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.
Tuesday, May 12, 2009
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.
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.
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!
Ask questions. Look everywhere.
Do it with purpose.
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.
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.
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.
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.
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.
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