Weekends are for wondering: an update on cancer & Amy's seizures

amy's eyelashes

I remember deciding to name her after my dear friend. And my favorite great-aunt. Hard-working peace. That's what Amelia Irene means. I had no idea then how God would bring her name to fruition. She has been my hard-working peace, the peace that is striven for and won only with battle scars and broken hearts.

After a break from grand mal seizures during the day since August - unprecedented, freeing, believing, hopeful season! - and no nocturnal (during sleep) seizures since late October, Amy's neurologist decided to try weaning her off one of her anti-seizure medications (Depakote). Her epilepsy monitoring in the hospital at Mayo in October had shown very little seizure activity (only during sleep) and what was seen wasn't grand mal, so it seemed like the appropriate move. She had gone down by three pills per day by mid-January. We started noticing more partial seizure activity and some behavior oddities we hadn't seen since summer of 2010. On January 14, she had her first grand mal seizure in the day since August. And again the next day, and the next. Then she started having them at bedtime again. We immediately went up (even though we couldn't get ahold of the neurologist by phone over the weekend) on her Depakote. But she kept seizing.

On Thursday the 20th, she had her closest brush with death since last July, when she had a seizure that lasted 9 minutes and she choked on her vomit. She has been a pacifier and bottle addict, and the neurologist actually thinks the constant sucking might be a way of coping with seizure activity in her brain. It is really hard to see your 4 1/2 year old with a Nuk constantly, treat the chapped chin everyday, and weather the withering glances of strangers when she begs for it in public. But, it seems to help. So there is no way I am taking it away at this time. She often asks for a Nuk when she is stuck in a "partial" (see description here). She did so on the 20th, and I gave her one, an old latex one she's had from late infancy and recently rediscovered (I was keeping it for sentimental value, because it was her favorite as a baby and the familiar pink star just says "baby Amy" to me when I look at it). A few seconds later, she collapsed in a grand mal seizure, and I couldn't get the Nuk out of her mouth. She vomited out around the Nuk, and then made some weird sounds I hadn't heard before, so I used the handle of a butter knife to pry open her jaws and remove the Nuk. Only there was no nipple on it anymore. Her mouth stayed clamped shut, although she was obviously choking, so I levered further until I could get my fingers in. I got her mouth open enough to see the Nuk nipple floating in the back of her throat with some vomit, and hooked it out with my other hand.

In a few seconds, I went from, "Here we go, another seizure" to complete and total mom and nurse panic mode. What do I do when there is no handy blue code button on the wall to summon help with? When I have no readily available suction, oxygen, or cut-down tray to do an emergency tracheostomy? I had brief, panic-ridden visions of the EMT who taught us how to give someone an alternative airway through the cartilage in their neck using either a ball point pen or an IV start kit. I was able to get the nipple out, and she was fine. But it was seriously the most traumatic moments of my life-as-mom, which is why I haven't written about it until today.

After a frantic 2 days without allowing any Nuks (or bottles, unsupervised), I did some frantic online research.  At the recommendation of some parents whose adult children have Down syndrome and still have lots of oral stimulation needs, I purchased some old fashioned, one-piece, natural rubber pacifiers from Amazon that are reportedly more bite resistant. And boy-cotted any pacifier that has any visible damage to the nipple. She loves them, even more than her old Nuks, and they have the bonus of having a round handle that is very thick and okay for her to chew on when she feels like chewing instead of sucking.

she still loves to pinch the web of my hand

I realize if you don't have a child with special needs or brain development issues, this probably sounds crazy to you. And perhaps you are thinking I should exert a little more control and take away the Nuks and stop the chewing on things that aren't meant to be chewed on. All I can say is, I wouldn't have "gotten" it either, a year and a half ago. But I do now. This is something that is a deep need for her, and seems to help her maintain normal function at other times throughout the day. Without the chewing and sucking release, she is reduced to a sobbing baby-child who simply cannot focus on anything beyond the need that is not being met.

So, the long and short of it: if your child has epilepsy and uses Nuks, think about converting to the bite-resistant kind. And Amy is doing fine now. Only one more seizure since we got her meds back up to full strength.

new skin :: old skin. all the same. suffering skin.

People have also been asking frequently about the results of my annual radioactive iodine-131 whole body scan. I did write about it, but apparently not flamboyantly enough. Usually it's in the context of massive cheering because everything is negative or massive soul-searching because it is positive and I still have cancer and I feel like maybe this year I'll die from it. BUT. This year it was kind of neither. My scan was "clean" (no obvious metastatic cancer) but my labs were still positive (down from 3.5 last year to 0.9 this year) for cancer. At first, I assumed this meant my diet was working, and felt depressed because that means I have to stay on the strict no sugar/no starch/no over-the-counter medications (like ibuprofen, which sometimes I think is nectar from God in pill form).

I got a little more news when I visited my regular family doctor this week for help with my arthritis, which is not clearing up (I am on a course of strong anti-inflammatory medication to treat it, then steroids if that doesn't help). It appears that the injections I received to prepare my body for the radioactive scan did not work this year. My blood level was supposed to climb to at least 75 and only got to 11. In short, this means that my cancer was still suppressed when my blood was checked for cancer and I had the whole body scan. Which means that neither test is conclusive. And the fact that cancer was still present in my blood although the cancer was suppressed at the time is concerning. My doctor was going to speak to my endocrine oncologist about it and told me I might think about having the test repeated in June or July. I won't know for sure until March 14, when I see my endo-oncologist next. But that was extremely bad news. Not extremely bad in the sense that I'm dying or anything. Just extremely bad in the sense that the trial goes on...and on...and on. I won't be declared "cancer free" until 2013 or 2014, assuming my treatment and diet continues to suppress any more cancer growth. I will be "in remission" until 2018 or 2019, five years after I am "cancer free". Somehow that 7 or 8 year weight is just...oppressive. I can't even imagine my life - my kids will be 15, 13, 12 and 10. Weird. It is so strange to think of living with this for that long.

And so I plunge again into the cold water of disappointment. This season of "wait" lingers on. I buy books on emotional recovery and finding a way to praise and letting go of the life you think you should be living. I peak in on freedom on the blogs of this Christian and that who has found a place where doubting/trusting co-exist, or where loving and longing don't quite make the heart break.

And I sigh and just keep doing it: read, study, flail, pray, praise, repeat. The personal liturgy. Even in this. Even in this. (2018 isn't that long to wait, in view of eternity, right?)