Wednesday, April 30, 2008
Sydney, on the other hand, is a bit of a different deal. She is collecting maladies like I am collecting grey hairs. Her latest oddity is an assemblage of bumps on her noggin. Lynley is pretty concerned about them and myself, less so. I will be blunt. Lynley thinks they are neuroblastoma. I think they are a very strange presentation to be neuroblastoma. I think they are more likely to be some kind of bite. Lynley will quickly point out that if they were bites why would she have 3 of them on her head and the other kiddos do not have any signs. My thought is because she is a twerp that is constantly rubbing her head on the dogs - don't ask. Yes, I guess I am making the inference that my daughter has fleas. Lynley does not feel any better. Anyway, there are 3 little bumps about an 1/8 (to a 1/4) of an inch in size that are placed on almost polar opposite sides of her head. One is just above her right ear. One is on the north pole of her head. The last is somewhere between her left ear and the top of her head. If she were a globe I would put it at about Seattle, Washington. To me, they all look the same but Lynley thinks the one in Seattle is a bit bigger. According to Sydney, it is the most painful of the 3. They only appear to hurt, however, when you press on them. Anyway, I am no expert on neuroblastoma metastasis on the skull but I would think that we would see a larger raised area and some differentiation in the sizes of the 3 spots. But who knows, every kiddo is different and it is not like we have ever seen skull mets on Sydney.
So, although cute, Sydney is quite the mess. She has a "growing" spot inside her arm, a loose adult tooth, and 3 bumps on her head. This goes without saying that she is covered in her usual garb of scratches, bruises, and abrasions. I am continually amazed by what she does to herself. Regardless it is plenty to think about and we really do not need anymore at this particular time. The good news is that we will see the dentist tomorrow afternoon. As for everything else, well, I think we have to sit and watch patiently.
Purpose is an entirely different thing when you live with the monster in the back of your mind.
Tuesday, April 29, 2008
The worse and more ominous occurrence has to do with Sydney. Thankfully it has less to do with our most recent scare (the arm that continues to plague by waking and sleeping hours) and more to do with late effects of her treatment. It appears that one of her new adult teeth is, in fact, loose. To our knowledge she has not bumped it or jarred it. It would be one thing if this had happened to a baby tooth or injury but it is clearly unrelated to either. We have hoped that this was some mad fluke but are coming to realize that this is probably just the beginning of some young dentists career of work.
The unfortunate part of treatment that many are unaware of in kiddos is the damage that all of the chemotherapy does to teeth. The is especially present in children with neuroblastoma because of the timing of the disease. The average age at diagnosis is two and, unfortunately, this is also the time that "seedling" adult teeth are just starting to take root. The drugs seem to take their toll on these teeth and by the time they reach the surface they are often deformed or non-existent. This leads to a lifetime of dental work. Of course, like hearing loss, this is another side effect from treatment that receives little, if any, financial support from the health insurance company. Instead, it becomes a reason to take a second mortgage out on the house. So, bottom-line, Sydney has a wiggly adult tooth and we will need to get her to the dentist so that he can make his next monthly Mercedes payment. Unfortunately this is an important week of testing for Sydney at school and we will need to carefully coordinate that.
The purpose coaster rides on.
Monday, April 28, 2008
The weekend was relatively unremarkable. Of course I say that with the exception of our 11th wedding anniversary, the steel one. Lynley and I went out for an extravagant night of dinner and then spent the rest of the evening scavenging the stores of Cow town for something steel and memorable. In the end, we came up with a stainless steel sink stopper and a horseshoe. We were pretty surprised at how much identifiable steel there was to be had. But honestly, what could be more perfect for us - a sink stopper and a lucky horseshoe - romantic, huh? Regardless, the point is we had a fun time and we were still home in time to put the kiddos down to bed.
Well, I had best be off. There is a mountain of planning and preparing going on today.
With hope and purpose
Friday, April 25, 2008
You, like me, must be thinking. Wow, what could she possibly have done? Sweet little Sydney, defeater of cancer, lord of the twerps, how could that be? Well, it happened. You see, every child has a nemesis, another child that torments them. I think this is especially true with girls. It is not really the point of the story but I know because I tormented many of them. Anyway, there is one boy in Sydney's class that is constantly pestering her. Yesterday, in addition to his normal bugging in which teases, pokes, and prods; he made a bad judgement call. He pinched Sydney and it was pretty hard too. It left a welt that was still there when I picked her up from school. Well, Sydney is a little bit like her mother (if you know her, you know what I mean) and she just hauled off and clobbered the boy. She wasn't nice. She wasn't gentle. She hit him as hard as she could. For this, she received a yellow sticker. Well it was for that and not paying attention later in the day but I think that was much more of an accident. Regardless, Sydney hit a boy and now she had a yellow sticker.
Now, with Sydney receiving a yellow sticker she had to be punished pretty severely. I did all of the things I was supposed to. I made a big frowny face after she told me - even though I was secretly smirking on the inside. I told her how wrong and bad it was that she hit one of her friends - even though I secretly thinking "Yippee!" and "Good for you!" and "That's me girl!" I took her home and sent her to the kitchen table where I made her do homework and write "I will not hit my friends" 20 times on paper. She stayed inside and worked on math problems and read chapter books while the rest of us played and laughed outside. She was relegated to her room and she went to bed early as well. I cut her no slack and I used my big frowny face to the best of my abilities. There is no doubt in my mind that she knows what she did was wrong and that I am very, very disappointed in her.
I guess the irony really is that I am kind of glad that she hauled off and walloped the boy. Everyday I have to hear how he pesters Sydney. I have to hear how he got a red sticker and how he bugs her. He constantly calls her names. He is just an annoying nerd. I happen to know this for sure, ironically, from past experience. I was that full-fledged annoying nerd. We all need a good wallop know and then. I got one. So, I guess the point is that I am really not all that mad at her. I understand. I wish she wouldn't have chosen to haul off and hit the boy but I also know that telling the teacher would not do her any good. She has tried that. Perhaps now he will get the message. Just don't tell her I feel this way until she is 20.
It looks like hidden purpose today.
Thursday, April 24, 2008
One of the most interesting things about this year's conference is a change from the way we have done things in the past. Typically, each presentation during the conference lasted between 30 and 45 minutes. That was then followed by a 15 minute discussion period. Although this pattern will continue for many of the presentations, we will be doing something very different for two of the most important topics. This year we will tackle 2 subjects in the form of a panel round table discussion. We are hoping that this change in format will help to tease out some of the important issues and questions that are rarely discussed but vitally important to know. Additionally, we are hopeful that it will also bring to light the many sides of every issue. The panels will be made up of two groups, a group of neuroblastoma experts and a group of parents. The two topics that we will be covering are Transplant Options and Relapse.
During Transplant Options we will be discussing every major therapeutic approach available. We will discuss the pros and cons of single transplants, tandem transplants, autologous transplants and mini allogenic transplants, transplant combined with MIBG, and finally no transplant in favor of immunotherapy for consolidation. I can't guarantee a definitive answer on what is best for every child but I can guarantee that you will walk out of this discussion knowing the pros and cons of the available options. Personally, I am extremely excited about these discussions because I truly believe that we will finally be able to get to the bottom of many of the great questions of neuroblastoma. Several facts will come to light that are rarely, if ever, discussed.
Relapse is also a very hot topic. As you probably know, this has been a personal interest of mine. There are different beliefs and strategies to consider when choosing relapse options for your child. Often these differences are never discussed with families. We are going to discuss the various strategies and their pros and cons. We will also have a through discussion on the various options available and how they can be utilized within the treatment plan. Parents are often looking to the next treatment that might work instead of the big picture. By understanding the big picture we as parents can make better decisions, better understand our options, and understand the perspective of the oncologist. This knowledge is useful to help us carefully balance efficacy and quality of life. Finally, we hope to help parents understand how to identify promising treatments for their child and how to interpret some of the preclinical data. We often make decisions based on others response or lack thereof and it is important to understand when it is appropriate (and when it is not) to do so. This will be one of the most important and enlightening discussions this year.
As usual we will also be discussing all of the other important aspects of treatment from stage I to stage IV. Additionally, although I have never attended, the angel parent sessions will also be happening concurrently. In the past, many of the parents and families that have attended have told me that this was an incredibly valuable experience. If you have lost your child to neuroblastoma, I encourage you to attend.
Finally, time is running out. Be sure to register today. Complimentary rooms are first come / first serve. You can find out more and register here:
With hope and purpose,
Wednesday, April 23, 2008
You see, we did this last semester. We got to go and look at all of the things that she and the other children had done. With the way that Sydney's school grades progress this is about the only way that we could compare her to the other kids. This is important to us because, while it is all fine and dandy to see a chart of all of the tasks that she can accomplish, it really does not give us a clear picture of what she should be doing and how she compares to others her age. Don't get me wrong. I am not in it for the competition. I simply know that the likelihood of some long term neurological side effects from Sydney's treatment are probably pretty likely. I need to know when she is not doing things that others her age can do. I need to know when she is lagging behind. Finally, she misses a ton of school for doctors visits and scans and I need to know what to work on to help her keep pace. Without a scale or a chart to compare her to the standard I really have no idea of where she stands. That is the most frustrating thing I find about the new grading trends.
So, how is she doing! Well, well, well, you would not expect me to do all of this build up if I was not going to brag a bit. My daughter is stellar. She has totally surpassed my expectations for this year. You see, I was just hoping to catch up - to stay up with the pack. I was hoping not to see an exception at the bottom of the curve and had prepared myself for the possibility. What I was not expecting was to see her work to stand out as a model of what can and should be done. Now, I don't want to stand here and say my kiddo is the best or the greatest (although she is) but to rather show you her improvement and to show how far she has come. In the beginning there were many things that she was doing below the level of the other kids in her class. Yes, at the beginning of the year we were still catching up. She was not at the bottom of the class but she certainly was not at the top and there was a huge gap. She was lagging in many, many areas. For example, her handwriting was almost completely illegible and all of the other kiddos seemed to have better letter formation. However, as of last night, that had completely changed. I looked at every child's handwriting and was completely shocked to see how much better Sydney's handwriting was. Hers was picture perfect. I mean literally. She could write the books on correct letter formation. It was brilliant. I don't mean to compare but it was now miles ahead of any other in her class -not even close. I found this trend to be consistent with much of what she did. There is clearly a pattern in her work of going from the worst to one of the best. Most importantly, I did not discover any of those areas that I was to be concerned about. She is making tremendous progress. I have to take back all of the things I said about not wanting to see all of the scribble scrabble. It was the best and most fun thing we could have done with our evening.
Purpose just keeps pushing forward.
Tuesday, April 22, 2008
Monday, April 21, 2008
You also may have noticed that Lynley, the kiddos, and the Norman-ator all made their appearance at the walk as well. Sydney walked all 3 miles by herself. She even got to walk it with her kindergarten teacher, Mrs. Lewis. Graham walked the better part of half of the 3 miles and rode in the rest of the way on my shoulders while I brainstormed with Dr. Granger. I was pretty surprised that Graham had made it that far as he was still recovering from a cold. Little Ainsley also made it much of the way before grabbing a piggy back ride for the remainder of the walk.
Believe it or not I spent much of my time discussing a new nano technology/Irinotecan adult trial which appeared to have implications for children with neuroblastoma. If I am being honest, I never had a really high level of excitement regarding these discoveries. To me, it was just a modest improvement on an already available chemotherapy. How much would it improve efficacy without increasing toxicity? How much improvement would it really offer? Personally, I have always been far more interested in the truly novel therapies that have the potential to be a home run. That is my area of great hope. However, I do understand the need for better and more targeted drugs. I "get" the need for improvement, however, I am looking for the cure. Regardless, I have heard about this technology's use with Irinotecan from enough people and I figured it was about time that I truly submerged myself in the research to form a real solid opinion of what I think about it. I still don't have the answer as I have not completed my research but I am still shocked by all of the people that seem to be so excited about the technology. In the days to come I hope to have pulled together some worthwhile thoughts.
Well, I had best be off. I have a ton of things to do. I am already buried and the week has not even begun.
There is purpose afoot.
Friday, April 18, 2008
Thursday, April 17, 2008
I am off to purpose and a 4 hour drive:)
Wednesday, April 16, 2008
Tuesday, April 15, 2008
Kids are great when it comes to birthdays. If you are an adult and you have not been around young children you are truly missing something special. Watching and sharing with them is, once again, a reminder of what is important in life. They absorb themselves in every detail and every one is very, very important. What kind of cake daddy - nila or chocolate? Mm Yum! Whats gonna be on your cake? Are you going to have a golf cake? What kind of decorations? Are you going to have American Idol plates? What kind of "pupcakes" are you going to take to work? You can't open your presents until dinner! Mommy got you Superman wrapping paper so you can have a Superman birthday.
As we grow up we begin to forget what important decisions all of these are. Our birthdays lose some of what makes them special. Face it, everyone deserves a special day at least once a year - even if you are an old curmudgeon like myself. I think we should all be required to get party hats, select a theme for our dinner plates, and pick the decorations that go on the "pupcakes" that we take to work. This is one time that we really should take the lead from our kiddos. Since when do birthdays have to just mean one year older? It is a celebration of life. That is what I am going with. I think I will listen. In fact, I think I just might have a golf cake. I just wonder if they make "Mythbuster" party hats. Regardless, if you are on your way to work stop by Starbucks, grab an espresso fudge brownie, and celebrate with me - it beats a pupcake any day!
I am always learning from my purpii.
Monday, April 14, 2008
Oh, by the way, seconds after this innocent little picture she pulled all of the legs off of a lady bug. Do I have to tell you again? This is the one I will have to worry about.
Well, I am happy to announce that I read the MIBG scan correctly. Her arm is clear. As for her abdomen, well yes, it lit up like a Christmas tree. The good news is that none of it is disease. It is simply normal organ uptake. It is great news and now, well, now we wait. The waiting will be the hard part. It will be 2 and a half to 3 months before we look back again at her arm. Boy, that makes me nervous. I know there are many out there that probably think I am nuts for allowing them to wait that long. Honestly, I still have not decided how I feel about it. No, I would like to scan more often but, at what risk does that come? What do we gain by scanning more often? This is one of those decisions, like so many others in the land of neuroblastoma, which will come back to bite you if you are wrong.
If this is neuroblastoma, scanning earlier would, perhaps, allow us to catch the disease more quickly. I have always said that less disease is better than more. However, on the other hand it will take time for her arm to heal. At what point will we be able to distinguish disease from biopsy trauma. At what point will this go from being a questionable spot on the bone scan and MRI to definite disease. What will the trigger be? How will we know? In this sense, if we scan in a month what will we gain? If it is bigger, what will we really have learned? Will we be any more sure that it is disease? I don't think so. Sadly, I don't think any scanning in the short term will provide us any clear answers. In short, we will just subject her to more pokes and more hazardous chemicals.
Clearly the way purpose looks can be deceiving.
Friday, April 11, 2008
As you might imagine, I was pretty pleased with yesterday's little scan. Sydney stayed perfectly still for the 45 minute nuclear lashing and seemed quite happy about it. After the excitement, I rushed her back to school where she spent the remainder of the day engaged in the rigors of learning. I had the opportunity to spend the remainder of the day working diligently. That was a good thing as I had a bunch of last minute items to get to Erik Ludwinski's family for their Lunch for Life dream vacation to Walt Disney World. One could say that the last minute rush was unnecessary and that I should have been more prepared. I would say - "What would be the fun in that?" Our lives have been infused with chaos permanently so a little last minute hustle is just like icing on the cake. It takes much more than that to get the blood boiling.
We spent our evening, as usual, out in the back yard. It was the perfect evening. Unfortunately, Lynley and I were stuck removing several inches of oak pollen from the top of our deck and the bottom of the pool. With five tornadoes in the area the night before there was plenty of cleaning to be done. Regardless, everyone chipped in and it was not long before we had filled a 90 gallon waste cart with the sniffle causing stuff. The kids got to swing on the swing set. Graham and I got to play a little catch with the baseball. I even got treated to a steak dinner by my blushing bride - I just love when Kroger has a special on ribeyes ($4.99/lb - get 'em while they last!)
All in all, it was a pretty good day on the Daddy scale.
Which, by definition, is pretty high on the purpose scale too.
Thursday, April 10, 2008
One of the things that I have not mentioned much as of yet is the 1st Annual Neuroblastoma Walk for a cure on Saturday, April 19th. The idea of this walk was started by a little girl that was friends with Michael Mancuso who lost his battle last year. Ironically, another friend of their family was diagnosed with neuroblastoma at the end of last year. This little girl decided to have a walk to benefit the neuroblastoma program at Cook's. Although I generally shy away from supporting fundraisers that do not support research initiatives through the CNCF because I happen to believe that they utilize research dollars the most wisely and effectively, I do believe in this event and I think it is important for neuroblastoma. The important thing is that we are out there to support the families and the wonderful things that the oncologists are doing at Cook's for neuroblastoma. If you live in the Fort Worth/Dallas area I am asking you to come out and support the kids and the walk. It is important that we create as much awareness as possible. The $15.00 entry fee covers the cost of t-shirts and refreshments. I encourage you to get one but, even if you don't or you can't afford it, please come out and support the walk. Your precense will be tremendously appreciated. The walk will include many of the families and children that have neuroblastoma. Please take a few hours out and show your support. More information is available by clicking on the Neuroblastoma Walk badge on the top of the menu on the left hand side. Sydney, Graham, Ainsley and I all look forward to seeing you. Bring your friends and family and come support a tremendous and meaningful cause.
It will be a walk with purpose.
Wednesday, April 9, 2008
Today Sydney has her injection for her MIBG scan. Unfortunately, the peripheral IV that she worked so hard to preserve, blew yesterday morning. For this reason, she will have to go through the process of having another IV placed again today. We know it is going to be tough for her but we are hoping that it goes more smoothly than two days before. Today we will let them use her right arm which has a much better track record of success. I really do not want to see a repeat of what we saw the last time.
Yesterday we really had two things to celebrate. While it was tremendous news to hear Sydney's scan results we can't go through the day without announcing a very important first for one of our other Dunganlets. It seems that Ainsley made it through her first entire day at school without a diaper. Yep, it was her first attempt to go to school with big girl underwear. Not only did she go to school in her green and pink polka dotted underwear and green jumper but she came home in the very same pink polka dots and green jumper. It seems that we have crossed a huge milestone in the Dungan Journey. Having spent my last 7 years with at least one child in diapers I really don't know what to say for myself. It seems so strangely foreign. What will I do with all of my spare time. Honestly, as much as I am proud and happy, I am also a bit sad. Our last baby is all grown up.
Well, I had best be off. There is much to be done. Hopefully, for both of my girls, it will be an uneventful day. I think I will say a little prayer.
A breath of purpose
Tuesday, April 8, 2008
I guess everyone is probably wondering about the results. Well, we still don't have them which is surprising and a little scary. It tells me that there must be some discussion going on. I have no idea what the MRI will come to show. However, I can tell you that the bone scan was certainly worse. Quite frankly, that was pretty much expected. We were expecting it to come back a little bit more pronounced due to the biopsy that she had about a month ago. The good news that came out of it was that we did not see any other spots lighting up on her bones. We were, obviously, very pleased for that. That was the purpose of the scan. The question then becomes "how much worse was it?" and unfortunately I just have no frame of reference to compare. It was worse. I don't know if this was an appropriate amount of activity to see related to the biopsy or if was more than expected. Unfortunately, I fear the latter. The spot of the biopsy was certainly more vivid but I am also pretty sure that the surrounding area of uptake was both larger and more pronounced. Unfortunately, I don't have the scans in front of me to compare so I have to go off of memory. Regardless, I am pretty sure that I am on the money.
The other concern that I can not seem to get from my mind is the fact that we put her into another position to take another shot of her arms. I don't know why. At first, I was led to believe that they were trying to get another angle that was comparable to a previous scan but that did not turn out to be the case. I fear that he saw a spot that I did not and he was actually trying to get another picture of it or more clarity. That is the worst fear.
For as bad as all of this sounds it is all just speculation. It is just the crazy stuff that goes through your mind when you are in the midst of this journey. Hopefully this morning will bring some clarity and some peace.
With hope and prayers,
Monday, April 7, 2008
I am praying and hoping - with purpose!
Friday, April 4, 2008
Thursday, April 3, 2008
This is the stuff of which purpose is made.
Wednesday, April 2, 2008
Now the irony in all of this is that (a) we told him to be careful and (b) not to make a mess. This was Graham's version of not making a mess. You see, we stopped at the park to eat our ice cream because we didn't want to make a mess. We were driving in a rental car (Lynley's is being repaired) and we didn't want it to be completely destroyed. Ironically, you can not smoke or have pets in a rental car. The true irony is kids are far more destructive to a car's interior than either of those. They are mini disasters in a major way. There was little to clean him up with before we left to go back home in the car. This picture was after I had already used 4 napkins on the boy.
Isn't this what purpose is all about?
Tuesday, April 1, 2008
Well, first thing, I should tell you that all of the children survived the weekend - some of them even happily. Everyone made it through relatively healthy and unharmed. The only kind of shock that we received came on Saturday evening. We finally received the FISHing report for NMYC on Sydney's biopsy. After all of that work I can finally tell you this - INCONCLUSIVE. Technically this is neither good nor bad - simply annoying. It really does not mean a thing other than that they could not get any results from the sample. This is certainly better than an absolute "Yes it is disease" and only slightly more meaningful than a we could not find anything. Regardless, I will take it.
The big surprise that came yesterday was a front page article on the Lunch for Life Cookbooks in the Fort Worth section of the Fort Worth Star Telegram. I knew the story was coming but I just did not know when. Surprise, surprise. It was yesterday. The article was extremely well written and appeared to drive home the important points. I was very pleased to see the world "neuroblastoma" in caps. It was certainly there out in the open. One small step for the author, one huge step for pediatric cancer kind. It was awareness. Here is the article for your perusal.
http://www.star-telegram.com/local/story/553255.html. I am very thankful to Susan Tallant for writing such a great story. Thank you.
Well, I had best be off. It is time to play catch up to a lost day.
Purpose back in overdrive.