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.

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.

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.

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.

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...

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...

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.