A sign from Sydney

A couple of times a week I scour the medical journals for neuroblastoma articles of interest. It is a habit I got into that is just about as reliable as me writing in my diary. It is a great exercise and their isn't a day of reading that I don't find at least one or two articles worth reading. You should know, that is about my limit though. Of the 50 to 100 abstracts I peruse most of the research is too early to be on my radar. As I have mentioned before, there are thousands of things that can kill neuroblastoma in a petrie dish. The problem is picking the winners - of these 1000s of drugs ultimately only 1 or 2 of them may truly be of value to kids. This points to the importance of preclinical research. We need to pick the winners while research is cheap. Once the research is moved into the clinic it becomes far more expensive and time consuming.

Regardless, I am off the point.

In this morning's scouring I found a great article from, of all places, Sydney, Australia. It is a subject that I am quite passionate about considering my own Sydney. The article, "Hypercalcemia and osteoblastic lesions induced by 13-cis-retinoic acid (Accutane) mimicking relapsed neuroblastoma." This is the first published article which deals with the lesions that have appeared on Sydney. This article is about a boy from Australia that had similar treatment to Sydney. Most importantly, he had both antibody therapy (ch14.18) and Accutane. Similar to Sydney he developed lesions after treatment. While these lesions appeared like relapsed neuroblastoma they were, in fact, not. One of the key signs here was that he was positive by bone scan and negative my MIBG - just like Sydney.

I tell you this for two reasons. First, if you run into this situation there is reason for hope that it may not be neuroblastoma and second that you proceed cautiously. After all, we put Sydney through 2 additional years of therapy based on similar findings and it is now clear that it may never have been a relapse. Given her most recent lesion (which is now over 1 and a half years old) it seems we have even more evidence that her "relapse" almost 5 years ago may not have been a relapse at all.

The abstract draws the conclusion that the osteoblastic lesions are most likely a result of the 13-cis-retinoic acid (Accutane) but I am yet to be sold. I am anxious to read more to see why they draw that conclusion. I still believe that the immunotherapy might also be suspect. Unfortunately, I was only able to read the abstract here: http://www.ncbi.nlm.nih.gov/pubmed/19492317. It seems that the full text article is not available through our medical library. I am hoping to get it through other means in the next few days. Hopefully, by then, I will have even more information and clarity. I am happy to see something finally in print. While I have personally met many other families of children with this side effect I have yet to find anything definitive. Suffice it to say, there are many kids out there that face this issue and it is something more parents need to be aware of.

See, purpose from a friendly place.

Successful Eighting

Yes, you read the headline. We have a full fledged eight your old. Sydney spent her birthday at, of all places, the Fort Worth Zoo. I should probably also mention that this was also a belated joint birthday party forAinsley. So, in that sense it was also a fouring. We had a pretty good crowd of all of their friends and a good time was had by all. My blushing bride did a phenomenal job of entertaining them with projects and crafts and the zoo was as good as ever. I was happy to say that my kids actually saw some animals this time.

You see, when you have a party at the zoo, you get your own private exhibition. They bring in 3 or 4 animals for your own little showing. This was great because as we made our way out and into the zoo there was far less animal viewing and far more of what my kiddos think the zoo is all about - rock climbing. To celebrate Sydney did her usual best and made it all the way to the top to ring the bell. She has conquered the easy and medium climbing walls and just has the expert left to master. It is always fun to watch her ease her way up to the top and then watch the 9 and 10 year old boys behind her fail. She really is pretty skilled.

Okay, so we saw some animals and we rock climbed. I think the treat for the girls was actually in the air. Cupid appeared to be throwing arrows all over the place. For Ainsley, love came in the form of Zachary Rogers - the love of her life. Once he showed up it was all Zachary - all the time. They spent most of the day holding hands. They were inseparable. You might be wondering how I handled all of this. Well, it was an easy choice for me. For what I expect from Ainsley, Zachary Rogers is perfect. No tattoos, no motorcycle, no Mohawk. I fear it can only go downhill from here.

Sydney seemed to be pierced by one of Cupid's arrows as well. She and Jonathon (Claudia's son who also spends the days with us during the summer) were down right giddy with playfulness. They kept chasing each other around. I have never seen so much flirty play. While neither one of them would ever admit it (in fact, they would fervently deny it) I can certainly tell you that something was in the air.

It ought to make for a very interesting summer.

I am glad she is getting better at sparring in Tae Kwon Do.

All in all, it was wonderful. For me, it was sentimental as I realized that she has finally reached a point in life where she has spent more time out of treatment than in it.

That is quite special.

And one reason that my purpose is so strong.

Texas fried parents

Well, unfortunately, I did not come back with any pictures. Instead, as a treat, both Lynley and I came back with significant sunburns. Not to worry, we were, of course, wise enough to cover our kiddos from head to toe in sunblock. We just weren't wise enough to cover ourselves. We though I little bit of sun would not hurt us. We thought a tint of color might be nice. We were wrong. We are idiots.

There I said it.

I guess it isn't exactly true to say that we were the only ones who got burnt. It would be more accurate to say that we were the only idiots in the Dungan five to get burnt. Sydney also got a little burnt but that had less to do with our own stupidity and far more to do with an evil new form of sunblock. You see, for the kiddos, we used traditional sunblock on their bodies - lotion or spray and we rub it in. It is dependable and the coverage is good. However, on their faces, we used this new kind of sunblock which looks like an over grown chapstick. The problem with the chapstick variety is that you can not see what you have covered and, unlike lotion, it does not spread. It only covers what the top of the chapstick covers. We apparently missed two stripes right under Sydney's eyes. She looks a bit like a football player that has black stripes under the eyes except, of course, her are bright red.

This fasion trend comes just in time for Sydney's 8th birthday. Yep, tomorrow, she turns one year older.

Pretty impressive, huh. Wow, it makes me think. We are so unbelievable lucky.

We have been blessed with purpose.

Playing Hooky

Today, Lynley has taken the day off from work. I too am going to take the morning off. If all goes as planned we should have an absolute blast. You see, the Dungan five are heading to NRH2O (a water park) with the kiddos for a few hours of fun this morning. I am somewhat concerned about the coolness of the water but I am quite sure that a blast will still be had by all. I simply can't wait. We will be sure to take some pictures and I am even more sure that we will have some great stories to tell tomorrow.

Ooh, Lynley just found several packets of sugar hiding in the drawers of the bathroom. Ironically, Ainsley just came down the stairs a few minutes after. I asked Ainsley if she knew anything about the packets of sugar.

I could watch her brain processing.

She whispered "No Daddy, I love you."

TWERP!

Until later.

Purpose thrives.

That is not appropriate

You know, you learn a lot about yourself through your kiddos. In fact, I can honestly say that I have identified many of both my learned and my genetic behaviors through the twerplets. Most importantly, through them, I have been able to see, first hand, my most annoying traits. They say that imitation is the sincerest form of flattery. I just wish they would pick my some of my better traits to imitate.

Have you ever been told your behavior is "inappropriate" by a 3 or a 4 year old?

No, well I hear this statement on a daily basis. To almost anything I say or do Ainsley can find something inappropriate about it and she is the first to point it out. How irritating! I wonder where she got that from?

Last night we were sitting around the dinner table. As usual, everyone was wanting to say the prayer. It is a battle in our house. On some occasions we will spend as much as 5 or 10 minutes listening to each of the kids deliver their own dinner prayers. This is often complicated by the fact that it is always difficult to get everyone to sit at the table to get started. Ainsley and Graham always have to go to the bathroom they moment the dinner bell rings. Sydney is often reluctant to get off of the computer or to pry her nose from a book. Her mother is the same way. Additionally, there are always items forgotten. So, Lynley or I are constantly getting up to get the ketchup, new napkins, or whatever whims the kids can come up with. The point is that getting dinner to the table is not a problem. Getting people sitting at the table definitely is.

Last night as our effort to sit at the table kept drawing on I kept seeing our dinners get colder and colder. Ainsley was the culprit on this occasion. She was in the bathroom washing her hands for the third time. The rest of the kids were fighting about who was going to say the evening prayer. I knew this was going to end up in a situation where everyone had to say their individual prayers. My dinner was going from cold to frigid.

I had it.

I told them I would say the prayer and that would be it. I was not creative.

"Thank you for our food. Amen."

That was followed by "Thank the lord. Now we can eat."

Ainsley apparently could not hear me very well as she raced to the table. The next words out of her mouth were "Daddy, you said spank the lord. You can't say that."

"That is not appropriate!"

Everybody had a hearty laugh. Ainsley, however, was still very disappointed in me.

Wow, was that what I looked and sounded like.

Maybe I need a spanking.

Regardless, I just wish they would copy my purpose instead.

A day of relaxation

Day 1 of summer went off without a hitch - or at least that is about all I know. In fact, I was down right undaddy like. Outside of lunch I did not see or hear my kiddos. I was completely selfish. I worked. I am happy to report that the kids appeared to have an extraordinary day with Claudia. Apparently, they played at the park, swam in the pool, destroyed the playroom, and played some mean games of tag. I was happy for them but I must also say that I was ready for the break. I was ready to get some work done.

I know that doesn't sound too loving of me.

But, what can I say, I was ready. Now I can hopefully restore some balance.

I have got purpii everywhere.

Summer begins!

Good morning! Summer is here and Lynley has pulled out all of the stops. In fact, on Saturday, Lynley took control and we took a mini vacation. We loaded up the family station wagon with dogs and twerps and headed for Mineral Wells. There was a quick stop by Walmart for snacks, water, and a few fishing poles but, outside of that, it was primarily a beeline for rest and relaxation. We were there within about a hour.

We started out with a brief hike. The kiddos loved the opportunity to run through the woods. There was certainly an air of excitement about them. It is truly great fun to watch the wonder and surprise in their eyes. In brought back memories from my own childhood of exploring the wild near our house in El Paso. Their were lizards, spiders and everything wondrous in the eyes of a child. Somehow, I had remembered these types of exploring activities as being much less tiring than I was experiencing. I was amazed at how quickly I started to feel the burn in my calf muscles. It became clear very quickly how out of shape I truly was. Regardless, the kiddos marched on. THe clearly had no sympathy for my poor physical condition. Suck it up, Dad.

It was not long before the kids were ready to fish on the banks of the lake. If I am being honest, I never really though we would catch anything, but I thought it would be fun. I was right on both accounts. We spent about an hour fishing the edges of the lake and everyone had fun. There was some excitement as we stumbled upon a water moccasin swimming along the edge of the rocks. Good for us we was not interested in coming up onto the dock where we were fishing. I was sorry that we did not even get a single bite from a fish and a little surprised at how much fun the kiddos had even though there was no actual catching of fish. In fact, an hour later (and ever since) they have been begging to go back fishing. I can;t imagine what their excitement will be if we actually catch something. I can already tell that we will be going back soon. I don't know whether we will make the trek all of the way back to Mineral Wells but it would not surprise me if they talked us into going to one of the local lakes in the next few weeks.

The rest of the weekend was fairly uneventful but full of swimming for the kiddos.

I guess the big news is that Miss Claudia will be make her first appearance of the summer at the Dungan household. The kiddos can't wait and neither can Lynley or I. It will be a summer of fun and, hopefully, a little learning as well.

Let the Summer of purpose begin.