Bravo, Apple, but I’m still a little conflicted…

This morning, all the talk on the news is around Tim Cook’s letter to customers posted on the Apple main page, stating they will not comply with a Federal judge’s order to provide the FBI with a “back-door” into iPhones (specifically, the iPhone 5c used by the San Bernadino shooters). If you haven’t read it, take a few minutes and read what he has to say, it’s really important. Don’t worry, I’ll wait. Seriously, go read it.

https://www.apple.com/customer-letter/

Now, I can see both sides of this argument, and I’m feeling genuinely conflicted at the moment. On one hand, bravo Mr. Cook, for standing up for us and our rights to privacy. Having followed the EFF for a while, I understand the importance of security in the digital playground we all inhabit these days. Apple has long stated it’s support of personal privacy, and essentially made the software, starting with iOS 8 I believe, with encryption that they themselves didn’t have the key to. They have agreed that what you have on your phone is your own business, and I think that’s a good stance for a company like Apple to have. How Tim describes how privacy and encryption on our phones can protect our own personal safety makes a lot of sense. They can’t just unlock or decrypt the phone on their own, they purposely put that firewall up between them and the data on the phone to safeguard that personal data. In this case, they would have to write specifically a new version of iOS without that encryption, and somehow force the phone to update to that software so it can be brute-force hacked into by the FBI to attempt to gather the data. Problem is, once that software is written? It exists and someone else will find a way to get it. It will leak, whether by hacker or someone inside who can be bought. Even if it gets out in an incomplete fashion, it gives hackers the tools to do what they’ve been trying to do for years. This is an important precedent to set, and I’m with Tim Cook and Apple on that.

Now the other side, where I’m personally conflicted at the moment. We’re talking about terrorism here. The shooter’s phone could have some incredibly valuable data on it, contacts, access to various account he used, access and information that would be the FBI and Homeland Security’s wet dream. They should have already been able to subpoena phone records, though, as there’s already precedence of getting that information from phone carriers in criminal investigates. They can get a lot more data into the shooter’s activities though, GPS and location data, maybe logins to Twitter or website accounts used to plan the attack, etc. Of course, they could get into the phone and find he wiped it before they did their act of terror. As well as he flew under the radar, I wouldn’t be surprised to find that they wiped the phone prior and there was no data left to retrieve. Where it would be wonderful for the FBI to get that additional information on the shooter, I don’t have confidence that they would really find anything of use. And again, this line still goes along with “if you crack one phone, you now have the blueprints to crack them all”, which is still scary as hell, so I’m not THAT conflicted on this one.

However, we come to the whole disobeying a Federal judge order, which I think is an interesting moral discussion. Where do we draw the line in society that it’s ok to disobey a Federal judge order? When Kim Davis disobeyed the order to issue same sex marriage, I personally felt that was wrong and she needed to do what was being asked of her. Many didn’t, and felt her disobedience was justified. Cliven Bundy disregards Federal Judge orders to pay grazing fees, among other things. Personally, I’m glad he’s locked up at the moment as I feel his brand of “patriotism” was leading to a violent conclusion that had nothing to do with respect for his country. Again, others felt differently and he’s been propped up by some as an example of government overreach. So why does Tim Cook get a pass to disobey a Federal judge’s order?

My answer is this. Kim Davis, while thinking she’s protecting her own rights to religious freedom, was infringing on others by not allowing them the same legal benefits and protections. Allowing them benefits of legal marriage (not the same as Christian marriage) does nothing to hurt or infringe on Kim Davis. Doesn’t impact her at all, but not allowing it impacts the same-sex couples attempting to get those rights. Cliven Bundy, while saying the land belongs to the people and he should be allowed to let his cattle graze for nothing because the land doesn’t belong to the government but the people, is also acting selfishly. If the land belongs to the people, then I own some of that and I don’t want him grazing and destroying the land either. I would want it to be controlled, so the land isn’t desiccated by cattle eating all the vegetation. He may think he’s protecting people from government overreach, but he’s only acting in his own self-interest and making a mockery of “patriotism” in the process.

Tim Cook, however, by refusing the Federal order is taking a bullet for all estimated 800 million users on iOS software (based on device sales over time) across the world. Because creating a back door into one device would put ALL of those users at risk if it were to be released into the wild, either accidentally or with malice. It would set a precedent for other countries with less regulations on privacy (think China and Russia first off) to force Apple into giving them information on people they think are dissidents. His refusal is seen by some as a noble protection of people, not just in America but around the world, and their innate rights to privacy. He’s actively protecting existing rights, and not attempting to restrict rights or say it only applies to him. Maybe that’s why we view his refusal as acceptable while the others not.

Of course, you see the Republican candidates already criticizing him for this move, sensing a way to put themselves in the spotlight on an issue gathering a lot of attention. At the time of writing this, I haven’t seen any comments from Clinton or Sanders, but the Republican candidates were quick to hop on with their soundbites. The criticisms are directly conflicting with their campaigns about personal liberty in a way, but I’m sure they haven’t thought the position all the way through in the rush to get political exposure. They are against a national database for gun ownership, but for the ability of the government to unlock any phone they want to and read all personal data? I am interested to hear what the Democratic candidates have to say, but it will likely be the polar opposite since we’re in campaign grind mode with everyone taking their shots.

Maybe I’m not so conflicted after all…

 

Insights to my little girl

I’ll start off saying this is going to be a difficult one to make it through. This was hard to write, so I’m sure it will be hard to read. But I need to get it off my chest tonight.

 

Amanda spends a lot of her time online at a site called Deviant Art, where she’s made friends with other kids her age, posting art (some of my favorites of hers I’ve included in this posting) and doing various role-play stories. We’ve discreetly monitored her on there for a while, making sure she was being safe and also watching as she tried on different aspects of her personality in the ongoing stories they would craft, getting some insights into how she perceives the world around her. Sometimes, her language gets a little stronger than I’d like (we don’t curse around the kids, but ho-boy, do they ever figure it out…), but she’s speaking appropriately to her friends in their language so it’s ok. She’s been working through her “demons” with her friends, mainly her tendency to meltdown and lash out at people without thinking about the consequences. Thankfully her friends seem to understand and, while difficult to deal with, they don’t seem to hold her episodes against her, which is nice. She understands her problems, and seems to be trying to get better with her friends’ help.

Tonight, however, I read a journal entry that spoke more specifically about what she’s gone through in the last 7 years than anything I’ve ever been able to get from her. It was enlightening, and heartbreaking.

I was checking her profile page like we do every week or so, looking at the art she puts up, reading some of the public comments and stories between her and her friends. Tonight, there was a journal entry called, “Story Time”, which is something I’ve seen some of her friends post when they describe a situation going on in their life in a 3rd person way and get help from others. Her story starts with a young girl with an optimistic but strange personality, ready to live life and rise to the challenges faced. Then, when she was 9, her mom had cancer and was “shipped off to the nearest hospital” (side note, Amanda was actually 7 when Teri was first diagnosed, so her timeline is a little skewed…but that’s ok, it’s honestly hard to remember sometimes this has been going on as long as it has been). She talks about her friends at school trying to help, but how hard it was for her to come home and mom wasn’t there. Mom got better, and life started to get back to normal, but then she moved and had to go to a new school where she was bullied and teased. Then mom’s cancer came back, and the girl was traumatized and angry knowing the doctors didn’t get rid of all of it. This goes on a bit, more troubles at school with friends, the cancer going dormant again but coming back 3 years later. She talks about finally discovering friends online, and how they changed her life and helped.

She goes on about a boy she met online who helped her soothe her fears, but then cheated on her, and then other troubles when that boy started dating her “sister”, a girl she was very close to (I use the term “dating” loosely, as they are all in different states so never have physical contact). She talks more about how she lashes out, unleashing her inner demons, and ends with a question, asking if she will ever be soothed or continue “her demonic rampages and reaping of souls” (she can be rather dramatic with her imagery).

We’ve dealt with Amanda’s demons for years. 2 years ago she would lash out violently at Teri and me with little provocation. There were a lot of scary times then, but we have been able to work through things and she seems to be on a better track now. She does slip from time to time, and still has self-harm tendencies where she’ll come home from school stressed out and literally looking like she was in a fight with a jaguar – arms, legs, and face scratched and bleeding from her behavior.

But this is the first time I’ve read anything about how she’s perceived and dealt with our ongoing battle with cancer. She won’t talk about it with me, though she’s talked with Teri a little about it over the years. And it breaks my heart to see her describe how much this fight has hurt her as well.

Cancer effects us all. Teri the most, as she’s the one fighting like hell and going through the physical sickness. It effects me as it’s hard to watch it progress, but stay strong for her and the rest of the family. I know it’s been hard on the kids, the prospect of losing their mom but not knowing when that day will come, if ever, but reading that gave me a window to Amanda that I hadn’t seen before. And I just want to hold her like I did when she was an infant so nothing in this world can ever hurt her.

A new year, and hopefully some progress

It’s been a long time since I update you all on what’s going on here. There have been all sorts of issues with Amanda at school, behavioral problems and acting out violently with some self harm. There are a lot of reasons, stress at home with Teri, stress at school, stress with her friends online, and she doesn’t deal with it in the most productive ways. We’re working on getting her some additional help, but the problem with that is that she doesn’t think she needs help with anything. Getting her to work with someone will be the big challenge there.

Drew has had some behavior issues lately as well, he acts out in some weird ways to get attention. The day before going back to school after winter break, he was stressed about going back to school and got in trouble for doing a few things we specifically asked him not to do. He took a bath in our bathroom that night, and used my beard trimmer to shave his head. Yep, he full on pulled a Brittany. It’s growing back ok, and he headed off any teasing by taking Teri’s advice and saying he was doing it to support cancer patients. Helping drew deal with stress in more productive ways is another goal this year.

Alex is doing pretty well overall, still a lot of challenges around communication but it’s improved a lot. He does much better at school than he does at home, I think some of it is that he just want to relax when he’s home and not have to work so hard at it. 

So, now onto Teri. My last blog post talked about the clinical trial she was starting up. Well, the drugs didn’t seem to do anything positive, the tumor marker numbers continued to go up and she still has the sternum pain, so they took her out of the study back in October. The doctor gave us a few options, but was pushing getting Teri onto another aggressive chemo. Losing hair and being sick as hell was not something that Teri had the energy to do, not after fighting for 7 years, so he pulled out another chemo that she would be able to handle better. She’s been on that, one week on and one week for a couple of months now, and we’ve seen some mixed results. Before Christmas, we had some positive test results that showed two of the markers dropped and one had its rate of increase slowed significantly. However, the test this last month didn’t continue that overall trend. One still went down, but the other two went up. They increased the dose of the drug, which is really starting to take a toll on Teri. Fatigue, headaches, and some nausea, not nearly as bad as that first year of chemo we went through but still can make it tough to function. A couple more weeks and we’ll have the next test to see if increasing the dose helps, so for now it’s still the waiting game.

Teri did get to finally take that vacation away from the kids that I’ve been trying to get her to do for years. She’s let me go off for weekends her and there, a couple of trips to NAMM and Vegas to see Billy Sheehan and The Winery Dogs, but she never felt like she could leave. Her close friend came to stay with us for a while after New year’s,  and the two of us convinced her to take a trip up to Sedona, a girl’s weekend, and I would handle the kids. It went very well, they had a great time up in nature (Sedona is really by beautiful) and all three kids were alive when she got back. Now I need a vacation again…

So, I’ll try to update this more this year. It’s tough, and by the time I have the time to sit down and write I’m too exhausted from the day to think and put a coherent thought down. Writing is good for me, though, getting these thoughts out of my head, so whether anyone actually reads this or not it’s helpful to my sanity.

My World of Warcraft story

Lots of people talking today about Robert Kazinsky, the hunky British actor playing Orgrim Doomhammer in the upcoming movie, “Warcraft”. He made the comment that the game, World of Warcraft, saved his life, and they discussed it seriously without the typical making fun of gaming or gamers as a whole. Some of my friends said I should share my story as well, on how Warcraft saved my life too.

 

Illidan Stormrage reminding you you’re not prepared

 I started playing about halfway through “Wrath of the Lich King”. I’d always liked role-playing games, and had heard good things so I thought I’d try it out. I had three young kids, 5/7/9, all 3 diagnosed on the Autistic spectrum, busy job, and wanted a good game to escape to at night after the kids were in bed. My oldest is the most affected by Autism, and I named my first character after him as a way to fantasize about him overcoming all his limitations. My son Alex became Alexithorn, the night elf Hunter. I played off and on for a month or so, and was having fun leveling up and exploring. I remember my first time taking the boat over to Stormwind and seeing how many other players there were (remember, this was WotLK days so realm population was big then), I met some great people and joined a guild. Then came Christmas, 2008, when everything changed.

On Christmas Eve 2008, we got the news that my wife had breast cancer. Didn’t make for a fun Christmas, and while I don’t think I was online Christmas Eve or Christmas Day, I spent some time during the holiday escaping into Azeroth, using the leveling grind to take my mind off things while we waited for those first appointments to get the plan together for beating the cancer. I confided in a few trusted guildmates what was happening, one of them also with a wife fighting cancer. They were there for me, and we became friends offline as well. 

2009 was a bad year, no bones about it. My wife had surgery to remove the lump, then a grueling chemo regimen for about 6 months. After that, she had radiation to finish off the treatment in the fall of 2009. During that time, as husband and father, my job was pretty intense. I would get the kids ready for their school (kindergarten/2nd grade/4th grade), I would work full time at my job, then help get dinner and nighttime routine done for the kids. My wife would do as much as she could, but I focused on making sure she was able to have her time to recover between chemo treatments without worrying too much about the house and the kids. We had an incredible team of habilitation and respite workers through the disability programs we already had going with the kids, so that was a tremendous help as well. I also focused on keeping my wife’s spirits up, as mental attitude is half the fight when dealing with cancer. 

During this period, I spent a lot of time in Azeroth. It became my place to go to escape from the world of cancer, driving to and from appointments, helping to change IV bags at home, the stress of work, everything. My friends helped me recharge myself so that I could keep the positive attitude in real life. I imagined that I could leave my worries and troubles in Azeroth, as my character was strong and focused on saving the world from one evil or another. The mobs in the game became an analogue to me for fighting cancer itself, and I could beat that in game. Of course, then I found the Crusader Bridenbrad quests in Icecrown, and I was a blubbering mess. For those who might not be familiar with them, they were done as a tribute for a brother of someone at Blizzard Entertainment who died of cancer, and are heartbreakingly awesome. Those quests are still amazing to me, and I do them on each of my alts that have been leveled up over the years.

I guess my point is that without World of Warcraft in my life at that time, I don’t know that I would have made it through 2009 in a functional way. The stress was tremendous, and I probably would have snapped by the end of that first year. I wouldn’t have been able to keep my spirits up enough to help my wife with hers, which could have changed the course of the fight. I have so many difficult memories from that year, but they are offset by the good memories I have from friends, questing, and raiding through Azeroth and Northrend.

We won that fight in 2009, only to have it come back as Stage 4 in 2011. We fought it into remission the by the next year, where it stayed until this past summer when it woke up again. We’re still fighting, and keeping up hope for the future. Warcraft still plays a part in my life, though I don’t play nearly as much as I did that first year. Friends came back for the assault on Draenor, and will probably be back for Legion. I’ll keep fighting the demon hordes online, giving me the strength to fight the demons in real life.

For the Alliance, and Lok’tar Ogar

Andy

Update from the broiler

So there’s been a lot going on out here, to put it mildly. Hell, I don’t even know where to start. Work? Home? Kids? Teri? Oooooh, let’s start with puppy 🙂

So, about 3 months ago, a friend of ours had puppies. Well, not her specifically, her dog. Mom is a Shih Tzu, dad was a Yorkie, so she had a litter of 5 little Shorkies (I guess that’s better than calling them Yorkzus or something). Teri and I had talked about getting a dog again, we had an Australian Cattle Dog (we think) many years ago named Corky, who was the best dog ever, but the kids started showing signs of allergies when they were babies so my sister, Beth, adopted her from us so she stayed in the family. Corky lived a long happy life, she passed a few years ago sadly. As the kids have grown up, their dog allergies seem to have gotten better, so we’d tossed around the idea of getting a dog. Drew has been asking for a puppy for the last couple of years, so we thought we’d see if a puppy would fit. Our friend let us take one of the puppies for a “test drive” if you will, keep her for a week or so to see how it went.

Well, initially, we took a girl and a boy puppy since they were really close and they were afraid the girl would cry terribly and being separated. That was a colossal mistake, two puppies were WAY too much for us to handle, and they were just at the age where they were starting to try and establish dominance. So, playful fighting started getting more serious, and we didn’t think we could police the two of them for long. That, and dealing with 8-week old puppies peeing an pooping all over…well, that drove me nuts in the morning when also trying to deal with the normal routine of taking care of the kids. So, the next day, the boy went back and we kept the girl for the weekend. Drew was over the moon, so happy. Seeing him that happy melted me, and it became evident that she was going to be part of the family. It was a tough decision, a lot of responsibility, but the joy she was bringing to us (when she wasn’t peeing or pooping in the house) was welcome in our current situation. We told our friend we wanted to keep her, and came up with a name after much haggling. I’m proud to introduce, Ripley – all prettied up from her first haircut 🙂

We all really needed this. Drew has had a tough time with Teri’s health lately, he took the news of the cancer coming back pretty hard initially. He’s been a brave kid, but you can tell he gets worried when Teri starts feeling bad either from the chemo or from other illnesses (more on that in a bit). Ripley has already helped him a lot, she’s going to help us all get through this really. Even Amanda, who for the last two years we’ve seen maybe for a cumulative week or so when she’s out of her cave/room, has come down to play with her. Ripley greets her in the morning when she comes downstairs and tries to steal her socks, and is waiting at the door when she and Alex come home. She has certainly brought a different dynamic to the family, and the potty training is coming along 🙂

Next post, I’ll fill you in a bit on Teri. I wrote up a whole bunch and my browser locked up before I saved it, and I’m too tired to try and type it all back again…

Andy

Amanda’s turned a big corner

So, my grand experiment of posting something every day hasn’t quite panned out, but I’m not giving up on posting altogether. Just maybe not as ambitious 🙂  To say things have been crazy would be an understatement, what with the kids going back to school and getting used to the changing schedules again. But, really what I’m the most glowingly happy about right now is Amanda. In the last year, she has turned a major corner and with her birthday today I see the girl I loved turning into the young lady who I’ll cherish. This will be a long post, but a lot I need to get out tonight.

Let me start with some background. Two years ago, Amanda was 12 and started 7th grade in junior high. Big change, but she was overall doing pretty well. She had some behavioral problems, one which resulted in some school discipline, but overall not too bad. The normal SPICE teacher (responsible for the Autism program) was out on maternity, so there was another teacher filling that role that Amanda did pretty well with all things considered. When the regular teacher came back, though, Amanda shut down. We started having a ton of behavioral problems with her, both at school and at home. She retreated away, we’d sometimes go days without seeing her other than meals, and she would rarely even say anything. Nothing we did would help, and any efforts we made to try to get through would be met with more resistance. She would say incredibly hurtful things to me and Teri, and to see how it was affecting Teri was killing me. I mean, here’s her mother, who’d walked through hell and back to beat cancer so she’d have the chance to be there for Amanda, talking with her teachers daily to try and help at school, going to hours-long IEP meetings to negotiate for Amanda to make things better, and being absolutely shit on by Amanda in return. It was bad, seriously. And as bad as we felt, I’m certain that Amanda felt twice as bad and was simply lashing out at us because she felt this was the one place she could (meaning, if she said half the things that she said to us to any normal person, she probably would have been beaten to a pulp or put in an institution).

During this time, Amanda was on a video game a lot called “Animal Jam” – an online kids’ game by National Geographic, safe chat to protect from stalkers, all that kind of stuff. She met some other kids her age on there and was able to form some friendships, something she had a really hard time with in real-world, face-to-face settings because of her socialization issues. It was also kind of a “role-playing” situation, she made a wolf character and she could act out that side of her personality. Somewhere in here she really started calling herself “Frost” as a nickname, taken from the character she made. At first, she was spending a lot of time on the game and neglecting other things, so Teri and I were concerned there (me, especially, having battled my own World of Warcraft addiction over the years…I’ll have to do a post exploring that at some point). She would lash out when we would try to limit computer time to have her do homework first. This is where some of the huge battles took place, resulting in a lot of hurt feelings and still no homework done. The quandary, of course, was trying to get Amanda to do what she needed to do to pass school but not limit her growing friendships. And for a long time, that really did not go well.

So, last year when she turned 13, I told her she could set up a Facebook account, thinking she could friend some of the other kids she was on Animal Jam with. She had an email address but rarely used it, she’d never respond when kids from school were trying to reach out. Hell, I don’t think she even opened the mail application on the Mac we set up for them. So, she poked around on Facebook and didn’t get it, and I guess her friends were on Deviant Art so she created an account there. Amanda is really a great artist, and apparently her friends she was making on Animal Jam were also into that, so there was a community that she seemed to find a place in. Soon, she started mentioning some of her friends and funny things they would talk about (which Teri and I had no idea what she was talking about, but hey, we’re old so we don’t get that “kid stuff” anymore, right?). She was still having problems in 8th grade at school, and we’d still spar from time to time over computer time, but the 2 hours she’d get from 6:30-8:30 (between dinner and bed) had become the time of day she most looked forward to.

She left her Deviant Art account logged in on my iPad (I think she’d signed in when I took her to an appointment or something) so I decided to make sure she wasn’t chatting with some 34-year neck-beard living in his mom’s basement or something. There was so much teen web-speak I had no idea half the time what I was even reading (damn, I feel older than dirt…). There were mostly normal back-and-forths with the other kids, kind of like Facebook posts for their group (and I learned Amanda knew most of the adult language we’d kept from saying in front of them…and how to appropriately use them as exclamations), and some role-playing in personal messages. The role-play was what interested me the most, in that they were essentially writing a story with each kid playing a part. Amanda was a wolf in most of her stories, hiding in shadows and emoting (“ears laying flat”, that kind of thing) but in reading through some it struck me at how she was using it to explore her own personality in a safe way. She could be any character she wanted, and she could “try on” different aspects to see what fit her. It was fascinating, and very creative. I didn’t read through a lot, as I didn’t want to invade her privacy and safe place away from me and Teri, but I did want to make sure she was being safe. Which she was, and I’m proud that I at least was able to instill some online smarts with her.

So, 8th grade finishes, and Amanda passes (barely, in a couple of classes). She was done with the junior high, and would start 9th grade in high school. She was seeing that as a fresh start, done with the awkward period between child and teen. She still wasn’t back with us, but things started to improve at least. She didn’t have homework to worry about, so she would read and draw, and spend time on the iPad chatting with her friends and then her evening computer time. She’d do her daily house core, Teri would make a calendar saying what chore they needed to do each day, and she’d mostly do it without a whole lot of cajoling. She was still a recluse in her room, but she wasn’t as nasty about it. Camp Kesem was coming around, and she was nervous about being away from her friends online all week. The night before camp, she was bawling while she was responding to messages on Deviant Art from her friends. She went to camp, though, and had a great time as we knew she would.

And when she got in the car for the ride home, she talked.

A lot.

Probably for the first half-hour or so, she talked about things they did. Funny things that other girls in the cabin did. The amazing skit a group did at the talent show recreating the Harry Potter puppets “Mysterious Ticking Sound” video (it’s pretty funny, you should go watch it…it’s ok, I’ll wait). Over the course of the last month, we’d see Amanda more, talking some about this and that going on, showing us some of her drawings and how she’s doing things in Photoshop. Actually kind of reaching out to us, which Teri and I have tried our best to reach right back to her. A lot of the natural hostility she’s had towards us just kind of slowly evaporated over the summer.

The first day of 9th grade last week, we were a little worried about. How was she going to at this new school? New teachers, new friends, harder classes. She came home that first day and got off the bus, not frowning…maybe not exactly smiling or grinning, but at least without what had become her trademark scowl over the last 2 years. I took her backpack and asked how school went.

“Well…umm, it was actually…pretty good” and she smiled at me.

And my heart melted.

She talked about her teachers, how much fun they were and the funny things they were doing to keep them involved. Getting to know some of the other kids. Her new SPICE teacher at this school. It was good. She was happy.

Cut to today, my little girl’s 14th birthday. Comes home from school laughing. Not just not-frowning. Not just smiling. Laughing. She had a good birthday at school. I didn’t get to talk to her much, as I had to run out to get a few things. But she saw the ribs cooking for her birthday dinner before she went to her room with the iPad to meet up with her friends online. While I was gone, Teri went up to get the iPad after her cool-down-from-school time, said she should knock out her homework before dinner since we’d do cake and present.

And Amanda replied that she’d already finished it.

She. Did. Her. Homework.

Without us having to walk across hot coals trying to get her to do it.

Dinnertime, she talked a bit, smiled and laughed as I put her rack of ribs down, inhaled them and went up to get her normal evening computer time with her friends. When she came down, it was time for cake and presents. We lit the candles and I brought it over while we all sang Happy Birthday. She tried to blow out the candles and missed most of them because she was “smiling too much and couldn’t blow hard enough”

Let that sink in for a minute. Amanda. “Frost”. Smiling too much.

Looking back at the last two years with her? Having a problem with smiling too much is a problem that I can absolutely live with 🙂

Of course, there are some things I left out here and there. It’s not ALL sunshine and roses right now. But after all we’ve gone through (and continue to go through with Teri and such) it is close enough. I’ll hold onto this day for a long time.

I’ll try to update more often. Teri goes in for a CT scan and blood tests tomorrow in prep for the next study appointment on Wednesday, see if these new drugs are doing anything other than making her feel like shit. As for now, it’s late, I need to follow up on an issue at work, get laundry, maybe get to bed before 12:30 and up at 5 or 5:30am.

Andy

Seeing “Minions” with my little minion

Stuart, Kevin, and Bob from the Minions movie

Drew and I went to go see the Minions movie today. Got to admit, it was pretty good, and like any good kids’ movie these days it had a few good moments for the parents that likely went right over the kids’ heads. Nice cameo at the end to bring it all full circle. Sandra Bullock did a great job as the villain the Minions go work for, and lots of good slapstick and stupid humor that the Minions are known for. Drew loved it, and watched the whole thing…which is saying something. I can’t quite remember the last movie Drew and I went to go see, mainly because we didn’t stay for it.

He’s always had a hard time seeing movies in a theater, mainly from over-stimulation. He also tended to get anxious over the action and would have to leave. The last movie, whatever it was, he decided he wanted to see in 3D. After about 5 minutes of the movie, he said he didn’t like the 3D and wanted to go. We went out in the lobby and he decided he wanted to see the regular version instead, and the theater manager was very helpful – got us tickets for the normal version that was starting 10-15 minutes later and refunded the difference from the 3D cost. Movie started up, and within 10 minutes he was done and wanted to leave. Probably why I can’t remember what movie it was, we barely watched any of it. Again, theater manager was great and refunded the movie cost, no questions.

So, to have Drew sit through the whole movie, not even needing to get up to go to the bathroom but just glued to the movie, I’d say it was a success.

Drew’s needed a bit of extra handling lately. He’s anxious about starting 7th grade in a couple of weeks, new school and all. He’s had a problem with bullying and teasing in his last few year, some of which I think gets brought on by his own version of autism and the lack of a verbal filter sometimes. He’s a really good kid, and smarter than I was at that age, but as we all remember from elementary and middle school, that doesn’t equate to popular or well accepted. He’s going to be playing baritone sax in band (damn thing is as big as he is…), and I’m hoping he clicks with the band crowd and gets some good friendships this year.

He’s also anxious about Teri, which I can really empathize with. He’s seen her react badly to the trial drugs, and I know it worries him. He tries to put on a brave face but I can tell he’s keeping it under the surface. Like me. I swear, if I didn’t know for sure that we made him the old fashioned way, I would swear he was a clone of me. There’s so much about him, his anxieties, his talents, his strengths and weaknesses, he is a carbon copy of how I was during my formative years.

And, of course, since I’m “Dad” I have NO idea, and can’t help him with advice. What’s the old phrase, once you’re old enough to realize your Dad was right about everything, you have a son who thinks you’re wrong about everything? Seems legit…

♪♪ Where have all…the white cells gone ♪♪

Man, can’t catch a break. White cell count and neutrophils haven’t changed. Teri’s had Neupogen shots the last two days and will get them again tomorrow to try and get those going, and the bone pain has already started from those. Trying to keep that under control, it’s not too bad so far. She’ll get the blood testing done again next Tuesday to see if they’re coming around. The doctor was recommending that she stay home as much as possible to reduce chance of any infections. See, this is where unvaccinated people really scare the shit out of me. Herd immunity is a real thing, people, and opting out of that social contract is directly impacting us at this point. Most of you already know my stance on vaccinations and the anti-vax crowd, so I’m not going into that here. But this is real life now, and it’s important.

I’m going to try to change topic over the next few days so I’m not as much of a downer. Not expecting much to happen at the homefront, Teri will get shots tomorrow and we wait until Tuesday to find out how it’s going. So no use dwelling on it, but it’s been rough this week so my posts have really be focusing on that. I’ll have some more fun things to talk about, I promise 🙂

Once my Xanax kicks in, that is…

Good labs (results) are hard to find…

So Teri’s been off the study drugs for about 3 weeks now. Was originally supposed to be 3 weeks on, 1 week off, but she had to stop the first run a week early because of the effect it was having on her. They were going to start the second run with a lower dose with the hope that she’d be able to better handle it, but her white cell and neutrophil counts were too low to start back. They wanted to see if she could recover without something like neupogen shots because she doesn’t tend to handle those well, and would test again this week.

She had a blood test yesterday morning early, but we were certain that the test was done wrong. Yesterday’s blood test, a stat order, we think was left sitting for about 6 hours before they actually ran it. We hadn’t heard from the nurses, so Teri called around 3pm and the nurses called to the lab to see where the results were. They hadn’t run them yet, they suddenly sounded panicked and said “you’ll have them within the hour”. The results came back with her neutrophils dropping from 1.2 to 0.2 (2.0 is the low end of “normal”) and they said she was at super high risk for infection. They also said there was some clotting in the blood, and we believed both of those things to be related to how the lab appeared to mishandle the blood sample. The study nurses agreed, and Teri went to a different lab for another test today. This isn’t rocket science, you have a stat order, that means you do it, right?

We have concerns about how that one was handled as well, as the listed “received” at 11:40am when she was there at 9am. Found that out when the nurses called over to find where the stat order was and the lab said it hadn’t been long enough yet. From that, sounded like the sample might have been sitting for a couple of hours as well, but who knows at this point. Anyway, this test had similar numbers with her white cell count tanking, so at the doctor’s insistence she had to go immediately to get some neupogen injections. Hopefully we can get her counts up enough to get back on the meds, or we’ll have to look at doing something different for treatment.

I’m still livid about the labs, though. Two separate times, two different labs, a stat order with a 4-hour commit was ignored, even after it was confirmed with Teri and put in the system for stat handling. Doesn’t seem like it should be that hard. She’ll likely go to the oncology office for the labs tomorrow, as they have a “stat” machine in their lab upstairs so they can process it within an hour and know how things are going.

Damn you, Steam…

Oh Steam, you and your sales that get me to buy games…

So I get an email from Steam that one of the games on my wishlist is on sale. I’ve been wanting to play the Telltale game for “Game of Thrones”, as I’m a serious nerd when it comes to reading the books, listening to the audiobooks, and watching the show religiously. So, when I see it’s on sale for 50% off, how can I possibly say no?