Friday, May 29, 2009

Last Day of School

Woo hoo! The last day of school! You may be wondering why I am so ecstatic. Well, yes, I will be happy to have my kiddos around the house again. There is something entirely wonderful about having them nearby. However, that is not it. The reason I am so extremely excited to have them out of school is because that means I can get some full days of work in. These last two weeks have been ridiculous. It seems like everyday there has been some kind of ceremony, celebration, or half day. I suppose it also hasn't helped that Ainsley has been sick. But, that is not the point. On Monday, Claudia will be here. There will no longer be 30 minute commutes to and from school every morning and afternoon. I will go from working 9 hours per day to 10 or 11 or maybe even 12 and, better yet, I will get to see the kiddos even more often.

Yes, I am excited.

Now, a quick update on twerplet number 3. We visited Dr. Debbie yesterday and it has been confirmed. She has an ear infection. No exposure. No contagion. Just a simple ear infection. Now I am just hopeful that this little infection does not go through the rest of the kiddos. Yes, I know that ear infections are not contagious. But, as I will clearly point out to Dr. Debbie, they are in my family. Look at our history. It is the most amazing medical coincidence in decades.

Regardless, we are off to celebrate.

Have a great day!

We will be purposefully celebrating.

Thursday, May 28, 2009

A febrile birthday

Unfortunately, Ainsley's fever did not stay down. By about 8:00 AM Ainsley's temperature was back in the normal range. Given that and her desire to go to school, we decided to let her go. It did not last too long. By about 11:30 the school had called. Her fever was back and it was time for her to come home from school. This was bitter sweet. She did get to go to school on her birthday. However, this exit would also mark her last day as our Jewish Dungan family representative. This would be her last day of school at the Lil Goldman Early Learning Center. With a fever, she is not allowed back at school today and tomorrow is a Jewish holiday. Although this school would continue for another two weeks, Ainsley will not be attending as she will be staying at home with Claudia who is coming back on Monday to care for the kiddos throughout the summer. We will be taking her back to school for their year end party but, as of yesterday, well that was pretty much it for Ainsley.

The good news is that after Ainsley's afternoon nap she made a pretty speedy recovery. I can't really tell you whether she had a fever or not as we kept the Tylenol flowing but I can tell you that she woke up this morning fever free. Regardless, the point is that she got to enjoy her birthday evening. The crowning moment was the receipt of Grammie's gift, her very own Tinkerbell big girl bike.

It wasn't long before she was hitting the streets on her very own.

Watch out America! Purpose on wheels!

Wednesday, May 27, 2009

Happy Birthday Ainsley!

Today is Ainsley's 4th birthday. Wow, is it amazing how time flies!?! I can't believe our youngest is now 4. That makes me 35, 36, 37 - really old! I have found that, as my kiddos grow older, I seem to age exponentially. Lynley and I seem to measure ourselves by our youngest. You can still be young when you have a 2 year old or a 3 year old. This rings true even if you have another child that is 15 or 16. However, once your youngest is getting up there in age you can no longer fake it. You are just old. We just vaulted over that milestone. We are now decrepit.

I guess this entry really should be more about her than my own age insecurities. After all it is her birthday. However, I wasn't the only one to steal her thunder this morning. It seems she woke up feeling sick this morning. A quick check with a thermometer showed a temperature of about 100 degrees. We gave her a dose of Tylenol which seems to be improving the situation but we know we are just masking the symptoms. A 6:00 AM mom report alerted me to an ever reddening throat. I am guessing that part of her birthday surprise will include a trip to see Dr. Debbie. I am quite sure that was not in her birthday plans. We are debating whether she will still attend school. As long as her temperature continues to respond and she seems well enough, we will let her go. As you might imagine, this is a big day for her and she doesn't want to miss it. There is nothing better than celebrating your birthday at school.

Well, I had best be off. I have a little munchkin that needs some attention.

Purpose awaits.

Tuesday, May 26, 2009

Remeber why I am here

Well, I guess you could tell that it was a long Memorial Day weekend. It seemed as though, just as quickly as it began, it was over. I am quite sure that feeling will continue throughout this short week. You see, this is the last week of school. The twerp excitement alone could be enough to make this week seem short. Couple that with a holiday yesterday, a shortened day on Friday, a mass of end of school events and what you have left is almost no school at all.

Of course, that is just fine with the gaggle. It would make them happy if summer simply began today.

Yes, it does not matter to them. This is all just high time in the life of a kiddo.

Unfortunately, for us big kiddos it is a bit of a different story. We have this little thing called work that we have to "work" around it to make sure we can attend all of these end of school festivities and shortened days. This, of course, left me working most of last weekend. I have several deadlines and, of course, they are all due this week.

I just have to remember by job as a Dad.

Don't bring the stress home.

It is all about the purpii.

Thursday, May 21, 2009

A day at the zoo

Good morning! Today is a day of hooky. But, shhh, don't tell anyone. This morning I will be going with Ainsley and her class to the Fort Worth Zoo for a day filled with animal revelry. I have often wondered whether a group of 3 and 4 year olds get more pleasure from seeing the animals at the zoo or whether it is the other way around. I am guessing that today I will find out.

This little escapade has been in the plans for quite a long time. The first time it was cancelled due to weather. It was then rescheduled and again canceled, but that time, due to the swine flu. Today I have my fingers crossed. The weather is perfect and I don't think we are any more at risk of disease than we would be on any other normal day that we would be surrounded by a grubby gaggle of 3 and 4 year olds.

It should be a great day and a wonderful opportunity to spend some quality time with Ainsley.

It should be uproarious - and purposeful.

Wednesday, May 20, 2009

A lesson on the horizon

This morning will be a very quick update. Sydney has a part in a production at chapel this morning and needs to be there quite a bit early. I am happy to say that her swimmer's ear is greatly improved. I am hopeful that by the end of the week she will be ready to hop back into the pool.

I do have a few minutes so I will tell you about something that is in the plans. On Monday night at Tae Kwon Do it was announced that they will be having a tournament in about 4 weeks. Tournaments include sparring, breaking, and forms. Sparring is a form of fighting. They will wear padded helmets and protective gear. Breaking is the act of breaking boards. Forms are a form of choreographed fight. They have to perform a series of kicks, punches, and movements in order. We signed both Graham and Sydney up for the competition and they will be participating in all 3 areas. Graham was ecstatic. However, it sent Sydney into fits of hysteria. This was an expected reaction and, frankly, one that we were looking forward to. It is getting through these bouts of fear that is exactly the reason that we put Sydney into these classes. You might think that the fear is from being hit. That is not it. The fear is from being embarrassed and laughed at. YOu might think this is a small fear, however, for Lynley and I who have battled with this fear in our lives know that it is far stronger and for more dibilitating than the fear from bodily injury. This is about establishing the cornerstone of confidence. This is about teaching her to believe in herself. This is a perfect opportunity to teach her that she can do anything that she sets her mind to and will hopefully instill the confidence she lacks. The irony in the whole situation is that, for the most part, she is far superior in talent than the others in her class. Whether she knows it or not (she doesn't), this is an easy challenge for her. In my eyes, this is a perfect opportunity for success. I truly believe this tournament is going to mark a significant turning point in her life.

She will begin to believe in herself.

She will find purpose.

Tuesday, May 19, 2009

A refueling weekend

Good morning! Well, it is now Tuesday morning and I am guessing that everyone must have realized from my phase 1 post yesterday that, even though I did not discuss it, somehow, we must have made it through the weekend. That was indeed the case - although barely. My mean, slave driving (yet beautiful, intelligent and love of my life) wife relegated me to yard staff. She went nuts. I can't say that my life was any more difficult than hers. After all, she planted some 150 to 200 plants herself. My only point is to say that I did not get my well deserved nap. Additionally, she also made me trim the holly bush. It is evil - and pokey. Had I received a nap and had she not made me trim the holly you probably never would have heard a peep from me. However, since she did and this is the only form of protest I can get away with, you get to listen to me whine and complain.

I will show her.

The children survived the weekend as well. However, I can't say that they were particularly happy either. Saturday brought in a cool front and significant rain which kaboshed all plans for pool filled weekend. With pool temperatures falling below 74 degrees and air temperatures starting in the 50s, itn was not conducive to their dreams of swimmers delight. In all actuality, this was not a bad thing. Sydney has already developed her inaugural case of swimmer's ear and needs to be staying clear of the pool for a few days anyway. She is back on Floxin for the next 5 days and is under strict orders from Dr. Debbie to keep her ears from getting wet.

Other than these two issues the weekend went off with out a hitch. Somehow the kiddos found a way to keep themselves happy and my wife ended up with a beautiful back yard.

You know what that equals, don't you?

happy kiddos + happy wife = one ecstatic hubby

Life is good! My purpose is refueled.

Monday, May 18, 2009

The important things to know about phase 1 trial design

Last week we talked a little bit about phase 1 trials. The major point that you should have walked out of that discussion is that phase 1 trials are generally not aimed at being therapeutic. They are all about finding dose. In this way, phase 1 trials are good for quickly finding the maximum tolerated dose. This is for the greater good of children with neuroblastoma. It is good for the group as a whole. Unfortunately, it is not necessarily good for any particular child. It is, however, what we are given. Like this disease, it is the hand that has been dealt. Now, it is our job to figure out what we should do for our child given these imperfect circumstances.

Again, I routinely advocate for phase 1 trial designs that have a better chance at providing good for the individual patient. The point is not to say that the current system can't be improved. However, right now, it is what it is and we have to make intelligent decisions based on the options we have before us.

Most phase 1 trials that are ongoing right now use what is called a 3+3 design. The trial begins with 3 patients at the smallest dose. This dose is usually 80% of the adult maximum tolerated dose. This is good news because the trial is already starting at a dose which is 80% of what the adults could tolerate. The first 3 patients that start the trial are then watched over a certain period time for side effects or other toxicities. If none of these children experience significant toxicities the investigators then raise the dose to a higher level and 3 new patients are tested at the new dosing level. Keep in mind that in this system the first 3 patients never receive a higher dose. They are, in effect, stuck at the dosing level at which they began. This process of raising the dose, watching 3 patients and then raising the dose again, continues until they begin to see some significant toxicities. At some point, they generally hit a level where there are too many toxicities. At that point, they go backwards and reduce the dose back down to the level of the previous group of patients. They then expand that cohort and add 3 more patients. Assuming their is little toxicity in this group this becomes the maximum tolerated dose (MTD) 0r the highest dose we can give safely of the drug or combination.

Now, it should be noted that this is generalized. The system is more specific than this but it gives you the general idea of how this design works. Assuming you are considering a trial with a 3+3 design, you now understand the gist of it.

You may have noticed that I never said the maximum efficacious dose or the dose that works best. You are correct. That is not the purpose of this trial. It is to find the maximum tolerated dose not the dose that works best.

So, what do you learn from this? First, you realize that the dose is changing. Most likely, if you participate early in a trial you are less likely to receive benefit because you are less likely to achieve a high enough dose to provide benefit. If you participate at the higher dosing levels, you are probably more likely to see some benefit but, you are also more likely to experience toxic side effects. Your job as a parent is to figure out where your child fits in.

Ask questions. At what dosing level is the trial? What were the side effects of the patients that were in the cohort before the current one? What were the responses? What side effects do you expect to see? At what level?

You may not get answers to all of these questions but it is a good start. By asking about and investigating what happened with the drug in adults or in animal studies you may be able to get a better picture of whether or not this will be likely to work for your child. At what kind of plasma levels did the drug start to work in mice? In adults? Given the current dosing level, what do we believe the current levels are? In other words, are we at a dosing level where we can expect to see benefit?

You see there are lots of questions and they are critical if you are going to make an informed decision. It is not as simple as asking if phase 1 trial drug X is good? It may turn out that the perfect drug may be in a phase 1 trial for your child. However, if the drug is at too low of a dosing level or too high it may not be a good decision for your family. Secondly, you may be in a position where you can wait and do something else while the trial gets to a more appropriate dosing level. There are some options. You just have to learn enough to know what they are. I am not guaranteeing answers - just more opportunities to find them. It is not a perfect world.

So, here are some rules that you should also consider:
  • Don't expect the highest dosing level to be the best. There are a couple of great examples in neuroblastoma where more is not necessarily better. In other words, the drug appears to work better at a dose lower than the MTD.
  • Don't assume your primary oncologist knows the answers to these questions. Do your own research. Email the primary investigator or pick up the phone.
  • Talk to previous patients if you can find them. These are brand new drugs or combinations. There is no history. Talking to someone that has been through the trial will give you valuable information that is not available anywhere else.
There you go. Some of the things you should be thinking about in relation to phase 1 trials. This, however, has only to do with the structure of the phase 1 trial. In the next article I will tell you how to go about answering many of these questions and some other considerations.

The most important thing you need to realize is that phase 1 tirals have different dosing levels. Different results and toxicities can be expected at each dosing level. This is one of the biggest points that people miss. They try to compare one phase 1 trials with a phase 2 or something else. I can't tell you how many times I have heard someone claim that treatment A was better than B because treatment B only had a few responses in its phase 1 trial. Well, what if all of those patients that had responses all had them at the same dosing level. In that case, if you can get drug B at the right dosing level it may be a better option than anything else. It may actually be better than drug A. In fact, it could be the cure. Bottom line, be analytical. Understand the trial so that you can make the best of it for your child.

I am off to more purpose.

Friday, May 15, 2009

CH14.18 Survival Results (+20%) Published at ASCO

What everyone should know about phase 1 trials - part 1

When you step into the relapse world, all of a sudden, you are faced with phase 1 trials. The problem with phase 1 trials is that we, as parents of children with neuroblastoma, see them as therapeutic - in other words we see them as hope to make our kiddos better. The problem is that, by their very nature, these trials are not aimed at producing a result. The true intent of these trials is not to cure the cancer. In fact, it is not even to help it. Phase 1 trials have one mission in life. That is to see how much of a drug or combination of drug we can give without creating horrible side effects.

Do not make the mistake of assuming that these trials are designed for the benefit of your child.


The trick, however, is to figure out how to use them so that they will work for your child's benefit!

I do not mention phase 1 trials in this context to keep people from participating in phase 1 trials. I believe they are extremely important. After all, Sydney was a part of one. They are a necessary step in trying any new drug or combination. We must first see if it is safe enough to give and how much of it we can give safely. This "test" has to be performed somewhere and on someone. That is the purpose of the phase 1 trial.

This "purpose" is not because the researchers do not care about our children. It is not because the government is beating down on the man. It isn't because of bureaucracy or because people don't understand.

It is simply because, if we are ever going to make any discoveries of new drugs and therapies, we must first define their safety in some test subjects - yes, our kiddos. It is a necessary evil. It has to happen.

Again, the trick is still to figure out how we can use them to our child's advantage.

So, why do I tell you this? Well, this is one of the most common issues I see with parents facing phase 1 trials. Often many of the most important points are missed. This is critical because even though phase 1 trials are not designed to be therapeutic they still can provide benefit and we, as parents, must understand them well enough to evaluate them. We must understand all of the issues related to the trial design and the drugs preclinical and adult track record to make the best decision possible. This is often often complicated by the fact that our children have a very small window to start the next therapeutic option. Chances are we will never have perfect timing on any one trial. Thus, we have to be able to evaluate them quickly and prioritize them so that we can make the best choice possible. Often the chance of a particular drug or combination working in a phase 1 trial has less to do with the drugs and more to do with the timing. That is the critical determining factor. Does your child have disease that will be susceptible to the drug or combination? Is he or she eligible for the drug at a time when the drug is most likely to work. Is the drug at a dosing level where it is even expected to work? Is the trial even open when you need it or is it in a planned closure to review toxicity? This last point is one of the most overlooked. Most phase 1 trials have planned closures at the end of each dosing level to evaluate toxicity. This means that during these times no one can become part of the trial until it is reopened. Did you know that some of our most effective phase 1 trials actually spent more time being closed than open. Again, this is not because the researchers are mean and ill hearted. This is federally regulated stuff. Our investigators don't have a choice. It is simply a reality that we must interpret and determine how it effects our child.

Regardless, my point is that timing is usually a bigger issue than anything else in evaluating a phase 1 trial and in determining the likelihood of whether it will work for your child. To me, it is almost more important than the drug(s) itself(themselves).

So I could write a series of entries about phase 1 trials. As many of you know this is one of my biggest areas of interest. I have advocated for years for better (more therapeutic) phase 1 trials. Through this process I have learned a ton. I now have a pretty good understanding of the issues from both sides. It is from this perspective that I have learned that while it is nice to advocate for better trials, drugs, and designs it is also important that parents really know how to deal with and interpret the options that are before them now.

Over the next few weeks I will be writing several articles on this topic. It is too complex to discuss in one simple entry. After all, I have just spent a page talking about the issues of phase 1 trials and I haven't even begun to mention their structures which are another important aspect of judging the appropriateness of their timing.

So, for a bit, you will have to put up with reading my technical dribble. The good news is that, by the end, I promise you will know exactly what to ask and how to evaluate the appropriateness of any phase 1 trial. You will be equipped to find the absolute best answer for your child in a world that seems full of a bunch of half-baked questions.

Think of it as your own personal purpose gun.

Thursday, May 14, 2009

Twerplet Injection

Good morning! After two days of technical neuroblastoma rants I figured I had probably give an update on the fam before I received a slew of angry email from our loyal twerplet followers. First, you should know that, as of this very moment, everyone is healthy. I do not know what tomorrow will bring but, considering the fact that they have been rather dedicated to dipping themselves into a 76 degree swimming pool, I honestly have no idea of how long that will hold. So, let's begin with what we know now.

Ainsley - Well Ainsley is apparently on a diet. I don't know what has gotten into her but her appetite has undergone a drastic change. In fact, I really don't know when she eats. I am hoping that she is really wolfing down her lunch because what I see at breakfast and dinner is unimpressive. I have grown tired of cooking foods that she does not eat. Now, you may be thinking that we are feeding her something she does not like. Nope! In fact, with the exception of one meal we have had in the last two weeks, all of the meals have been ones that she has previously cleaned her plate. She has even refused to eat her bananas or her eggs in the morning - 2 staples that she has always eaten. I have watched all of the kids go through episodes like this so I am not too concerned but it is something we are watching. It is a bit alarming when the carrot of candy can't seem to keep her motivated to eat. I think this is just a momentary spell in twerphood but we are watching. Outside of that she is a champ - completely and utterly normal for her. She is doing great at school and at home.

Sydney - Sydney has been the busiest of all. In fact, yesterday she had another crown placed on one of her baby teeth. You may recall that these were due more to the structure of her teeth and less to do with brushing. Although, if I am being totally honest, the child does need to be a better brusher. Everyone at the dentist was amazed at her calm composure and her ability to calmly go through the procedure. I, on the other hand, was not so impressed. I guess I have become complacent with her extraordinary tolerance. It is a pretty amazing trait and when I really think about it, it is pretty impressive. Her ability to stay calm, cool, and collected when it comes to many things is developed well beyond even my own. There is a relaxedness about her that absolutely fills the room.

On the other hand, she had difficulty with one of the new kicks that she was learning at Tae Kwon Do. For once, Graham was able to pick up something more quickly that she and it sent her into a free fall. There were tears and she tried, politely, to quit trying. If I am being honest, I love opportunities like this. This is the training ground and the exact reason we signed her up for Tae Kwon Do. We want her to learn that you can't be perfect at everything on your first try. I want her to know, though, as long as she keeps trying she can accomplish anything she sets her mind too. It is only when she fails at learning this important lesson that we get to address it and help her get through it. So, if I am being honest, I like it when she fails. This is when we have the opportunity to face it and to learn from it. It is these experiences that will help her get through the rest of her life.

Graham - What can I say about Graham? Graham is probably the hardest for me to write about. You see, I always write about what is different. You know, what exploded today, what emergency, what ridiculous event transpired. That is generally not Graham. He is my consistent one. Nothing ever shocks me about Graham. He is the most kind hearted little person I have ever met. I have never seen anyone try harder at being good. I put nothing past him and I can always guarantee that he will give his absolute all to whatever he does. Day to day there aren't many surprises with or in his life. It is because of this that I do not think he gets the coverage in my diary that he deserves. I don't want, however, his incredible contributions to go unnoticed. He is an incredible wonderful little boy. He is my dudely - my little hero. I live him with all of my heart. He is a keeper.

So, there you go - a twerplet recap.

I love my purpii.

Wednesday, May 13, 2009

So I am in a tizzy, eh?

Good morning! So, yesterday I received a ton of email. It was very supportive. Well, that, or emails from people curious as to which trials had me all in a tizzy.

I am not going to mention them.

I really genuinely hesitate mentioning any of the trials. Yes, I personally believe some are worse than others. I believe from the standpoint of helping a child with neuroblastoma there are many options that at many times are completely inappropriate. To me, it is much less about the actual drug or trial itself and far more about the patient, the disease, and the timing. For example, everyone knows I believe in antibody therapy. It is no secret (and by the way it is now proven by a phase III trial.) However, there is a time and a place for antibody therapy. There are points in therapy where it works best. It works when you have minimal disease. It works when you have marrow disease. It works to a lesser extent on bony disease. However, given current medical technology, it is absolutely useless against solid tumor.

So, I would say that I think antibodies are probably a worthwhile consideration if you have have minimal residual disease. However, if you were going to use them with a big tumor in your child's belly and you were expecting great success I would be concerned, very concerned. I would tell you to talk to other parents of children that used antibodies with big tumors. I would tell you to review the research and I would tell you to talk to an expert. I would hope and pray that you would pick a different direction - at least initially. This is because, chances are, the antibodies would do nothing but cause pain and give the tumor some opportunity for progression.

So, that was a hypothetical situation but, believe it or not, over the years I have actually seen that decision made.

No, my concerns were with current trials. It was not so much that the trials were bad or the drugs were bad but more that the timing of the therapy was inappropriate either due to the treatment itself, the toxicity, or the dosing level of the trial. Finally, there are also a few trials out there that are very popular but with which the data simply does not support. There are a few trials out there that parents have made incredible claims that are flat out false. They have literally claimed that incredible responses that were never proven.

That bothers me.

That is why I always suggest that people look further. This is why I ask people to ask questions. In many of these cases these miraculous "responses" were actually quickly followed by death. In many cases these responses were not actually considered responses by the medical community. They sounded good but they were ultimately nothing. Remember, changes in HVA/VMA alone do not constitute response unless they are hugely significant. Second, solid tumor necrosis needs to be confirmed by biopsy. The list goes on.

Just be skeptical. Ask questions.

Step purposefully.

Tuesday, May 12, 2009

What do you do?

This is one of those entries that will probably brand me forever for being full of myself. However, I run into this problem more often than I would really care to admit. With the exception of maybe 2 or 3 families, I really have not said anything when I truly felt like I should. It is always a hard decision. What right do I have?

What do you tell another family of a child with neuroblastoma when you know they are making a bad decision?

I know. It sounds like I am offering an opinion. But, I am not. What do you do? What if you know the outcome? Do you tell them? And how do you do that?

I have spent years talking to other families. I absolutely never offer any medical advice but you can be sure that I will put them in touch with experts who will. I arm them with questions to get to the truth. I try to guide them without providing any bias. That is a relatively simple thing to do. The problem seems to be that even given my best efforts they still make a poor choice.

Why do I know it is a poor choice?

Because I know the outcome. I guess I have been in this game too long and have seen too much but at some point it all becomes pretty predictable. It happens over and over. Patient with disease has treatment X. Patient responds for Y. Patient progresses. Patient marrow spent. Patient succumbs to disease. I know that sounds cold. Yet, child after child and family after family will follow this pattern. It happens every time. There aren't surprises. I guess if they know what the outcome is then it is fine to make that decision. However, when you walk into that situation with the expectation that something different is going to happen, I think there needs to be something that raises the red flag.

I don't say this to be full of myself. I say this so that others are aware. Weigh your options. Look for successes. Balance your child's exposure to toxicities. Don't just participate in a trial because someone says so. Don't just participate in a trial because some one says they had great success. Look at the outcome. The question is not how they think they responded to the first dose. The question is where is the child 1 or 2 years down the road. Did they ultimately survive? Did the therapy routinely work? At what cost? How did this one trial fit into the overall picture? What was the quality of life?

I don't ask these questions because I feel like going on a rant. I do it because I don't believe these questions are actually being raised. If 95% of kids that do treatment X die within 6 months (regardless of their miraculous responses), and 20 to 30 % of kids with treatment Y eventually end up in remission and 75% are alive at 1 year, which treatment would you choose?

Believe it or not, I can't tell you how many people I see choosing path X over path Y. I don't know what they are being told but I see them all with great expectations.

I think it was Einstein that said insanity was doing the same thing over and over again and expecting different results.

Yet, we do it. I cringe nearly everyday.

Be skeptical. Ask questions. See the proof for your own eyes.

Okay, so I probably deserve a public lashing. But, at least, this may make someone think twice.

It may save lives.

I just can't keep my purpose shut.

Monday, May 11, 2009

Ah, Mother's Day

Okay, so, I get Mother's Day. It is really not that hard to grasp the concept. My job as Daddy is to make sure that Mommy is happy on Mother's Day. I take all of the kiddos the week before the big day. I help them buy presents for Mom that are from the bottom of their hearts. I even help them make their own cards. I have this Daddy thing down. In fact, I have it ingrained in my psyche so much that I even know that I am supposed to do everything in my power to make sure that Lynley has as easy a day as possible.

I get it.

The kids, too. They know. I have branded it into their scheming little brains. This is Mom's Day. No fighting. No making messes. Today is about Mommy. Not you. That means being nice to each other, cleaning up after yourself, and doing everything in your power to help Mommy have a great day.

You see. I run a tight ship. Even though I am generally a complete failure at Valentines Day, I have Mother's Day down. I have got skills.

What I don't have is a wife that listens very well. She is supposed to be relaxing and enjoying. But, no, is that what she chose to do on Mother's Day? Of course, not. I wake up at 5:30 in the morning to find her mopping the floors and dusting the house. This, of course, was being done to a house that was neither dirty or dusty. I was not very successful at getting her to slow down. So, I did the next best thing. I emptied the dishwasher, cleaned out the recycling bin, and tried to look busy cleaning things whether they need it or not.

It, by the way, is very difficult to clean things that aren't dirty. I felt completely guilty and entirely stupid. There I was busily wiping down counters that were only dirtied because I sprayed Lysol on them. It felt goofy cleaning something that clearly did not need to be cleaned. I felt dirty. Regardless, she mopped the clean floor and I wiped down the clean counters and although it felt really awkward it, none the less, made her very happy - a sense of accomplishment I guess.

yYou should also know that I did not plan Mother's Day. It is supposed to be relaxed. But, other than that, I leave it to Lynley to lead us in whatever direction she wants to go. I am a smart enough husband to know that I can't read her mind. I also know her well enough to know that strict plans are not what she wants. She is looking for freedom.

So, we did what she wanted to do. We started with breakfast which was quick, but yummy. It was not at the house so there would be no clean up. It was also fast so we could get on the road to do all of the things that she wanted - like running errands.

Yes, you heard me again.

We took the dogs to the vet for some shots because, well, she wanted to. Then, we ran by Redbox to pick up a movie because, well, she thought that would be fun. Then, we shot to the grocery store because she wanted to go as a family instead of me going alone. We made it home just in time to put the groceries away and feed the kiddos "picnic style" before some family visited. By about 1:30, thoroughly exhausted, the house was clean, Graham and Ainsley were down for naps, the dogs were free of disease, and the groceries were shopped for. All that was left was to sit down and quietly watch a movie.

Being a professional at relaxing I had fallen asleep within about 15 minutes of the movie that she wanted to see. When I woke up I found the movie still playing and Lynley out in the yard cleaning out the flower beds.

That lasted until about 5:00 PM.

That evening we had my mother over and shish ka bobs for dinner.

At the end of the night I asked Lynley how her Mother's Day was.

She said it was nice but too busy. I was smart enough not to say a word.

I get Mother's Day but I don't know if I will ever understand mothers.

It just never gets out of their system.

They never stop being mothers. They overflow with purpose.

Friday, May 8, 2009

Do we look that stupid?

Good morning! To this day, I am still utterly amazed at how stupid my kiddos think we are. Furthermore, it appears clears as day that they generally believe we have become more and more unintelligent with each and every twerp. It is apparently a double whammy of stupidity that we, as parents, have fallen into.

Ainsley was the last at the dinner table. There she sat with a pile of green beans. The deal with dinner is that you don't have to clean your plate. You have to try everything but you don't have to eat it if you don't like it. However, if you want to eat dessert, you have to clean your plate. The good news for the kiddos in our house is that we really don't ever give them foods that they truly don't like or can't eat. In fact, green beans, are a pretty awesome compromise - everybody likes them. Don't get me wrong. They aren't any one's favorite food but everyone eats them.

I tell you this to make the distinction. Ainsley had a pile of green beans on her plate but she simply didn't want to eat them. She wanted candy instead. She is clever. She waits until we are paying attention to something else and then sneaks up to put her plate on the kitchen counter and say "Can I have dessert?" She is hoping that we are so engaged with what we are doing that we will just say "yes" without checking her plate. Her strategy never fails. It is predictable - every day.

While I understand that in their eyes I am just a dunce parent, I must tell you that I do secretly have some level of cleverness. The minute she put her plate down, I paused my conversation with her mother and told her "No, you need to clean your plate if you want dessert." This lead to the usual complaint "I don't want to" which they honestly believe should hold weight in the clean your plate world.

It doesn't.

She grabbed her plate and went back towards the table. Lynley and I turned around and returned to our conversation. Within about 45 seconds she was back in front of us with a clean plate. "Daddy, I ate them all gone." To be honest, it was a bit hard to hear over the sound of rushing water from the toilet in the bathroom. I asked her where she hid them. She told us they were in her tummy. I walked into the bathroom. The toilet was still filling with water but there were no signs of green beans.

I decided to lie.

"Ainsley, there are green beans in the toilet. Why did you put them there?"

"I didn't, it was Graham."

"Ainsley, why did you throw your green beans in the toilet."

"I thought I ate them but I forgot."

She didn't get dessert and she wasn't very happy. All she ended up with some time in time out.

How can they possibly think that they could get away with this. Ainsley is our 3rd kiddo. How dumb does she they we are?

Apparently, very.

I guess I am stupid with purpose.

Wednesday, May 6, 2009

Neuroblastoma Heads Up

I am sure this entry will make plenty of people pretty mad but, to be fair, it is a subject that drives me absolutely crazy. There are several parents out there in the neuroblastoma world that are touting new drug combinations for relapsed and refractory children. I am bothered by this because so many of these combinations have little support for efficacy in kids with neuroblastoma. None the less, because of the hype (and false hope), these therapies are being chosen over known treatments that we know have an effect in children with neuroblastoma. In many cases, these choices end up preventing kids from getting the very therapies that have the absolute best chance at getting kiddos into a sustained remission. There is a time and a place for "last ditch effort" testing but it is not for someone that is newly relapsed or even a child that still has options with some of the most tried and true relapsed and refractory therapies.

Somehow with all of this hype these new options have become leading relapse choices for parents. They claim fantastic responses but I am yet to see one who has had a response that would be considered "real" in the medical world. I am yet to see a response that is any better than standard relapse chemotherapy. Families are choosing these unproven combinations over therapies which we know have produced good results and in many cases have put kids back into remission. For example, I can't tell you how many kids I have seen achieve a second (or first) remission with MIBG therapy and / or antibodies - but, there have been many. These are all relapsed and refractory kiddos - the worst of the worst. Furthermore, I have also seen kids maintain years of remission after refractory or relapsed disease with all different kinds of low dose agents that are available and have proven track records. Most importantly, these are all drugs with a response history in kids with neuroblastoma. These trials have parents with children who can talk to you and tell you about their experience.

Maximize your options!
  • Choose therapies and options with the highest response rates before jumping into the unknown.
  • Be conscious of the toxicities - known and unknown.
  • Consider the impact and recovery of the marrow from every regimen. Sometimes a high dose therapy can be appropriate if it provides the possibility of sparing the marrow in the future.
  • Be critical of everything you hear. Verify responses. Make sure they are real.
  • Find the successes. They are out there.
I have no intention of telling you what to do but, as another parent, I ask you to look at these things logically. When you talk to other parents consider the successes that they had. Go to the source. Talk to the successes. Learn about the preclinical research and, where applicable, look at the response rates of other kids (make sure they are real - minor changes in HVA/VMA are not considered real responses in the medical world unless they are extremely large differences or confirmed by another method). When you look at combinations of drugs (even known ones like topotecan and cytoxan) that are adding other experimental drugs make sure their response rates are at least as good as the combination alone and not worse than the same combination with another drug.

Ask questions. Look everywhere.

Do it with purpose.

Tuesday, May 5, 2009

Back to reality or is it?

Wow, a day back to reality. Yesterday everyone made their way back to school. I did not know what to do with myself. It had been a week since the kiddos had been diagnosed with strep. That was immediately followed by school closures due to the fear of the declaration of a flu pandemic. That has not come as of yet but I am afraid that we will soon hear that we have an actual swine flu pandemic. I don't know what that will do to the kiddos school but I suspect their could be another closure.

Sydney and Graham are both at Southwest Christian School which is not part of the Fort Worth ISD. So, even though all of the schools in the FWISD are closed throughout the remainder of this week, SCS decided to reopen yesterday. Given the fact that more and more schools throughout the Dallas / Fort Worth Metroplex are closing by the day, I am beginning to think their school days are still numbered.

Although the numbers of the swine flu are growing, I am not much of an alarmist. We already have years of practice of keeping ourselves in isolation and germ free. We are taking the necessary precautions and trying to get the kids into the habit of staying germ free - if that is even possible. Given the current temperament of the disease in the US I am not too worried about our safety this time around. I am more concerned about what we will see this fall.

However, even with that said, I am most concerned about Sydney. I know, I know. I should be over the fact that she is no longer immune suppressed. I just don't know how much I trust the fact that, with all that she has been through, that her immune system is 100%. I just don't know if the immune system ever recovers from all of the chemical abuse these kiddos sustain. I could be wrong but I just don't see it. I just think we still have to be that much more careful.

Well, I had best be off. I have another busy day of work ahead.

My purpose awaits.

Monday, May 4, 2009

The beauty of absolutely nothing

Good morning! Today will mark the end of 4 solid days of kiddodom. Sydney and Graham will be heading back to school today. Ainsley, on the other hand, well, we are not to sure about her. Her preschool follows the school district when it comes to school closures related to the weather. We don't know whether or not they follow the same policy when it comes to flu closures. So, today, either she will or she will not be going back to school and only time will tell. That leaves my schedule a bit up in the air. Thankfully, I don't have any meetings scheduled for today.

We really have had a great 4 days together. The trick has been keeping them occupied and well exercised when most of their activities were restricted to the inside due to the weather. Lynley and I decided that the best way to accomplish this task was to boot them out into the streets and that is exactly what we did. We took them on adventures.

Everyone was a little stir crazy - kiddos, dogs, and parents. So, in order to usher sanity back into every one's lives, we all went on long walks throughout the neighborhood. I say long walks because we often spent almost two hours on these adventures. Let me paint a picture for you. One Dad walking three dogs on leash followed by 2 kiddos (Graham and Ainsley) on big wheels one Sydney on foot and one Mom bringing up the rear. We received some of the strangest looks as we made our way throughout the town.

Each day our goal was to go somewhere we had never walked before. That led us to some fairly busy streets and major intersections but that did not stop us. We just kept moving on. 1 Dad, 3 dogs, 2 twerps on big wheels, one daughter, and one mother. Off we went. Rain or shine. You would be surprised at how much fun we had on these adventures. Most importantly, we absolutely wore everyone out. I was almost sad to see the weekend end knowing that Monday would come and we would have to wait another 5 days before heading out on another one of our adventures. It was a great reminder of how much fun we could have together doing almost absolutely nothing at all.

I love my family.

I love my purpose.

Friday, May 1, 2009

Pigs Fly

Well, I guess that since it has been covered by the national news everyone must realize that one of the reasons that I did not write yesterday was because all of the kiddos were home from school due to the district closing. Well, that and the fact that I had stayed up until about 1:30 AM in the morning dealing with kiddos that were having trouble sleeping and a puppy who had decided to spend the evening whimpering.

So, this is day 2 (of a possible 9 school days) that the kiddos will be home due to the H1N1 flu closure. I must say that the kiddos were excellent yesterday. They kept themselves occupied out in the playroom and gave me the freedom to get a bunch of work done. I don't know what to expect from today but I imagine I will be spending more time entertaining them and less time working. I can see them being in harmony for one day - but two. Wow, that is a stretch. Who knows, I could be wrong.

Plus, I really would like to spend some quality time with my rugrats - the merry band of twerps.

I really can't believe this whole swine flu pandemic. I am amazed at the response and all that has transpired. However, I have been surprised by a lot that has transpired over the last year. Had you asked me last year if I believed that a black man could be elected president I would have said "When pigs fly." Then, much to my surprise, on Obama's 100th day of office - swine flu.

I know - groaner - but it is worth a laugh.

Have a great day.

Mine will be full of purpii.