5:44 AM 1/2/2008
Good Morning! It sure seems like it has been a long time since I wrote in my diary and to say that a lot has transpired would be utterly underestimating the last few days. Early Saturday afternoon it seemed calm enough. Graham had recovered fairly well. He was almost two days out of pukesville and seemed to be in fair running order. He still had a bit of diarrhea but, for the most part, he was ready and raring to go. Saturday afternoon found me taking Sydney and my glorious in-laws shopping at Nordstrom's. This little activity gave Lynley a few quiet hours to rejuvenate. By the time we got back I was feeling pretty good about myself. I had been a good hubby. I gave my wife a much needed Holiday break. Pat, pat on my back. However, what I did not expect to find when I got home was that she was in even worse condition than when I had left her. My blushing bride looked like hell and instead of muttering those wonderful words "You are a good hubby, I love you." She made a beeline for the bathroom. During her stint in the bathroom I got the rest of the kiddos up from their beds and began the after nap cuddling process in front of SpongeBob on the tube. I could hear what was going on behind the closed door of the bathroom. There was some serious ralphing going on in there. This was really strange considering that my wife had sworn it off in college because she found the sensation undesirable. Yes, she of steel innards was in the midst of a full-fledged, porcelain-filling hug.
This little incident would set off a chain reaction of puking within the walls of our house that would last almost 12 hours. The next thing I knew Ainsley was throwing up all over Mama Marge and Sydney was making a beeline for another throne. Lynley made her way straight upstairs as I raced to clean up the spewing vomit. For the next few hours I would manage laundry, the shuffling of clean clothes, and a relentless barrage of dirty puke buckets. Sydney was on a 25 minute schedule and Ainsley was on a 35 minute schedule and like clockwork they would fill up another bucket. I tried medicating the whole lot with Zofran but it never really seemed to take and I new that there was no possibility of getting in any Tylenol in before it would be shot right back up at me. I could also hear Lynley upstairs who was on a similar schedule. Whenever I had a spare moment, which was few and far between, I would run up and check on her but I was always ushered off with "go away" as soon as she heard the door creek. This whole process continued routinely throughout dinner and bedtime. Seeing no real end in sight I decided to set up sleeping stations downstairs in the den. I made the girls two towel beds on the couches and I slept right in between them on my old trusty hospital air mattress. At about 8:00 PM I sent Marjorie up to bed. So far, we had been lucky, the kids had been on different schedules, so I figured I could manage them alone. Of course, this also had the byproduct of producing the opposite effect and sure enough until about 11:00 PM the girls would explode on the very same schedule. It was difficult, to say the least, to manage the two together. With some occasional help from Kip, however, we chugged right through it. Eventually it slowed down and at about 2:45 AM Ainsley was the very last one to ring the bell. For the next few hours we slept solidly, even if not completely comfortably.
The next morning just about everyone had recovered enough to make a presence but Marjorie would spend the entire day upstairs in her room. We heard rumor that she did not feel very well and we pretty much let her be. The recoveries of everyone else were good but not complete. I spend the entire morning cleaning and scrubbing to get the smell out of the house. By noon I was slowing down and, frankly, becoming very queasy. It was becoming very evident that I was to be the next victim. I decided to try and get ahead of it and began medicating myself with everything I could think of to ward off the 12 hour vomiting extravaganza. I took Pepto-Bismol like it was going out of style and kept myself medicated with Advil to curb the headaches. It was surely an amateur attempt with no prescription weapons but it seemed to be holding it off. I stayed in bed and watched the Cowboys be decimated by the Redskins. Normally this would have brought about a serious vomit but my homemade brew even got me through that. Throughout the night the queasiness would come back every hour or so. I would not sleep well and felt like I was on the edge of throwing up at nearly very moment. When I did not have that feeling I was stuffy and congested. It did not make for a good night of rest. The next morning I would make a late arrival and although I did not feel particularly well I decided to stay active and fed and to try to get ahead of this monster. Marjorie spent another day in bed.
In the end something worked. I seem to have skated by the 12 hour pukes. Everyone seems to have recovered but there is still and air of queasiness around the house. No one feels 100% and everyone is still walking the fine line between sanity and sanitizer. I would still not visit with us for the next few days.
The good news is that we have all reached a new year and aside from this bought of the vomit virus my family is fundamentally healthy and okay.
I am thankful for another year of purpose.
5:54 AM 1/3/2007
Good morning. Another day of queasiness has been ushered out but I am thankful to say that the entire clan made it through without kneeling at the porcelain alter. Everyone seems to be eating in baby steps and by all accounts it seems to be working. However, this did not mean it was a day without medical surprises.
Yesterday morning I had neglected to mention that at 3:30 AM I was wakened to hear Ainsley crying. Specifically she was saying "I want to go see Dr. Debbie. My ear is hurting. I want Dr. Debbie." Knowing our kids accuracy in predicting ear infections, Lynley lined up a visit with Dr. Debbie. In the early afternoon I ushered Ainsley and Sydney to Dr. Debbie's office. Sure enough, Ainsley had an ear infection. In fact the only thing that she had wrong was the fact that the ear that she thought hurt the worst was on the side that had less of an infection. Nonetheless, she apparently had very good reason for waking in the middle of the night. The good news is that she is now on antibiotics to help her with the ear infection. The bad news is that this certainly won't help with the diarrhea. We have, of course, totally cut out juices and have put her on a strict regimen of hiney plugging foods. You know, fun stuff like bananas and yogurt. We have also taken to sprinkling a capsule of Culturelle on her food morning and night to help restore the bacterial balance in her gut. Hopefully this will help her curb the diarrhea.
Now, on a happy note. I don't know how many of you noticed but we have officially passed the $250,000 mark for the holiday season on Lunch for Life. Think about that. We did that just during the holidays. I must admit that I was a little shocked that we made it by the end of the year. It was a goal that I set but not one that I necessarily thought was even possible to accomplish. However, I can't tell you how happy I am that we made it. The CNCF will be putting it to great use. In fact, I am already bugging a series of investigators to see were it could be best put. Again, the goal is to invest in research that will hasten the cure most quickly. These are some very important lunches. Add this amount to what we raised throughout the year and I think we can make some very important headway. It was a great year for research dollars. Let's see how great of a year we can make by investing them wisely in neuroblastoma research.
I just want to thank everyone for their support. We are making a difference. We will save lives.
This is purpose.
6:05 AM 1/4/2008
You may not believe this but yesterday there were no doctor's visits and no throw up. Okay, I can see your not easily impressed. Well, you should be. After the week of porcelain hugging that this family has endured this is a crowning achievement. In fact, I might as well come out and say that there was probably no goal loftier. It feels so good that the air even feels lighter. Of course, I realize this is probably because the stench cloud formed by all of the puking is finally starting to lift. I know longer walk into the den and wonder, "Hmmm, what is that odd smell? (knowing full well what it was)" The point is we are in recovery mode and I could not be happier.
The other item that has caught me a bit by surprise today is that it is Friday. It outright snuck straight up on me. Just when I was getting used to having the kiddos back in school, too. Ordinarily I would be looking forward to a weekend where we could spend more time as a family but somehow I feel cheated this week. How am I going to adequately miss the kiddos? Don't get me wrong, I absolutely love them. I just need a little more break so that I can appreciate them as much as I need to. (How was that? You don't think I hurt there feelings do you?) Regardless, another weekend is right around the corner and I am certainly not going to complain. I have a mountain of research to catch up on and hopefully this will give me a little freedom to do that as well.
I am starting to get the feeling that the kiddos have a different impression of me than I want them to. Last night as I crawled into bed with the twerplets I tickled Ainsley to get her to open up some room for me to fit on the bed. Just so you know, this is the nightly ritual. All of the kiddos hop on Mom and Dad's bed and we snuggle and wind down. At least that is our goal. The kids sometimes seem to think that this is an opportunity to go off of the deep end. But, we are responsible parents and I can tell you first hand that the idea is to wind them down, not necessarily fully expend their batteries.
Anyway, so I was tickling Ainsley and giving her a "zerbert" to get her to move over when she broke out with "funny dada!" Lynley responded with, "Is your Daddy funny?" Ainsley said, "Daddy is always funny!" Now, when they say funny, they don't mean "ha-ha" funny. They mean "nutty" funny. They mean Daddy needs a special home funny. And so the conversation continued. I said, "No, I am not." Ainsley said, "Yes, Daddy always funny." Sydney looked over very seriously to me and said "Yes, Dad, you are always funny." Graham looked over at me and gave me the most pathetic little look as if to carefully confirm their statements but to reassure me that I was "special." I said, "No, Daddy isn't always funny. Daddy just likes to make you laugh sometimes." They all gave me that same look. That, you poor, poor little man look. Ainsley, once again, look over and said, "You funny Dada." Everyone around the room gave me that kind of reassuring pathetic nod. Even Lynley, my blushing bride, gave me that sad little look.
I think they are considering having me committed.
My purpii think I am one taco short of a combination plate, that my elevator skips the mezzanine, and that my zoo is missing most of the animals.
I guess it could be worse.
Thankfully, I still have my purpose.
5:39 AM 1/7/2007
Well, at least I have not been physically thrown up on. No, the kids are all on the road to recovery. However, that does not change the way that I feel. The last few days have been very busy on the neuroblastoma front and I spent much of my weekend responding to emails on the NBlast ListServ. The same group that I have participated on for so long. Every year or so the subject of the "neuroblastoma investigators" comes up. Since we haven't cured neuroblastoma in the last year, it seems that a group always wants to "rise up" and blame them. Furthermore, they question the motives, the research, and throw around accusations and levy insults at anyone who does not rise up against the "man" with them. This year, I decided to stand up against the false accusations. I tried to shed some light on the empty innuendo and conspiracy theories.
Unfortunately, it apparently became more easy for them to hurl insults at me and the investigators than it did to actually discuss the facts and analyze the reasoning behind many of the decisions that have been made on why neuroblastoma research has progressed along the path that it has. It is unfortunate because it is a very important subject for families and parents of children with neuroblastoma. Thankfully, judging by the amount of email that was flooding through my email inbox, people were clearly supportive of my attempt at a discussion. Furthermore, it showed that people were getting the information even amongst flurry of less than helpful banter.
So, why do I sit here and share this in my diary. Well, I have two reasons. First, I want to make a very public statement in support of the neuroblastoma investigators throughout the world. They are a very dedicated group, committed to finding the cure and saving as many of our children as they possibly can. I can say this because I can say I have met most of them (at least in this country) and I have gotten to know them. I have personally talked to them about their research and have asked them all difficult questions. Through this process I have gained an understanding of their work and their perspective. What I have learned, more than anything else, is that when they make a decision on a trial or a piece of research they do so with a tremendous amount of forethought and they ALWAYS make an effort to do what they can to benefit our children in the best way they no how. Now, if you do not believe that this is the case. If you think that I am not telling the truth, tell me. Give me a specific example of a physician who is not working in the best interest of our children. I will investigate them with you. I will questions you with them. I will get to the bottom of it and I can guarantee that if we don't find that they have the end motive of saving as many kids with neuroblastoma as they possibly can I will rise up and scream from every podium across the world.
It is simple. Understanding why investigators make research decisions can be important because they all have a reason for doing what they do. Those decisions can often impact why we do the things the way that we do. It can also impact what future decisions we make. Regardless, these decisions aren't black and white. The neuroblastoma world is grey. Again, if you ever doubt a decision, if you think you can do better than the investigator, then step forward. Let's go find out the facts. No insults. No name calling. No bias.
The second thing that came out of these discussions is actually a change to my diary. From now on, I will write about our family, our lives, and neuroblastoma for four days a week. For one day a week, instead of writing in my diary, I will be writing a neuroblastoma related article for the CNCF. The topics of these articles will be various but the key point is to provide an unbiased view of what is going on in the world of neuroblastoma research. I will tackle the issues of demystifying various trials. I will discuss research. I will discuss supplementation. I will discuss scans and tests. Most importantly, I will be discussing topics that aren't readily available. Finally, I will discuss issues of importance to families. I will not provide advice. My articles will be subject to everyone's comment and review and I will address any topic or question. I will interview neuroblastoma specialists throughout the world to get the most cutting edge information available and my articles will be based on actual published research and verifiable evidence. I will shed light on both the good and the bad. I am interested in any and all topics that are of interest to families and I will do my best to get to the bottom of whatever subject we tackle. I already have several topics that I would like to cover but if you are interested in reading anything specific please feel free to email me at firstname.lastname@example.org. No subject is taboo.
Sometimes purpose comes from fear, at other times it is frustration.
5:00 AM 1/8/2007
Good morning! Do you know what today is? Today is the day that all of my kiddos go back to reality. Today is the first day back to school. Now, don't get me wrong. I love the little boogers. However, I must admit that I am a little glad to see them back into their routines. It will be nice to have a full day of work without also having to entertain a rambunctious little twerp that loves to push the limits of the law - and physics. So, after the conclusion of my very last day of pulling double duty, I have an opportunity to reflect.
I think the most important thing to come out of this holiday for myself was a reconnection with Sydney. Sydney has spent much of the last year or so balancing many issues related to her treatment. I am not talking about medical or health issues but more about just becoming who she is. She spent so much time in treatment and in the hospital that she missed a lot of the time that is typically used to figure out who she is and how she fits into the world. Although she certainly got a schooling in controlling her mind and body during treatment she certainly did not necessarily have control. Much of the time that she would have spent experimenting with who she was as a human being had to be delayed. For example, Sydney wasn't really able to experience much of the journey of going through her terrible twos. She was simply trying to live she was too tired to experiment with saying no and shouting mine. I think this is one of the reasons that she seemed so mature for her age.
As we got further out from the daily grind of treatment she had more opportunities to experiment with herself. I think this is why we saw her going through many new transitions as she got older. Essentially, she was exploring her boundaries that she had not had the opportunity to when she was younger. Often I was frustrated by this because I thought, in many ways, she was simply being immature. I did not really spend a lot of time analyzing why it could be the case. It was my first born, I just figured it was the norm. I have only recently felt like I have discovered this point of view as I have watched Graham and Ainsley go through these transitions as well and at more age appropriate times. Then, once a reflect back on Sydney a bit, it becomes painfully obvious. She is going through all of these transitions that she missed. I thought she was not acting her age. But, in a funny way that was exactly what she was doing.
Over the holidays I really had the time to change my perspective and the ways that I interacted with her. What I saw was an enormous change in our relationship. It isn't that we were strained or that we loved each other any more or less. We just understood each other so much better. Now I can reach her, when before I don't feel like I ever got in. It was a battle to help her and now it seems easy. It is an amazing transformation in our relationship.
I love my purpose.
5:06 AM 1/9/2007
Good morning! Well, the first day back to school has come and gone. Well, what can I say, it wasn't exactly a full day. It was yet another half day. I have to be honest. I really love Sydney's teachers. I love the school. I love the philosophies that they teach by. However, it is the most "not going to school" school I have ever seen. It seems like nearly every week they have a day off of school for some unknown reason and when that isn't justified they always seem to sneak in a half day here or there. As a last resort or just for good measure they even find regular reasons to start school late. I certainly wish this was the school I was going to when I grew up. Regardless, I feel pretty strongly that she will still receive an excellent education. I just wish she would receive it more often. Today, however, is back to a full day.
My kiddos are a blast. In fact, the next time you look over at the guy next to you in a car that is laughing hysterically and you can't figure out why because you don't see anyone in the passenger seat, don't lock your car and avoid eye contact. Don't be frightened. It is likely me listening to the Dungan twerp band jamming in the back of my suburban. Sydney has taken to carrying her portable piano in the car everywhere we go. It is one of those keyboards on a rubber mat that can be rolled up. It is actually pretty nice. Regardless, she unrolls it across her lap and down onto the floor. She generally picks a beat and a rhythm or sometimes she will even play one of it's preprogrammed song backgrounds. Regardless, she turns it up to full blare and begins to sing at the top of her lungs - badly. What is slightly even more funny is when she convinces the other to do the same. Half singing and half providing instruction to Ainsley and Graham on what to sing next, it is probably the funniest thing I have ever listened to in my entire life. The thing is that they really have a blast and they have so much fun together. I can assure you. They will never make the Jackson Five. I doubt they would even qualify to join the Brady Bunch band. But, there is no doubt that they are having even more fun. To tell you how much I truly enjoy this little episode, I will even turn off my Tony Romo loving Sports Radio station when Tony Romo talk is on just to hear it. It is the most awesomely horrible thing I have ever heard and yet it brings my heart so much happiness. Joy to the twerps.
I have learned that purpose doe not always sound good.
6:14 AM 1/10/2008
Good morning! Another day has arrived. I have a little bit of a late start this morning. The Dudester had a "coughy" night and if you recall, once I have been awoken, the likelihood of me going back to sleep is pretty slim. My mind automatically kicks into overdrive and off I go. Well, regardless, this should be less about me and more about the little guy who I am sure received a less restful night of slumber. I really have limited understanding of the condition. As I have never had it. But, like my wife, the lovely and beautiful Lynley, he has asthma. You may recall that last winter we had to give him some routine breathing treatments and we even put him on some medication. The good news was that it seemed to limit itself to the winter and, oddly enough, when the heater in the house was on. Otherwise, he had an occasional cough but was fundamentally okay. Well, last night was not okay. He coughed constantly and at about 1:00 AM Lynley got him out of bed and gave him another Albuterol breathing treatment. Although the Albuterol should have had the opposite effect, he went almost immediately back to sleep. It did work on Lynley and I however, and getting back to sleep took several hours and several different position and room changes. The coughing eventually subsided and he seemed to rest the remainder of the night more peacefully.
Everyone else seemed to sleep fairly well. The only other strange surprise was a little bump on Sydney's head. This is one of those paranoid neuroblastoma things. For better or worse, this time it seems to be bothering Lynley worse than I. Anyway, Sydney has a small bump on the right front top side of her noggin. It is so small that I only even detected it on one of three attempts and even now I occasionally doubt what I felt. It is not detectible by site and if I had to guess at it's diameter I would have to say it was a quarter of an inch. There is no discoloration and Sydney does not seem to recall any injury or bite. She does describe the pain as being sharp. In her words, "like a needle." It only seems to bother her when it is touched. Now, the reason Lynley is nervous is that neuroblastoma often forms on the skull at relapse in this manner. Well, as bumps or lumps underneath the skin. I have heard some describe them as painful and others not so much. However, the calming point for me is that I don't recall anyone describing the pain as needlelike. Finally, I would expect to see them much larger. Of course, that is a relatively nonsensical assumption and not based on reality but rather the best guess of a dutiful and often paranoid non-medically trained dad. I could further provide that my "professional" opinion in this case is that although it could be the nasty stuff it just doesn't seem "neuroblastoma-y" to me. Anyway, it is something not normal and something that we will watch closely over the next few days and weeks to see what happens with it. I guess this is one of the side effects of being so lucky, the price is often fear and paranoia.
As you know, purpose can be scary stuff.
3:27 AM 1/11/2008
Well, on my way home from dropping Sydney off at school yesterday I dropped by Dr. Debbie's office with a peace offering of Starbucks to bribe my way into an appointment for Graham yesterday. Thankfully, they had one opening on Deb's half day in the office so I snatched it up. I then made my way back over to Graham's school to hijack him from working on an art project. It was not long before we were back in a room with Dr. Debbie who gave him a thorough listening to. There is clearly some wheezing going on. She gave us a script for prednisone and an order to pop him onto the nebulizer 3 to 4 times a day. I am happy to report that I followed her instructions exactly and I can report a smooth and quiet night of rest for the Dudester.
Sydney's status has not changed. She did not mention her invisible bump all day. For the fun of it I mashed on it while I gave her a kiss good night last night. I was trying to be clever. I failed. She said ouch and this time explained the pain as being a needle but feeling cold. I found that strange and it did not particularly make me feel any better. We shall see what today holds.
Perhaps, the other really exciting news is that I have finally learned how to teach Sydney how to read. After all of this time it is finally clicking. I have felt like such a complete dolt. I am one of those people that is somewhat like a bulldog. I am thick headed and I will sit there and do something nonstop until I can do it perfectly or until I figure out the solution. In this sense I become obsessive. If I can do something I quickly find it boring so I am always looking for new challenges. If it is a challenge it will not leave my mind until it is solved. Ainsley is like this. If she can't do something she will do it over and over and over until she has mastered it. Sydney, on the other hand, is the complete opposite. If she can't do it, it isn't worth doing. She becomes frustrated with even the simplest of challenges. Quite ironic given everything she has been through. I would blame this on cancer but let's just say that there is someone I am married to the might perhaps have a similar trait. I am not saying it is Lynley. I am just saying it is probably hereditary.
Anyway, teaching Sydney to read has been the absolute most frustrating experience in the world to me. Every time she discovered a word that she did not know by sight she would give up and throw a tantrum before she made any effort to sound it out. It isn't that she does not know to sound words out. She simply became frustrated and, I guess, slightly embarrassed at her lack of immediate, first-glance mastery. This drove me bonkers because I could never get her to try. For me this is the key. Remember, I have issues and believe that if I just keep banging my head against the wall I will eventually get through. This is a hard concept for someone who simply wants to just go around it. Go to the next page and give up. Man, that drove me nuts. I guess it goes without saying that reading time quickly became a frustrating experience for both of us and it was our least favorite time together.
As a function of my revelation with Sydney over the holidays. I began a new tactic. Every time she ran into a word that she could not readily identify within a few seconds I would begin sounding it out. I did it in a way that she would repeat after me. Instead of breaking down and focusing on each different letter, I focused on making sure that the end result sounded like the complete word. In this way we were kind of backing into sounding out the syllables and letters. I did not ask her to do it. I just put my fingers under the letters and quickly produced the sounds. The good news is that it sounded more like a word that she was familiar with so she was experiencing some level of immediate success. I have found that she then feels more comfortable sounding out the words. All of a sudden reading time has turned into her favorite time. In fact, when she is not singing out loud in the car she is, in fact, reading out loud. She is making progress in leaps and bounds. I finally learned how to teach my daughter to read. It feels good.
It feels like purpose.
6:08 AM 1/14/2008
Good morning! I know, I know. I said I would not be writing in my diary 5 days a week now that I was going to be writing a blog article for the CNCF but I just could not help myself. I have been working diligently on the article and to get everything set up but I am just not quite there yet. What can I say. I have been buried in email as of late. I don't know what happened but, all of a sudden, I am getting between 10 to 20 email per week from other families asking for advice. That number is up substantially from my previous average of about 3. Regardless, I have always prioritized those emails above all else other than the care of my own family and they can be very time consuming to write. I know how important these emails are and I want to make sure that I address each and every detail. I can vividly remember how desperate I was for information. It is a helpless feeling and when another family takes time to provide you with the information you are craving it means everything. This is why I prioritize these emails above all else and unfortunately, it sometimes comes at the cost of an article, research, or something else important.
I did also want to give and update on the kiddos. Graham is better but still not out of the woods. His cough is still with us. It seems less frequent and he is sleeping through the night so I am thankful for the small improvements. I am hopeful that the trend continues.
Sydney, too, has been silent regarding her head "owie." I have not checked it in the last few days but she also has not mentioned it. Although I am extremely curious I have learned to temper my madness. If I continue to poke at her, I will create my own monster. Perhaps today it has been long enough and I can nonchalantly graze her head without my intentions being noticed.
The weekend was rather uneventful. I replaced the front door and framework on the guest house and kept myself busy doing honey dos and laundry. I even had some pretty good opportunities to pester the kiddos. All in all, it was a successful weekend.
Well, I had best be off. I have a mountain of purpose to get to.
4:25 AM 1/15/2008
One of the exciting things from last Friday that I neglected to mention was a phone call from Cook Children's. Linda, one of our favorite transport nurses, was calling to make sure everything was in order for our bone marrow aspiration. The only problem was that we were not aware we were supposed to have one yesterday morning. It caught me a bit by surprise to say the least. I made a phone call and sent an email to Drs. Eames and Granger. It was not long before I had a phone call to let me know that it was being cancelled. Apparently this appointment had been made almost 3 months ago and no one knew that it was on the schedule. Unfortunately, the things that we would like to see are the CT scan and the MIBG. Those unfortunately were not scheduled. We will be rescheduling them hopefully in the coming weeks but it would not surprise me if that did not happen until we coordinated all of her scans near the end of February. Dr. Granger is supposed to be calling me to set these up.
Lynley gave a good mashing to Sydney's brain last night. It caught me by surprise. I had already nonchalantly tested her head to no avail. Of course, I did not communicate that to Lynley and so she went to town. She was straight forward about it and told Sydney exactly what she was doing. Lynley declared that she could not feel a bump and Sydney said that she was not going to tell her mother where it was. To me that is a good sign but you be the judge. I am just hopeful that it does not make another appearance.
Other than that there is nothing particularly exciting on the kiddo front. The only item that I have really begun to notice is that Ainsley never shuts up. I don't know when the switch flipped. She has always been the talkative one but, oh my goodness, the child is non stop. Over the last few days I have had the opportunity to spend some alone time with her. Yesterday while Graham was off with his mother and Sydney was off with DeeDee, I was with Ainsley. I was watching her and the Dallas Cowboys. However, the sound was coming from Ainsley. I clocked her. She spoke for 37 minutes without more than a ten second break. Can you believe that? I couldn't and even now I am in utter disbelief. How can a two year old have that much to talk about? She jabbers constantly when left on her own and without having to compete with her brother and sister. The next day I even had the opportunity to watch her with her brother and sister. I noticed that she talked for 19 minutes straight without interruption. Well, she was interrupted but that still did not keep her from stopping. I would love to proudly say it was intellectual conversation but it really is not. She is going through the 2 and 3 year old "Did you see me"s. You know, did you see me hiding under the covers? Yes Ainsley, you are a good hider! Did you see me under the pillows? No Ainsley, you are too good at hiding. Did you see me here? Did you see me there? Did you see me ask this question for 17 minutes without interruption? Yes, Ainsley! Did you see me ??????? Let's just say that even at its cutest even a mother can only take so much. "Did you see me"s are definitely her favorite subject but there are others. "Daddy, please get me"s follow a close second and "Daddy Graham hit me"s are never too far behind. Of course, "Daddy I love you"s are sprinkled in just often enough to keep anyone from placing her in a sound proof box or calling uncle to CPS. Yep, she is a loud and talkative one. I wonder where she got that. No, don't answer. A little peace and quiet please.
My purpose has an echo.
5:33 AM 1/16/2008
Good morning! At about 5:00 AM this morning Graham came down stairs and announced that he was up. This is about an hour earlier than his normal wake up time. However, we also knew that he would not go back to sleep. So this morning I have had some background entertainment in the form of SpongeBob Squarepants cartoons. The boy has always been the first up. Today we elected to allow him to stay awake instead of going back to bed. Frankly, in the mood that he woke up in, we were pretty sure that he would wake up the entire household if we sent him back upstairs. However, we will have to put a cap on this tonight because Graham will only wake up earlier tomorrow. Graham is funny that way. Without intervention he will wake up 30 minutes earlier everyday until he is not sleeping at all. Gee, I wonder where he got that trait. I am quite sure that it is not hereditary.
On the work front I have been very busy on a video for neuroblastoma. I just finished it up yesterday and now I am going through the process of getting all of the permissions I need to make it public. It has taken forever for me to get a couple of solid hours to make my way through it. I began the video almost 6 months ago and just never prioritized it above everything else. I finally had the time to make it a priority and I am pretty happy with the final product. I am hopeful that I will be able to show it soon. I have included about 40 different children with neuroblastoma in the video. When you work so hard on something you often loose perspective on its power to motivate. I must have watched it 100 times by now and it still brings tears to my eyes so I am hopeful that it will have that impact for someone that has no direct connection to neuroblastoma. I have shown it to a few others to get feedback and it seems to be rather well received. Only time will tell. I hope to make it public in the next few days.
Well I had best be off. I have once again found myself under a mountain of email and busywork.
I am off to another full day of purpose.
4:56 AM 1/17/2007
Good Morning! Yesterday I received a phone call from Dr. Granger. She called to figure out exactly what we were going to do regarding scans. Sydney is a tough cookie to figure out. Dr. Granger's first question was rhetorical. "Well, when was the last time that she showed any signs of disease? You know, we stop routine scanning of children after they have not shown any signs of disease for a year." I said, "a little over 3 years if you count the 'relapse' and 4 years otherwise." She said, "See." I said, "Do I need to explain relapsed neuroblastoma to you?" I think she did not appreciate that sentiment very much but I think she understood the manner in which I intended the statement. She knows relapsed neuroblastoma all too much. I quickly retorted, "Fine, I am listening. I have just never had very good reasoning to not scan as often." She and I spent about ten minutes on the phone debating the risk and value of each of the scans for Sydney." What value do they really provide? What relative risk do they have and what is the likelihood of them discovering her disease?"
There aren't any real good answers for Sydney, she has been through so much scanning she is at risk of a cancer from that radiation alone. Over time I have become a bit desensitized to my own personal beliefs as a father of a child with cancer. In other words, I have learned enough of the medical side and I have been exposed to that way of thinking to such an extent and talked to so many families that I can now see some of the reasoning through eyes that are a bit more jaded. In this sense, why put Sydney through more scans, increasing her risks from exposure. What are we going to accomplish? From my perspective as a Dad, we will catch it quicker and hopefully earlier. In this way we will be able to get on top of it more quickly. Less disease means more options and less disease to keep at bay. While not a proven fact, I would bet that most of the time less disease at relapse would probably also mean a significantly longer survival. So as a dad, I get it. I need to catch as early as I can so I can do something about it. I just have to way that against the risk of developing a cancer from all of her exposure to all of the testing. Let's do the quick math. Ct scan every 3 months for 4 years. Hmmm, what were the statistics that came out a few months ago talking about kids and CTs? Point being, she is already at some significant risk. However, I sure would hate to get through all of this. Beat the darn disease, only to have her be diagnosed with something else in her teens because of the radiation exposure. It is a tough call. How lucky are we? What is her risk of relapse? Complete unknowns!
From a medical perspective, one has to first do no harm and then debate the real value of all of the scanning. Exactly what are we going to catch given Sydney's disease and when? How much are we really going to save her? What is the likelihood of us really finding anything. Marrows are simply the tip of the iceberg. As Dr Granger pointed out, her relapse was debatable and even then we would not have detected it with marrow. It is such an incredible small sample the risk of false negative is astronomical. So marrows are just a very small window into what may be going on. The risk of anesthesia every three months and the risk of other complications outweighs those. Ct scans are way out the window. There risk is only beginning to be understood but it is greater than first believed. Sydney should be a glow stick by now. An MiBG scan is specific to most neuroblastoma but even Sydney did not light up at her "relapse" when half of her tibia was abnormal by MRI. In this sense, you have to believe that (a) she did not relapse or (b) she is not MIBG avid any longer. Given either of these scenarios the MIBG is probably not our best bet. It is a great tool for looking at metastatic disease but given Sydney's history I would say that the risks certainly outweigh its potential value. The bone scan is another tool that will give us pretty good insight into those boney metastatic lesions that she is probably most likely to relapse. The problem is that the bone scan is so non specific for neuroblastoma that she will be exposed to more radiation from false positives for neuroblastoma than she would if we kept her being fairly routinely scanned. If I was an oncologist I would probably pull the plug or limit them to once a year. Finally, the last set of noninvasive tests of potential value for a person with neuroblastoma are urine tests. Unfortunately, Sydney's disease has never been detected by those so the value of those tests would be useless. Given all of this, about the only test that I could really see some value in is an MRI but I can assure you that BCBS will not cover it for Sydney. Ironic isn't it. Yet again, they would deny something that would be in her particular best interest.
The fact is that I am once again finding myself being able to effectively argue both sides of this coin. I just don't know the answer. In the end I think we will move her scans to every 6 months and, even then, we will be performing a greatly slimmed down version. Lynley and I are still talking and thinking. Dr. Granger has basically left the choice up to us. I don't know the answer.
Purpose does not always provide them.
5:52 AM 1/18/2008
Good morning! Well, I am way behind on my diary this morning. By this time I usually have a clear vision of what I am going to write and after a few hours of work I am usually awake enough to be somewhat sensible. Today I have been knee deep in research since about 3:30 AM and lost all track of time. Since my brain is still there I guess I will tell you a little about it as I try and formulate what I am thinking. I was very excited to wake up and find the phase II protocol for the Nifurtimox study in my inbox. I have been eagerly awaiting it. Dr. Giselle Sholler, the primary investigator on the study, has asked the CNCF to fund it - at least partially. This is where I get to be very lucky and I get the chance to look at all of the nitty gritty of a particular trial and get to formulate an opinion. Within the CNCF there has been some significant interest in funding Giselle's work. However, the difficulty has been in getting any data to make informed decisions. This is less an indication of her unwillingness to do so and more an indication of her busyness in pushing to move her research forward so quickly. The difficulty for us who have a responsibility to all of the families and donors that have entrusted their donated funds to us is that we have to grant those funds responsibly. We can't give funds without strong preclinical data and some type of evidence that this is the best possible place that we can use those dollars to create the most difference. We want our dollars to speed the cure of neuroblastoma and for that reason we pride ourselves on being very careful and making balanced and unbiased decisions. Regardless, now we have the "stuff" so we can begin the process of making a decision.
First off, there are many things that I like about Dr. Sholler's work and commitment. She is moving incredibly quickly and she is creating options for children in areas that need it the most. For example, this phase II Nifurtimox trial is aimed at children in relapse and refractory settings. The major difference about this trial is that it carefully balances efficacy with research. In other words, she is providing an extremely valuable alternative for children. She is offering probably the best chemotherapy possible in a relapse situation along with a cocktail of experimental drugs. In this way, she is ensuring that children get the best possible treatment while trying to ask some important research questions. She has also cleverly designed her trials to try and answer these questions very clearly which is a very, very difficult thing to do. It is not that it is hard to do for the child or that it is hard to do for the investigator. It is hard to do because the more you mix and mingle the data the less interpretable it is. It can also make it very difficult to draw any conclusions from the work. This makes it harder for the parents and physicians to make decisions on whether one treatment is better than another. It also walks a very fine line in trying to decide on whether a particular agent is actually adding any value. In short terms, her designs helps kids respond to therapy but makes the waters muddy when you are trying to figure out what it all actually means.
This scenario has been my personal challenge to find out. I love that the trial is more likely to work for kids with relapsed and refractory disease but I also have to weigh that against the research value of the question being asked. Is this cure for neuroblastoma? Is the question worth being pursued? In its best case scenario how will this impact kids with neuroblastoma in the future? Ultimately I have to figure out a formula that weighs these options. How much value do I put on drugs that help kids now as opposed to the overall benefit for all kids with neuroblastoma? It isn't an easy equation.
Since I know there are those that truly believe in this study and Dr. Sholler's work these are the questions I am investigating. Feel free to send me your thoughts and comments. I am comparing Giselle's preclinical data response data to other known agents that need funding. It is also interesting to compare preclinical Nifurtimox data to known commodities i.e. other drugs that we currently use in neuroblastoma. How do they compare? How does Nifurtimox compare for example to the preclinical work in DHA, Accutane, Fenretinide, or antibodies, etc. I personally look for the same cell lines being used, logs of kill, and other measures. I am also looking at how previous combinations compare from a dose response perspective. How does the combination of Topotecan and Cyclophosphamide at the same dosing compare to the results from the phase 1 of Topotecan, Cyclophosphamide, and Nifurtimox. In a mixed population of patients where some had seen the drug Topotecan before how much of the required drug resistance had reverted back to its non resistant form. How much of the response can be attributed to Cyclophosphamide alone? Is the Nifurtimox response data from the upfront window where Nifurtimox was being tested alone meaningful? Are urinary catecholamines a sufficient measure? Could it be a drug mechanism unrelated to the treatment of neuroblastoma that is causing the catecholamines to shift? If Nifurtimox is sensitizing the neuroblastoma to chemotherapy are they designing their trial in such a way to sufficiently answer that question and to rule out other factors?
These are just a few of the questions that I am trying to find answers to and the research is very interesting. For those of you interested and, believe it or not, I know there are a few. Here are a few resource files to consider when beginning to try to evaluate the efficacy of this particular agent. I would love to hear the feedback.
The following is the phase II study of Topotecan and Cyclophosphamide. Note the response data. How does it compare to the Nifurtimox study? Is it clear that Nifurtimox is better or offers an advantage?
"Cyclophosphamide Plus Topotecan in Children With Recurrent or Refractory Solid Tumors: A Pediatric Oncology Group Phase II Study", Journal of Clinical Oncology, Vol 19, No 15 (August 1), 2001: pp 3463-3469
One of the reasons that we believe Nifurtimox may be providing value for patients is because many that were on the phase I study had already seen Topotecan. The following article talks about drug resistance and how it reverts back to being non resistant after a period of time. It specifically address Irinotecan but also makes comparisons with and evaluates Topotecan. Did Nifurtimox sensitize the cells to the chemotherapy or had resistance already reverted? Are there plans in this phase II study to rule this in or out? How does this information impact the response data? How many kids had not seen Topotecan? What is the human reversion window? How long is it? Weeks? Months? How many were inside the reversion window? How many outside?
"No topoisomerase I alteration in a neuroblastoma model with in vivo acquired resistance to irinotecan." Br J Cancer. 2004 Sep 13;91(6):1205-12.
Well I guess you can see that I am interested in weird things. I absolutely love this part of research. There are so many good questions to ask and so much more to learn. It isn't easy.
But, it definitely is purpose.
4:57 AM 1/22/2007
Good morning! Well, I survived the 3 day weekend. That little fact is always pretty impressive to me. It is quite an accomplishment, especially considering what I am up against. Trust me, it is no easy feat. The twerps are powerful opposition and far more difficult to control when they have been contained by foul weather. When they are stuck inside, the battle is only escalated. You just never know when you are going to walk out into the play room and see one of them tied to the ceiling fan and another climbing the bookshelves to get to the switch. They are masterminds of the inane. Insanity is their playground.
Most people probably would not expect a whole lot from a two and a half year old. After all, I have had two of them before. But this one, this current one, is the true culprit. A sweet little, cute little mastermind of evil wrongdoing and the first to instigate just about anything. I can't believe that she can so consistently surprise me on a daily basis but every time I think she just can't get any smarter she goes and does it again. She is clever, far beyond most everyone else, including myself. I shall give you an example. At school kids in Graham's old class used to have an incredible propensity for calling names. We were gifted daily with yet another version of some rancid name he had learned to say. By the way, since we moved him to another class this has improved 100 fold and he seems to be much happier. Regardless, there was not a day that he was not calling somebody a "bucket head," a "poopie head," or a "booger head." Honestly, most were fairly benign like "book head" or something ridiculous like that but still, we did not like the boy calling people names. We decided to outlaw, of all things, the word "head." Yes, in our family the current four letter word of maximal punishment is the word "head." You use it, you end up in timeout.
With Graham it seems that we would cure him of this name calling every weekend but it would only take a day back in the environment of school to get started back up again. Ainsley, being the little mimic she is, took onto this as well. Since "head" became such a taboo she jumped right on it. She knew that she could get the kids really riled up if she called them anything ending "head." She did it under her breath and tried to avoid trouble. It is just too excellent of a way to get under Graham and Sydney's skin. She also has a talent for coming up with some very creative and well placed combinations. That is not all too surprising as she has an incredible vocabulary. So much so that she calls her own bottom a "gluteus maximus." Yes, my 2 year old. I would take credit for it but she learned it from her tumbling teacher.
So, I guess you can see where I am going with this. A few days ago, we were sitting in the car and I could here the rugrats going nuts in the back of the car. There was some kind of pushing going on. There were hands going across the seats and Graham and Ainsley were at it. I t was mostly "he said, she said" but they were mad. This is a fairly regular occurrence as Ainsley absolutely loves to get Graham riled up. He is such an easy target and it does not take long for him to get upset. Ainsley, of course, loves to get it going just for that reason. From just about any point she can get the boy crying in seconds without even touching him. Being tired of the fighting in the back Lynley put a stop to it. Graham gave a mad cry as if to add an exclamation point onto the end of this battle. Ainsley laughed. The car grew quiet. All of a sudden we could here Ainsley trying to Graham started up again. She called him a "gluteus maximus head". Of course Graham tattled, Mom - Dad, Ainsley said head. We were having trouble keeping our composure. Graham had little idea of the brilliance that Ainsley had just stuck together. She came up with that on her very own. My daughter, my sweet little two year old princess, had just called my son a gluteus maximus head. Where did she get that. She had never heard that string of words before. She stuck that together on her very own. I could not believe it. I have never been so ashamed and yet oddly proud at the same time.
It was a new first, for me, the purpose-head.
6:02 AM 1/23/2008
Every once in a while you have one of those days where you just can't help yourself. You have to brag about your kiddos. Yesterday was just such a day. It was the day of the junior gymnastic Olympics at school. Just for Flips, a local company, visits various schools in the area and teaches extracurricular gymnastics classes to underage twerps. At the beginning of the school year we signed up Graham and Ainsley. They have spent the entire fall semester becoming expert gymnasts and this was our opportunity to admire their flippity floppity prowess. All of the parents and grandparents were in attendance. The funny thing about the class is that their are six boys that are about 4 years old and one Ainsley, age 2 and a half. She is the only girl and only about half of the size of all of the older boys. I am guessing that this will be a usual trend throughout Ainsley's life - being surrounded by older boys. Regardless, the games were about to begin.
The 7 children came in just like the real Olympics. The were all holding flags and waved them happily as they walked around the arena (the preschool cafeteria). Although it was not a competition, Ainsley was by far the best at marching. She kept those knees popping and there was no doubt that she took her marching seriously. The others just kind of walked around, but not Ainsley, she was committed. Gradually they all came to rest in the center of the gymnastic arena. The teachers then laid out the course. There was a forward walk across the treacherous balance beam, a cartwheel, followed by a forward roll down a foam wedge. This all culminated with a swing on the parallel bars. Each took their turn. I know this sounds biased but you should know me by now. I have no problem pointing out the good and the bad with my kiddos. So, when I say that Graham was by far the best and the cutest little boy of the whole crowd you can accept that as absolute fact. He was swift across the balance beam. His cartwheel was less horrible than all of the others. He was the only child to complete a perfect forward roll (nearly on his own) and he was the only child to carry his own weight on the parallel bars. He was at least one bar above all of the others.
They then followed this activity with another round through another set of events. This one included a backwards walk on the balance beam, another cartwheel, a backwards roll, and finally a flip over the parallel bars. Graham once again demonstrated his prowess. Although it was difficult to say who was best of the boys during this series of events he was clearly in the upper two or three if not the lone winner. In the end, all totaled, I truly believe he was the best boy. He stood proudly on the pedestal as they presented him with his gold medal.
Now you may wonder why I have not mentioned little Ainsley in all of this. You may wonder if she competed with the boys or in her own events against herself. Well, if you think she did not compete with the boys then you do not know Ainsley very well. She fears no one or thing. She did, in fact, compete with all of the boys. However, she was on such a completely different level of gymnastics than all of the boys I did not want to mention her in the same paragraph. She ruled. She had mastery of skills that the boys around her only dreamed of. She flew through each of the events and always left everyone smiling and in awe of the fact that she was so much better than all of the boys. It was not even close. She trounced them and did so looking about as cute as one possibly could. I was amazed. Watching them walk in, with them towering over her, I was sure that they would leave her behind. I was totally taken by surprise to find out how much more coordinated and graceful she was. I can guarantee that the other parents are wondering the same thing. It was hilarious. Ainsley rocked.
Purpose can really surprise you.
5:43 AM 1/24/2008
Good morning! It seems that the crud is returning to our house. Yesterday at a little after 11 in the morning we received a call from the school. Ainsley had a fever of over 101. I grabbed my super dad cape and headed out to the suburban assault vehicle. When I arrived at the school I found Ainsley in the front office. By all practical accounts she looked and acted fine. In true Ainsley style her jabberer was in full throttle. With a feel of her forehead I could tell that something was amiss. No matter, she happily skipped out to the car talking the entire way.
On the way home she slowed down quite a bit. She made the comment on a few occasions that she did not feel well. By the time we arrived home she had made a complete transition into a sicky. I carried her in, gave her a dose of Ibuprofen, and tucked her in to bed. Just for good measure Mommy raced home to give her a kiss on the forehead. It had only been minutes but she was already fast asleep. She would sleep until almost 5:00 PM.
Throughout the afternoon I went through my usual routine. I finished up some work and some important phone calls. DeeDee came over to watch over the squirt while I picked up the gluteus maximus heads (sorry, I still have not gotten over that) from school. Sydney came home with a green sticker which is one worse than the blue. She blamed me for it. Apparently there was talking at her table and she could not hear the teacher's direction over the mumbling. She then failed to follow the directions. I guess it kind of is my fault as I did not remember to put her kitty ears in earlier that morning. I asked her what the teacher said and Sydney said the teacher did not believe her. I find that highly suspect especially considering the silliness and poorish listening that I would witness over the rest of the afternoon. Regardless, bad daddy - bad, bad daddy- for forgetting to help her put in her hearing aides. I shall be better about remembering.
As an odd aside. We can almost always predict when Sydney will come home with a green sticker. Strangely enough it seems to directly correlate with days that she does not have her hearing aides in. It is interesting. I am less inclined to believe that it is because she is not hearing her teacher and more that she is modifying her behavior to compensate. Does that make sense? Regardless still, bad, bad daddy.
This morning Lynley woke up feeling under the weather and my nose is a bit stuffy. I think it is the weather change. I certainly can't afford to be sick. I have to be in New Orleans for the CNCF and then up in Chicago at the end of next week.
I can't afford to let the sniffles slow down my purpii - any of them.
5:52 AM 1/25/2008
I woke up at roughly 2:30 AM this morning so be prepared for crabbiness. It appears the rugrats have infected my with stuffiness and non-comfortable sleepiness. Typical. Twerps! Can't live with 'em. Can't live without 'em. Ainsley stayed home yesterday and it will be interesting to see what happens this morning. She has not had a fever in well over 24 hours but we have kept her constantly medicated so it is difficult to know exactly where she stands. During sleep she seems miserable. There is lots of crying and whimpering. During her waking hours she is the terror of the town, happily keeping herself busy running around the house. It is hard to tell where she truly stands. Yet another woman in my life that is an anomaly. Who figured?
Today is another busy day. Sydney has an egg drop at school that we are supposed to be taking pictures for the scrapbook. Lynley originally signed up for the duty but, now that she has been promoted and her job description has changed, she has found herself buried in meetings that can't be rescheduled. That leaves me to figure out how to manage being the class photographer and the nurse for Ainsley. I have DeeDee in my back pocket and I am hoping that the schedules work out. Only time will tell. I don't technically even know when we are supposed to be there and the teacher has not returned our email from a few days ago.
I would not me surprised if you do not hear from me on Monday. I have a trip to New Orleans on the schedule and I just don't know if the timing will work. I will do my best but I should definitely be back in the game on Tuesday. Well enough is enough.
I have purpose up to my eyeballs.
5:12 AM 1/29/2008
Good morning! Well, I am back from a whirlwind trip to New Orleans and I get a few days to relax before heading off to Chicago on Friday. I know it sounds busy but I was originally scheduled to go to Austin today as well. That little excursion was cancelled this morning I am somewhat happy to report. So, here I am back on my comfy couch at home. The kiddos are all doing well. Ainsley seems to have made a small improvement from the end of last week and thankfully, so far numbers 1 and 2 seemed to have skated by this little bug.
Although I am back in town, today will be another busy day. They are celebrating Sydney's birthday at school today so there is much to do. For some reason they chose this week to celebrate the summer birthdays. So today is all about birthday cake, snacks, and gift bags. Of course, we did not hear about all of the things that she would need for school today until 4:00 PM yesterday afternoon. That left Lynley in full scramble mode with the kids. Unfortunately, she was alone. My flight had been delayed due to a mechanical problem and I was stuck in an airport bar during the middle of Mardi Gras. Poor me.
The good news about my little hiatus is that I finally had some focused time to work on some items that I desperately needed to. I even got to write my first article for the CNCF. I selected a very non controversial topic but I think it should hopefully stimulate some interesting conversation and bring some issues to light. I hope to post it this week - which probably means tomorrow.
I am also working on two videos. I have finished working on one for the CNCF and I am working on another one of Sydney. I though it might be interesting for other families who are new to the world of neuroblastoma to see what Sydney thinks about treatment in hindsight. I know that when I was in that position with her I was terrified that we would ever come out of the other side of treatment being whole. Although we are certainly not come out sane I think a video may provide families a lot of hope that although they have an incredibly difficult road ahead there is another side. There is hope.
After all, that is what purpose is all about.
5:30 AM 1/30/2008
Good Morning! I am happy to report that all of the rugrats are doing well. Today, I finally published my first article for the CNCF. It can be found at http://www.cncf-childcancer.org/cs/blogs/under_the_microscope/ and there is even a video version of the article which can be found there as well. I tried to do a good job of explaining some fairly technical research without the article being too technical itself. I am trying to find the balance of good information for families without letting the medical lingo get in the way. I hope it is easy to understand and provides families with children that have neuroblastoma some value. The first topic I selected a was not controversial but one that I think would be happy to just about any child with high risk disease. I am hopeful that I can get some feedback and topics that would be of interest to families.
The video of the article is a different story and not nearly as polished. However, I think it will accomplish getting the message across. It is a totally different tactic with a far more relaxed media. I am anxious to hear the feedback from that as well. There is a link to it in the article mentioned above. Well, I had best be off. There is still a mountain to do this morning. I hope to hear great ideas on how I can improve these articles.
After all, everyone needs a purpose.
5:09 AM 1/31/2008
Well, something must have gone right. Yesterday the CNCF was listed in the top 5 of non profit channels because of all of the hits on my "Under the Microscope" video. I know it is not prime time news but I was pleasantly surprised that so many viewed the article. I can only hope that it helped someone. For those of you that missed it, the article can be found at http://www.cncf-childcancer.org/cs/blogs/under_the_microscope/ . And, watch this magic! The video is found below:
I am still working on my video with Sydney. Part of the issue is finding a time when she and I can just be alone together. As you might have guessed that can be an extremely rare occurrence in this household. Regardless, I have a pretty good idea of what we are going to do and what I am going to ask so I think it should do a fairly good job of getting across Sydney's perception of life. I honestly can't wait to film it. I just have to find the time and the place.
In the midst of all of this regular business, I am getting ready to fly out of town tomorrow. I am flying to Chicago for a CNCF board meeting. We have a packed agenda and I am hopeful that we can get through much of it. There is so much to discuss and plan. The CNCF is truly moving in a good direction. It is just a matter of getting the human resources to do all of the things that we want to accomplish.
Lastly but not "leastly" is Ainsley. I am really fighting the urge not to trade her in on a different model. This week has been awful for her and for us. She is a bit under the weather as far as we can tell. She still has a snotty nose but she is no longer producing fevers. Regardless, if the slightest thing does not go her way, she unleashes a crying and screaming temper tantrum that has so far been unmatched by the other two. It is pretty bad. From the time she gets up to the time she goes to school she will spend more time crying and screaming than she will being quiet. It is awful. Worse yet, there does not seem to be any remedy. For example, last night she asked that I take off her shoes. I plopped down and pulled off her left shoe and then her right one. Bing, bang, boom. Easy enough! Almost immediately she let out a scream and cry. "No Daddy, I wanted to take off that one!" She then screamed and cried for the next 30 minutes. It started on the bed as she madly tried to stuff her foot back into her right shoe but quickly moved to her bedroom where she spent time out. It was nothing short of ridiculous. It clearly is not Ainsley. Something is amiss. But, hey, not my problem! I am going to Chicago baby.
Okay, so, umm, please don't tell Lynley I said that. I will get in big trouble and, trust me, we don't need any more screaming around here.
I have a purpose. As usual however, I just haven't got it figured out.