Cluelessly on the road

Well, unfortunately there is not going to be much of an update today. This morning I have to take DeeDee to the airport at about 5:30 AM. So, that will carve out about 2 hours of my morning. What I can tell you is that we are no closer to knowing whether Sydney has chicken pox or what a belly button snatcher is. There you go. Now you are in the dark as much as I am - literally.

Purpose rolls on.

The sneaky scratcher. Is it Twerp Pox!?!?

Lynley has another diagnosis. This time I sincerely hope she is wrong but she has a pretty good track record. Last week some bumps appeared on Sydney's head. You may remember the great debate - I thought they were buggish and Lynley was quite sure they were something less benign. Dr. Debbie took a look at them and deemed them insect bites. Of course, I gloated. You see, I may know a lot about neuroblastoma and its treatment but I am a complete idiot when it comes to diagnosing or treating anything else. I have no medical training. That is were Lynley is the more capable one. I usually defer to her. She is almost always right on the money. She is uncanny that way. I stick to neuroblastoma. That, I at least understand.

So, over the weekend, these bumps multiplied. They also appear on her torso and her hands. When I first noticed them on her belly on Sunday I noticed that they were really inflamed, almost like a welt. I had assumed that they were more insect bites and that she was scratching them. On Monday they started to appear on the back of her hands. Now she is covered with 20 or so red bumps - most of which have scabbed over in the middle. The bumps are itchy and the biggest problem seems to be simply keep her from going after herself. Sydney consciously knows not to scratch but simply cannot stand it. She has begun to sneak off away from us just to scratch. Caladryl seems to do the trick to reduce the itchiness but it does not seem to last very long. Sure enough after a while we will notice that Sydney has snuck off to scratch were she will not get caught.

So, Lynley has made the official diagnosis - chicken pox. She seems pretty sure of herself to. Myself? Well, I don't know and I have never had chicken pox so I am staying far away from Sydney. Until we know more she and I have delighted in across the room hugs and air kisses at night. We went through this scare last year and Sydney remembers all too well. Daddy can't get chicken pox. Today we will have to find out more. I imagine that we will need to sneak Sydney back in to see Dr. Debbie. I, on the other hand, get to go back to the dentist for more fun. I am just hoping that this will be my last trip for awhile.

Graham just came down stairs and asked for me to turn on the television. I told him that I could not find the remote. He suggested that maybe the belly button snatcher took it. Wow! Too funny! I can't wait to hear about this. I did not even know that there was a belly button snatcher.

A day of purpose awaits.

Voice

Lately it seems that I have some type of neuroblastoma function every couple of days. I can't say that I am to blame for all of them but I can tell you that I am extremely happy about it. Considering the fact that many of us never even heard about the disease before Sydney or one of our other children was struck with it, I think we are making huge strides. I know I am right in the middle of it and am therefore surrounded but I am really pleased with the amount of time that I am hearing the "n" word. There is no doubt that we are making progress. Over the last five years I have gone from attending a neuroblastoma event once a year to being to a different one at least once a week. That is how we get the word out. That is how we give the children voice.

A few weeks ago I heard a very impassioned (although long) speech about giving our children voice. It was given by another mother of a child with neuroblastoma. Frankly, it was one of the better speeches that I have heard in quite a long time and, without a doubt, the best I have ever heard that mentioned the word neuroblastoma. In fact, I was disappointed it was not my own. The speech has totally reinvigorated me. It is not that I do not love fighting for children everyday. I genuinely love to get up and meet this monster head on everyday to fight. It drives me. It is how I breathe. It is extremely rewarding because every time we take a step forward I know we are getting one step closer to a day when another child will not walk into this world. I certainly had the passion for the work before but I was missing something. I was going through the motions and was working hard but I was missing some ingredient that I could not put my finger on. This speech gave me that.

To this day I can not put my finger on what was missing but I can tell you that my mind is working like it never has before and my passion for what I do has grown ten-fold. So when I have weeks like this that seem jam packed with interviews, meetings, and engagements I can barely contain my incredible excitement. I know I will have another opportunity to make a difference. I am literally experiencing a revolution in my head. I am so thankful for the opportunity to get to do what I do everyday. As nasty as the disease is and as much as I hate that my daughter has it in many ways I am the luckiest man in the world.

Thanks Ann, for the reinvigoration. I know what you said but I don't really know why it hit home so much or why it has affected me so strongly. Words are powerful. Thanks for giving me my voice.

My purpose is louder than ever.

Another whirlwind weekend

Good morning! Yikes, Monday sure snuck up on me quickly. I guess that is the price I take with these quick trips to Houston. The good news about my trip to Houston was that the 2nd Annual Amazing Grace Golf Tournament was a complete success. There were several neuroblastoma families at the event and all had a great time. All in all, I think they raised about $40,000.00. It was a good, good day for neuroblastoma. I am glad that it was so good because, in reality, the money was already spent. Truth be known, it was the anticipation of this event and its success that lead us to be able to fund an extra junior investigator grant this year. That is a significant commitment because each of those grants that we fund requires $100,000.00, or $50,000.00 per year. By knowing this event was on the horizon we were able to take that next step and get the research moving forward. The ironic thing about the particular grant that was selected was that the research was also being done in Houston. So after a quick trip to the Midwest the money will be slung right back down into their neughborhood. I guess it was meant to be.

It was great to get back home and see the kiddos. They spent Saturday at Mayfest and then their weekend was jam packed with activities. Yesterday morning was all about chores and the afternoon and evening were all about birthday parties -- two in all. Dinner, a walk around the block, and sock folding got us to bed and everyone slept comfortably. Surprisingly, they are all fast asleep as I write. I guess that is evidence of a truly good weekend.

Well, I am off. I have a photo shoot this morning, followed by a conference call and a meeting of the L.O.V.E. club, a group of neuroblastoma families from Cook's. It looks like it will be another busy day.

This is the way I like purpose.

A hat trick?

Well, unfortunately your are going to get the "annoyed" version of this diary entry. I just spent the last 30 minutes drafting the perfect diary entry and then somehow it disappeared while saving. It is really pretty disappointing because it was a great entry. Now you are going to get stuck with this crappy one. Oh well, good news must go on.


So, yesterday was a trip to the dentist for Sydney. I am shocked to report that her loose tooth may have absolutely nothing to do with late effects from treatment. Sydney seems to have a condition known as tongue thrust. For all of you tooth nerds out there, it is Sydney's right mandibular lateral incisor (26) that seems to be of issue. For all of you regular nerds like myself, this is the tooth just to the right of the middle two teeth on the bottom. The dentist likened Sydney's tooth loosening to a fence post. When you put a fence post in the ground it is very firm but, over time, as it is rocked back and forth, it eventually loosens. Although you probably won't be able to pull it out, it will just become looser and looser. The same affect is happening in Sydney's mouth. Every time she swallows her tongue is thrusting against her bottom teeth and this pressure is loosening her teeth. The tongue is a very strong muscle. Normally, we place our tongues on the roof of our mouth when we swallow but, somehow, Sydney has learned to do it by placing her tongue against her lower teeth. So, what do we do?

Well, as it turns out there are actually dental appliances that can be installed in her mouth to help correct this behavior. Unfortunately, these can be uncomfortable, can cause abrasions on the tongue and can cause speech issues. None of this sounds fun for Sydney. In the end, we elected to "train" Sydney to swallow differently. Believe it or not there are whole programs on tongue thrust and over the next 3 months we will take her through a series of exercises designed to teach her to swallow differently. Hopefully, this will alleviate the issue.

So, there you have it. Another benign ending to a potentially malignant situation. This completes our hat trick of auspiciousness.

Now, you know I would not have left without pestering the dentist with some hard hitting questions. Does this really mean that we can rule out late effects? Could this actually be caused by a malformed tooth? Could we be dealing with some kind of necrosis instead? His answer was that this was all still possible. However, he was leaning towards a more benign cause simply because she is not showing signs of other problems that would be consistent with these other maladies. Her teeth seem to be in good condition and her gums are healthy as well. This issue seems to be localized and there do not seem to be any other contributing factors. For the time being we will work to correct the issue we know we have and hope that it fixes loose tooth.

Well, I had best be off. Now that I have written this entry twice I am now further behind. Plus, if I am being totally honest, I am very excited to get back to working on some projects for the CNCF. I am doing some very, very cool things. Additionally I have a day full of meetings and tonight I will be driving to Houston for the 2nd Annual Amazing Grace Golf Tournament benefiting the CNCF.

I have purpose plastered all over the walls today.

Twofer of good news

We struck official ear infection. After a trip to see our dear Dr. Debbie the girls' diagnosis was confirmed. Ainsley has an ear infection in her left ear. She is now on Augmentin and, I am quite sure, well on our way to a cure (these curable diseases sure are fun) Regardless, I could not be happier. It looks like Ainsley's demanding moodiness and constant upset is less a sign of bad parenting and, in fact, completely attributable to the infection. She is sick physically, not mentally. Can't blame this one on me. I take special enjoyment from that because most things around the house can be blamed on me.

While at Dr. Debbie's I talked Dr. Debbie into settling our disagreement regarding the bumps on Sydney's head. She confirmed my diagnosis - bugs, not nasty neuroblastoma. I was pleased. This was a twofer of good news. I elected not to push my luck any further. I wanted to save the rest of my good news for Sydney's dentist appointment today to see if we could pull off a hat trick. I am not anticipating good news but I can certainly hope for it at least.

Dudely is doing superbly. In fact, he is on the couch with me now as I type. He and I are fighting for leg space on the middle pillow while he watches (of all things) SpongeBob. He is a big fan of Tivo. I asked him if he would like to add anything to my diary entry. He said no (with a smile). There you have it. I just don't know where the boy got his shyness. I think I will blame SpongeBob for sucking out his confidence.

Well, I had best be off. There is much to do and the rugrats are rustling.

Purpose plows on.

As if I don't have enough to worry about

Okay, okay, okay already. So, here is the status. I would never contradict the female contingent in our house. I know better. All I am going to say is that Ainsley did not complain about her ear hurting all day. Furthermore, when asked if she had an ear "owie" she said "No!" (go figure, a two year old saying that!) Despite this apparent lack of ear infection-ness she was certainly out of sorts. It is clear that she is not up to par. She is whiny and cries a lot which is the complete antithesis of Ainsley. In the big scheme of things this is easy. We just have a sickly twerp. I can deal.

Sydney, on the other hand, is a bit of a different deal. She is collecting maladies like I am collecting grey hairs. Her latest oddity is an assemblage of bumps on her noggin. Lynley is pretty concerned about them and myself, less so. I will be blunt. Lynley thinks they are neuroblastoma. I think they are a very strange presentation to be neuroblastoma. I think they are more likely to be some kind of bite. Lynley will quickly point out that if they were bites why would she have 3 of them on her head and the other kiddos do not have any signs. My thought is because she is a twerp that is constantly rubbing her head on the dogs - don't ask. Yes, I guess I am making the inference that my daughter has fleas. Lynley does not feel any better. Anyway, there are 3 little bumps about an 1/8 (to a 1/4) of an inch in size that are placed on almost polar opposite sides of her head. One is just above her right ear. One is on the north pole of her head. The last is somewhere between her left ear and the top of her head. If she were a globe I would put it at about Seattle, Washington. To me, they all look the same but Lynley thinks the one in Seattle is a bit bigger. According to Sydney, it is the most painful of the 3. They only appear to hurt, however, when you press on them. Anyway, I am no expert on neuroblastoma metastasis on the skull but I would think that we would see a larger raised area and some differentiation in the sizes of the 3 spots. But who knows, every kiddo is different and it is not like we have ever seen skull mets on Sydney.

So, although cute, Sydney is quite the mess. She has a "growing" spot inside her arm, a loose adult tooth, and 3 bumps on her head. This goes without saying that she is covered in her usual garb of scratches, bruises, and abrasions. I am continually amazed by what she does to herself. Regardless it is plenty to think about and we really do not need anymore at this particular time. The good news is that we will see the dentist tomorrow afternoon. As for everything else, well, I think we have to sit and watch patiently.

Purpose is an entirely different thing when you live with the monster in the back of your mind.