A new era

Good morning! Would it really surprise anyone if I told you that I did not write yesterday because there was mass chaos around the Dungan household? Of course, not. There you have it. That is the reason I did not write - well, that, a bunch of work, and the fact that I was researching some terribly interesting neuroblastoma stuff. Regardless, I am back today on a beautiful Friday and one in which all of my Dunganlets are at home. Yes, everyone is home from school. Lynley is working a half day so we are making plans for what we are going to do with the kiddos. For one, I know that they will be going over to DeeDee's for an Easter Egg hunt. I have considered taking them to the zoo or to the botanical gardens but I just don't know whether or not we will have time. Fun is up in the air.

I guess I should probably also mention that today Sydney has a clinic appointment. This will mark the beginning of her new 6 month scan schedule. After almost 6 years of quarterly scans we will now be stepping off. It is a scary proposition but one that I am much more comfortable with than I was earlier in our journey. Let's just be clear. I am more comfortable with scans being further apart. I am sure that I will not be any more comfortable with the scans themselves. That is a mental leap that I do not think I will ever be capable of.

This set of scans also marks another very important milestone. Sydney is now officially 2 years off therapy. While that is no guaranty of success it is a very important milestone. It is also another important sign that we could actually have an upper hand on the monster. While I would never underestimate this disease, it is movement in the right direction. Getting two years out of therapy is a big deal. These set of scans do have quite a bit riding on them.

I should also mention that, while it is not a milestone, it is important to note that Sydney is also 4 and a half years out of her "relapse." We have not seen even a hint of disease in at least 4 and a half years and, if you fall into that group of experts that do not believe that we truly relapsed, then we are now well over five years since transplant and the last time we absolutely know that we saw disease.

I would never gloat and brag in front of the beast. I know what he is capable of. But, these are good signs that I hope we get to appreciate to their fullest.

I am hoping and praying for clean scans.

The fun begins next week.

Purpose marches on.

The unclogging of the antibody spicket

Good morning! Well, for a change, I have had a bit of normalcy. Yesterday, everything went off as planned and ended up with a nice evening, once again, in the back yard. Thankfully, last night, Ainsley did not seem to have a problem with the 'N' or the 'O' part. So, from the kiddo standpoint it was pretty uneventful. In fact, it was downright normal. It was perfect.

With all of that being said I had the opportunity to do some more research this morning. It was that time of the week where I get to sit down and really read some research. Over the past week or there have been several new articles published that caught my attention. I have always been intrigued by articles which involved the immune system and, especially in light of the recent ch14.18 findings, I am attracted to them more than ever. I am not only happy for the incredible results of the ch14.18 trial. That is fabulous news. What makes me even happier though is that it will eventually increase the supply of antibody.

Why, you ask?

Well, the problem that we have had over the last few years is that we did not have any antibody supply. Essentially, all we have had was enough for two trials and this came in the form of ch14.18 and hu14.18-IL2. With the trial ending for hu14.18-IL2 it today is no longer available - even with some pretty good results. By the way, this is not to say that 3F8 was not available. It was, but just in one location and for one or two institutions. There was no antibody supply for anyone else. In other words if you wanted to do some really interesting antibody research out of Sloan you could do the preclinical work but your hope of actually getting enough antibody to get it into kids was nil - zip - zero. No one was interested in investing large sums of money into the manufacture of a drug which we had no strong indication that it was going to impact survival. So, in essence, unless you already had antibody supply for your trial, you weren't going to get any. This has been a significant struggle for researchers who were interested in moving antibody therapy trials forward. I can tell you of several examples of great research utilizing antibodies with combinations of NK cells, chemotherapy, and a slew of other targeted agents. It is hugely promising work. Unfortunately, until now, they could never get these combinations into kids because no one was willing to provide the drugs. It was a huge struggle and source of frustration for many within the NANT and the COG.

In a nut shell, we had all of this extremely promising research and no drug with which to move it into kids. The good news is that it is my belief that these results will loosen up the drug supply (once manufacturing catches up) and we will begin to see a flood of great antibody work moving into our kiddos.

It will take time - not because the researchers don't care, not because any of the consortiums are too bureaucratic, not because there is some conspiracy. It will take time because drug supply will be an issue. Think about it. It takes more than a year to ramp up production of an antibody - assuming you can find someone willing to pay for it and manufacture it on your schedule. We just found out that this is potentially helpful for more than 80% of high risk children. We are going to have to go from about 50 patients a year to about 300 as we work to get antibody into all of the kids that need it. Somebody has a lot of antibody to make and we need to make sure they get it(where we know it impacts survival) before we start experimenting (where we hope it impacts survival.)

It will take time but it is a great sign for the future. Two months ago we were years (if ever) from seeing antibody availability in any meaningful fashion. Today it is on the horizon. Today we can see it coming.

We have to wait but great things are coming.

Here that - it is purpose coming.

The 'O' Part

Sometimes you really have to worry about our parenting skills. Last night I was sitting out on the porch with my blushing bride engaged in conversation. Earlier I had put a hose in the pool as it needed a little water. The three twerpateers were frolicking around the backyard playing. This was a fairly typical Spring evening around Dungan manor. All of a sudden I noticed one of the twerps grab the hose and start to play with it. I firmly asked them to put it down. You see, if I don't do that, the play would deteriorate to a full out water war. Within minutes I would have had 3 soaked kiddos. While I normally don't have problems with water play I must say that this brought concern as it was only in the 50s and we hadn't yet had dinner. This wasn't a particularly good time to become wet and shivering.

For a few minutes the hose was left alone. Then, out of the corner of our eyes, we saw it again. Twerp number 3 had grabbed the hose. "Ainsley, No!" was shouted from the bellows. She gave a smirk and retreated.

A few minutes later she did it again. This time she receive a firm "NO!" (capitalization and everything) Once again, she smirked and slunk off.

Not a minute later I caught her doing it again.

"Ainsley Dungan, I told you NO. What part of 'NO' do you not understand."

"The 'O' part!"

She was off.

Purpose, give me strength.

Hope Dungan

Well, Friday afternoon brought an early birthday surprise for me. After the title of this entry some of you might be thinking we have a new bun in the oven - you know, another Dunganlet to add to our twerp menagerie. Well in some ways you are right and in other you are out of your freaking mind. As much as I love our kiddos. Three is the official max. I am not octoDad.

So, no, no kiddos on the way. We did, however, make one very cute little addition to the Dungan household. He added Hope.

Hope was born on February 24, 2009. She is a Shetland Sheepdog and, might I add, absolutely adorable. You might be thinking "A dog, really Mark. Is that really what you needed? Did the Dungan Five Zoo really need another mouth to feed?" No, you are probably right on all accounts. However, I did have an ulterior motive.

First, you should know, I love Shelties. I had one starting at the age of 4. Unfortunately, over the past 10 years or so though I have not had one in my life. In fact, the dogs and cats were always chosen by other family members. I patiently bided my time until it was just right.

Why is now the right time?

Well, here comes my ulterior motive. You see, every 6 months my wife or the kiddos start pestering me for another animal. I am able to fend them off for a while but eventually I have to go out of town on business. When I do, mom strikes. Somehow, that business activity translates into another mouth to feed. I decided to put a stop to it.

You see, my mother has a new baby Sheltie as well. His name is Duffer. I figure these two will make an excellent breeding pair. In about six months everyone is going to be asking for a new animal. All I have to do is just ask them if they want to have puppies. We get her through her second heat and, bam, the timing would be perfect to start the having some puppies. It will be a great learning experience for the kiddos. It will fulfill all of their needs to have new puppies and by the time they are tired of them they will be ready to head out the door. Better yet, I get to sell them for $500.00 a piece.

This recovers by investment, covers my vet bills, and keeps me from adding any mouths to add in the foreseeable future. Whenever they want a new animal we will just have some new puppies.

Everybody is happy!

By the way, this is MY view of the world. So those of you with breeding experience or a clear vision of reality please refrain from commenting. This is how I am dealing with it. Let me revel in my success before reality sets in.

This, for me, is a very, very happy birthday present.

See, even Hope has purpose!

Secret mission

Today is the first of many surprises that will be coming over the weeks to come. Today I will be traveling to Houston with family in tow on a secret mission. You will have to check back on Monday to see what this is all about.

Yes, a mission with purpii. Intriguing....

Google for the purposefully imbalanced

Once a week, I spend several hours fingering my way through all of the current published neuroblastoma research. I do several searches on PubMed. For those of you who have a real life and aren't mired by the insanity of constantly searching for something - anything - that might hasten a cure, Pub Med is the National Library of Medicine's online database of over 18 million citations of medical articles. You can search on topics and get a listing of all of the medical articles that deal with that subject. Think of it as Google for research nerds and the purposefully imbalanced. While you can search on such generic terms as 'neuroblastoma' (and sometimes I do) you can also search on specific terms such as 'GD2' or 'ch14.18'. You can even combine terms to get really granular results. Regardless, each search returns pages and pages of results and links to abstracts (kind of like summaries). If you have access to a medical library you can actually take it one step further and even read the entire article. I am lucky. I have pretty robust access.

It probably would not surprise you to learn that I read almost every abstract about neuroblastoma. Even with some 27000 hits on the term neuroblastoma. I have found that I can get through the 15 or 20 some abstracts every week pretty quickly. It is actually the 1 or 2 that I really take interest in that take the time. If I find an abstract that interests me it usually leads to reading the article which then leads to more articles and the next thing I know I have spent 2 or 3 hour hours without even realizing it. That is just the world of neuroblastoma. I also often search on topics on other cancers looking for commonalities. For me, understanding the big picture helps me prioritize what I think is important. It isn't just if the science is good. Is the drug available? Is there better research out there? Is it feasible? How will it impact patients? When will it impact patients? How will it fit in to the overall treatment picture? How ripe is it for translation? What kind of impact can dollars have? The key to me is finding things that should be prioritized. It isn't enough that a drug is believed to have activity in children with neuroblastoma. To me, we have to know (or be very sure) that it is better than any other opportunity in treatment now or coming down the pike. It has to fit into the entire picture. If it isn't, it will be taking the dollars and the patients that could be used on something more promising.

There are good ideas out there. They aren't being funded.

So, what, in the heck does all of my research do? It keeps me sane. It keeps my eye on the ball. It keeps me sure of the direction and gives me confidence that much of what is in clinical trial is what should be in clinical trial. That is not to say that there are not things that should not be in clinical trial. I can think of a few. Thankfully, though, Lunch for Life is not funding any of them.

Bottom line, what really started this diatribe this morning was what followed a few hours of research. On one hand, I am so desperate for a cure that there is never enough. But on the other hand, I am amazed by the number of people that are studying neuroblastoma. Think about it, I read over 20 neuroblastoma abstracts a week. That is at least 3 a day. That is 3 research projects completing a day and that is only the ones that are being published.

There is a mountain of research. It makes me think - Why aren't we further along? Are we prioritizing the research we do correctly? What are the real obstacles? How can we change it?

It is a very loaded question of purpose.

The behavioral roller coaster

Good morning! It was another day around the Dungan household. I am pleased to announce that, for a change, Sydney did not present with an ailment yesterday - no headaches, no stomach pain, and no leg pain. I must admit that it was a relief and I am hopeful that the trend continues. The rest of the gaggle is good. Well, I should say all but Ainsley. Ainsley is not sick. She is not feeling under the weather. Ainsley's problem is violence. I am beginning to think that it is just an age thing. I remember Graham going through this very clearly. He would hit anything that made him mad - even some of the things that didn't. I seem to recall that he went through this episode when he was between 3 and 4 years old. I am happy to say that he snapped right out of it. And, look at him now. He is now the picture of sweetness and consideration. Sydney went through this too. Frankly, though, I always assumed she had the right to. Anyone enduring the things she endured certainly had the right to release some pent up anger. She, however, had it at an older age. The good news is that, for her as well, the year of the mad monkey quickly passed. She, too, is now the picture of sweetness and consideration.

Ainsley, however, is not. She is more like the picture of bitterness and violence. She is just as likely to hug her brother and sister as she is to smack them up the side of the head. She is also going through a period of defiance which I seem to also recall from the other two. (Yes, even at my tender age of 37 much of what the children do that I do not write down leaks out of my brain and into oblivion.) The good news is that they all seem to recover. The always return to the normal loving twerps that we have worked so hard to cultivate.

Ainsley, though, is trying out patience. I am beginning to wonder if that pattern will hold. She has always been the sneaky one and the one I most worry about as she grows up. She will be my partier. I am already losing sleep just at the thoughts of what I can imagine that she will do. The good thing that she has going for her right now is her cuteness. In fact, that may be the lone reason that she hasn't been traded in on a friendlier model. Thankfully, this, we know will soon pass.

Wow, I feel sorry for her future boyfriends.

They will need purpose.