More on the neverending vacation

Good morning! Well, here we are, still in beautiful Alabama. The bad news is that we still don't have transportation home. The good news is that the car is under warranty and they are busily replacing the back end. Technically, I have no idea what that means but it sounds like a very time consuming process. I know of several women that have had the process done and it took them weeks of sitting on a doughnut to feel any better. We will just keep sending positive thoughts in the direction of Lynley's beloved suburban assault vehicle, Helga. We could get it back today or tomorrow but I am not getting my hopes up. The tough thing about all of this is that Lynley needs to be back in Fort Worth on Friday morning for a work retreat. So it looks like she will probably fly back while I wait it out with the kiddos. Eventually the car will be ready and I will make my way back home with my backup whiners, the twerps.

All in all it really is not so bad. The kids are having a wonderful time and, outside of being couped up much of the day due to the rain, aren't going too stir crazy. Today it looks like a trip to the Birmingham zoo. I will be sure to post some pictures.

Well, I had best be off. I do actually have to get some work done. I know, I know. I shouldn't be working on vacation. Just don't tell Lynley. If she found out I had been working every morning she would slap me upside the head with a thick piece of purpose.

Life on the road

Good morning! Well here we are in beautiful Alabama. The Griswold ( I mean Dungan) cross country family vacation has, so far, been great fun - if not without some snafus. First, I wanted to get everyone the official reading from Sydney's bone scan and MRI. Here is what Dr. Eames had to say:
Bone scan shows persistent abnormality/uptake in right proximal radius but it is definitely less and no other bone lesions seen. MRI is significantly improved as well with resolution of edema and the marrow enhancement is gone and soft tissue enhancement is significantly improved/less. Cortical lesion is unchanged.

More information will come when we get back to town and have a chance to see Dr. Eames in clinic. She will be conferring with Heidi Russell and others but I am quite sure that this will not change our direction. I am also anxious to see the scans and compare the prior imaging with my own eyes. Overall, we are happy with the results. The fact that we have some improvement is a good thing and is just one more piece of good news to put on the "Not Neuroblastoma" side of the scale.

So, the trip. The trip has been fun. The car ride was even pretty bearable. I was pleasantly surprised with how well it was tolerated by the gaggle. In fact, it was only Ainsley who was annoying. Oops! Are you supposed to say that about your child? Well, regardless, she was plenty annoying. She found great joy in repeating herself until she got what she wanted. You would be surprised at how much the kids need while riding in the car. "Daddy can you change the movie? Can you fix my Lego rocket that I broke it for the 1804th time this trip? Can you get me a drink Can I have a snack? Can you fix my Lego rocket that I broke it for the 1805th time this trip?" All of which was honestly okay. My kids are needy. I can except that. It was Ainsley's back ground hum of "Daddy can I have my blanky?" over and over and over that was pushing the envelope of insanity. It did not matter if you acknowledged her and told her how busy you were or not. She did not care how busy you were. She did not care if you were fixing Graham's Legos, getting something for Sydney, whether you were in the front seat, or whether you told her you would be glad to get it for her in a minute. She would continue to repeat herself, endlessly, until you got her whatever it was that she needed. Also, I can pretty much guarantee that as fast as you crawled back from the front seat and crawled back she would find something else to repeat herself endlessly about. In the end, it finally became more funny than annoying. She was like clockwork. My annoying little love bug.

The trip has been jam packed with far too much to cover here this morning. We have been to the science museum and the aquarium in Chattanooga. We have hiked through Montesano Mountain and even rode horses and chased pigs at the McCurdy farm. As a bonus Lynley's suburban even broke down while coming home last night. It seems, we may, in fact, have a choice of staying on vacation forever or getting a new car. It is all just another day on the Dungan family vacation.

And, yes, there is purpose to it all. We may just not know what it is yet.

Amateur Radiology Confirmed

Good morning!  We are officially on the road. I just wanted to let everyone know that the official results are in. Sydneys MRI and bone scan are both significantly improved. In fact,marrow edema is no longer detectible.  I will post tomorrow when I am in front of a computer and not on my phone.

Today my purpose is driving.

Sent from my iPhone

Is good news looming?

Good Morning! Are you surprised by such a chipper attitude? - especially when I am yet to talk to an oncologist or anyone even remotely qualified to interpret a bone scan or MRI? Well, I don't blame you, but let me let you on a little secret. The bone scan has improved. Yep, you heard me. It is clearly better. In fact, it is so much better that we had to image her arm from 3 different angles to actually get a clear indication that anything was still wrong.

Now, even though I know this for sure, it is not all a bed of roses. There are some thorns. First, it is greatly improved over the last scan. However, the last scan was 1 month postoperative so we would expect the last scan to be darker than usual. In this sense, it makes sense that this was an improved scan. Now, I was not able to compare this scan to any of the other prior scans. I don't pull that kind of weight. However, if memory serves me correctly I would have to say that it was improved from that scan as well. It will be close but I have a hunch that it seems to be slowly improving. That news is good enough for me - atleast for now.

Today I am hoping for the official report. I still do not have any idea of what the MRI will show. I am hopeful that it is as encouraging as the bone scan. I will post just as soon as I know anything.

It looks like the Griswold family vacation is on!

Each step is tentative but still with purpose.

Mighty Scan Day

Well, well, well here we are in that all too familiar place. Scan day. Just in case you have forgotten, I don't particularly care for scan day. I would think that is a pretty common reaction for a parent of a child with neuroblastoma. I don't care how long you have been in this game. It sucks.

Maybe I just need to start looking at scan days a little differently. Perhaps, I just need to be thankful that we have made it to another scan day. In that sense it is a milestone for which I am incredible thankful. But, on the other hand, scans always hold that fear and that terror. It comes down to what I say at almost every scan. It feels like a switch. Is it on or off. Will she live or will she die? It is a stomach turner no matter how I try to look at it.

So, I said much of this yesterday but here we sit on the dawn of two scans. To be honest, we still have no idea when they are going to be today. After 2 phone calls and 2 promises to call us back we still know very little. We just know that they are today. Regardless, at some point today she is scheduled for a bone scan and MRI.

The bone scan will be looking at her from head to toe. This is the same technology that we used when we originally found the spot in her arm. A bone scan is good for picking up abnormalities. However, it is not specific for neuroblastoma. It can pick up any kind of trauma whether it be from injury, infection, tumor (malignant or benign), or anomaly. Basically it can show us areas of concern but it can't tell us whether it is neuroblastoma for sure. So the characteristics that we are looking for is that this spot has not spread to other bones or other parts of the body. That would really increase the odds of this being some type of metastatic process consistent with cancer. Although, if your are a glass half full type of person, it could also just be that she injured herself in two separate parts of her body. I guess what I am trying to say is that if we saw that it had spread it would be pretty likely that it was cancer.

We will be using the MRI to just look at the spot on her arm. We are of course hoping for resolution but short of biopsying the spot and taking a vitamin a day we have done very little to fix whatever the problem was that caused the spot in the first place. We are hoping that the MRI will not show significant growth of the lesion or any more intensity in the marrow space.

Honestly, if I could have two wishes for Sydney it would be that this was something completely benign and that we could get some clarity as to what it is. Of course I want this not to be cancer but I also want to find out what it is so that we don't have to continue to put Sydney through all of these tortuous scans and tests. She deserves a break. She has been doing this every 3 months for 5 years.

Today's purpose is about hope, prayers, and clarity.

A busy day before scans

Good morning! It was another busy weekend around the Dungan household. On Saturday I spent most of the day in Graham, Texas at the Cowboyin' for the Cure event. I had a great time. I must admit. I had never seen mounted shooting before. It was loud but still quite a treat. Essentially contestants rode up and down the arena between pylons with balloons on top. The major difference being that every time they passed a balloon they pulled out a gun and shot the balloon. Outside of the fact that this has a bit of overkill to pop a balloon it was pretty interesting to watch. And this was a fundraiser? Only in Texas! But, I can tell you, the only laughing was on the way to the bank. This "little" fundraiser had raised about $20,000 by the time I had to leave and there were still a mountain activities left including mutton busting, a ranch rodeo and an auction. They had set a goal of about $50,000.00 for neuroblastoma research and they were well on their way. I was blown away (pun intended.)

Sunday was a much more casual day around the Dungan household. It was 107 degrees outside so we did everything we could to stay cool. Some of that included shopping as we are getting ready for our vacation on Thursday morning. That, of course, is assuming that everything goes well tomorrow with Sydney's MRI and bone scan. Well, of course, well is a relative term. I have yet to really talk to Lynley about what she expects from the scans. I can tell you from my perspective that I would love everything to be completely resolved in her right arm. However, I know that is incredibly unlikely. This comes down to the simple fact that we still do not know what it is. We just know that it is probably not injury and not infection. Given that it is neither one of those and we have not done anything to rectify the situation, I can only imagine that it will be about the same or worse. For us, the question of "How much worse is okay?" is the question. At this point, I think we would be happy if the condition has not spread to other bones or areas. That would signify a malignant process. We are looking for something just slightly bigger. Maybe we are hoping that it is just big enough to be able to tell that it is something other than cancer. I am still holding out for a nice benign bone tumor of some sort. The good news is that Sydney is still asymptomatic. She is happy and having a great summer. That gives us hope that this may in fact not be our worst nightmare.

Well, I had best be off. Just because I am going on vacation does not mean that I have any less work or purpose. There is much on the horizon.

Another full day of purpose lies ahead.

Day in the life of a dad with issues.

Good morning! It has already been an extremely busy morning however, at this point, I guess that really does not come as much of a surprise. I am happy to report that the kiddos all seem to be in fine working order. Last night they spent some quality time in the pool with Mom and splashing me with water. I, on the other hand, was the nerd sitting in the lawn chair next to the pool with my head in the research books. Generally, I am usually pretty good at dropping my focus on work related issues - enough to drop everything and jump in the pool to splash around. In fact, I pride myself on that. However, with scans on the horizon next week and a Griswald (I mean Dungan) family vacation following at a short clip behind, I feel further behind than ever. Plus, I was reading some very, very cool stuff and the kids needed some Mommy alone time (my excuse anyway.) I know you keep hearing me say that there is a lot going on in the neuroblastoma world. Well there is. You have no idea. It is such an incredibly exciting time. Here is the short list from my day. It was a slow one. I only worked on no less than 7 separate neuroblastoma events. Here we go (this should be fun):

• Work on Art Exhibition marketing materials - fail miserably.
• Gather and print research on liposomal and lipoprotein drug carrier formulations.
• Toner ran out on printer - damn. Go to Office Depot. (For the record. I hate Office Depot.)
• Finish printing research.
• Research MIBG study eligibility criteria.
• Drive to Cook's and talk to two families in transit about treatment options.
• Drop off research at Cook's.
• Drive to GCG to work on Neuroblastoma Art Exhibition marketing materials.
• Go to office to pick up Lunch for Life materials to be shipped out. (Darn forgot to mail them.)
• Drive to Geno Loro's studio to pick up conference photography and meet regarding Art Exhibition.
• Drive home to see kids at lunch. (get home just in time to put Ainsley and Graham down for naps.)
• Bid on neuroblastoma guitar auction on EBay while shoveling hot dogs and carrots down my gullet. Yum?!?
• Email family regarding vaccine trials in Houston.
• Email family regarding antibody questions.
• Review Marketing materials and comment.
• Change online donation process for CNCF website to include acknowledgements.
• Communicate and add website information regarding other Art Neuroblastoma Event in Los Angeles.
• Talk to Leslie at Cook's regarding Neuroblastoma Program.
• Talk to Andy at UNTHSC regarding Neuroblastoma Grand Rounds.
• Talk to Athena and begin work on setting up CNCF chapter in Houston.
• Edit and Review marketing materials again.
• Finish researching liposomal formulations - poolside yeah.
• Learn liposome technology well enough that I can now teach Sydney and she understands it. (She likes the idea by the way)
• Begin drafting emails to necessary parties to hopefully move research forward.
• Dry kids with beach towel.

Wow, what a day. See, I told you. Good things are happening. We are making progress.

A complete day of purpose. I just hope that today I am smart enough to put down work to swim with my purpii.