Good News!

Gary's scan results were good, even great! Instead of growth there has actually been some shrinkage.

And Cassie performed in her high school choir's broadway show, sang a solo and was really good! Mom and I were bawling like babies. Everyone applauded long and loud and she's still riding high on that one!

Thought I'd write something POSITIVE for once...it's good to have something positive to write.

Happy Thanksgiving!

School Days

The school year started off so well. Cassie started taking Wellbutrin just prior to the beginning of school and it seemed like a wonder drug. She responded remarkably well and we were on cloud nine, thinking that maybe we'd found the magic pill that would solve all Cassie's problems. Yea, right.

Cassie's therapist suggested she was 'ramping up' and we pooh-poohed that because we were just so glad to not have the Tazmanian Devil in our house. At this point we figured mania would seem like paradise compared to despair. Maybe unrelated, but within weeks she had a seizure at school. What a scene that was and it was all downhill from there. While the ER docs couldn't agree that it was actually a seizure, I believe it was and after some research we thought maybe the Wellbutrin, our wonder drug, could have been the culprit. We were between a rock and a hard place though, because since she had been doing so well she was scheduled to go to a choir camp that weekend and I had decided she was well enough that I could fly out to see Gary and Missy in Idaho,expecting she would be happily ensconsed at camp most of the nights I was gone.

I'd gambled on both counts that the chapter of wellness would continue and I lost. Not knowing she would no longer respond favorably to the Wellbutrin, we kept her on it out of fear of how she would handle the upcoming stressors without the very chemical we believed was allowing us to take those risks. I went to Idaho, Cassie went to camp, and all hell broke loose. My phone started ringing at church on Sunday, right after Cassie finished camp and it was one of those episodes I'd like to forget. I finished my visit with G & M with dread in my heart, imagining what I'd come home to.

Gary went into his study and didn't emerge for weeks. He started having new symptoms we'd never seen before. Cassie's depression swallowed her up until she couldn't get out of bed in the morning. She was/is terrified of the voices, which by this time were almost continually screaming. We temporarily put her on a delayed school schedule, which meant that she missed math every day. A few days she didn't go to school at all. I gathered every ounce of imagination and bribery skill I possessed to get her to school every day. It was exhausting. Then she'd come home from school completely freaked out from having been at school.

Most worrisome was that she was taking her bad behavior outside our home, which had never been a problem up til now. Gary received a phone call from the dad of Cassie's Okemos 'enemy'. Cassie had been texting some pretty terrible things to her. The same day I found out that she'd been hanging around with the school thugs after lunch. That explained the language she'd been spewing lately and part of the source of her unhappiness. She'd also treated one of the young women at church very badly at a dance, sending this poor girl home in tears. I was not exactly surprised by this new development, knowing how she can be at home. I guess you could say it was a resigned feeling of 'oh crap, what fresh hell are we going to have to deal with now??' Each offense called for an explanation to the offended party and some form of atonement by Cassie and then hope for understanding. And, of course, trying to reason with and apply appropriate discipline to an unreasonable, unbalanced child.

Then, suddenly, the switch flipped again and she started getting better. But on Halloween afternoon she had another seizure and this time I was there to witness it. The first time the hospital hadn't provided me with information and I, so convinced it was a one-time occurrence, didn't bother to educate myself on seizures. As she lay on her back, seemingly not breathing, it didn't occur to me to turn her on her side. Fortunately, it did occur to Gary, and as he did that, it was evident she was choking on some fluid. Again, ambulance to the ER. Followed by EEG (normal) and neurology (normal, although some weakness on the left side).

This time, we knew we needed to withdraw the Wellbutrin. It certainly wasn't helping and was quite possibly causing the seizures. What followed the withdrawal was another trip to the pit of despair and even her professional helpers noticed she was worse than normal. I'm not sure if medication withdrawal was the source of this downturn, or maybe the fact that it also coincided with the time change (daylight savings).

I have to commend the school for helping and not exacerbating the problems we've been having. Frankly, I can't imagine Okemos being anywhere near as accomodating or creative or even receptive to suggestions as Stockbridge has been. Hostility was the status quo there. I find the atmosphere so much more relaxed and friendly and the staff is just exemplary. Cassie's teacher is amenable to any changes we need to make and open to any and all suggestions.

I knew the thing she needed most of all was some positive peer interaction and an English teacher who facilitates yearbook suggested Cassie join. It's a class in the middle of the day comprised of mostly 11th and 12th graders. While we're only in the second week of this change, Cassie has expressed to me she 'loves it'. A ray of hope.

Last week, about Friday or so, happy mode started again and I'm grateful for that. She was so great, I couldn't stop hugging her and I said, 'Cassie I wish you could be like this all the time!' She replied, 'I know Mom, but I can't because of my disease.' Insight is a good thing. We're starting to rate days 1 to 5 according to her mood. 1 being as good as it gets and 5 being hospitalized. Our thinking is that it might help our stress level to be able to predict some of this stuff. That is, if it's following a pattern. At least it gives us some illusion of control!

Today I'm at Ohio State University Cancer Center with Gary, awaiting test results. He's convinced he's getting bad news. I sure hope not. I really don't need more fodder for my blog.

The Summer of Her Discontent

For me, heaven is a hammock and a book by the lake. In so many ways, this has been the best summer I remember since I was a kid. Waking up almost every day to sunshine, water, and the prospect of a gloriously unmapped day is my idea of SUMMER! We've swam, boated, antiqued, enjoyed campfires, shared many days with friends and family, almost to our content. It's just downright depressing to think of going back to real life.

Cassie, on the other hand, has not fared so well this summer. Her depression rarely lifts and her mind terrifies her often, sometimes constantly. She spends most of her time playing a handheld video game or watching movies. Even on the boat, the game comes along. We carry on despite her constant naysaying and sour demeanor and it saddens me that she cannot find joy in this idyllic life we try to give her.

The thing she craves most, friends, I can't give her. The boy I was so excited about lasted all of, maybe, 2 or 3 weeks. Cassie was much more enamored with him that he with her and she quickly wore out her welcome. It didn't help that the boy prefers the company of video games more than people. We brought out 2 of her friends for a couple days in July to attend an anime conference and that went very well. Cassie acted so normal and had a great time with them. I think the girls had a good time, as well, it's just been hard to pin them down on when they can come back.

We just had a flurry of activity starting July 31, when the fam rented the big house on connecting Hemlock Lake. That same day, Gary, Missy, and Matt flew in from Idaho. It was a frenzied, fun time for most of us, but pretty overwhelming for Cassie. The fam stayed a week, and Missy and Matt were here an additional week. Gary stays until 9/5. The kids were/are terrific with Cassie most of the time. They took her to Cedar Point and were delighted to report how 'normal' she was. She rode all the roller coasters and RAN from ride to ride, keeping up with them all the way.

Now school is looming large in her mind and it's really freaking her out. Yesterday, she was terrified, in tears and couldn't get out of the house, so I ended up giving her geodon, xanax, and the beta blocker (name I never remember) to get her through the day.

The meds. *sigh* I really don't know how much they help, other than making her too tired to fight with us. It doesn't seem that a person on that much medication should be so symptomatic. She's on a maximum dose of geodon, plus celexa, and ativan. She's been through all the newer antipsychotics, so we're left with the typicals, which are notorious for their side effects. Her therapy seems to be circular because she goes in with her complaints, is given advice on how to deal with these things, and she routinely refuses to help herself.

Reading back, I see that she's been miserable for many months. It's agonizing to have a child so unhappy nearly all the time. In stages, I'm learning to extricate myself and lead as much of a separate existence as possible. Lately it's occurred to me (isn't that part of s song...) that I must develop more outside interests and work more often to make myself less available (less of a punching bag) to Cassie. Meanwhile, we continue to revolve around Planet Cassie and hope for any ray of sunshine to brighten her dark days.

Summer's Looking Up!

We've had a fairly rocky spring. After med adjustments, missed time at school, extra appointments, phone calls and TONS of patience, we seem to have gotten through the worst of it. And then, out of the blue a blessing appeared disguised as a geeky kid wearing a Star Wars shirt.

We've been spending as much time as possible at our cottage and it wasn't turning out to be nearly as fun and exciting as I'd hoped. EVERY weekend it rained and we found ourselves huddled around the TV in a place where we really couldn't escape from each other, it being about 1/3 the size of our home. For some reason we felt compelled to be there, even knowing the weather would keep us indoors. I started to question why we'd even bought the place to begin with.

Finally, the weather started breaking and neighbors started appearing. A few weeks after we put our boat in the water, it stopped raining long enough that we were excited to tour the lake, but then one mishap after another foiled that plan. A neighbor kindly helped Gary out with the boat and offered to take us on a ride in his pontoon. We gladly accepted.

Gary, Cassie and I spent an hour or so with our neighbor and his 13 year old son. Cassie, who had just taken her meds maybe 30 minutes prior to the invitation, was growing increasingly groggy and by the end of our trip was practically laying down on the seat. I so hoped she would talk to this boy, and figured she'd made a pretty bad first impression. "Don't mind my daughter, she's medicated" didn't seem like a proper introduction.

This weekend, this GLORIOUS, SUNNY weekend, the minute Cassie and I arrived, Gary, who had come earlier, was at our dock talking with the boy and his Grandma who had also just arrived. He had the great idea of asking the kid if he wanted to go tubing with us. He's nuts about tubing, so he came along. Cassie and he tubed together and right away started trying to knock each other off their tubes. A friendship had begun.

He found out she likes video games almost as much as he does, and that was just the clincher; he'd never known a girl who liked video games, and apparently he has mostly girl 'friends'. They spent the rest of the long weekend swimming, boating, talking, beating each other up, playing video games (much to his grandma's consternation) and just having a blast.

Anyone who parents a kid who doesn't have friends knows how painful it is to live with. Maybe particularly only children (even though Cassie isn't an only child, her siblings being grown means she lives her life most times as an only) because the loneliness can be so intense. Parents cannot take the place of peers, and should not even try. Cassie's social history has been fraught with difficulties. She'd make friends for short periods of time, during which she'd experience the high of having a new friend, followed by the low of the loss of that friend, typically not knowing why they weren't friends anymore. Perception is everything, so, while we'd try to coach Cassie through tough social situations, we could never be sure of the accuracy of her perceptions, so our advice may or may not apply.

This year, though, seems to have been a turning point in Cassie's social life. She is so desirous of having social interaction with her peers that she has really worked hard at being a good friend and has made great strides. She's maintained several friendships throughout the year, not all of them with easygoing personalities. She understands, finally, that friendship is about give and take and, though at times now she errs more on the give side than the take (as opposed to the reverse, which is what lost her most of her previous friendships), she's learning.

The most wonderful and amazing thing to me, especially in watching this latest development with Star Wars boy, is how accepting people, even 13 year-olds, can be. He just sees her as a peer, with oddities, just like him. We've had to warn Cassie against full disclosure of her illness and past experiences with new people, because those things are hard to understand and carry a great deal of stigma. Telling a new friend you hear voices probably isn't going to increase your social circle quickly. I've hated to temper Cassie that way, as she is as close to being without guile as anyone I've ever known, but this is the world we live in. If she had diabetes or asthma it would be no big deal. Maybe someday the world will view mental illness without fear, but that day hasn't yet arrived.

So, summer is definitely looking up! That is, as long as she doesn't try to turn this new friendship into a romance, which is a possibility we've warned her about. Maybe I'm jumping the gun here and one weekend does not a friendship make, but the thought of Cassie happily engaged with someone other than ME all summer is more than I could have asked for, and I'm ever so hopeful. I love being the Kool Aid mom, but hate being the center of my kids' existence. Paint me in Cassie's background, and let her friends take center stage.

Is this normal?

I was having a nice phone conversation with my son Gary when Cassie started calling and I had to hang up. By way of explanation, here's the email I wrote him:

So, when I was talking to you Cassie called screaming into the phone that dad was scaring her. Then the phone went dead. I called back and dad answered, calm as a summer day saying she didn't want to go to her tutor, etc and all the while Cassie is screaming bloody murder in the background. I tell him she can't go like that, to call the tutor and tell her we'll pay her for her time next week. He said fine, so she gets her way and hangs up. After a bit I call back and get a little more of the story and tell him I'll be there in 15 minutes. Cassie greets me outside with red, tear stained face and tells me dad's laying on the floor. I said, well, did you kill him? I start looking for him and he's sprawled out on the floor near one of the flowered chairs. He says he had a carcinoid crisis* and passed out at some point but can't remember. So, I'm just wondering...does this sound normal? JK

Love, Mom


*My husband Gary has carcinoid cancer.

Update

Post wedding update:
Cassie grew to hate Missy during the wedding. Missy was a beautiful bride which was enough to invoke that feeling. She won't speak to her AT ALL. She threatened to rip up her wedding dress the night before the wedding, and to shave Missy's head while she was sleeping, dye it blue, and call her Captain Planet. Creative, yes? I think a visit from Missy and Matt where Missy isn't the focus and she can have some good experiences with Cassie will go a long way toward curing this. Anyway, it was a stressful season that lasted from November to January and Cassie, overall, fared well.

Winter has been loooooonnnnnng. Last month we bought a cottage on a lake and have been spending our weekends remodeling it and dreaming of summer. The past 2 weekends we've been reminded of the dangers of boredom. While we are hard at work, Cassie lays in bed playing games/watching movies/surfing the internet. And she complains. There's no getting her to join in. She paints for 5 minutes and she's done. We explain to her the reason she's so unhappy is because she's not doing anything, but it doesn't register enough to banish the inertia she has toward anything that could possibly be labeled 'work'. Not so different from most teenagers, I suppose, but, unlike most normal kids, there's no MAKING her do ANYTHING. I gave up that notion long ago.

Fortunately, she decided this weekend she was going to be my 'antiquing buddy'. She wants to collect Precious Moments figurines. That's great, it gives us something to bribe her with and for her to look forward to. Don't even try to follow this line of thinking if you don't have a mentally ill child. It clearly sounds permissive and unhealthy. But we do what we need to to survive.

We are finally addressing the weight issue. Putting on almost 100 pounds in an 18 month period has put her at risk for all kinds of maladies. So her psychiatrist has prescribed Zonisamide 25 mg. twice a day. She's lost 3 pounds. I intend to get on the wagon so she will follow. We have found her to be less aggressive when it comes to food, but still inclined to overeat. It won't be easy, for sure (as I well know!)

School has gone very well. We had one upset with PE...the ongoing complaints about running. Agreeing that a kid her size must have a lot of difficulty running, we communicated with the PE teacher over and over again about not making her run. We had a bit of a blow up when, after a dr. appt. where he acted appalled that they were making her do this level of physical activity and suggested we call an IEP, we shot off an email that resulted in a school meeting with PE teacher, classroom teacher, and principal. It was overkill, but it seems we all understand now that Cassie doesn't have to RUN!! This incident also served to remind us that Cassie's view of events are often very different from reality ("the teacher said if we cut a corner when we ran laps, the whole class would have to run more. I cut a corner and the class had to run more laps." Turned out to be untrue, but was her perception, nonetheless.) We want to advocate for her, but so often end up looking like overprotective teacher bashing parents. NOTE TO SELF: take Cassie's concerns to the source before forming an opinion.