and Rheumatology (can take up to 6 mo). But, at least we're on the right track. We got our Miracle last night - and I credit a huge part of it to all of you. You all added your energy to Avalon's and helped her fight so hard she popped! There's something to be said for that.

(this last part was for new people on our ALL-list. However, its pertinent to any parent, anyone helping a family member deal with medical issues) One last note. I had rather heated, less-than-friendly discussions with a neuro-surgery nurse practitioner today. I've learned something about myself, that I hope I can empower the newbies with. I no longer give one fig or holler about what some medico thinks about me. I don't care if they don't like me. I don't care if I annoy them. I don't mind calling someone out on a mistake - they need to know when they are wrong, and the consequences their actions can have. I don't have to be nice/friendly/accomodating/a doormat. I am always polite, always patient. HOWEVER, I will no longer tolerate people who don't read charts, don't do what they promise, and don't listen. My only job is to advocate for my child. When you are new at this, its easy to be pushed around. I'm not advocating rudeness or bossiness. I'm simply saying, be empowered to embrace your "Mother Bear" (or Papa Bear - I know we have new dads too) Its OK to stand your ground. Its highly recommended to be informed, aware, and involved. NO ONE will look out for your child like you will. 3 years ago - I may have stayed quiet and my daughter would have been harmed. Now, I made sure I told the NP she was very wrong - and needed to read the chart, the ID bracelet, and here's-a-thought, LISTEN to the parents. I want you to know what I wish someone had told me. Its OK to stand up for your child.

Sorry so long. Its hard to explain Avalon's crazy stuff. Again, I LOVE AND RESPECT my wonderful "List Family". You mean the world to me. Thanks to each of you - and may I someday be able to help you find your miracle.
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Similarly, I LOVE AND RESPECT my blog family. I apologize for having to go "all serious" on you the past week. While I am normally pretty light-hearted (OK, a certifiable nut-job), I am also committed to being honest here. Life isn't all pretty and rosey for anyone. Life is about learning to hurdle obstacles, dodge bullets, and still figure out how to enjoy your blessings. If I'm honest with you - hopefully, I can help you honestly appreciate your own blessings.

Thank you for taking time to read my rantings and care about my little person. I am more grateful than words can ever say to have her still. I KNOW that her life is a gift - with no guarantees. I appreciate your help in holding onto my special present.

- Alicia Hall - losing weight, and my mind, to raise awareness of Pediatric Cancer www.crazycancermom.com

Stop by and drop me a note! alicia@crazycancermom.com or feel free to comment here. All are welcome!


Alicia - Losing weight, and my mind, raising awareness for cancer kids atwww.crazycancermom.com - mom to Avalon(4) dx 10-9-04/OT 12-28-06 (YAY!)dx pseudo-tumor cerebri 6-06, V-P shunt 1-07, Aurora (12), Ambrosia (6), andAnam ( 1)