Wednesday, April 29, 2009

Don't call CPS

You know, yesterday morning I was sitting around thinking -"How did my kiddos get sick?" Frankly, with all of the coverage on the news regarding the swine flu, I could not rule that out either. After all, Ainsley's presentation wasn't altogether typical. She never truly tested positive for strep. So, being the responsible father,I started thinking of all of the places we had been over the weekend. We had visited the zoo. We had been to both parks and schools. Wow, in hindsight, we really were walking typhoid Marys. We had done just about everything you would not want to do in a flu epidemic outside of licking the escalator railings at a mall in Mexico.

And then... I remembered this picture.

(Although you can not see it well Sydney and Norman are in the back.)

Put down the phone! Before you call CPS, I deserve at least one small explanation. You see, this weekend we decided to take Duffer (my mother's sheltie) and Hope (our sheltie) for some shots at the vet clinic. The kids love going to the vet clinic - honest. Anyway, while we were helping Dr. Bob with another patient the kiddos decided to hop into the cages with the puppies. Much to their chagrin (and our laughter) the cages were self locking.

So, you must be thinking, Mark and Lynley took their kids and exposed them to every possible disease imaginable. When all of that did not work, they stuck them in the pig cages at the clinic.

In my defense, these are canine cages. So, the most that I might have exposed them to is canine flu and perhaps some fleas. In reality, I actually kind of fear the poor sick animal that would have had to be in that cage after it had been occupied by my grubby little band of twerplets.

None the less, I think we might have skated by this one without actually causing too much damage. Eventually we will get this parenting thing right.

Until then, our purpose plugs on.

Tuesday, April 28, 2009

Strep X 2.5

Well today should be very, very interesting. I have two and a half cases of strep at the house. Both Ainsley and Graham will be staying home from school today. According to Dr. Debbie, Graham tested "a little bit" positive. I asked her if that was anything like being a little bit pregnant. She said yes. By the way, we had this conversation right in front of Graham so it would not surprise me if he begins to tell everyone he is "like" pregnant. Within minutes he and I were back on the road on our way to CVS for some antibiotics and prenatal vitamins.

Ainsley was less clear. She was a rather odd case. Believe it or not, she had been doing just fine. However, yesterday, before her nap at school she began to complain that her tummy hurt and that she did not feel well. By the time she woke up she clearly had a fever. I decided to go ahead and take her by Dr. Debbie's as well. We made a beeline to pick up Sydney and then made our way back to the doctor's office. There we discovered Ainsley had a 104 degree fever. We quickly dosed her with some Tylenol. Ainsley's throat was covered with little red sores. Surprisingly, she tested negative for strep. However, given the sudden onset and inclusion in the Dungan family Dr. Debbie decided it would be best to treat her as well.

While we were there we also asked Dr. Debbie to give Sydney the once over. She was beginning to complain (independently) of a scratchy throat and had some sinus symptoms as well. In the end she tested negative for strep but was ushered some antibiotics as well. It is also interesting to note that we reloaded her on her super combo of Astelin, Nasonex, and Singulair in an effort to regain control of the sinus thickening that we rediscovered on her CT scan.

So, everyone is fully medicated. Ainsley and Graham will both need to stay home today. Sydney will be headed back to school with the hope that we may have caught and addressed her exposure before anything becomes evident.

You should know, everyone seems fine this morning. I think this is going to be a rather rowdy day at the Dungan household.

It will be a day full of twerp purpose.

Monday, April 27, 2009

National Awards for Neuroblastoma

Many of you may remember well over a year ago that GCG began helping the CNCF with an awareness campaign. They did not only help but, in fact, they provided most of the work for free. GCG even convinced Geno Loro, a brilliant photographer, to provide all of the photography pro bono. He spent several days taking pictures with many of our kiddos. Of course, Sydney was one of them.

GCG Marketing today announced its award of Best Philanthropic Campaign at the 2009 Med Ad News "Manny" Awards for its work for the CNCF. The campaign featured gripping headlines alongside portraits of children living with neuroblastoma, with the goal of creating awareness of this deadly type of pediatric cancer.



“We’re especially proud of this national healthcare award because it honors the creative passion of the GCG team and the stellar photography of Fort Worth’s Geno Loro, Jr.,” said Neil Foster, GCG Marketing president. “We appreciate the recognition and hope it will help raise awareness for CNCF, an organization in which we all feel a personal investment.”

The campaign also garnered local and district ADDY® awards from the American Advertising Federation for this campaign, and is currently under consideration for a national ADDY® award. To view the agency’s 15-second entry introduction video or to see samples of the work, visit www.gcgideas.com.

I can't tell you how proud anf thankful I am of their enormous contribution.

Clearly they, too, have purpose.

Thursday, April 23, 2009

The news is in.

I can not tell you how happy I was to wake up this morning to find an email waiting in my inbox from Dr. Eames. As we suspected the test took longer than expected to complete and Dr. Eames was swamped with other patients. For good reason, we were not the most important patients of her week. I am guessing we weren't even in the top 20. That is good news. That is because Sydney is absolutely and utterly clean. Yes, you heard me. Her biopsies were negative.

What a relief!

I am still amazed at my mind's ability to drift into paranoia and conspiracy theory. Generally speaking, I am a rational and confident human being. In fac, many would say that I am overly so. I have absolutely no fear of standing up and facing illogical nuttery wherever it may stand. In fact, I might even say that I am irritated when I see these traits in others. Often I will take a stand against incoherent nuttiness simply on principal. This type of speak does nothing but insight misplaced emotion. It is not healthy and it does no one any good. In fact, it often makes things worse.

Yet, when I am placed in these situations with Sydney and her scans I cant help but let my mind wander. I can't help but worry about the "what ifs." The next thing I know I have myself worked up into a tizzy and I can no longer see the forest for the trees.

I don't really have any real answers. I don't know how to control it. Perhaps I should be better at taking my own advice - deep breaths and one foot in front of the other.

But, lets not let all of my mental incapacity take anything away from this moment.

Sydney is clean. She is almost 6 years from diagnosis, 4 and a half from the last hint of disease, and over 2 from her last therapy.

This is a huge milestone.

Today, I will enjoy my purpose. Tomorrow I will get back to the paranoia and the fight.

Wednesday, April 22, 2009

Still waiting...

In the meantime, here is a picture of the kiddos that we took after they had their faces painted at the Main Street Arts Festival.

Still waiting - purposefully...

Tuesday, April 21, 2009

Waiting

You know, it is always the biopsy part of scan week that scares me the most. Believe it or not, that is probably one of the most likely spots to see a relapse. This is especially true with Sydney whom we really do not know whether she continues to be MIBG avid. I am going to be frank and say that I am now officially starting to worry. It was one thing when the test results were not available. Perhaps they had just not been keyed in. It is another thing when the oncologist tells you that she will give you a call with an update but you never hear from her. That is the point when the paranoia really started to set in.

It is a constant battle in the mind. I can think of 1000 reasons why she did not call yesterday. After all, there are other kids to cure. She could be busy. I mean, where should our priority really be? There are kids fighting for their lives this very minute. That certainly is more important than the needs of an overly paranoid family with a daughter who is almost 6 years out of diagnosis and who has not shown disease in almost as long. I guess the point I am making is that I am rational enough to understand that there are probably much more important things - especially if Sydney continues to be clear. The problem is that it isn't any less for me. The findings aren't any less critical to me. I don't have competition with 100 children who need care, who need their life saving experience. I just have 1 child to worry and think about. My need to know is just as desperate as it ever was. Our life feels as though it is in a holding pattern. Did we get another pass or is this where we get off?

They are scary and horrible thoughts.

So with all of this, I come back to where I always end up. I will wait. I would gladly taking the pain of waiting over the pain of relapse. I appreciate where we are.

Purposefully waiting...

Monday, April 20, 2009

3 of 4

Good morning! Well, I am happy to let you know that as of last night we finally received the phone call that we have been waiting for. The results were in - well - for 3 out of 4 of the tests anyway. The great news is that Sydney's aspirates and her MIBG was clean. It appears that we are still waiting on the bone biopsies. According to Dr. Eames she was surprised that they had not received the results as of yet. Thankfully, though, she did not seem suspicious and fully expected to have the results sometime this morning. At the very least she said she would be calling the pathologist. Hopefully, we will receive some good news today.

The CT was clean but not without some anomalies. First, they are once again seeing some thickening of her sinuses. We thought we had gotten on top of this but that is perhaps the price you pay when you stop treating. The last 2 CT scans had shown these spots resolving and, as of the last scan, resolved. Given that, we had taken her off of her three drug combo. Perhaps, it is time to reload her with Singulair, Astelin and Nasonex.

Dr. Eames also alluded to a tiny spot on one of Sydney's lungs. I know, big gasp. The good news is that they went back and looked at this spot on previous scans and it has been there for quite awhile. The better news is that it has not changed. It has been the same tiny spot that has always been there. Given that, we can probably assume that this is some kind of tiny little scar on her lung and not the nasty 'n' word. My brain is still processing the info though. I haven't yet decided how paranoid I am going to be about this little spot. It might be one of those things that I just have to see to believe. I am starting to form the questions in my head. How big is tiny? Where is the scar located? Outside or inside? Exactly how long has it been there? How does neuroblastoma usually present in the lung?

I don't want to make anyone paranoid. Dr. Eames seemed very confident that this was not neuroblastoma. I am a junky. This is stuff I need to know.

I could be paranoid by the fact that the biopsy is taking longer than expected as well.

That is just me. It is what I do. It is my job.

It is my purpose.

Friday, April 17, 2009

Just waiting

Good morning! The waiting has officially begun. Yesterday Sydney completed both her MIBG and CT scans. This was our first stab at utilizing their new system for these scans. It is actually pretty cool. You see, previous to this system you could have both a Ct and an MIBG scan but they were mutually independent. The CT scan is looking at anatomy. MIBG is looking at physiology. They could be compared separately but it could be difficult to match them up as they both presented data in very different formats from very different angles. The MIBG was basically just a 2-d image of the patient shown from both the front and the back. The CT was a series of 2-d slices that go through the body. Think of it this way. If you took a carrot out of the fridge and took a photo of it that would essentially be the angle of what you would see with an MIBG scan - just a flat picture of a carrot. A CT scan is different. Now take the carrot and slice it into 100 little circles going from top to bottom. Now take a picture of each of those circles (the inside of the carrot). That is what you get with a CT scan. Do you see how it may be difficult to compare these scans?

Well what Cook's has done is that they have been able to alter the MIBG scan to create a 3-d model of the patient. Now, we don't see just a flat picture but we see an actual 3-d hologram. Let me tell you. It is a bit strange to see your daughter spinning around as a 3-d model on the screen. With this they can not only tell where the spot is (i.e. next to the kidney) but they can also tell exactly how deep it is in the abdomen and how large it is as a 3-d model. If all of this was not cool enough they also have a software solution that lines up the CT images and the MIBG so that they are layered within one another. In this way they can be compared directly to one another. We can now see the physiology and the anatomy lined up.

The oncologists and radiologists now have a much better picture of exactly what type of neuroblastoma they are dealing with and exactly where it is located. Is it on the bone or next to the bone? Is it on the liver, next to the liver, or in the liver? This wasn't entirely impossible to tell before with gross disease but it certainly was impossible with small amounts of disease. This new system addresses that. It is a vast improvement.

So, there you go.

Now, the big question, how did Sydney do? In short, she did great. She was an incredible trooper. She even kept an IV in over night so that we would not have to poke her again. She laid flat and still for about an hour before we ushered over to the CT for another 30 minutes more. After all of the excitement we took her back to school where she spent the rest of the day.

As far as the scans are concerned I did not see anything blatantly obvious. That does not mean nothing is there. It just means I did not see it on the microscopic view that I get. None the less, it felt great that there was nothing glaring. It will be this afternoon or Monday morning before we hear anything for sure.

Until then, we wait...

With purpose.

Thursday, April 16, 2009

Scan Day 2 begins

Good morning! Here we go with day 2 of scans.

Today Sydney will be having her MIBG scan. To me, this is perhaps the scariest of all of the scans. Of everything, this is the one I fear the most. If Sydney does relapse I would suspect to see it in her bones. I know many may argue with that philosophy but I believe it is entirely dependent on what you believe about Sydney's disease. If you believe that Sydney relapsed years ago then you would have to assume that she is most likely MIBG negative which would mean that this scan is probably worthless. Why scan using a radioisotope (MIBG) that has been shown to no longer be taken up by her neuroblastoma? However, if you believe that she may not have relapsed, if you believe that all of this could have been just another anomaly, then you have to suspect that she is still most likely going to be MIBG avid. In other words, she would be sensitive to this scan.

Guess where I my beliefs hope to fall?

So, while I don't know whether we will ever be sure whether she truly relapsed or not, I see that there is a possibility that she did not. She could still be MIBG avid. If that is the case then she would be more likely to stay that way. I believe, given the characteristics of her disease from the very beginning, that, if she does relapse, the first place we will be able to see it is in the bones.

So, at this point, if you are still with me, that is the very complicated and convoluted reason that this particular scan bothers me the most. Well, that, and because this scan is so specific. If she lights up on a CT, a MRI, a PET, or a bone scan it could still be something else. There is still some hope. It isn't always neuroblastoma. False positives on MIBG scans are a different story. They are almost non existent and extremely rare. Leave it at this. You don't want to see any disease with MIBG.

So, anyway, enough of my madness. First thing this morning we will be heading to up to the hospital for her MIBG scan. After that we will be doing a switcharoo to the CT scanner. That will complete our morning of scans. Depending on the timing, Sydney may or may not be heading back to school.

I, as you would suspect, will be heading to a dark quiet corner to nervously chew my nails.

And wait...

And pray...

With purpose!

Wednesday, April 15, 2009

BMA Complete

The procedure is complete and Sydney is awake and doing well. We are
on our way home.

Now, the waiting game begins - purposefully...

Sent from my iPhone

Bone Marrow Biospy and Aspiration

Good morning! Today marks the beginning of Sydney's scan week. This morning she will be heading to the hospital for her bone marrow aspiration and biopsy. Although we will be there much earlier, I believe she is scheduled to go under the cork screw at about 10 AM. I will post later to let everyone know when she is safely through the procedure and out of recovery. Please keep Sydney in your thoughts and prayers today.

With hope and purpose...

Tuesday, April 14, 2009

Animals, trains, and scans

Good morning! Yesterday everyone made it back to school and work - except for Ainsley. Given the fact that she is the official Jewish representative in the Dungan family her school was closed for Passover Break. That was okay with me though. That meant I got to get up early to get some extra work done and then spend the late morning with her until her nap time at noon. This gave us some special time together. I took her to the bookstore where we spent about 30 minutes looking at and reading books. We then bolted over to the zoo where we spent almost two hours looking at animals.

Well, that is not exactly true. We spent about 1 hour looking at animals. We spent the next hour riding back and forth on the zoo train. It was a bit cold but we both managed to have a genuinely good time together. We made it through by snuggling on the train. That is one feeling I am certainly going to miss as the kiddos get older. There is nothing better than a good hug and snuggle with my kiddos.

I love being a Dad.

After a quick lunch she was off to sleep for several hours while I plowed my way through work. Today will be a bit different. I am giving a seminar at 10:00 AM and will have plenty to do in association with that. It doesn't look like I will get another morning off.

I don't know whether you will hear from me tomorrow. Sydney is due at the hospital pretty early for the beginning of her scans. Tomorrow she will have her bone marrow aspirations and biopsies, a CT scan, the last bloodletting for the Nestle vaccine, and an MIBG injection. As you would suspect, I am already appropriately concerned. I should note that this will also be followed by Tae Kwon Do (probably not for her) and my birthday party. Yes, I will be turning the ripe young age of 38. I am aging just like fine turpentine.

All I want for my birthday this year is clear scans.

Right now, that is my purpose.

Monday, April 13, 2009

Easter Unexpectations

Good morning! I hope everyone had an exciting Easter. We Dungans sure did, although I sure learned a lot. I was not an only child, however, all of my siblings were more than 15 years my senior. So, for all practical purposes, I really have spent the bulk of my time as an only child. I never really had any competition. I was always it. From this perspective, having three children has very much been a learning experience for me. It is especially evident to me on holidays. I am amazed at the issues that arise. Lynley has not lived my sheltered "single child" existence so she is more prepared than I but I think the 3 twerp combo even throws her for a loop on occasion.

I must be honest and tell you that although I am an adult I still don't exactly understand what the Easter Bunny has to do with the resurrection of Christ. I could come up with several scenarios in my mind, but frankly, I don't think any of them are right. Regardless, I try to avoid having that conversation with the kids and stick to the stuff in print.

Easter morning went perfectly. Expecting a rainy day, the Easter Bunny had called ahead and asked us to leave a door unlocked so that he could hide the eggs inside. Just so you know, the kids were confused as to why he didn't come down the chimney like Santa Claus. Yet, another answer I was not prepared to give. Regardless, other than that snafu, everything went off like a hitch. The Easter Bunny got in and out without being seen and our living room, dining room, and kitchen were busting with little plastic eggs. He even left them with 3 Easter baskets jam packed with candy, chocolate and toys. Oddly enough he must also get some of his inventory from the dollar store because all of the kiddos got some of their favorite merchandise. I am guessing that the Easter Bunny must have a large group of garden gnomes helping him just like Santa has elves. I just can't see how a lone rabbit could get this all done by himself. None the less, the kids were ecstatic.

The Easter egg hunt is where everything seemed to go a bit downhill. You see, this is where my "single child" edumification has failed me. I knew that Sydney would find the most eggs but I also knew that she was a pretty conscientious kiddo. I knew I could slow her down and convince her to help her younger siblings. Ainsley is the third child and scrappy. Nothing gets her down. I knew she would dive right in and race for the eggs. What I was surprised with was Graham. The boy operated in slow motion. I have never seen anything like it. It was like he was in a trance and by the time he made it across the room to an egg it was almost certainly scooped up by someone else. Of course this led to tears and all kinds of issues. A minute into the hunt and Sydney's basket was almost full, Ainsley's was halfway there, and Graham's had about 3 eggs and he was sniveling. I did my best to help Graham but he just couldn't seem to get it in gear. Next year I think we will have to work with the Easter Bunny to work on another system because this just was not working for Graham. The pressure and competition was just way too much.

On one hand, I wanted to help him feel better but I would be lying if I did not tell you that I also wanted him to suck it up. What can I say? This threw both of us for a loop. Given the fact that this was a holiday I pretty much let it slip. Next year, though, he will be going through Easter Egg Hunt Boot Camp. I will train the boy. I will send him on practice hunts while shooting firecrackers over his head and playing the sounds of girls laughing in the background.

We will get him there.

It is all part of the purpose.

Friday, April 10, 2009

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.

Wednesday, April 8, 2009

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.

Tuesday, April 7, 2009

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.

Monday, April 6, 2009

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!

Friday, April 3, 2009

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....

Thursday, April 2, 2009

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.

Wednesday, April 1, 2009

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.