Scans - clear as mud

Well, believe it or not, the results are in. I have come to the realization that I dislike scans more and more. It seems the more that you look the more likely you are to find something and very often you know even less at the end of the process than at the beginning. That sentiment pretty much sums up how we feel.

Now, before I get too far into this, I should probably reduce the anxiety level about a hundred fold. Fundamentally, Sydney's scans were good. As far as we can tell, she is clean.

However, there were many more questions than answers.

The CT scan - the CT scan was clean. Well, that was how the discussion started out anyway. Then we found out about all of the anomalies. I hate when doctors do that but I understand why they do it. Clearly, they don't want us freaking out. So, here is what they found. First, for years Sydney has had "thickening" in her sinuses. It is something that has always been noticed. It was believed to be congestion and this is primarily why we have her on the barrage of Astelin, Nasonex, and Singulair. The good news is that the sinuses were continuing to improve with time. This scan was no different. There was improvement.

Another existing condition was a small lesion in one of her lungs. Again, we have known about this for years. Long ago we first thought it could be a spot of infection but, after it never resolved, we assumed it must simply be damage from something she encountered along the way. The point is that this CT confirmed that the lesion was still there. It did not change. It was stable. Over this amount of time that we have been following this spot one would assume that it is pretty unlikely that this could be neuroblastoma. It hasn't changed. It doesn't light up on MIBG. It is probably something else.

Here's the rub. They found another tiny lesion on her other lung. This was a new discovery. So, here we are. We found something else. Is it neuroblastoma, a little bit of infection, or just another one of those little anomalies that lots of kids get but that we just never see because "normal" kids generally aren't scrutinized head to toe with a CT? I don't know. You've got me. Regardless, as of right now, they obviously don't believe that there is a high likelihood that this is neuroblastoma considering their plan of action is to wait 6 months or longer to see what happens. Dr. Eames is yet to weigh in on the subject but I expect her to feel the same way. I did talk to her in the hallway as we left the clinic and made her aware of the findings. She gave a small look of surprise but was clearly not too alarmed. I imagine she will take a look and give us a call to settle any unsettled nerves.

Don't get me wrong. If we wanted to go after this aggressively they would probably aid us in the quest to find answers. However, after this much time and experience we are a little more trigger shy when it comes to things such as this. This far out, disease can always be found but, in our experience, you are more likely to find yourself on a wild goose chase that never results in any answers. You have to weigh risk, reward and the intangeable impact on quality of life and our fragile psyches carefully.

Third, the CT scan shows some stenosis (narrowing) in one of the veins in her chest. This is the same vein in which her central line was placed. From what I understand, this is a fairly common occurrence. They did not seem very alarmed about this and so neither did I. We will be getting some more details and researching it a bit further so that we clearly understand the implications are but I would not expect us to do anything about it other than to watch it.

Next, MIBG, it was clean - except for an area at the top of her chest. That is how it was presented. Don't you just love that? Though, here we are a bit more comfortable. This is an area that has always been there. It is believed to be brown fat which is an entirely different discussion for another day. The good news here is that there were no changes. There were no areas of gross disease and no unusual spots in the extremities. It was just a plain old clean scan and, for me, the best evidence that Sydney continues to show no evidence of disease.

Finally, I know this has already been a long diary entry but I simply have to include this little fact. Today it has been exactly 5 years since we saw even a hint of theoretical disease. Yes, it was five years ago today we had our "relapse" that mysteriously disappeared.

Useless, but a pretty cool milestone if you ask me.

Milestones are important. They are a time to look back, reflect, and appreciate, your purpose.

MIBG and CT Today

Not much time to talk this morning. It was a sleepless night. For some reason I have been up since 1:30 AM. I am definitely going to need a nap today. I really don't know when I will be able to fit that in. Regardless, we have to be at the hospital before 8:00 AM this morning so I have to get my ducks in a row. I won't expect any official results today but you can assume that if there is something obvious on the MIBG I will be able to tell. Otherwise, let the nail biting begin.

I am off to purpose.

H1N1

So, I have seen a lot of discussion on the H1N1 vaccine amongst parents of children with neuroblastoma. Actually, some of the discussions I have seen have been down right violent. Who would have thought? It seems that people fall into two categories. Either you think vaccines are a reasonable method of protecting yourself and the population from disease or you think the risks of side effects from the vaccine are too great. There is another militant faction which seems to believe that vaccines are part of a secret plot by the government at population control. However, the last doesn't hold much water so I will address the first two.

Statistically, you are at a greater risk of death if you choose NOT to vaccinate. Period.

Furthermore, you are also more likely to spread the disease and the general population is at greater risk when people choose not to vaccinate. Another period.

Now, vaccines do carry risks of side effects. I honestly do not know whether you are at greater risks for serious side effects by having the vaccine as opposed to not having the vaccine and contracting H1N1 and experiencing side effects either from the virus or the treatment but I would not suspect to seea huge difference from that perspective. Bottom line, taking all things into consideration you are probably better off getting the vaccine than not from a statistical point of view. That is not an opinion. That is just math.

Now, the trick comes in identifying whether family members and children with neuroblastoma should be getting the vaccine or not. First off, you should know the difference between the two different versions of the flu vaccine. They are:

• The "flu shot"— an inactivated vaccine (containing fragments of killed influenza virus) that is given with a needle, usually in the arm.
• The other type of flu vaccine — nasal spray flu vaccine (sometimes called LAIV for “live attenuated influenza vaccine”) — is not currently approved for use in immunocompromized persons. This vaccine is made with live, weakened flu viruses that do not cause the flu.

This is an important distinction for those caring for a child with neuroblastoma. Ultimately, the decision of whether or not to get the flu shot should be guided by your child's oncologist. With that being said, all of the oncologists I have talked to have said not to get the "spray flu vaccine". This version is not approved for those with compromised immune systems and should also not be used by caregivers of immunocompromised children.

In other words, if you are caring for a child with neuroblastoma, do not get the nasal spray flu vaccine.

The flu "shot" is a different story and because it does not use live viruses it is approved for those caring for immunocompromised persons. For a child with neuroblastoma (or recovering from treatment) the decision as to whether they should receive the shot or when they should receive the shot is a discussion you need to have with your oncologist. Regardless of the timing, I would be especially careful to follow precautions to limit exposure for them. Furthermore, some institutions have different policies and you should discuss whether you as a caregiver should get the flu shot. For some, it may or may not be appropriate depending on your situation.

So what do I think?

Sydney received the H1N1 flu shot yesterday.

My purpose, my math.

A Tenacious Return

With scans taking up much of the latter part of this week, last night became a very important practice at Tae Kwon Do. Due to Sydney's scanning schedule she will have an IV in her arm on Wednesday night. This means no team practice and no sparring. Given the fact that Friday is a Halloween party for the Tae Kwon Do team this means that Friday night will not include sparring either. With a tournament just around the corner (November 7th) and no sparring 3 days before a tournament, this means that this was one of Sydney's "last chance" workouts.

Last night's team practice was punishing. It was all about developing stamina and Master Adrian put them through a gruelling hour of practice. Keep in mind that this came after the kiddos normal Tae Kwon Do class so they were already a bit wasted. It was tiring just watching them. I have no way of explaining it (and frankly I am not aloud to as team practice is the closely held secret of Team GSX's national success) But, let me tell you. I have played football, soccer and basketball. I even swam competitively as a kiddo. I have watched both professional and collegiate teams practice. However, I have not seen a more intense workout at any level. It was the most jam packed hour I have ever seen. I was worn out just watching them.

I am utterly stunned that these kiddos can do it - some while barely breaking a sweat. My kiddos struggled but the fought through it. I was amazed at their endurance. I would not have thought they could do this, period - much less taking into consideration all that Sydney has been through. It was evidence that anything is possible.

Unfortunately, at some point during a drill which required 90 double kicks to a bag intermixed with a steady barrage of mountain climbers Sydney hurt herself. She claimed that the pain came from the back of her heal. At first we assumed she bruised her heal but upon further inspection that was not the case. Lynley said the pain sounded to her like when she strained one of her arches. The pain radiated to her heal. That never happened to me but I was willing to try anything. Of course, as usual, my wife was right on the money. We taped up her foot to provide her support and gave her the option to continue or to sit out. Let me make that clear. We gave her the option, no strings attached, to stop.

She didn't.

It was a bit like the story from Karate Kid. Here she was injured and limping but she continued fighting. For obvious reasons, her sparring was no where near as good as it usually is. I think she was too afraid of being injured again. I would have been. None the less, she continued through several bouts before the practice was brought to a close.

Truly amazing isn't it.

Purpii are powerful things.

Prelude to a punishing week

Good morning! Well, here at Dungan manor, we are now sitting in the first day of scan week. I know, I know, it snuck up on us. Truth be known, until late last week, we had no idea either. But, here we are. I am sure the days will follow with my usual ramblings and skittish behavior. Thankfully, though, for the next few days, everyone gets to relax before I become the other psychotic form of myself. The fun will officially begin on Wednesday with the bulk of the fanfare on Thursday. Yes, at this late date as we get farther and farther out from diagnosis, our scan week has turned into scan day and a half. We have cut some of the meat out of our scanning schedule. At this point there will just be CT and MIBG scans. More on that later.

For now, carpe diem. There are other things to talk about on this fine day - like the fact that Sydney received straight As on her report card. Yep, you heard me, the little brainiac did splendidly and evenly topped that off with some exceptional behaviors in work ethic. Who would have thought? Well technically, I did, but I have already established that I am full of myself so this is only a natural progression. I am incredibly proud. There are many late effects from all of the chemo that can cause learning disabilities. However, this is one indication that things are continuing to develop normally - a big relief.

Graham received his report card as well. His is not As and Bs but that is no fault of his own. They simply do not provide letter grades in kindergarten. His is a cryptic set of +s, -s, and Xs and Os on a litany of different skill sets. Clearly he is doing well but he has room for improvement in some of the areas where his parents have failed. For example, he needs improvement on his site words - words that he recognizes on site. That is probably largely due to the fact that Mom and Dad have not focused on that area of homework with him as much as we should have. It is more a mark on us than him. The good news is that we have spent the last couple of weeks getting him back up to speed so we are hoping that by the time of our teacher conference this Friday we will be able to say his parental deficiency has been corrected.

Ainsley has not received anything as of yet. We will certainly keep you updated as soon as we hear anything but, in her case, we are expecting nothing but good things. Let's hope we are right.

Well, I had best be off. There is a mountain of work today, considering this week will be dominated by doctor's appointments and teacher meetings. Work does not seem to care that we have other obligations.

That is why it is up to me to determine my purpose.

A Blue Sticker Day

Some people think that Ainsley gets a pretty bad wrap in my diary. I am constantly writing about her mischievous shenanigans and her ability to bamboozle the casual observers. Certainly she can't be that sneaky. Certainly Mark overexaggerates for comedic effect.

Well, I don't!

But, today... Today I have to brag about her. (Well, either this is something to brag about or she has fooled us all once again)

Yesterday, I was at a golf tournament for Wipe Out Kids Cancer in Plano. I received a phone call from my mother who was picking up the kiddos. Ainsley had received her first blue sticker. To rehash, there are four colors of stickers and blue is the sign of exceptional behavior - of going above and beyond the call of duty.

Apparently, as the kids were sitting down for story time one of the other kiddos was sitting in Ainsley's spot. She politely (yes, I said politely) asked them to please move out of her spot. To top that off, when they actually moved she then thanked them.

Was this my daughter?

This was not the Ainsley I knew. At home when someone sits in her seat she has one of 2 moves.

1. She slaps them on the back of the head and tells them to move - or -
   
2. She grabs them by the hair on the back of the head and physically pulls them out of her spot.

That's it. Much to our chagrin, there is no please and thank you and that is why she almost always finds herself in timeout with a lecture about proper seat acquisition procedure.

So, what happened. I am befuddled - well, befuddled and somewhat strangely proud. Our parental powers for good have never seemed to effect her before. Is all of our hard work starting to sink in? Could this be a result of good parenting?

I doubt it... This is part of a bigger picture. She must be up to something.

Regardless, in her defense, I must stick up for her. When I got home last night I was greeted with a huge smile on the face of a very cute little girl. As soon as I opened the door she came running to me with her folder opened to her very blue sticker. She gave me the biggest, best hug she could muster and, once again, being enveloped in those little arms is about the best thing a daddy could ever hope for. I admit it. I was caught up in the moment. I has extremely proud of her.

I should also point out the contrary to all of my writing about Ainsley she continues to have the best record of behavior in Pre-k of all of our kiddos. To this day, she is yet to have a single mark of bad behavior. It boggles my mind.

It is a strange world we live in.

And somehow, I can't me prouder of my most miniature of purpii.

Black and Blue Tenacity

So, last night the kiddos had Tae Kwon Do. Now, this was no ordinary class. Well, actually it was. However, it was an ordinary class followed by another hour of GSX team practice. Yes, you heard me, Graham and Sydney, both practiced with GSX's competitive Tae Kwon Do team. Those mere words may not impress you but let me put it into perspective. These kids compete on a national level and some of which are even US junior Olympic gold medal holders. These aren't cute kiddos "playing" martial arts. These are serious junior Tae Kwon Doers.

So, why do I tel you this? Well I tell you because Sydney earned her very first genuine bruise in Tae Kwon Do. We aren't talking about any small inconspicuous non hurting bruise either. This is a big black and blue welt on the inside of her knee. It hurts to look at it. Yes, we are the proud parents of a bruised little girl. We could not be prouder.

Sounds strange doesn't it.

Well, let me tell you why I am proud. She got hit. She got hurt and instead of crumbling in a ball of tears and quiting she fought through it. To me it showed a lot of growth. Sure there were some tears but she never gave up. She kept going.

She didn't quit.

When things got tough she didn't quit.

One of the very reasons that we signed our kiddos for Tae Kwon Do was to learn this important lesson and this is one of the first times I have seen this life skill in action.

I know. I seem all tough and gruff. But, that is not the point. I can care less if they lose or win. I really don't care. In fact, I don't even recall if she won her bout. I do care, however, that they tried their best and they give it their all.

Yesterday I saw it.

Sydney has purpose too.

Deep thoughts...

Good morning! It looks like I have made all of the announcements of which I am required. I am now back in the good graces of my blushing bride for highlighting Graham's toothlessness. I am still no closer to understanding tooth inflation or why 4 year olds find it so inherently necessary to lie, but none-the-less I still feel satisfactorily complete.

Hmmm. Satisfactorily complete without any answers.

I guess this realization is one of the gifts I received from the years of Sydney's treatment. I never really had an answer. I never knew for sure that we were in the right study or that we necessarily on the right arm of the study. Frankly, I never "knew" (and still don't) whether we would win the battle against neuroblastoma. I never knew what the answer was. I never understood how to cure Sydney's cancer. There were no answers.

What we had were plans and a direction. We had a map but no guarantee that once we got there we would find what we were looking for. What we had was a journey.

I have come to find out that life is mostly that way. Whether it is raising kiddos or a project at work. There are no guarantees. We have this kind of general sense of what needs to be done. We have a direction. Sometimes we have experience. Sometimes we have books to help guide us along the way. But, fundamentally, there are no guarantees. What we have is our best educated effort.

We just have to do our best.

Take in all of the things we know, learn all we can, and make our best effort.

I have come to find that I don't have to have everything or know anything to be complete.

I just need my family and a direction.

Isn't that what purpose is all about?

The Tooth Fairy Tax

Wow, it is amazing how much trouble you can get in from your wife when you forget to blog about a milestone is some one's life. I am serious. I received dirty looks and everything. Regardless, today I am here to rectify this little situation. Here ye, here ye:

On Friday, October 16, 2009 Graham Dungan lost his very first tooth. He lost it at school during lunch. Here is a picture of the now toothless twerp who will undoubtedly be wishing for his two front teeth for Christmas.

This all went just fine until I realized the amount of inflation we have seen in the tooth fairy industry over the last few decades. I remember back to the good old days when I used to walk up hill both ways to school, when we didn't have cell phones or computers and when a lost tooth was only 25 cents - a fair price for a used tooth I might add.

For some reason, clearly unbeknownst to me, the price for a gooey old baby tooth is now $5.00.

Ridiculous.

Now don't get me wrong. I know how all of this started. It was those darn Wix's. When their son lost his last tooth the price was $10 dollars. Now given, apparently his tooth held more value because it had a temporary silver crown. But still, it was this one incident that set a precedent in our house. If the Tooth Fairy does not step up to the plate here our children's fragile psyches certainly won't be able to handle the Tooth Fairies perceived dislike for substandard Dungan teeth (Yes, I have tired that angle too.)

It is up to us to fight for what is right. I don't know where all of this money is coming from. Apparently, the tooth fairy was also a recipient of a government bailout. His tooth purchasing program is now backed by the strength of our tax dollars. Meanwhile, I am still waiting for my bailout. It seems I keep paying more and more and yet I receive less and less. And, just like the bailouts, I am paying the price for someone else's greediness.

It's time to take a unified stand against the Tooth Fairy Tax.

Okay, okay, Iam done. I fully realize that some purposes are less important than others.

Big fat liar

Ahhh, good morning. So, you have not heard from me in awhile. I am happy to report that everything is going well. It was been a great few days if not just tremendously busy. As you might expect, with three kiddos, we keep pretty our hands pretty full simply going from one activity to another. I have come to a realization in life though - and, it isn't a very nice one.

My daughter is a big fat liar.

Wow, there you go. I let it all out on the table for everyone to see. You would think that after all of my kiddo practice I would have mastered this little transgression. Certainly, after earning our stripes on a child with cancer and then following that with a son (presumably of my stock) that we must have faced nearly everything. We must have mastered most toddler rearing skills.

Well, I am sorry to say, we have failed.

It is true. Ainsley is a big fat liar.

To be honest, we never really faced this level of challenge with the other two. Sydney lied but it was always completely obvious. She never had the skills to be a good liar. It just wasn't in her. Don't get me wrong. She tried and probably would have become very good at it had she stuck to it but, as is usual with my eldest offspring, she could not master it immediately, become frustrated with it, and moved on to something more promising. That is just her. She still lies but she really isn't very good at it.

Graham on the other hand falls into a different category. I have actually read up on this. 96% of all children lie regularly. There are obviously 4% that do not. That is where Graham falls. It just does not exist in him. Oh sure, we get the occasional lie out of him but in never sticks to fruition. He can't stand the feeling and eventually trying to hold it all in will eventually break the boy. He is too honest and kind. That is just Graham. He doesn't have the heart for lying.

Ainsley, well, like Graham, falls into a category all her own. Unfortunately, it is on the opposite side of the spectrum. She would lie to you just as soon as look at you. I am not kidding. Lynley did the research on this one. Did you know that, on average, a four year old lies about once every two hours. Ainsley, on the other hand, tells the truth about once every two hours.

Need an example?

Yesterday, I was with Sydney at a birthday party when I received this text from Lynley after she put Ainsley down for a nap:

Lynley: "LOL, sleep well Ainsley. Want to give you lots of cuddles. What's that noise?
Ainsley: "My candy."
Lynley: Where? Oh, it is in your underwear. How'd that get there?
Ainsley: Not me.
Lynley: Then, who?
Ainsley: A ghost.

What can I say? That is my dear sainted Ainsley. I don't really have an answer. It isn't shocking to me anymore. In fact, behind closed doors, it is fun to laugh with Lynley about her last escapade. It just is what it is.

You have heard this before but I will say it again. Ainsley is going to be my greatest challenge.

I am amazed that all of these children are related. They have all been brought up the same way and, for the most part, they have always been treated roughly the same. It just blows me away. I just don't understand how they could be so entirely different. I guess I should be happy that they do have one thing in common. They are all very predictable. If Sydney lies, we will be able to see right through it. Graham either won't lie or, if he does, is likely to self destruct. Ainsley, well, we are just lucky that she is perfectly predictable. At this stage in her life it is more likely that she is telling a lie than the truth.

It is not a perfect system but those are my purpii.

Signs of progress

Good morning! Well, I happy to say that Sydney has not gotten any worse. I guess, however, that is probably because we have kept her drugged fairly well. I am anxious to see how she is feeling this morning. I don't expect a miraculous recovery but I would, of course, love it if she was better. Clearly yesterday she was feeling well enough to go to school. However, I am doubtful she would have missed it anyway. You see, yesterday was the 40th Anniversary of Southwest Christian School. It was a day of dress up and she had been planned on it for quite a while. The kiddos were given free reign to dress up in their favorite 50s, 60s, or 70s attire.

As you might expect, the Dungans were decked out in their full regalia. It isn't the greatest picture but at least you get the idea. Please note Sydney's poodle skirt, Ainsley's flower power go-go boots, and Grahams magnificent muscles.

Well, I had best be off. I am anxious to see what purpose today will hold.

Putting my head in the sand

It probably should not surprise anyone that the moment Sydney shows any sign of sickness I can still feel that lump in my throat and then sensation like everything has been emptied from the pit of my stomach. At the end of this month we will hit the 5 year mark since the last time we saw any hint of disease in Sydney, yet I still fear it like it was day 1. I don't know whether that makes me a mental case or just your average ordinary dad but, none the less, that is how I feel. I guess I have just gotten better at hiding it.

Just so you know, Sydney still has sporadic aches and pains. Over time I have just adjusted by using the ostrich method. Whenever she tells me that she has headaches or a pain in her legs I simply give her some Tylenol and stick my head in the sand for 2 days. By then the pains have always subsided or the source has become obvious and it is clear to the world that it is not neuroblastoma. Yes, it is a gift I have acquired. I can put off worrying for two days. I have gotten so good at it I don't even think to write about the little aches and pains in my diary.

I guess that makes me a worry procrastinator.

Oh well, it seems to work.

So, back to reality. Sydney is on the decline. I expect her to be a full fledged sicky sometime today. I could be wrong but that is what my gut is telling me. She is stuffy, she is full of snot, she has a pronounced cough, and she has headaches. She is yet to produce a fever but her temp is certainly hovering around threatening. Sporadically she has complained of other various aches and pains as well. Yep, there is something funky afoot.

A rational human being would assume that since these were the same symptoms that Graham and Ainsley had it would likely be the same ailment.

Then again, I am not a rational human being.

I can't help but wonder.

I think I need to go stick my head in the sand.

Mark Dungan a.k.a. Purpose Ostrich

Run free little birds

Well, today the kiddos head back to school. That is good news. I think another day and it might have begun to deteriorate. I was starting to see the signs of sibling rift. It really is amazing to watch. After a few days together the pleases and thank yous begin to wain, they become short with each other and, for some reason, the games they play now only allow 2 people instead of 3. These are all precursors to a full out war.

However, it seems the school week came just in time. With the continued rain I am quite sure that they would not have survived as a flock another day. They had been cooped up too long.

Yesterday we did actually make it out of the house. It was not very far but I decided it was necessary to have a voyage around the block. Yes, I took the opportunity to educate them about Columbus. I had been terribly disappointed by the fact that none of my kids had any clue what it was all about. None.

When I asked Sydney she told me that her teacher said that it would be covered later. When I asked Graham he told me exactly what Columbus Day was. "It is a day where kids and daddies get to stay home while mommies have to go to work.: For Ainsley, well she just looked at me like I was out of my gourd when I quizzed her.

After brushing up on my history in Wikipedia (surprisingly I remembered most of it), I took them on a voyage and told the story of Christopher Columbus and how he discovered America. Thankfully, midway through my story Ainsley decided to speak up and told me that she was actually learning about it in school. The others, well, still not so much. The good news is that now they know - whether they thought they needed to know it or not. At the very least, they are now equipped if they ever have children.

In the end it was a very good day.

But now, now, it is over and it is time to set them free again.

Off, off little birdies. It is time to get back to work.

Purpose awaits us all.

A historical trip around the back yard

Good Morning! Well, many of you may not know this but it seems that Columbus Day is still a national holiday. Don't get me wrong, I am pretty happy about it. It seems like every year we have fewer and fewer holidays and those that we do have seem to be replaced by something else, I am happy to see that we are sticking to our guns and having a national holiday that actually says something about our country. I remember back to the days when I was growing up and we actually celebrated President's Day and both Washington's and Lincoln's birthdays. To me, those were important. It was another opportunity to remember and reflect back on what was so great about our country. For the kiddos in school, it was yet another opportunity for them to learn about our history and our leaders. I always remember having such a sense of pride and patriotism. It was meaningful. I sometimes wonder if my children are receiving the same perspective.

I am sad those days are gone. I hardly hear about our great leaders anymore and it seems as though we have abandoned our history in favor of something else. Occasionally we do seem to hear about Washington but it seems these days we are more curious as to who he slept with than we are about him fathering our country.

Regardless, for me, I still have Columbus Day and I still have my kiddos at home. It will be an interesting day as the rain appears continuous. Perhaps this is the perfect opportunity to build miniature versions of the Pinta, the Niña, and the Santa María and have the kiddos sail around the back yard. Perhaps, we can even hide treasure around the house and go on a voyage across the dining room to find it. Who knows what will transpire but, of course, the thing I fear the most is mutiny.

I have a long voyage and I am surrounded by a group of lecherous and larcenous deck hands.

You know, it is amazing how our future resembles so much of our past.

This is a good opportunity to reflect on our purpose and our heritage.

Chinks in our armor

Well, I do have much more to say on the Accutane subject. However, in an attempt to thwart a nasty gram from my dear sainted mother-in-law because I have talking too much about neuroblastoma and not enough about her precious grandchildren, I must digress today. It is back to the kiddos. I suppose I should also note that it is also her birthday and, although it may not be a national holiday around your house, it certainly ranks up there for us.

(Yes, they are visiting in a couple of weeks and I do find it worthwhile to suck up.)

I digress again.

Regardless, I am happy to report that there is very little to report on the kiddo front. They have, thankfully, been relatively quiet as of late. My dad would say that this is exactly how children were meant to be. You know, seen but not heard. Old school. Hard line.

Of course, these are MY kiddos we are talking about so rather than rejoice in their quietude, I must admit that I am somewhat fearful. My kiddos only have two states of existence - chaos and planning for chaos. Given that, I have a pretty clear indication of where we are going from here.

I guess that is not entirely true. Their behavior has changed as of late. Lynley and I have been working very hard to curb two common childhood problems - fighting amongst each other and a general lack of respect.

The fighting amongst each other is annoying but it is relatively easy to stop - at least in the short term. When they start fighting we punish them - all of them. Walla. It does not take long for them to stop that annoying habit. It unites them and puts them in the same boat and, the next thing you know, they begin to work together to keep from going to time out. The only problem with this system is that it encourages them to work together. It encourages planning and thought and we all not that is not a good mix for a 4,5 and 8 year old. You have read Lord of the Flies, haven't you?

The second issue is more difficult and has always driven me nuts. Our kids are pretty respectful at home. They know that here they can not get away with it. They make a smart remark to their mother and I am all over them like flies on -- kids. There is no tolerance.

The problem is when we are in public or talking to other adults. Of course, this is also the most embarrassing for us. In public we don't handle it the same way as we do at home and we are being paid back for it. I have mentioned this before. The kiddos are like the dinosaurs from Jurassic Park. They look for weaknesses in the defenses and then they pounce on it. This is exactly what they do in public. They know that we will avoid making a scene in public. While we won't let them misbehave we do let them get away with disrespecting their parents - at least until we can get them alone. I guess we do it this we because of the embarrassment that we, the parental units, feel. We try to play it off as being something less than it is. But, in our hearts, we know that they are being blatantly disrespectful.

It mostly comes in the form of interruptions when we are talking to other adults. Embarrassingly enough this can be followed by jumping up and down and a temper tantrum when we don't acknowledge them. Sure, I will turn to them and tell them politely to wait but this just seems to egg them on. Generally, I finish my conversation politely with the adult and then quietly take my offending brat (I say that because that is what they are acting like) off to a quiet corner and scold them. This system works temporarily but the issue always seems to arise, either with the same child or another, the very next time I am engaged in a conversation.

It is frustrating. This is one front where we have failed as parents. Currently, the existing system is not working and a change of tactic is in order. The issue is not being remedied with what we are doing. I don't know what the answer is.

However, if, for some reason, the next time you see me leaving a building dangling one of my children from his or her ankle please know that I am doing me very best.

Just because I have purpose does not always give me a solution.

Accutane - A mountain of questions.

Yesterday's post on Accutane generated a flurry of email. I received many comments but, most importantly, it really established that concerns and questions regarding Accutane are very much alive and well in the minds of parents both during and post treatment. It should tell you something. Sydney, herself, is 6 years post diagnosis and 4 years post Accutane (she had 13 rounds in all) and this is still something that runs through my mind. Comments on this topic came primarily in two groups: those concerned about toxicities that I did not mention and those that wanted to know if they could continue taking Accutane longer than the traditional 6 months.

To me, it just illustrates the importance of getting a true expert in on this conversation. So, for that reason, I will be scheduling an online seminar and/or video interview on this topic so that we can get all of these questions addressed. I anticipate this happening in the next couple of weeks and I will let everyone know when I have a finalized time.

However, in the meantime I would like to address the first topic because I think there are important things to consider. Toxicities, were do I begin? There are many toxicities that I did not discuss but mostly from the standpoint that they were not universal. Individual children will likely experience additional side effects, which may be severe in some cases. Other side effects have included dry eyes, pink eye, dry nasal passages, headaches (some severe), neck, back, leg or knee pain or stiffness, leg cramps, muscle jerks, nausea, vomiting, constipation, diarrhea, lethargy, nosebleeds, and sensitivity to light. Crankiness, mood swings, flying off the handle, tantrums, and other “horrid” behavior are not uncommon. Most if not all of these side effects go away after the treatment cycle has been completed.

However, some children on Accutane treatment have had even more serious health concerns. Some children have had such severe pain (such as headaches or leg pain) that morphine, oxycodone or other heavy painkillers were required. Some have experienced high blood pressure. One of the most serious side effects experienced by some children during Accutane is very elevated calcium levels, in some cases high enough to require hospitalization. It is therefore very important to have physical exams and blood tests while your child is on Accutane to see how his or her system is handling it. Any symptoms that concern you should be reported immediately to your child’s oncologist.

One mother whose child was a part of the phase 1 dosing trial experienced severe cardiac issues during one of the doses. Thankfully, the child was okay and they never isolated the cause but it can show that in extremely high doses there are many potential unknowns.

Some also talked about the issues related to pregnancy. We know pregnant mothers should not take the drug, much less handle the pills. It is dangerous to unborn fetuses. Period. Some of the email speculated that there could be long term impact and cited examples of retardation and autism. However, I would be fairly careful to point out that there is a relatively high incidence of these conditions and they appear just as rampant in populations where Accutane was not involved. Long term impact such as this is relatively unknown and given the very known reality that it increases survival for children with neuroblastoma so significantly, I would be hesitant to let these theoretical worries impact my decision. It is important to keep in perspective. Most high risk patients will not be able to bear children due to the chemo and radiation they have seen anyway. So again, in comparison to all of the drugs these kiddos have seen previously Accutane is a relatively benign.

However, with all of that being said there is more information continuing to come out regarding the long term effects. There has been some discussion as to whether Accutane is the cause of some of these late effects but with all of the treatment they have had it can sometimes be hard to pin a late effect on a particular treatment. There have been recent findings and discussions on this topic and I think I will let the experts speak to these during the seminar.

Well, there I go again. Another complete entry on Accutane and I did not even broach the subject of how long the drug should be taken. That will be left for another day but I am sure this is one of the topics that the experts will delve into. More information on the seminar will be forthcoming.

Purpose plows on.

Accutane - What do we really know?

Good morning! I have spent much of my morning re-researching Accutane and its use in neuroblastoma. Most-specifically I have been looking for new insights into the length of treatment. This seems to be a common question for parents. I can remember it certainly was for me and, honestly, I still wish I could get to the bottom of it. To me, Accutane represents one of the most frustrating parts of medical research. We know it works. We just don't seem to have any clue on how to use it to its best ability.

One of the great realizations for parents when they begin to near the end of therapy with their children is this relatively benign drug called Accutane. I say relative and I mean that in comparison to the high dose chemotherapy and radiation that our children have been exposed to previously. But, none the less, this drug which causes some skin issues and perceived moodiness is not nearly is caustic as most everything else they have had to that point. Sure, there are other side effects to watch out for but, again, nothing compared to what our kiddos have already seen.

Better yet, this treatment seems to come with roughly a 10% increase in survival. Seems like an easy decision. Six months of sporadic grumpiness and red peeley skin seems an easy trade at that point.

The question comes near the end of those treatments.

Why not do more?

Herein lies my frustration. Why do we only do six months? Why not less? Why not more? What is the absolute most efficacious dosing and schedule?

The fact of the matter is that we really don't know the answers to those questions. With as much science as we used to prove the Accutane increased survival we never really had the time or resources to address these questions. There are a few things we do know. We know that we need to hit a specific peak of the drug to truly be useful. This is the reason we take so much and we take it every day for two weeks. We are essentially trying to hit a certain concentration, or level within the body, that researches have seen it be effective in animal models. This is why it is so important to take full doses and to take them on time. This is also the reason that I personally (a non medical professional) advocate swallowing the pills and NOT aspirating the pills with a needle and squeezing the drug out. Without swallowing the whole pill you can not guarantee you are getting all of the drug. Furthermore, if you don't hit the drug levels, many believe we might as well not be using it at all. So, as a quick nugget of information, get the prescribed dose in.

Just getting all of the drug in is not the only issue. There is a small problem however, and that is the fact that people seem to metabolize the drug differently. Even with the same dose/weight ratio some kids achieve high concentrations and others never hit this threshold of efficacy. Could this be one of the reasons why some relapse and some do not? If we could guarantee that everyone got high enough levels could we really raise the roof on efficacy? It is a possibility and, just so you know, the COG is now collecting this information on some patients to find out.

Wow, I got off track. I meant to talk about how long our children should be taking Accutane and I ended up talking about the doses themselves. I guess this goes to show how cumbersome this topic can be. Regardless, I will write more on this topic in the days to come. Additionally, I think this would be a worthwhile topic for a seminar. I am going to write Dr. Reynold's and see if he has time in his schedule now. Maybe I could kill several birds with one stone.

There will be more to come.

My purpose is cranking now.

Some traits are not treats

Good morning! Sometimes I am amazed at just how much my son and I are alike. I think the thing that intrigues me most is the seeing the things that appear to be genetic and not learned behaviors. Oh sure, he looks like me and that is simply poor genetics but what I am talking about is behaviors. Let me give you an example.

The joke between my wife and I is that I am only capable of doing one thing at a time. It is really true. I have laser focus. Whatever I am working on, that is simply the only thing that exists in my world. It is the way I am wired. As Lynley says, "He does one thing, he does it very well, and then he moves on." The funny part about this is that if you give me two things to do I will most certainly make a mess of it. If you ask me to walk and chew gum I will somehow end up with gum on my shoes and a foot in my mouth.

With this mentality comes a stubbornness. When I do something and I finish, I am finished. I did it. I did it well. It is pointless to do it again. I move on to the next challenge. I have become bored by it. Not in my job, not it anything - if you are looking for someone who enjoys doing the same thing over and over, you have got the wrong guy. I will do one thing to mastery but then I am done.

Yes, I am giving you a little view into my trippy little mental world - a daddy quirk, if you will.

The issue is that I always thought this was simply a learned behavior. I never, ever thought that this was something that I could pass on to my kiddos. It is a trait that has good and bad but it was never something that I would make any effort to teach my kiddos. I never really thought of it as a gift and frankly it can be a hindrance.

Well, it doesn't matter. As I watched my son yesterday it became clear to me, to everyone really, that he was literally a chip off of my block. Without any training it was clear he was just like his dad.

We were sitting on the porch talking with Jenny, our friend that is staying with us as she recovers from hip replacement surgery. Graham had gone inside to draw her a picture to make her feel better. After a few minutes he reappeared with his masterpiece for her. It was a picture of a large heart with an arrow. Jenny thanked him and suggested that he also add several smaller hearts around the side. This was an effort to keep him busy.

This was also the moment that I realized he was undoubtedly my son. At Jenny's words, his face contorted as if to say - "Are you out of your mind?" He then said, very politely mind you, "What is the point? It is finished."

Like father, like son.

Purposes amazes me.

Road to Recovery and keeping my big mouth shut.

Good morning! Welcome to a brand new week. Although I am excited to hit this week running, it is not because I am well rested or under-worked. I am looking forward to this week simply because I it is an opportunity to hopefully catch up. With the kids missing so much school and with some other things going on around our house, I have missed out on several opportunities to get my growing pile of work to start shrinking. In fact, it has grown so high I am about to loose sight of the top of the pile. I can't see the forest for all of the trees.

So, what is up?

Well, I am happy to say that all of the kiddos seem to have recovered. Even little Ainsley is seemingly making it throughout the day without a barrage of drugs. In fact, she made it through the entire day yesterday with only a single breathing treatment and, even then, it was questionable as to whether she really needed it. Graham and Sydney have fully recovered. There is not even a hint of hoarseness left in their little throats. I will tell you, this looks very promising. This could be the first day in weeks that we have had all of the kiddos back in school.

Another little treat this weekend included a golf tournament for me - actually it was for my wife. She asked me to play in a golf fundraiser for the medical school. It was nice that I got to play and, interestingly enough, it turns out that the president of the university was on my team. It should give no one any surprise that I gave him a pretty hard time. Unfortunately, in the end, it came down to the fact that I ended up having to play for Lynley's job. Yep, you heard me.

You see, it was fairly windy. Dr. Ransom, the president had mentioned how much it was affecting his ball. On a couple of occasions I hit right after him and the other members of our group made the comment in jest that the wind did not seem to be affecting my ball. Keep in mind, Dr. Ransom plays once per year. I played professionally(although that was quite a long time ago.) Regardless, I took mental note that the wind was only affecting his ball. A few holes later as he stood on the tee getting ready to hit. I loudly stopped play and pointed out that the wind was blowing towards a water hazard and, given his ball's propensity to be affected by the wind that perhaps he should take that into more consideration.

The comment was met from laughs all around and Dr. Ransom nearly doubled over. His comment back was that "Clearly you do not work for the school." I mentioned that was true and that I would not be disclosing who my wife was. At that point in time, he did not know my last name and had not put together that I was Lynley's husband. From that point on, the joke became that I would be playing for my wife's job. If I played well, she would keep it. If I failed, well, lets not go there.

The good news was that we won the golf tournament and Lynley kept her job.

In all due honesty it did not matter much though. During the round I disclosed that Lynley was my wife. Although he was a bit confused as to why she would marry me, he pointed out that since we were talking about Lynley her job would certainly be safe - no matter how much of an ass her husband was. She was too valuable to the school.

I was pretty proud.

All in all it was a fun tournament. We had a blast and it was good to get to know some of her work cronies a bit better. Furthermore, although I have met Dr. Ransom at some events previously, it was good to get to know him a bit better. He was a genuinely nice guy.

The remainder of the weekend was not nearly as fun. It was work. I was relegated to replacing the porch roof on Cabana 1 (our guest house) and getting it ready for a friend who is staying with us while she recovers from a hip replacement. Lynley had a network crisis at work and unfortunately had to spend her entire Sunday at the office. This left me with laundry, a little nursemaiding, and trying to keep the kiddos from destroying the house.

It was a complete weekend.

I am ready for a break. Unfortunately, that will have to wait until next weekend.

For better or worse, purpose will not wait.

No, I didn't forget anything!

Good morning. Given my recent history, I probably should not have skipped a day of writing in my blog without warning. I can just imagine what was going through every one's minds. "Jeez, Mark sure is forgetting a lot of things lately. Did he forget to write in his diary? Did he forget one of his kiddos again? Did CPS finally have enough? Did they come and get him?" Or, for those of you who don't fall prey to such unrealistic mental meanderings, perhaps you were thinking of something a little bit more realistic. "Did the kids tie Mark up? Was it a mutiny? Do the have him locked up in the basement? Are they forcing him to survive on all of the healthy snacks he normally tries to make them eat?"

Well the good news is that neither of the scenarios is the case. I still have most of my mental faculties. I have recovered from my forgetfulness earlier in the week. And, finally, I am still technically one step ahead of the little rugrats. Truth be told, the COG (Children's Oncology Group) meeting was in Dallas this week and I slipped out early yesterday morning for a neuroblastoma breakfast meeting. I agree, it is not nearly as exciting to most as the other two scenarios but for me, a nerdly father of a child with neuroblastoma, it was pretty cool. I cherish every opportunity I get to meet with the "big brains" and this was no exception. I am happy to say I got a bunch done and learned about several new therapies that are in the pipeline. I also got some updates about many of the other things going on in the neuroblastoma world. Progress continues to be made and there are some exciting ideas on the horizon. I don't know that I heard ramblings of the cure but there definitely are several who are trying very hard to get there.

As far as the home front, well it seems as though whatever bug flew through Sydney and Graham has finally made its way to Ainsley. Two days ago she started showing signs of the pronounced cough, hoarseness and fever. Yesterday she stayed at home and, given last night, she will be staying home again today. She was up several times last night and at one point we even had to give her an albuterol treatment with the nebulizer. That seemed to help and eventually she fell back asleep. She would be back in our room several times throughout the night but, thankfully, not with such relatively severe symptoms. Given how this has gone through the other two, I expect this to take a few days for her to full recover. I would expect her to be relatively back to normal by Monday.

Well, I must be off. I have several very important email sitting in my inbox that I must get off first thing this morning. It is time to put my neuroblastoma hat back on before the nursemaiding begins again.

There is purpose in the air.