Waiting, waiting, and waiting

Good morning! Well, if you are waiting for some results you are much like me - still waiting. This is always such an issue. The waiting is the worst. And, universally, it becomes much, much worse when you have been told you would hear something and you still have not. It is at that point in time when the paranoia starts to set in and the incessant questioning begins. "Why have they not called? They said they would. Did they find some thing? They must have." From that point the line of mental questioning and the possibilities of what could be wrong grow exponentially. This is a lesson for all of you future (or current) oncologists. The waiting is torturous and many, many times worse than the reality. In fact, I would always put it in this perspective - "If it were your child, would you want to know?" I think you will find that you would almost never, ever want to wait. This is, of course, my opinion, but I know that it is one that is certainly shared by most if not all of the parents I know.

So, we wait.

My purpose, however, plugs on.

The Big Day

Well, here we are at Cook's in the outpatient surgery wating area. We arrived at 6:30 AM and have gone through all of the usual sequences of events. Unfortunately, it seems like everyone is running a little late so they did not take her back until about 8:20 AM. This has me guessing that we will probably know something in about 30 - 45 minutes assuming all goes well. All in all, this has gone pretty smoothly. I certainly can't complain. As usual, I am just anxious to get to the bottom of all of this.

I should also tell you that my trip to Washington, D.C. for NCI Translates was an incredible experience. I am not really in the mood to go into the details, right now (I have Sydney on my mind.) However, I will tell you that has been transformational for me. In some areas it has solidified my thinking regarding neuroblastoma research and in some other ways I have been enlightened to new ideas and perspectives. I can tell you this. I viewed research that spanned just about every cancer. This event was representative of the entire cancer population. I can also tell you that, if anything, neuroblastoma was over represented. Yes, you heard me. Neuroblastoma research projects accounted for anywhere from 5 to 15% of the abstracts that appeared in each of the sections in which I participated. That is a huge number considering the fact that this was not even a pediatric population that we were looking at. This was all cancer - breast, lung, prostate - you name it. Our neuroblastoma research is something to be proud of. Our investigators are clearly leaders in the cancer world. Ironically, Sydney's vaccine trial was a big subject at the meeting. I actually met with some of the researchers behind her study. It was a shock for both me and them.

Well, more later. My nervousness is now taking priority over my writing so I think I am going to focus back on my anxiety now.

I have purpose on the brain.

Preoperative success

Good morning. Well, before I head off to Washington D.C. for the NCI Translates meeting I wanted to give everyone a brief update on Sydney. This will probably be the last time you hear from me until after her procedure early Monday morning. Yesterday we took Sydney to the clinic for her preoperative check up. I am happy to say that she was found to be perfectly healthy and normal. As far as the whole neuroblastoma thing goes, she appears to be asymptomatic. Her CBC was normal and everything checked out. There were no outward signs of something amiss. In my book, that is a vote of confidence going into this surprise set of bone marrows on Monday.

Based on my email many people seem to be very curious as to what I really think about this whole strange lab result that we sent to Texas Children's. Truth be told, I still do not know what to make of it. I am anxious to confirm that it is not neuroblastoma that is causing this rather strange laboratory finding. I still don't think it is the cause. It just doesn't make sense to me. Although, I certainly understand that we have to rule out the possibility that the vaccine is doing exactly what it was hoped it would do:) I still think it is probably related to something else, perhaps a virus of some sort. A flair up of EBV would probably be the most likely catalyst but I am still suspecting something else at play. I have no medical rationale behind that statement. This is my gut feeling at play. Something is out of whack. I just have not put my finger on it as of yet. I know I don't have all of the answers but I also suspect that I don't have all of the facts as well. There you go. See, I know absolutely nothing.

Sydney and I had a pretty good time in the clinic as usual. We started with working on her vocabulary. She hates this activity. I would think pulling teeth would be higher up on her to do list. There was lots of fighting but I tried to keep her entertained as we struggled through the cards. Something must have worked because she came home from school later that day with a 101 on her test. However, I know full well that she won't attribute her score to any of the time that we spent in the waiting room at the clinic. It was not long before she grew tired of vocabulary and was off to creating crayon masterpieces. This worked out well as I had roughly 30 email messages waiting for me on my iPhone. After a short while we were back to clinic stuff. We had the opportunity to meet the new nurse practitioner. It was quite a treat. Angi is clever and had no problem dealing with the Dungans (Well, I guess I should say Dungan - singular. Sydney and Lynley are both pretty easy to deal with in general.) I was surprised that they would throw her to the sharks so early in her career. None the less, she handled us aptly - so well, in fact, that we had no need to see an oncologist. I was not sure whether Dr. Howrey was glad that we left without seeing him or a bit disappointed. Knowing what a headache we can be I think he was probably secretly relieved.

Finally, I want to thank everyone for their kind messages. I think I received around 20 email and messages yesterday from those that follow the diary. I genuinely appreciate your kind words. I don't know that I am dealing with it any better (not that it matters how I feel). It is just that having a 3 year old of my own I can't shake the imagery out of my mind. I keep thinking of Ainsley in that position. It makes me physically sick. I am happy to say, however, that she is now surrounded by our loving family and seems to be coping very well especially given the awful circumstances.

Well I had best be off. I have exactly 31 medical abstracts to reread today. That is a lot of medical jargon to absorb at 5:00 AM in the morning.

Stacks of purpose await.

Sad, sad, sad

You will have to bear with my lack of a response this morning. In the midst of everything that is going on with Sydney we have had a horrible death in the family which has left my gut churning. I have had this feeling before and know it all to well - overwhelming emptiness, sadness, and despair. It turns out that one of my cousins passed away at home. This is bad in and of itself but it becomes much worse. He was also a single parent of a 3 year old child who was home alone with him. It took several days before his body was discovered by his sister. The 3 year old child was dehydrated but survived on some Halloween candy that she had found around the house. I can't think of anything more sad.

I don't have anything else to say.

My purpose is hard to grasp today although I desperately feel the need to hug and hold my children.

A Translational Tangent to the NCI

Everything is scheduled. I heard from Dr. Eames on several occasions yesterday. Sydney is all set up for her bone marrow aspiration and biospy first thing on Monday morning. She will begin the process with a clinic visit tomorrow morning for a preoperative checkup. Dr. Eames was nice enough to coordinate this for me as I will be travelling from Friday through Sunday to Washington, D.C.

I am serving as an advocate for the NCI at the NCI Translates convention. It should be a very, very interesting trip and I am really looking forward to it. The whole purpose of this meeting is to evaluate the NCI's entire portfolio of cancer research and to prioritize it based on how well it can be "translated" into meaningful treatments. The entire purpose of this meeting is to accelerate translational cancer research. Our job as advocates is to bring our consumer perspective into the process. Their belief is that our input will help them identify and focus on what is really important and provide the necessary sense of urgency to move forward quickly. It is also the hope that we will bring relationships and knowledge from the outside of both NCI and non-NCI related activities into the discussion.

I often see and hear people complain that people aren't doing enough when it comes to cancer research. I have seen people blame the COG, the NANT, the NCI and even individual institutions like Sloan Kettering and St. Judes. I have heard people claim that the doctors and researchers don't care - that they are only in it for their own intellectual pursuits. I have heard many claim that they don't care about the children. I am here to put my foot down and to say that is WRONG. It simply isn't the case. I have met many researchers and physicians over the years (1000s) and I am yet to meet one single one that was not passionate about creating a change for our children - even a few that did not even do research in pediatrics. The problem is not the people. They are committed - at every level. I have been advocating for years and with the exception of one single issue (which I see both sides of) I have seen constant change as the medical community has made changes to move faster and more efficiently. There are problems with every organization but most of it has to do with bureaucracy and less to do with research. They are working hard to create change at every level.

Are there problems?

ABSOLUTELY! There is lack of funding? And, in our case, patients? There are political pressures extraordinaire. There are issues (in our eyes) of prioritization. There are problems with the pharmaceutical industry and the insurance industry. And, don't forget what a mess the legal system has introduced into all of this. But, don't doubt for a single second that there aren't thousands of well respected scientists and physicians that are out there fighting for our kids everyday trying to make a difference where they can.

Wow, so that was a tangent. Sorry, I am a passionate guy.

That is what purpose does to you. Bring it on.

International Neuroblastoma Vaccine Star

Good morning - 2 days in a row! Yesterday was a truly great day. The kiddos were back into the swing of things. As much as I miss having them around during the week, it was a good thing. I was wall-to-wall busy. I just have 101 little to do items that keep piling up and I finally just had to sit down and concentrate on getting them out the door. You name it. It was everything from shipping cookbooks to reviewing marketing meterials. It was a complete day. I guess I had good karma from working so hard on my "should-have-done" list because yesterday I finally heard back from Dr. Eames. For the record, I was right. She was out of the office all week - something about saving kids lives on the floor. She even spent part of her time out of town. She felt really badly about not contacting us sooner but we completely understand. Had we thought it was something that required immediate action we would have found a way to get a hold of her. We were content - a little anxious - but content. I guess the most important thing was that we got answers. It turns out that Dr. Eames is in the same line of thinking as ourselves. We will send Sydney's blood off soon and we will coordinate it with a bone marrow biopsy and aspiration. We are running out of days this week because labs have to arrive at TXCCC before Thursday on any given week. I am guessing that it will be scheduled on Monday, Tuesday or Wednesday of next week. Get ready! It will be an extremely nail-biting time.

I mentioned yesterday that there was an article on Sydney's vaccine trial that had just been published. Yes, it is making its rounds internationally. It is all over Google. There is a great, simple, and to the point version of the article here:
http://afp.google.com/article/ALeqM5jbP9-SE3RPXhkOKBT-LQ9vOH3WCQ
For those of you that are interested, I also have a PDF of the actual journal article itself. It is a very technical read but very interesting. Sydney is patient 9 on this study and you can actually see her in a chart. Of course, it does not mention her by name but it is very clear which patient she is. I also find it very interesting to see in the article how excited they are that they have been able to identify the vaccine so far out - 18 months!?! This is obviously one of the reasons that they are so excited about Sydney results. Perhaps we can help ask the question - why?

Well, I am off. This is Lunch for Life Cookbook day. I have to get everything off to the printer - only 99 more todos left.

Off to purposeville.

We survived Halloween

Good morning! I am finally able to say those very words on a morning where I actually have cable, phones, and the Internet. I feel alive. In the end, it turns out that the problem with my Charter services was very complex. It turns out to be the exact same problem that I identified for them on the very first day of our outage. Furthermore, the solution to our problem was also the very same solution that I pointed out on that very first day. In the end, 9 technicians came to our house and we had at least 4 other line technicians visit. Each came with false information and were not adequately prepared to solve out issue. It was the last line technician, 16 days after our outage began, that actually followed my instructions and was able to identify and fix the problem. In the end, I can only tell you that it was not the technicians or the support personnel that were flawed. It was the system and the inability for Charter to communicate internally. This is a management problem, not one of incompetence. Sadly, this issue shows no signs of change. I was blown away by the number of individuals within the company who recognized these issues and were still unable to work around them. My advice - find another cable, Internet and phone provider. Charter Communications is not capable of providing reliable service.

Now, onto happy subjects - Halloween. Can I tell you how much fun my kiddos had? They had a blast. They had a blast traipsing around the neighborhood but, honestly, I think they had far more fun handing candy out at the door. Here are a few pictures so that you can share in our fun.

The Halloween Twerp Crew

Ainsley Alley Cat (before candy)

Ainsley Alley Cat (after candy)

Now, you may think this last picture was staged or perhaps Ainsley was laying next to the toilet for some other reason. No, Ainsley is a candy junky and this is what happens when you sneak away with your candy and try to eat as much of it is you possibly can. I hate to say this about my own daughter but something tells me that this will not be the last time that I find her curled up next to the porcelain thrown. This seems only to be a precursor of things to come.

Well, as usual, I can talk for hours if given adequate opportunity. On Friday, we also had a city water line burst in our front yard which is another story in and of itself. We continue to chase answers on the findings to Sydney's last vaccine lab draw and, in a strange and somewhat ironic twist of events, they published a journal article on this very same vaccine study over the weekend. Finally, there is a ton taking shape with Lunch for Life.

Yes, I could go on and on and on.

It will have to wait until tomorrow.

Today I have purpose to get to.