A Texican Hairless Twerp

A happy good morning to you. You may have remembered that yesterday I told you things were a little quiet around here without Sydney. Well, that did not last long and boy do I have a surprise for you. It goes back to last weekend. You see, we were double booked on Saturday night. For quite awhile we had planned to attend the Robertson's son Preston's birthday extravaganza. I don't want to brag about ourselves too much but we were even invited to the after party. The Robertson's are like family. It was an important occasion for us.

The problem was that at the last minute we also found out that Hayden (Graham's friend with neuroblastoma) was also having a head shaving party. We explained the concept to Graham. At the time he was very upset that we could not go to Hayden's for the head shaving party but was also not too disappointed with the idea that he would get to go to Chuck E. Cheese's. We promised him that we would let him shave his head for Hayden another time if he truly wanted to.

Everyday since, several times a day, Graham has asked when we were going to shave his head for Hayden. Due to some logistical problems it just never worked out on Monday or Tuesday. But, yesterday afternoon, me with my clippers and Graham with a smile, we got after it.

It did not take long and before you knew it we had our very own Texican Hairless Twerp.

Purpose apparently also comes in a hairless variety.

1 shy of chaos

Good morning! I am actually sitting here typing next to the pool this morning. My blushing bride snatched my favorite spot on the couch and is snoozing away. I can only assume that she had a miserable night. I am quite comfortable here but I must admit that it is a little difficult to write here in the dark. For this reason, I had to postpone my diary entry until sun up.

All is well at the Dungan household. Of course, we miss our precious twerp leader but we know that she will be home soon - only two more sleeps. The others continue on. Both Graham and Ainsley had a superb day full of swimming and playing at the park. They are slowly beginning to adjust to their cluelessness in Sydney's absence. They are becoming much closer and, although still fighting like cats and dogs, seem to be enjoying each other's company when not in fisticuffs.

Lynley drug out her birthday celebration to yet another evening. Last night we went out with two of our close friends. Ordinarily we go out just as adults but due to a lack of willing martyrs we brought the kiddos along. They had a great time at dinner but felt less enthusiastic when the big girls decided to go clothing shopping. Here we were, two grown men carefully watching Ainsley and Graham to prevent any type of lawsuit from the store as the two girls frolicked through the rods of clothes. It was borderline abusive to my manhood but I managed.

Well, as you can see, nothing too much to report on the Dungan forefront. I know, it seems somewhat boring without the twerp princess. Soon we will have her back stirring things up again. I also have some big news to share in the very near future.

With hope and purpose.

Horse "back" riding

At dinner every night we sit around the table and one by one we each answer two questions. The first question is: What was the best part about your day? The second is: What was the worst part of your day? The answers to these questions often give us a clear picture of the highs and lows for each and everyone around the table. You know, you can real tell a lot about a person by listening to their highs and lows. It creates a pretty clear picture of where their mindset is. It can also be pretty funny.

Graham still seems to be more interested in telling stories. The best part of his day is always something that really happened. It is tangible. I.e. The best part of my day was swimming in the pool with Mommy and Daddy. The worst part of Graham's Day always seems to be something totally fictional - and, quite possible disgusting. It might be something like: "I was swinging between the buildings like Spiderman on my way to target. I saw two bad guys so I got 'em with my light sabre but I accidentally chopped my arm off." I guess as long as he has to make up a bad part of his day I think we are doing a pretty good job of raising a pretty happy kiddo, even if he does leave gross imagery floating around in your head.

Ainsley, on the other hand, seems to follow a different pattern. The best part of her day always seem to by copied from someone else at the table. On more creative days she might even go out on a limb and say that the best part of her day was playing. What is most funny is the worst part of Ainsley's day which falls into two categories. Either the worst part of her day was not spending enough time with Mommy and Daddy (this is a standard twerp suck-up answer designed at getting the parents softened up for ice cream after dinner.) or, more likely, the worst part of her day is a series of diatribes describing the endless abuses she sustained at Graham's hands. She just completely unloads. She mentions every thing she can think of. "The worst part of my day is when Graham pushed my out of the chair and then we he took my kinex away and then he hit me and when he wouldn't share with me and then when we took my blanky and when he hit me on my back and when he pushed me off the floaty boat." She truly makes it sound like she is the abused little step sister but she often forgets that she instigates the vast majority of these incidents. She simply loves trying to get him in trouble.

Last night was a little different without Sydney and while the worst part of all of our days were that Sydney was not there. We tried to imagine what the best part of Sydney's day was. I thought she probably went swimming. Others thought she may have gone fishing. Lynley thought she probably went horseback riding. Graham took to that immediately. That must be what Sydney was doing. How cool was that? He started imagining and describing how Sydney was riding the horse. He was excited. All of a sudden he stopped. "Why is she sitting on the horse backwards?" - Graham 2008

Can you figure out why?

She was horse back riding. Lynley and I had a thorough laugh. Playing best and worst often ends that way.

It is also a great way to see your purpose.

A week of sanguinity

Well, she is off. Sydney has left us for an entire week of camp. I will, of course, miss her but I have to be honest. I am more excited for her than anything. This is one of those huge milestones in life. She is off at camp on her own. Wow.

I can remember back when she was 4 and 5 when she went to this camp for just a single day. Lynley and I were nervous wrecks. That was just eight hours. Lynley and I spent an entire day with our stomach in knots. If you remember, Sydney did much better than we did. Once again, she showed us what an incredibly self-sufficient little girl she is.

There is no doubt in my mind that is the way that she is right now. I am confident that she is having a great time. I am surprisingly calm and at peace. I guess you could say that I am full of sanguinity. I miss her but I know down deep in my heart that she is having a wonderful time. She is old enough and strong enough to care for herself. I have no fear that she is tearfully pining away for us - at least Lynley and I. However, I am pretty sure she will be mopey at some point thinking of her brother and sister.

Sydney is at Camp Sanguinity which is actually a camp at Camp John Marc. If you are curious as to where she is and what she will be doing all week you can read a little about it on the website at http://www.campjohnmarc.org/.

Now, Sydney might be fairing well but her brother and sister have lost their leader. They aren't quite sure what to do. Graham has tried to step up to the plate in the meantime but it is still pretty clear that they have no idea what to do without being told. Sydney was the source of their entertainment. She told them what to do, how to do it, and when. She had them trained. The closest analogy that I can think of to describe it is an ant colony. Normally the travel in orderly lines right behind each other. There is order. However, if you take your foot and drag it across the line all of a sudden the ants start milling around randomly in all different directions. They lose all sense of order and purpose. That is a little of what it is like for Sydney and Graham. The are wandering around aimlessly.

Going to bed last night was not easy. Ainsley was sure that the monsters would come and she is as positive as the sky is blue that it is Sydney that protects her from them every night. Ainsley being riled up only did the same for Graham and the next thing we knew we had two kiddos up and out of bed hiding from monsters. Eventually we got the both of them to sleep but it is clear that this has been a large adjustment for them.

A little of our purpose has left the building and we are all just trying to figure out what to do.

Her sickness or my mania - you pick

Ah, good morning. I have been sitting here for quite a while trying to figure out what to write. There are, of course, 1000 things I could be telling you about. I could tell you about our plans for the 4th of July parade or, even more interesting, about the fact that on Monday, Lynley's Birthday, Sydney will be leaving for a week to Camp Sanguinity. I could tell you that Sydney went to the dentist yesterday and that she is missing a tooth (canine) that never came in. I could also finally write about ABT-751 and its combination with Fenretinide. I could probably even apologize for how technical my talk about Fenretinide was. For fun, I could even tell you all about the neat things I am working on in the world of neuroblastoma. But, as exciting as all of that could be, it is not what I really want to talk about.

You see, I am still on this Sydney "not feeling well" thing. By the way, this is how manias are started. Regardless, it is probably the most interesting subject to me. I received some helpful advice from an anonymous poster to my blog. It is nice to know that we have a social worker in our corner. For better or worse, we need it. I guess we probably all do. Raising kiddos certainly travels the razor's edge between complete joy and utter madness.

So, here is what happened yesterday. Yesterday, after Sydney woke up complaining of lethargy and feeling sick I had another heart to heart with her. Ironically it followed along much of the same lines as my anonymous poster suggested. I told her that if she felt that sick she needed to go back to bed were she would stay the rest of the day. I also used some bait. I told her that there were some fun plans for the day and it was sad that she would be sick and miss it. Within minutes she experienced a full recovery and, crud, I was left having to plan something special. (I hate when I do that.)

On the way downstairs I had another heart to heart with her. I really wanted to get to the bottom of it. I felt she needed a more thorough discussion on telling the truth about how we feel. I felt this was as good an opportunity as any. Besides, she is now more capable than ever to have this particular rational discussion. I explained that I wanted her to be honest with me. I told her that if she wanted more of my attention (or Mommy's) that she just had to ask. I explained that if she just wanted to lie in bed because she had not woken up or because she was lazy that she needed to be honest with us. I explained that telling us that she was sick when she wasn't was wrong and very bad. I explained that if we gave her medicine for a sickness that she did not really have that the medicine could actually make her sick. I explained side effects in a way that she could understand. Some medicines make you sleepy, some make you sick to your stomach, and some even make you lose your hair. I was very careful in my explanation not to scare her but I wanted to drive the point home. I wanted her to understand that faking an ailment was not the answer. By the look in her eyes and her feedback I was confident that she got the point. She understood. She also came clean about some of her past "sicknesses."

At the last minute we lined the kiddos and Miss Claudia up to head out to Pump it Up for a morning of fun running and jumping through the largest collection of bouncy houses and inflatable obstacle courses I have ever seen. They spent over 2 hours wearing themselves out. It wore Ainsley out so completely that she ended up sleeping for the last 45 minutes or so. In the end, Sydney made it through all of the play but ended up busting her lip up pretty thoroughly in the last 10 minutes. Other than the necessary kisses and an ice pack Sydney was fine when she got home. Ainsley's temperature, however, was creeping up. I am guessing that she has not fully recovered from the day before. Graham, as usual, was just happy to be there. We put Graham and Ainsley down for a nap and Sydney continued to play and read the afternoon away.

By evening, Sydney was complaining about being tired. That was not something that sat particularly well with Lynley or I. As Sydney talked about her day she kept mentioning how tired she was. It left Lynley unsettled and me curious as to whether or not she was replacing sickness with tiredness. To be honest, I like the tiredness even less than the sickness. It will be another day of identifying what is going on. I am hopeful that after a full night's rest she will be ready and raring to go. It will be interesting to see if she is so high energy again. Was she tired from all of the play at Pump it Up? Was she tired because she was sick? Is she tired because she wanted to snuggle on Daddy's lap? I don't now the answer. I do know however, that lethargy is also a side effect of cancer.

We need a break from these constant ailments, owies, and lethargy.

I will be sneakily purposeful today.

Identifying the cause.

Putting your finger on an ailment of a child who has spent the better part of her life with serious sickness is not easy. Ainsley on the other hand is more transparent. Every time she doesn't want to do something she says her tummy hurts or that she feels sick. When she is truly sick she throws up. When she is finished throwing up she is not sick anymore. It is simple and clear cut. By the way, she is finished throwing up - complete recovery to twerptitude.

Sydney, on the other hand, is a far more sophisticated faker that was mastered her technique through years of first-hand, hard-earned experience. Lately, these occurrences of "sickness" or "extreme pain" have been more common. The trick for us is to figure out what is real and what is motivated by some deep-seated desire for more attention, emotional support, or for whatever it is that she is looking for.

Whenever one of these episodes raises its ugly head I am always looking for the root cause. As of late I know that she is going through some changes. For example, one of her frustrations is with Miss Claudia. Miss Claudia has some different rules than Mommy and Daddy do. These rules are for good reason and they give Claudia adequate control of the children so that she can manage them. Her rules are like ones you would see in a school. You have to ask to go to the bathroom. You can't go running willy nilly through the halls. You can't leave the room whenever you want to. You can't go into the back yard by yourself without the rest of the kiddos. You see, all reasonable requests for someone that has been charged with caring for several of you kiddos. She assumes some liability to ensure there safety. We certainly get it. Sydney does not. She thinks they are "baby rules." We, of course, support Claudia's rules and Sydney finds it unfair that we are not taking her side. Coincidentally ,it seems to also coordinate with Sydney's spells of sickness and gross injury.

The trick is proving it. How do we know it is this and not neuroblastoma? What are the tools that we parents have to get to the bottom of it? I knew I should have studied more psychology in college. Regardless, last night I tried talking to her directly about it. We will see what today holds. Any ideas?

Purposefully scheming.

Hidden Disease

There is something lurking amongst us. I had noticed over the last day or so that Sydney was extremely lethargic. She did not wake up yesterday morning until well after 8:00 AM. That is unusual for her. Although she is always my latest sleeper it is very strange to see her snooze past about 7:15. Throughout the day she was pretty argumentative. Her listener, the magical device that makes kids listen when their mom or dad tells them to do something, was broken and she had a tough time following even the simplest requests. Hearing from the roars downstairs as I worked, it was also clear that she was not coping very well. I suspected some kind of sickness.

Kids are kind of like cars. Although they don't have a dipstick, they often act like one and that is a pretty clear indication that they are not feeling quite up to par. This is Sydney's true tell sign. She becomes argumentative and has difficulty coping. By early afternoon she was truly out of sorts and had added significant lethargy to her repertoire of sickness showing signs.

With the other two kiddos acting just as normal as ever I was becoming a little worried if I am being honest. She had no normal outward signs of sickness - no cough, no sniffles. It was worrisome. Those things I can put a finger on. It is those hidden sicknesses that I worry about. I have to admit that I was beginning to have thoughts about neuroblastoma. What can I say? It is the world we live in. It is what we have come to expect when we can't put our finger on the answer.

In the middle of the night we had several visits to our bed. Although Sydney ended up in our bed next to me, she was not the only one. This morning I woke to hearing Ainsley crying in the hallway. She felt like she was going to throw up. This probably sounds horrible, but I have never been more relieved. Neuroblastoma rarely travels in packs.

I am sorry for Ainsley, though. In fact, I just had to put down the pencil and paper down as she threw up. I had better get to Daddying.

I have a full day of purpose ahead.