Ainsley has parvo!

Yep, I knew that would get your attention. I am getting better and better with headlines. And yes, Ainsley really does have Parvovirus B19, otherwise know as fifths disease. First off, for those of you with significant worry - relax. Unless you are pregnant or a susceptible adult you really have nothing to worry about. Of all of the predominantly childhood diseases (viruses) to get this is one of the easiest. The ill child typically has a "slapped-cheek" rash on the face and a lacy red rash on the trunk and limbs. (See, no reason to call CPS) Occasionally, the rash may itch. An ill child may have a low-grade fever, malaise, or a "cold" a few days before the rash breaks out. The child is usually not very ill, and the rash resolves in 7 to 10 days.

It is nastier for adults and you certainly don't want it if you are pregnant. An adult who is not immune can be infected with parvovirus B19 and either have no symptoms or develop the typical rash of fifth disease, joint pain or swelling, or both. Usually, joints on both sides of the body are affected. The joints most frequently affected are the hands, wrists, and knees. The joint pain and swelling usually resolve in a week or two, but they may last several months. About 50% of adults, however, have been previously infected with parvovirus B19, have developed immunity to the virus, and cannot get fifth disease.

So, should we keep Ainsley in a bubble? Naw, it is too late.

A person infected with parvovirus B19 is contagious during the early part of the illness, before the rash appears. By the time a child has the characteristic "slapped cheek" rash of fifth disease, for example, he or she is probably no longer contagious and may return to school or child care center. This contagious period is different than that for many other rash illnesses, such as measles, for which the child is contagious while he or she has the rash.

So, if you start to see a rash on your child's cheek it looks like we are the culprit.

I am guessing all of the boys in Ainsley's class will probably start showing up to school with a red cheek.

Sorry about that.

Just be glad it wasn't something else. Trust me, with my twerplets it could have been far worse.

Now, on to purpose I can control.

A busy birthday lies ahead

Good morning! Yes, it is officially my birthday today. I woke up to literally hundreds of email and facebook shout outs congratulating me on yet another year of survival. Frankly, I never even noticed that I had plugged in my birthday information to facebook. Other than posting my blog to it and communicating with other families, I have never spent much time on facebook. Frankly, I just don't have the time. But, I must admit that it did feel pretty good to wake up on my 39th birthday to such a pile of birthday well-wishers. It may just make my day.

Thank you.

I still maintain that everyone deserves a celebration of their life every year. In my mind there should be days off of work, parties, presents and ice cream all day long. Yes , I am still a kid at heart. But, unfortunately, I don't even heed my own advice. My day is jam packed with work. Even lunch seems to be booked with non birthday-ish activity. It turns out I will be meeting another family of a child with neuroblastoma over lunch. I don't guess that is surprising and, if I am being honest, it is more important than my birthday and will probably mean more to me anyway.

Tonight, however, is all about me. It will be an early (5:00) dinner at Outback Steakhouse (one of my favorite kid friendly dining haunts) followed by an hour and a half of Tae Kwon Do practice. Steak and lobster, here I come.

Well, enough birthday talk. Everyone seems to be doing well. Graham's asthma seems to be improving with the use of steroids. Sydney seems to be on the mend as well. She has not complained of a sinus headache for several days and her trips to the nurse's office have been surprisingly non existent for a change. For Ainsley, who mimicks every one of Graham and Sydney's ailments, well, she has shown miraculous improvements as well. It seems like she is going through a dry spell of mimickry material. But, as you can see, it looks like everyone is on the mend. The green pollen cloud is slowly starting to lift from over our house. Even Lynley can once again sit on the back porch.

Well, again, thank you for all of the birthday wishes.

For now, I am off to another day of purpose. What a great way to start my 39th year.

The Dudester

Well, it has been quiet awhile since I broached the subject of Dudely. Surrounded by a cacophony of scene stealing females he is often left by the wayside.

Not in my mind though.

Graham is having an interesting spring - both mentally and physically. Frankly, right now, his physical ailments seem to be dominating. Among a litany of wonderful traits, Lynley, unfortunately bestowed upon Graham two not so good little genetic hand me downs. The first is asthma. The second only complicates that little gift as "el dudo uno" also has significant allergies to oak. That is a significant double whammy that is further compounded by the fact that North Texas is currently under about an inch of oak tree pollen right now. In fact, if you looked down from the moon at North Texas I am quite sure you would see nothing more than a yellowish green smudge.

Graham's condition right now is somewhat dangerous. We have been ordered to get as much albuterol in him as we can possibly fit into a day. Right now, that is somewhere between about 4 and 5 breathing treatments. He is also on a slew of medications to alleviate the symptoms and to try and control the condition. At times, I must be honest and say that I have been concerned for his welfare. Rushing him to the hospital has crossed my mind on several occasions. Thankfully though, the moment I am just about ready to throw him into the car or call 911 he seems to finally catch his breath and the coughing fits temporarily fade away. I don't really have much more to say on the subject. I just feel helpless. It is hard to watch when you know there is nothing you can do to make it better. We just keep medicating him and hoping for the best. Spring will eventually end, right?

On the mental side, Graham has really come out of his shell this year. While I still find him completely and utterly compassionate, he is finally really showing signs of growing into his little boydom. He is far more social and, for better or worse, is beginning to get into trouble. He is doing boy things - like talking to his friends about inappropriate things and rough housing. He is going through an adjustment phase. Learning his boundaries and making new friends. All in all, I am pretty happy with it. It has been a long time in coming and I am happy to see him finally coming out of his shell.

I full expect him to continue to get into trouble. That is what this period is all about - learning what you can get away with. This is where my son, for better or worse (again), got many of his traits from his Dad. He is going to push the limits on fun and laughter. He is going to do stupid things and say even "stupid-er" things. It is okay though. It is all about being a growing Dungan boy.

Ah, and his grades? Well, Graham doesn't get grades on a typical scale yet. However, I can tell you he has greatly improved this year. No doubt - thanks to Mrs. Lewis. I have been blown away by his growth. On a scale of 1 to 10 he is at about a 9 academically and getting smarter every day. And yes, he has discovered math, his daddy's favorite subject. And, yes again, he is a whiz.

All in all, I am deeply proud of my Dudely.

I just need to find him some asthma relief.

I will have to add that to my purpose.

A new type of neuroblastoma counseling

I had a new experience this weekend. I had the privilege of not talking to the family of a child with neuroblastoma but, instead, talking to the friends of a family of a child with relatively newly diagnosed neuroblastoma. This was also unique in that the family of the child was not around. I can not say that I have ever been in that position before and I must be honest that I really enjoyed it. I regularly talk to friends and family members when they are all together but I have never done so when the family was missing. This presented many new opportunities for discussion that have never previously been possible. Honestly, I don't know whether I was a huge success of a catastrophic failure - only time will tell. But, I must be honest, when I found myself in this situation I tried an entirely different approach.

I began by asking myself. If I had to do this all over again, what would I want all of my friends and extended family to know? What thoughts and memories of this conversation would I want them to remember and take with them? What is it that they absolutely have to know, that they likely would never be comfortable asking the family, and likely never find on the Internet without months or years of study?

Additionally, because the family was not around, I also knew that I had another gift not usually afforded me in my previous situations - blunt honesty. Often when I talk to friends and family of the newly diagnosed I steer clear away of statistics and the long term reality of the disease. I give a softer gentler view of the disease and I focus on the things that the family needs to know - like the fact that what they are feeling is normal. I also try to give them confidence in their direction assuring them that the path that they are on is the correct one. If they are trying to make a decision between one path or another, I provide an unbiased view of both options and try to establish that, in many cases, there is no proven direction. In essence, I focus less on facts and cold hard brutality (lord knows, they are already experiencing this first hand) and more on lifting them up with confidence and assurance. Best yet, I can have these conversations without any statistics.

However, coming back to an environment where there are no immediate family members around, I do have more liberty.

And liberty, I took.

I wanted the friends to know the gravity of the situation. They naturally have questions about statistics and aren't afraid to ask for them. But, in my mind, a simple survival statistic was not enough. I want them to appreciate the length of this journey and the fact that while there effort was nice and thoughtful now, it would be needed the most in 9 months, a year or two down the line. When the newness wears off is when most leave and begin to wonder why they don't just "get over it", I wanted them to know that there was no getting over it. It was something that would now be a part of who they were. It would be something that there really never was an end to. It would be something where true friends were measured by the presence not at the beginning of the journey but in the middle. I also wanted them to know that while many believe that he was sick and that he would eventually get better, with neuroblastoma the real threat to his life really occurs in years two and three of his journey.

In the end, I left most with the information that I thought was most important. I believe I left impressions of not only the seriousness of the situation but the long term nature of it. They now know that induction, transplant and maintenance are just a battle in a much larger war and they are merely at the beginning of a long life altering and mind mending journey. Like I said, I don't know for sure the impact of my words. I can tell you that all of the people I spoke to seemed genuinely appreciative of my time and my words.

I only hope that my time will translate an already well organized and dedicated group of friends into a supportive one that will remain with them through the long hall and will know what to say when times are the toughest.

Time will tell but I think this might be a good thing. I can honestly say that they left with the information that I would have wanted my friends and family to have.

I guess this probably seems like a strange entry to those of you that have never had a child with neuroblastoma or some other serious long term life threatening condition. It may not seem like that big of a deal. However, I can assure you that standing on this side of the equation we all wish you just knew.

I am going to watch how this plays out but I am strongly considering putting together a guide to supporting a family with a child with neuroblastoma. Thoughts?

I found a knew way to exert my purpose.

Twerp recap

Good morning! Well, I am back. Yesterday morning was, unfortunately, part two of a root canal gone wrong. Thankfully, today that is all history and now all I have left to do is have a permanent filling put in its place. I really can't complain too much. This time I had the pleasure of having my root canal performed by an endodontist. I felt nothing other than a little soreness in my jaw from having it cranked open for a little over an hour. I am just hoping that this time it works.

But enough about me. Who really cares? It is about the kiddos, right? And, I have been neglectful in my twerp reporting duties. I guess that has been the case simply because not a lot has been going on - or maybe, things have just been flying by too fast. Let's see.

Sydney has had a tough time this spring with allergies. At least, I hope it is allergies. If it isn't allergies then there is a whole other level of horror that we are getting ready to deal with. She continues to have regular headaches and she is on a slew of drugs to try to deal with the effects. As you may recall, her sinuses are chock full of snot. She has also been complaining of a burning sensation in her lungs after some of her more intense cross training workouts. I think we have all experienced that at one time or another but it has never really happened to her before. It is just one of the many minor ailments that have plagued her recently. It remains hard trying to walk the line between rather intense allergies and the threat of the monster in the closet. Thankfully, this month is scan month and while our routine set of scans have been peeled way back it may at least give us a little comfort that it is just ordinary nothingness.

On the other hand, Sydney has continued to excel at school. Recently, she brought home yet another report card full of straight As and excellent behavior. The only minor quibble she received from her teacher is the fact that Sydney continues to be a social butterfly flitting from one conversation to another - just not always at the most appropriate times. Apparently, she enjoys being the center of attention. Gee, I wonder where she gets that.

Physically, Sydney has been less engaged over the last month. Last night was a better practice at Tae Kwon Do but the last few practices have been filled with only half intensity. This has not only been seen in Sydney, I think it has been true for most of the team. Although practices continue full throttle throughout the tournament season there is no immediate threat to prepare for. There is no looming tournament. Our next national qualifier for Graham is about six weeks away and we are 3 months out of the Junior Olympics. Give it a few weeks and I think they will all snap back into tournament form.

Well, I had hoped to provide a full update of all of the twerplets but as you can see I have already run out of time and space with my dribble so the rest will have to wait.

Good things are coming though. It looks like Lynley got us some huge discounts at Six Flags so we may be going there this weekend. I am sure there will be many great stories to follow.

Until then I am off to chase purpose.

MIBG Reminder

This is just a friendly reminder that today at 12:00 AM CST we will be having our free online seminar, "Targeted Radiotherapy for Neuroblastoma with MIBG". I must be honest enough to tell you that I was sneaky and reviewed the presentation slides yesterday. I can tell you firsthand that it is jam-packed with everything a parent would need to know regarding MIBG therapy. Thankfully, in today's day and time we also have enough response data to begin making some educated decisions on when MIBG therapy might be used and how it should be utilized in both upfront therapy and relapse therapy.

I can also tell you that MIBG therapy is one that has really worked for some kiddos. In fact, I can tell you that there are several kids that I know that are here today that would not have been had it not been for this treatment.

This presentation will be worthwhile for any parent of a high risk patient to watch and file into the back of their minds. It is an weapon that could potentially be in every high risk patient's arsenal.

Registration for the online seminar can be found here:
http://tinyurl.com/mibgseminar

A little bit of shared purpose for everyone.

What to do with Ainsley?

You know, pretty much since the day she was born I have joked that Ainsley was going to be my trouble maker. I had visions of her standing up on tables and doing body shots. I know, I know, you can't believe he just said that about his own daughter.

Awful. Yes, I know.

You see, the little twerp has always had that bubbly personality. She seemed to take the best outgoing-ness and flirtatiousness both of our genes had to offer and multiply it into some exponential algorithm that is what she is today. I guess the question is: Is it just innately who she is or did we somehow just wish this upon ourselves? I don't know what the answer is but I guess it won't change the fact that she very definitely is a flirtatious twerp with a boy hunting addiction.

Oh sure, it was cute when she and Zachary Rogers used to hold hands when visiting the zoo at the age of 3. It was even somewhat cute when she would hug Nash everyday when we left school. But now - now, we have gone completely out of control. I don't know what changed over the last few months but Ainsley's addiction has grown. Now I can't get her through the hallway without her hugging or trying to hold hands with at least 3 or 4 different little boys. At Tae Kwon Do she even sneaks off into the back stairwell with one of the little boys - he is 8, she is 4 (going on 40 with a firm grip on cougardom). Do the math.

Now it isn't that she is doing anything bad. But she very definitely has a love for little boys. Graham has even moved into sister protection mode. He gives anyone hugging her a dirty look and will break it up if it goes on too long.

I mean it. We have a problem here.

This all brings the question of what to do. Do we sit down and have a talk with her (remember she is 4 or almost 5 if you ask her)? Do we just let it go on and hope and pray that it goes away?

Honestly, I can tell you that saying something about it only seems to have had the effect of her wanting to do it more. She seems to enjoy it that much more if she knows she is not supposed to do it. Wow, is that her mother or what?

I don't have any answers. I can only tell you that Graham and I are at our wits end and even Lynley seems somewhat concerned.

What do we do to break our 4 year old's man habit?

Purpose give me strength.