August 2007 Posts

4:42 AM 8/1/2007

Yesterday I went about my normal business of picking up the kids at school. My first stop was by Ainsley's room. It is always an incredible experience to pick up Ainsley. There is nothing quite like seeing that smile and feeling that first hug as she comes running into my arms. Some people have a morning cup of coffee to get started, some have a cigarette, some have a cocktail in the evening, and some even use drugs. I will take a hug from Ainsley everyday. There is nothing better than that feeling. It is sustaining.

The second stop is the next door down the hall which just happens to be Graham's class. He has long since out grown running into Daddy's arms but that does not mean I was without a huge sense of relief and happiness when I saw him. Let me explain. As I made my way into his room yesterday I saw, Victoria, one of his class mates, dressed to the T's in a princess gown. I then looked to the right and found Beckett, Graham's best friend. He, too, was dressed from head to toe in a pink princess gown. He had a frilly lace shoal, a diamond and silver tiara, long white silken gloves, and he was shoed in a lovely ruby encrusted 2" pink pump. The look caught me quite by surprise. I chuckled to myself and blurted out the first thing that came to my mind. "Why, Beckett you sure are beautiful today." He was flushed and said thank you. All of a sudden uneasiness washed over me. My mind put two and two together. What could my son possibly be wearing? Would he, too, be wearing a princess gown? In my heart I just knew. I just knew he was going to be wearing a frilly dress - my son! Where was he?

My eyes scanned the room and then did a double take in the far back left corner. There he was. We was gruff. He had on black cowboy gloves with a big manly black cowboy hat. What can I say? I was somewhat shocked but entirely proud. I can't say that this ranks up there with defending his sister's honor in the playground but it certainly brought a smile to my face. Another example of my boy making a good choice. What a sense of relief!

I eventually made my way to my third stop down the hall were I found Sydney full of hugs for all of her friends and raring to go. With her I received a great big hug and some immediate requests for swimming once we got home. Yes, I know my place here as well. I loaded up the gaggle and we made our way home where we worked in our workbooks, we read some of Sydney's junior readers, I tossed the football with Graham, had a snack, and then eventually made it out to the pool with mommy. All in all, it was a perfect day.

A regular day of purpose. How thankful I am!

5:56 AM 8/2/2007

Good morning! Well, yesterday Lynley and I finally committed ourselves to putting Sydney back on cis-retinoic acid (Accutane). There was really no clear direction here and I decided that it was time to stop putting it off. It might have been easier had someone with an actual medical degree suggested this treatment plan but I had some doubts since it was my own idea. I was honestly shocked (or bothered) by the lack of dissent as I passed my idea around the pediatric oncology community. I has really expecting (or hoping) that someone would tell me it was unnecessary or not a particularly good idea. I wanted them to tell me to just leave her alone and let her go on with life. I wanted to be scolded for continuing therapy. I guess I wanted all of this so I would have confidence that her situation was not as dire as I potentially know it could be. In a way I was looking for hope. Had the oncologists balked at this idea it would have been clearer that she had a potentially good prognosis - at least equal to those coming straight out of standard therapy. Alas, that was not what I received and I guess I knew that all along. The problem I think is that I know too much about much of this and I simply hate applying it to my daughter. In this way and given her history, I know logically that her chances at survival are low. For obvious reasons, that is very hard to accept emotionally.

The good news is that we have a plan. I have a series of steps clearly laid out in my mind and I know them to be solid. Furthermore, I know that they are the best course of action for her - carefully balancing quality of life with continuous low dose therapy. Hopefully, we can maintain this type of therapy for as long as possible and maybe even reach that point when we can say that we actually have a cure. In the meantime we will do everything we can to maintain her current disease state (NONE).

Now, Accutane, were do I begin? Well, this is her third shot at 6 courses of Accutane. She will we be taking 60mg twice per day. That is 3 pills in the morning and 3 pills in the evening and we will do that for 14 days straight and then we will rest for 42 days. From our past experience we have a pretty could idea of what to expect. Her skin will turn red and begin to peel in earnest. We will do our best to manage those side effects with vitamin E oil and aquafor which seem to work well for her. If you happen to see her over the next two weeks you can expect to see one greased up little girl. We will also work hard to protect her from the sun whose effects are only multiplied when she is exposed to this much cis-retinoic acid. The other fun things that we can expect are phantom pains - both abdominal and in the legs. So, be prepared for me to go mental. On that note, we should also prepare for her to go mental. Irritability is one of the other side effects I clearly remember. Finally, we will also watch for some things in her blood work. We are looking for things like hypercalcemia which would mean that we would have to back down the dose.

I am also going to try to schedule some pharmakinetic studies for Sydney. There is not nearly enough time to get into this right now and I will address it in one of the days to come but it will hopefully give us a clear indication that she is at least receiving enough of the drug to be effective.

Well I had best be off. The fun has begun.

My purpose is still churning.

5:47 AM 8/3/2007

Yesterday was not a good day for Sydney. In fact, it was awful and quite possibly worse than awful. Now, the first thing I don't want to do is scare other parents from using Accutane. We have used it before for 12 courses and rarely experienced problems outside of the common side effects. In fact, it is quite possible that the issues Sydney had yesterday were a direct result of our own negligence. I tell you this story because I don't want anyone to make the same potential mistake that we did. I will start out by telling you what happened and then we can go through the process of identifying the cause.

Sydney started her first 60mg dose on Wednesday night. Then, yesterday morning she received another 60 mg dose. This was the correct dosing for someone her size and stature. At lunch time yesterday afternoon at school, Sydney doubled over in pain. It was not long before she was throwing up all over the place. Lynley and I raced to the school to pick her up where we found her continuing to throw up. Sydney would throw up about every 10 to 15 minutes for the next 5 hours. She also experienced sporadic severe abdominal pain. As anticipated (I will explain later) she then recovered to eat a complete dinner, watch movies, and play with her brother and sister. She has slept comfortably overnight.

So, what happened? Well, Lynley and I think it is a pretty clear indication of a Vitamin A overdose (hypervitaminoses A). Keep in mind that Accutane is basically a fancy version of Vitamin A. After racking our brains to discover what might have caused this somewhat violent reaction we remembered that Sydney had taken a vitamin earlier that morning. Now, we know that we are supposed to stop her from taking any supplements during this therapy and the reason is because of exactly what happened. Lynley and I knew better and we should have been paying closer attention. We knew not to let her take a vitamin. Regardless, the cure for a Vitamin A overdose is to stop taking Vitamin A and just wait until it clears the system. Accutane clears the plasma in about 16 to 20 hours so we just had to wait it out. Thankfully at about 4 pm she started making some earnest improvement and by 5 she had her last episode.

Lynley and I are both kicking ourselves but we are also not really excited about the idea of continuing Accutane. It is something that we will have to think through. We want to continue to treat Sydney with low toxicity therapies but as you can see, even some of the most benign can raise their ugly head when you don't watch carefully enough. Truth be known, there are some other potential side effects of this treatment that could have caused Sydney's episode and it would take a blood test to get to the bottom of it. Hypercalcemia can also cause a similar reaction however I don't know how realistic that diagnosis is given the amount of time that she was exposed to Accutane. Since I did not have my handy serum calcium kit or pocket daddy lab we did not run this test and were not excited about the possibility of running her to the hospital and subjecting her to a bunch of pokes. We know she would need to have some labs before restarting the therapy so why poke her twice. Sure, we would have known it was hypervitaminoses A or hypercalcemia but either would have been due to the fact that she had both vitamin A and Accutane.

The great news in all of this is that Sydney is fine and dandy and there should not be any permanent effects but, ultimately, this was caused because we were not paying close enough attention. Even though we recalculated all of her doses and we were taking all of the precautionary steps we simply missed it. This is not a vote against Accutane. This is just an example of being extremely careful and it shows the power of Vitamins and why you should never mix cancer therapy with supplements unless you have first discussed it with your child's oncologist.

Well, I am off. I have to fly to Chicago for a CNCF board meeting this morning. Have a great weekend.

Purpose requires vigilance.

5:05 AM 8/6/2007

I am back to home sweet home. It was an incredibly busy and tiring weekend but it was also one of the most productive meeting that I think we have had in history. There were so any great things to come out of this meeting and I can't wait to see them all begin to move forward. This meeting included our board, obviously, but it also included some representatives from our medical advisory board. This was fairly unique for one of our board meetings but it was incredibly interesting to receive the feedback and input from these neuroblastoma researchers. Both parties received insight into the various priorities and goals of the other and we discovered how we could best make these sometimes differing goals work together. It was incredibly interesting and productive.

For me, it was also interesting from the perspective of the fact that Sydney just had such a strange reaction to Accutane and Dr. Patrick Reynolds just happened to be at our meeting. Why is that important? Well, if Dr. Reynold's isn't the father of Accutane's use in neuroblastoma he is certainly amongst the royal family. To his day he is considered to be the authority on retinoids (like Accutane) and their use in kids with neuroblastoma. This was quite lucky for me. Here, I just had a problem with Accutane and I had access to one of the world's leading experts. How often does that happen?

So, what did he tell me? Well, he thinks I am nuts. He does not think that Sydney could have received enough Vitamin A with that sequence of events to develop hypervitaminosis A or hypercalcemia even though the symptoms were spot on. He finds it very hard to believe that she would have achieve plasma concentrations much above 3 micro molar and that is not a whole lot considering the round is structured at 14 days of therapy to try and achieve plasma levels between 5 and 10 micro molar. He also thinks that had she had one of the conditions I mentioned before that we would have seen some other things as well. He also thinks that it is quite possible, however, that Sydney could have developed an allergy to Accutane and that is probably the more likely of all of the scenarios.

But, come on! What does he know? Who are you going to believe - me or some world expert? Yeah, yeah he is probably right just because he has studied this for a living and he is, after all, the authority on the subject but that still doesn't get me much closer to an answer. The fact remains that the possible causes that I have suggested are quite reasonable. The symptoms fit the diagnosis perfectly and you should never give a vitamin during the same period that you are administering Accutane. Those are known commodities. It is just unlikely that you would see this effect this that early on. As a side note, he also scolded me for giving Sydney ice cream in the morning. Jokingly he said that was enough to make her sick to her stomach. While that probably isn't the case I don't know that I would not change that up if we restarted Accutane. I was doing it for a twofold reason (a) Sydney needs to take Accutane with fat to help increase the absorption and (b) it has always been a nice reward for her taking her pills.

So, where does that leave us? As you can imagine Lynley is not real excited about restarting Accutane. I am not necessarily either but I would be interested in getting to the bottom of what happened. I think the medical community is somewhat ambivalent as to what we do right now. While they all clearly understand the arguments of why it "might" provide some value I don't think anyone is really willing to do it if it is creating such toxicities in Sydney. That was never our goal. I think it might be worthwhile to try a couple of days at a reduced dose to see if we might be able to reproduce a much smaller version of the reaction. That would give us a clearer picture of what is going on and perhaps identify a cause of the toxicity. If she experienced symptoms we would know not to give it to her again. However, if she does not respond the same way we could ratchet up the dose and see if it was related to something else. It would certainly give us some more information. Regardless, I am going to run it by her oncologists here and see what they want to do. Well, there you have it - murkiness and no definitive answers.

Had I forgotten what purpose was about already?

5:09 AM 8/7/2007

Good morning! Well, we are back to some level of normalcy. Yesterday all of the kiddos were back at school and Lynley and I were back into the grind. It was a busy first day of the week professionally but we also have a bundle of things to do for the kiddos. The first is for Sydney. Along side all of the normal end of summer beginning of school activities we have a few new challenges. The first is a doozy.

Last week we were watching Cleo. Cleo is 4 year old black standard poodle. She is the neurotic canine progeny of the Robertson's. As a cool way to express Sydney's love towards Truman Lynley and she decided it would be a good idea to keep Cleo while their family went on vacation to Walt Disney World. Cleo was set to stay with us for about a week. The good news was that Cleo and Hogan (our golden retriever) were great friends and really enjoyed each others company. In fact they spent the entire week attached to each other by the ear. Seriously, one of them was always biting the others ear or hanging on as the other galloped around the yard. Like Truman and Sydney is was a strange love if I ever did see one. Regardless, we were stuck with the dog, I had nothing to do with it, and yet I was somehow left in charge - typical dad stuff.

We were warned that Cleo was a pretty good dog but that we should be careful to leave underwear and socks from laying around. Apparently they are yet to break of the habit of indulging herself in this fine delicacy. That was just fine with me. I expected no more of a Robertson. We made an effort to ensure that her environment was free of any type of undergarments. Other than this, life went on pretty much as normal. The kids loved having Cleo around and Hogan was enthralled by the companionship. Other than the fact that I never saw her sit down in the entire time she stayed with us she was a perfect little minion. Until....

Apparently Cleo did not only have a taste for undergarments and one afternoon we got an unfortunate surprise like no other. The kids and I were in the pool. While getting ready Sydney took out her hearing aids and set them out on top of the table for safe keeping. This was standard stuff. She always took good care of her hearing aids when it came to swimming. Nothing was particularly different about this afternoon. We enjoyed swimming and splashing around. As Lynley and I made our way back up onto the porch Lynley noticed something on the ground. One of Sydney's hearing aids had been totally demolished. As we scoured the surfaces for the other we noticed a very sheepish Cleo who was lying next to another nearly demolished but thoroughly destroyed hearing aid - complete with teeth marks. We never really identified how she got up onto the center of the table to get them off but what we were sure of was that they were completely gone. A rather large purchase straight down the toilet.

In the days to come we came to terms with Cleo's mistake. After all, it was our responsibility to watch her and she was under our care when she committed this egregious act. Life went on. Sydney, however, was more distraught. In fact, to this day you can find all of the little destroyed parts to Sydney's kitty ears in a little baggy which she keeps under her pillow at night. I think she was hoping for the tooth fairies partner in crime "the hearing aid fairy" to make them all better. Heck, I was all for the idea. If a fairy will give you some money for a dead old tooth they must give you a rather large check for a destroyed hearing aid. Needless to say, we are still waiting it out to see what happens.

So, this week, we have another challenge. We have to schedule a couple of appointments to get all of the pieces in place to get Sydney another set of hearing aids. We will need to test her hearing and then go through the process of getting her ears molded and selecting a new version of the infamous kitty ears.

That is purpose for you. It isn't all fun and games and sometimes you just have to keep moving forward.

5:24 AM 8/9/2007

Good Morning! I missed an update yesterday. Well, unfortunately, stuff happens. The good news is that nothing awful happened. I was up late working and then much of my slumber was disturbed. It seems that the girls have come down with something.

Ainsley has a common cold. There is lots of drainage from her nose and she has been tugging at her left ear occasionally. She has also been sleeping a ton and somewhat excitable when things do not go her way. That is fairly atypical for Ainsley who is the princess of letting things roll off of her shoulders. This is just the common cold and nothing serious but worth taking her to the doctor to ensure that she does not have an ear infection.

Sydney is the funny one and the real reason for my lack of sleep both last night and the night before. She has two symptoms and as much as I love her and obviously concern myself with her medical care she is milking this for everything it is worth. The night before last she woke us up four or five times and last night was nearly the same. I can certainly understand her need to be comforted by us but I honestly have to say that being woken up for the fourth time because her nose is stuffy seems a little overly dramatic. The problem is that she is not only waking Lynley and I. Her flair for the dramatic leads to much clanking and chaos which is always enough to wake the household.

This morning I woke to her literally screaming "Mama!" at the top of her lungs from her bed. I rushed in to find her dabbing her eyes with a Kleenex. She complained that her eyes were stuck shut. This brings us full circle to the problem at hand. Sydney has some sort of eye infection and what seems to be a common cold. That is it. I don't want to sound non sympathetic but I am having difficulty mustering the degree of concern that she probably sees as being justified. She has been to the brink of death. She has endured a stem cell transplant, surgery, months of chemotherapy, and years of painful antibody treatments without much more than a word. And yet, listening to her, this stuffy nose and eye infection is quaking her to the core. It would be funny if it were not so tiring.

Regardless, yesterday we made a dash to the doctor to get everything checked out. Both received antibiotics - one for Sydney's eyes and one for Ainsley's snots. Between the two of them they have the common cold coupled with an eye infection and the possibility of a burgeoning ear infection. We have tried to convince both of them that they will probably survive but I just don't know that we are getting through.

It is a case of dramatic purpii-tis.

6:23 AM 8/10/2007

We Dungan's are playing hooky today. It seems that with all of my traveling as of late that Lynley, rightly, laid down the law. I have been grounded to spend a day with the kiddos at the water park. That is a pretty nice punishment if you ask me. However, I am not even allowed to touch a keyboard. Even sitting here writing this entry in my diary is dangerous. Considering the fact that I have three rugrats cuddled up next to me on the couch, it is probably a good idea that I stop skirting the law and give up the keyboard for a kid day in earnest. Have a great weekend.

I have purpii to the max.

5:53 AM 8/13/2007

Friday was a dark day in the Dungan household. Graham went to school and played with Beckett. During recess he played soccer with a group in his class. Unfortunately Graham missed the soccer ball and with that the winning goal and he got beat up. Later that afternoon a tornado hit his school and sucked him up. Lynley fell off the diving board, bonked her head, and had to go to the hospital. Finally, Sydney was run over by a boat.

At dinner time it is a Dungan tradition that we tell everyone about our day. On Friday evening, when asked, the preceding paragraph is what Graham had to say about his day. Now, the irony in all of this is that this came just mere hours after we got back from NRH20, a local water park. You should know, we spent the better part of the day at the water park. We floated around the lazy river, rocked in the wave pool, splashed in the tadpole children's area, and spent hours riding the many slides in Frogstein's Splashatory. In short, we did everything a munchkin could do at NRH20.

What Graham did not do is go to school, play soccer, or with Beckett. Additionally, I am quite sure that there were no tornadoes in the area as it was a beautiful day. Furthermore, I happen to know that Sydney was no where near any boats and Lynley did not jump off of a diving board. In short, it was nothing less than a perfect vacation day.

Now, where Graham got these ideas into his head I have know idea. My jaw dropped to the ground as we all sat around the table listening to Graham tell us about his day. Lynley and I struggled to keep a straight face as he described his various adventures. I will tell you for sure that it officially brings everything in to doubt that he has ever told us about his time at school. I guess the little Dudester has finally hit that age where he is experimenting with his imagination. He is using creative stories (lies) to try and make everyone around him laugh. He is having great fun. You just can't trust him nearly as far as you can throw him.

The good news about all of this nonsense is that we had a spectacular vacation weekend despite Graham's interpretation of the events. We spent the following day at the Fossil Rim Wildlife Park and then spent yesterday around the house relaxing and swimming in the pool. All in all, it was a tremendous time both for us and the rugrats.

My purpii continue to surprise me.

5:37 AM 8/14/2007

Good morning! Well the transition back from vacation mode to work mode is virtually complete. The only unplanned addition to our raucous weekend was an ear infection which Sydney's ear finally succumbed to. Thankfully, this one has been associated with little to no pain. In fact, the only reason that we realized that she had a problem was because of drainage that was coming from her ear.

We spent last night at the roller skating rink of all places. Southwest Christian School had a back to school party for its kindergarteners, first, and second graders. Most of Sydney's friends were their with the exception of only one or two. The important part was that Nathan, her pride and joy, was there to be admired. Roller skating was a new experience for Sydney and Graham. It was not long before I had them suited up and ready to go.

I probably should mention that I too geared up for the event - talk about a flashback to the 70s. Regardless, as head nimrod in charge I was given the tasks of remembering how to skate while both not embarrassing myself too badly and not endangering the lives of my children. Surprisingly we all made it out to the floor without killing ourselves. Graham took the first fall but that was nearly the last of the night. Sydney, however, would take many tunbles but I honestly think that her problems were more mental than anything.

Had I not been Sydney's father I would have thought the next story to be pretty cute. Since I am, I still have to think of ways to torture the young man. None the less, here you go. As I mentioned a bit earlier Nathan was at the party. One thing that you just have to love about Nathan is that he gives every impression of being a truly kindhearted soul. Anytime I have ever seen him around my daughter he has been nothing but a gentlemen. In fact, I would have to say that he has the manners of a much older twerp. He has treated my daughter with nothing but the utmost of caring and respect. This night was no different. It was not even a minute that we were on the floor that he approached us. Nathan was on his own inline skates and although he was quite a ways from mastery he had definitely acquired the important skill of staying on his own two feet. Sydney was still doing the 2 foot shuffle, inching forward with every small step. It was not long before she fell. Nathan was the first to offer a hand. She took it with pleasure and he carefully got her back into the upright position again. They would make a complete circle around the rink, hand in hand. It would have been completely and utterly adorable had it not been my daughter.

During their jaunt into lasciviousness I helped Graham make his way around the floor. He would occasionally fall but he was committed to doing it himself (ah, the mind of a 3 year old). Every time that he fell he would bounce right back up and within seconds he was skating again. It was not long before Graham had earned his wheels. Although he is not quite doing tricks he can make it around the rink quite safely.

As the evening wore on Nathan and Sydney would eventually split and Sydney would see many friends. She continued to take tumbles and it was not too long before she was convinced to give up skating for good. Not unlike I suspect most six year olds are she refused to take instruction from her daddy and found some satisfaction in simply hating skating. This is a fairly typical reaction for Sydney. If she can't do it perfectly the first time then she never wants to do it again. She is an incredibly undedicated quitter which just drives me bonkers. This is one of my greatest frustrations as a parent. Especially considering the fact that I believe that you must fail to succeed. Sydney, however, just quits and is quite content to never do that activity again regardless of the fact that she never gave it an earnest try. I have to figure out how to overcome this. I need to figure out a way to teach her without her knowing it. She needs some significant success after some significant failures to prove to her that she can do anything that she puts her mind to. I don't care if she fails as long as she tries. I just don't want to see her quit. I don't even care if she doesn't like skating. That is fine. Just get good enough at it that you can make an informed decision. I have a feeling that I need to take her back to the skating rink everyday for a week to teach her how to skate. This might just be a perfect opportunity for her to see success first hand. Heck, she might even like it. I think I will probably even video tape it so that she will remember how hard it was before she conquered it in the end.

I can't believe that after all she has been through she could possibly have this outlook on life. She has faced much larger demons than this. I just have to convince her of it.

That's my purpose.

6:15 AM 8/15/2007

Good morning! Well, yesterday was a perfectly ordinary and average day. Sydney was quite happy as she was the only one in her class at school and received one on one attention all day long. She really thought this was the way that it should be all the time. Graham and Ainsley both had ordinary and average days at school as well. However, for some reason when they all got home they decided to explode into badness. I have never seen anything quite like it. It is as if I had step into a nasty chapter of the lord of the flies. There was pushing and shoving. There was name calling. There were 'he did its' and 'she did its'. Of course this was all followed with tears and screaming. It is if the great switch of stupidity had been magically flipped on. It did not take long before the were all in time out and separated to play quietly by themselves. This would have been awesome had it worked but this was only followed by 'Daddy I need's and 'Daddy I want's and then jealousy as they fought for my attention and help. I picked up the kids at 3:00 pm and at about 4:00 pm was ready to take them back or to trade them in on friendlier models.

I know I am supposed to have some great story about how the family with a cancer kid is supposed to find some great meaning behind the most mundane of things but sometimes it just isn't there. Yesterday was just such a day. It was ordinary and then followed by a twerpisode of badly behaving snots. I can't find much meaning in that but I can tell you that as mundane and annoying as it was it was so much better than the alternative. I achieved normalcy and badness and there is something to be said for that.

Today I am simply thankful for having purpii - for better or worse.

6:07 AM 8/16/2007

Good Morning! The kiddos have all been seemingly happy at school. Sydney and Ainsley are both improving nicely on antibiotics. Graham still seems to have skirted this particular round of the snot bug. All in all, things continue to go pretty well. We still have not decided as to whether or not we will reintroduce Sydney to Accutane. Since her dramatic reaction we have been reluctant to even fathom the thought of putting her back on it. On the other hand, I have continued to talk to several oncologists. They all seem to be riding the fence. They understand the potential for benefit but certainly don't think it provides any guarantees at this point. The toxicities that she experienced leave them all fairly non committal. Universally, however, they all seem to be interested in reintroducing it in a lower dose to see if the problem recurs. They all seem to be interested in what would happen. The fact is that the reaction she had is rarely seen and they all want to point it to something else - like me giving Sydney ice cream in the morning with her pills or some other situational oddity. Most think she will not respond the same way and think that she will, in fact, probably eventually tolerate the full dosage. I, too, am interested in trying to dose her again but Lynley is pretty against the idea. I guess my issue is that I want to understand what happened and why. My curiosity is peaked and frankly I still see the potential benefit. Lynley and I will eventually come to a decision. We just need to discuss it.

I also wanted to point out an article that was left in the guestbook. I meant to talk about it today but time has slipped by. I am very thankful to Wendy for posting it. It is entitled "The Power (and Peril) of Praising Your Kids" and it can be found here:

http://nymag.com/news/features/27840/

It is a good read. I think it touches on one of the reasons that Sydney gives up on things that she can not do perfectly the first time. Perhaps my praise is hollow. Either way, I will be talking about it tomorrow.

Well now I had best be off. There is quite a bit of purpose ahead.

6:23 AM 8/17/2007

Good morning! I am off to a late start. What can I say, I was on the phone into the wee hours last night. I would love to tell you that I still had a great night sleep. I guess I could say that it was super duper but that probably would not be exactly how you may describe waking in the middle of the night to find your cat urinating on the pillow you are sleeping on. If that was how I described a good night I would probably have a few more issues than are already public knowledge. But yes, my daughter's blinkety blank cat peed all over Lynley's pillow last night. I was rewarded with Lynley throwing the cat towards my side of the bed where I could feel warm droplets spraying all over the place - my pillow, my arms, my face - yum. Nothing quite like the feeling of warm cat urine at 2:00 AM. So there you have it - my excuse. It isn't exactly a "the dog ate my homework" type of excuse but I don't think any one would hold it against me.

As a quick note, we took Graham back to the dentist yesterday afternoon. It has been confirmed that his graying tooth, the one that he smashed on the side of the pool, is in fact dying. We are going to wait until it dies completely, which is estimated at about 2 months, and then we will pull it. We discussed getting a cap at that time but we have been told that little boys have a tough time keeping them for longer than a week. So, to make a longer story short, we will have another toothless wonder running around the house. Graham will finally get his dream of being big. You see, Graham has always believed that the point at which you become "big" is when you lose a tooth like his sister. For him, it is a right of passage - a milestone if you will. Much like being confirmed at the church, getting your drivers license, achieving the right to vote, earning the right to drink alcohol and becoming old enough that your car insurance rates drop; loosing your tooth is a significant sign that you are indeed big.

Well, I know that I said I would discuss that great article but I am just not going to get to it today. The fact remains that I am tired and quite frankly I smell. I think you may already understand why.

So, with that, I am off to a strange start to a day of purpose.

5:29 AM 9/20/2007

Good Morning! This morning will be another quick update. Scan week sneaked up on us and believe it or not it all begins again this morning. Today Sydney will arrive early at the hospital to begin drinking contrast for a CT scan. This will be followed closely by a bone scan. This is just the start of a very busy week for Sydney. Ironically, this is also the week that she will start back to school at Southwest Christian.

It will be good to get another set of scans behind us. This is our quarterly opportunity to find reason to breath a bit easier - to live a few weeks in the splendor of remission before we start badgering our brains with worries of every little ache and pain. Of course this week is always a bit scary. To this day and what must be our 20th series of scan week, I know it will still be a nail-biting time. Although I have no real reason to be any more suspicious of disease than normal, it is fear on the unknown still beats inside me.

I don't know of anything in our lives that is quite like this. Every 3 months our lives completely hinge on what the scans read. It is all or nothing. Either we can go on living our lives comfortably for a few more months or the monster is back and likely here to take our daughter. There is no middle ground. It is either here or it isn't. During this week it almost feels like Sydney's life depends on the flip of a coin. Everything boils down to this - complete happiness or complete and utter despair. Life or death, that is what this week comes down to for us.

So, no I really don't expect to see anything ominous on these scans. I have no reason to. Sydney seems somewhat healthy and she is certainly happy. However, I know better than to go into this with any level of confidence. I know that it can be there without us even knowing it. Today we will hope and pray for the best and just go into this the same way that we have faced all of our other scans - one foot in front of the other.

It will be good to get through this week. My heart is waiting to beat again.

Purpose sustain me.

5:06 AM 8/21/2007

Our first day of scans went without a hitch. Yesterday Sydney successfully completed her CT and bone scan. We still do not have any results. I can tell you that I did not see any disease on the bone scan which is good news but just one small piece of this puzzle (keep in mind, I am not a radiologist, but rather, completely incompetent when it comes to reading scans). The CT scan went smoothly with no repositioning or review. Everyone was smiling as we left the room and no one screamed "Oh my God!", busted into tears, or dialed 9-1-1. If that means anything you might hope that the CT was relatively clear. This morning she will be having her bone marrow biopsy and aspiration. Actually, it will be at noon but, unfortunately, we will be beginning the process in the clinic at 7:30 this morning. It will be a long morning for Sydney without food or drink.

Today I wanted to tell you about a golf tournament that we have created to fund neuroblastoma research. It is called the Golf for Life Cup and it will be held at Mira Vista Golf Club in Fort Worth, Texas on October 8th, 2007. Event details can be found on the website at http://www.GolfforLifeCup.org. Through this event we will raise $100,000.00 for neuroblastoma initiatives. Funds raised from this event will go to support some incredibly important new clinical trials that would probably not be available to kids with neuroblastoma anytime in the near future unless we had stepped up to the plate. These are undoubtedly two of the most important research initiatives I have ever been apart of. Now, I have to put my money were my mouth is and make sure we meet our goals so that we can move these projects forward.

Raising $100,000.00 through a golf event in its inaugural year is no easy feat. It takes an incredible golf course and it will take and incredible amount of effort to make this event like no other. We have done an excellent job with the planning. It will be fun and we have brought in some incredible prizes and surprises. I have every intention of making this tournament like no other most have ever participated in. I hope that everyone will want to have their name associated with this event and everyone will want to play. So far, it is looking great! Golfers and sponsors are coming on board but we need more to make this as successful as it can possibly be for our kids.

Now, I am looking for some help and I am looking for three kinds of it. First, I am looking for families with children who have neuroblastoma to be a part of this event. This isn't Sydney's golf tournament. This is for all of us and all of our kids. The more the merrier and the more people that we can show are affected by this disease the better. Second, I am looking for sponsors of the event. We have sponsorships available from $250.00 to $25,000.00 and there is hopefully something in every business' budget. While our sponsorships come with many different levels of participation we have made an effort to ensure that each one receives significant recognition for their support. Not only will there be print, web, and radio advertising for the event and our sponsors but I will make every effort to ensure that that everyone knows who sponsored this golf tournament and supported our children. We will make a commitment that their support of us will not only be evident at our golf tournament but on our websites and places of prominence year round. I want them to know how thankful we are for their support and what incredible companies they are for standing behind our kids. I intend to ensure that every company that walks out of their experience with the Golf for Life Cup feels that they were the best dollars ever spent on philanthropy and I will make every attempt to reward their support with as much goodwill as we can muster. From an advertising standpoint, an investment in this effort are dollars well spent however, the charity derived from it will be priceless.

Finally, I need help with the golf tournament. Many of the details have been worked out but there is lots of leg work to be done. I could use the most help with finding sponsors but if you are uncomfortable with that I need volunteers for the day of the tournament and I have all kinds of discreet projects that need to be completed between now and then. I need help getting golfers. I need help finding auction items. I need help writing letters. In short, I need help making this the greatest golf tournament ever. I want this experience to be memorable and rewarding for everyone because only then can this make the impact necessary to truly help research. In this one day, we could literally move up research 5 years. I am not kidding. Please consider being a part of this tournament. No matter what your level of participation I sincerely appreciate it.

Most of the materials have been printed and I would be glad to get them to you but I have included some of the PDF versions below. Please let me know if you need any of the print versions.

Sponsorship Letter

List of Sponsorships

Brochure

Additionally, everything can be found on the website at http://www.GolfForLifeCup.org. If you have any questions or comments please feel free to contact by phone at 817-846-6085 or email at mdungan@lunchforlife.org. I would really appreciate your support.

Golf and purpose! I knew I could find a way to combine them.

5:58 AM 8/22/2007

Good morning! Well we have now made it through the brunt of our scan week. I am happy to announce that both the CT and bone scan came back clear of disease. That is a relief and a sign that we are not dealing with a smorgasbord of disease but it has always been the bone marrow aspiration and biopsy and MIBG that I have really hung my hat on. Yesterday's bone marrow aspiration and biopsy went pretty well although we did have a few hiccups. The biggest was thankfully not life threatening but had all of the potential to be something serious.

I am always amazed when we go to visit a doctor or the hospital. The paperwork we fill out is unending. In this last week I have signed no less than 20 sheets of paper and I bet I have filled out at least 10 pages of forms. It seems everyone wants to know about Sydney's full name, her insurance, her date of birth, her parents, her allergies, etc. I could really do without the paperwork but I do it because I believe there must be some rhyme or reason to it. Someone must be paying attention to all of this. I fill the same information out over and over in radiology. In the end it turns out to be a triplicate of information so I am quite sure that everyone (or atleast 3 different people) must be checking their Ps and Qs. Either that or it is an interesting test of my sanity. Regardless, we fill them out because it is something to do while we wait and, after all, they must be important.

I do know that they are eventually used. We fill out the forms and then they eventually come and grill us regarding the answers. Yes, they ask us the same questions. What is Sydney's birthday? What is her full name? What are her allergies? I am not sure of the purpose of this inquisition but I am sure there is one. I guess they have to verify that they do indeed have the right patient and they have to ensure that they mark all of the allergies down in big bold letters. Like I said, by the end of all of this preparatory stuff we have writers cramp, we are mentally drained from the grilling, and both Sydney and her chart are covered in sticky tabs, bracelets, and bold ink. I guess that with all of this checking and double checking they hope to eventually do the right procedure on the right kid with the right drugs.

This is where it all comes down to Sydney. After all of this she was given Morphine yesterday. While that is fine and dandy for someone who is not allergic to it, it is pretty frustrating for those of us that have a child with an allergy to it, been asked about it on a multitude of occasions, and even discussed with the nurses, doctors and staff on several different occasions that very day. Furthermore, Sydney had no less than two bracelets which identified these allergies boldly. Thankfully, Sydney's allergy to morphine is more of an adverse reaction and we generally don't see the nasty effects after the first dose. She usually does not start screaming at the top of her lungs and hallucinating about giant spiders coming out of the ceiling until she has had a few doses back to back. So, in that sense it was very good. I think the next time I may write "NO MORPHINE" in red glitter ink across her fore head and her buttocks just to ensure that we don't run into this little snafu again. I figure I might need to alert someone no matter what end is up.

In the end, Sydney is just dandy. She is a little more sore than she has been in the past but she has taken in it stride. As is usual, we finished our trip to outpatient surgery with a large bowl of chicken noodle soup, Doritos, and mountains of snacking. She then played the rest of the day away. It truly is hard to believe that she just had two holes cork-screwed into the back of her hips just hours earlier. We also kept her IV in overnight in the hopes that we may save her from another poke today. We will see if it holds.

Another day of purpose down. We were lucky. We know it could have always been much worse.

5:16 AM 8/23/2007

Yesterday I was blessed with a little helper. Sydney hung around with me as I went through my usual morning routine. As I wrote emails, talked on the phone, worked on the website, researched antibody binding and ELISAs, she did the same out in the playroom. She even built an office for herself, complete with a filing cabinet and cubby space. At about noon we made our way back to the hospital for her injection of MIBG. I am ecstatic to say that Sydney's peripheral IV survived the night and they did not have to tap her again. IVs have quickly become our least favorite part of scan week. Without proper planning she can be subjected to as many as 4 different IVs and that does not even include all of the missed attempts. There is no doubt, she is nearly impossible to hit. For this reason we are pretty protective of her schedule and elect to keep the IVs in if the schedule permits. This week we did a pretty good job. Sydney only received 2 IVs and one of those was under sedation. All in all, I have to rank this up there as one of her better experiences during scan week.

The hospital was followed with a trip to Sydney's school for a "Meet the Teacher" hour. Sydney's class of last year has been broken up amongst the four classrooms. Although she is no longer with her partners in crime - Nate and Ben - she has been able to keep a few of her old friends. Fred, Evan, and Isabella have transitioned into her new class. With a ratio of 10 boys to 7 girls it ought to be a bit like shooting fish in the barrel for the grimy little daughter stealers. I will have to keep my eyes out and watch closely. I have already done my best to give a dirty look to every little boy in her class. I am thinking of having a gun rack put in the back of the Suburban and maybe even a turret on top.

In all due seriousness I think Sydney will enjoy her class. She has already made a new friend in Keely who is a pretty little girl that sits next to her at her table. Keely followed Sydney around trying to plant kisses on her. Sydney was a bit shy and could not quite figure out what was going on and I was just thankful it wasn't one of those grubby boys. As I watched I also shot a mean look around the room just so all the boys would know that I wasn't approving of all of this kissing. Regardless, I honestly was happy to be there. I was thankful and ecstatic that we were rewarded with the start of another school year. How far we have come.

Today is the official start to Sydney's school year. It also marks the last of her tests. Sydney will have her MIBG scan at 8:00 AM and we will rush her up to Southwest Christian School as soon as she has completed the scan. We are hoping to get her there within about 30 to 45 minutes of the official start of her school.

Ah, oh yes, I guess you would probably like to hear about some results from her bone marrow aspirate and biopsy.

So would we!

Patiently purpifying...

5:36 AM 8/24/2007

Well, we are still waiting on results. I am hopeful that we will not have to go through the weekend continuing to bite our nails. I suppose the good side of all of this waiting is that we did not hear from them immediately. Getting a phone call while still at the hospital is generally not a particularly good sign. I would have to think that no news is good news but it still does not keep the mind from racing. The constant badgering of "what ifs" still continues to race through my head. I am being somewhat patient but it is wearing thin. I don't know how long I can keep the mental demons at bay.

Yesterday was somewhat of a jam packed day. Sydney's MIBG went fairly smoothly but we did have to reshoot her head region. Somehow her head was tilted in the first go through and some of her anatomy was showing up in places that it should not have. I noticed the issue during the first scan and we were hopeful that we might skate by but unfortunately it required a do over. The good news was that the issues did not reappear on the second scan - at least that I could tell. That made me feel a little better but not much. We reviewed the second scan with some significant magnification - more magnification than I had ever seen before. Of course, that level of clarity brought more questions into my mind as I had never seen it with such detail. All of a sudden I was seeing parts of the skull highlighted that I have never seen so clearly before. Thankfully, I did not see the same issues in the normal view but it still left me with questions and concerns. I saw things I am not used to seeing. I don't mean to be an alarmist and I must continue to remind people that I am absolutely incompetent at reading an MIBG scan. Everyone should be thankful that I do not interpret their MIBG scans because I always see disease everywhere.

The remainder of the day was celebrated as Sydney's first day of school. If you can believe it or not, she already has homework. Regardless, she had an excellent first day and she appears to have already gotten the system down. We will see what today brings.

Purposefully waiting.

5:43 AM 8/27/2007

Well, the news is finally in. Late Friday afternoon Dr. Granger called with the news. Sydney's scans were clear. She clearly was not used to giving scan results to the Dungans. She thought she could get by without telling us all of the nitty gritty details. She thought she could simply tell us that the test were "all clear." That simply is not how the Dungan's "roll." We need all of the medical language. We need to know all of the findings. I have to be honest. It was like pulling teeth. It was not that she did not want to give us the information it was just that I don't think she was used to getting into the details. Regardless, after a minute or so on the phone I still did not feel like we had all of the information. In fact, after getting off of the phone I was questioning myself as to whether or not I technically received the results from all of the tests. I guess in this case I guess you could call it a "underwhelming" success. I will probably email her again today to ensure I have all of the facts straight. I don't even know for sure whether or not her marrows were sent to Sloan or to Seeger's lab for immunocytology.

Regardless of all of this second guessing we had a pretty happy and relaxing weekend. It was good to get the stress and pressure off of our chests. Our celebratory evening on Friday night was interrupted with an "explosion" of excitement. While sitting at the dinner table we were rewarded with a not so nice aroma floating around the room. It took awhile to recognize the aroma over the different smells from our dinner but it eventually became so overwhelming that there was no doubt in our minds as to what it was. It was Ainsley. She needed a new diaper. No problem, we are professional parents and used to providing this service even at the most inopportune times. Problem, we were not used to this particular issue. As we lifted her from her chair it became clear that Ainsley had somehow misplaced her diaper. It was no where to be found. However, the contents of what would normally be contained within the diaper were ever so present. In fact, they were in her clothes, smeared on her body, ground into the chair, and plopped onto the floor. It was everywhere. My great nemesis, the arch enemy to SuperDad - human poo and it was all over our dinner table.

The rest of dinner was not normal. In fact, I no longer found myself particularly hungry. Oddly enough, Graham continued to eat and watch TV even with all of the commotion around him. Thankfully it did not take long before we had it all cleaned up. Once the room was re-sanitized it was only seconds before Graham darted from his chair and shot into the bathroom. A minute later he asked for some help. We entered the bathroom to find his clothes scattered on the floor. He was standing. There was poo at his feet...on his clothes...on the area rug...smeared on the toilet seat...and on the tile floor. I really don't need to say anymore do I. I will just leave this with my final though on the subject. It was great to hear that Sydney was clear of disease and the celebration that ensued was not characteristic of what one might expect on such a happy occasion

On Saturday morning we woke to a ruptured water line spewing from our yard. After a trip to Lowe's and some seriously manly digging I had our water back on. At this point I was just thankful that the water was still working the night before.

The rest of the weekend was, thankfully, uneventful.

Purpose and poo - not my favorite combination.

8/28/2007

Who would have thought that it could get worse than poo? I certainly did not, but, here I find myself wishing it were poo.

Yesterday I took Dee Dee along with me to pick up the kids. The first stop was Southwest Christian to pick up Sydney. We quickly parked the car and made our way in to the cafeteria where a group of her classmates were sitting at the tables. Nathan and Sydney were sitting together. You may remember Nathan as the nice young man from the back to school skating party that assisted Sydney around the rink. You may also recall that even though he appeared to like Sydney I decided to let him live because he was such a polite and caring young man.

Regardless, my mother and I stepped into the room and watched them quietly from a distance. They were adorable together. They were both coloring and giggling at one another. They were having a wonderful time. It was sweet and innocent and pure. Even I was not disgusted by this show of playful banter. Even though I am quite manly I might even describe the event that lay before me as cute. And then, all of a sudden Sydney's flirtation was becoming stronger and stronger. She was touching him on his shoulder. It wasn't a caress, was it? No, but it was a little too friendly. I began to make my way across the room. As I did this, my daughter reached over and kissed the boy.

Are you kidding me? What in the H-E double hockey sticks was this. My sweet innocent pure little daughter just reached over and kissed a boy.

Nathan seemed as shocked by it as I. He hopped off his chair and made a beeline for the teacher. Just at this moment Sydney saw me and came running. We all met in the center of the room. Nathan was the first to speak. He directed his comments to the teacher. "Ms. Lewis, Sydney kissed me!" Thankfully she was already preparing to engage me and I don't know that she caught the drift of the conversation. Embarrassed, I told Sydney that it was inappropriate to kiss at school. Nathan seemed somewhat scared. I don't know whether he was more scared of me or of Sydney but I think it was the latter. In a way, I felt sorry for the boy. I felt his pain. As I explained to Lynley later that evening, I could identify with him. There is a lot of pressure being completely irresistible. She didn't find that particularly funny. Regardless, I wanted to let him know that everything was okay and I did not blame him. I was completely taken back but I tried to reassure him. At some point I high-fived the boy. I don't know where that came from. I was just flustered. I wanted him to realize that I knew it was Sydney's digression and not his and somehow I ended up high-fiving the boy for being kissed by my daughter. I would love to hear the discussion at their dinner table last night. Anyway, I handled it as well as I could given the situation and we made our way out to the car.

I was in complete disbelief. My daughter kissed a boy. I did not know whether to laugh or cry. I tried to explain that the behavior was not appropriate but I am pretty sure that my lecture simply came out as "Duhhhhhhhhhhhhhhhhhhhhhhhhh." I was flabbergasted.

Eventually we made our way to pick up the other kiddos. On our way home Ainsley explained that Jacob, a little boy from her class, was running around kissing her. Another twofer - one day poo and one day kisses.

I think I like poo better.

Yep, I like it better when purpose stinks.

5:58 AM 8/29/2007

Yesterday was a quiet day without any twofers whatsoever. It was nice to get through a day without any surprises. Now I can catch back up on some of our discussions with the oncologists while we were speeding through scan week. I did talk at length with Dr. Granger about many items but one of which was Accutane. She felt that it was an extremely odd reaction and not one typical of Accutane. We knew that but it did not necessarily make us feel any better. The doctors seem to indicate that they believe that it was something else and not the Accutane. Heck, if it was not happening before my eyes I would have assumed it was something else myself. Regardless, they are content to follow our lead. I got the feeling that Dr. Granger would like to give it another shot but we were certainly under no pressure to do so. In this sense we are kind of in no man's land and if it wasn't for this strange reaction she would still be on it.

Lynley is still no where near ready to put her back on Accutane. Who could blame her? But then again, that is her job. She protects quality of life. That is why we work so well together. In the end, we decided to revisit the subject in about 6 weeks. We wanted to give Sydney the opportunity to get back into school and get used to the routine before we attempted to make all of her skin peel off again. In the end I think we will probably try it again. We will start gradually to ensure that we are not dealing with some sort of allergy and then we will quickly ramp it up to the full dose. Unfortunately it is believed that Accutane is pretty dose dependent and it takes quite a bit to get to the levels that have shown efficacy. This is not one of those drugs that we want to hold back on for long.

Well, I had best be off. There is a busy day ahead and lots to do.

My purpii await.

6:16 AM 8/30/2007

Good morning! This will be an extremely short update as I have several projects to continue to work through this morning. All appears to be well in the Dungan household. Yesterday Grammy arrived. Graham, absolutely delights in calling her his great grandmother. He just loves calling her that and it sounds quite adorable coming out of his mouth. Sydney took the time to read one of her books to her and Ainsley is still trying to register exactly how she fits into the big picture. She understands the concepts of mother and grandmother and she thought she had that all figured out. I think she was confused with the "great." I told her she was Dee Dee's mommy and she looked at me like I was a complete idiot. Regardless, she is warming up and there is little doubt in my mind that Grammy will be Ainsley's favorite by the time her visit is over.

Later in the evening I had a surprise visit by my brother John who was in town. He too visited with the kids for a bit before he and I went out to dinner later in the evening. It was genuinely nice to see him again. It had been several years since we had seen each other. It was quite the day of family reunions.

Well I had best be off.

There is a mountain of purpose before me this morning.

6:13 AM 8/31/2007

Antibodies sure have been a theme in my life lately. I woke up with no less than 3 email in my inbox this morning asking me the question - what is best? I wish I had an answer and I can only tell you that I am working on it in my secret lab. Go ahead, laugh, but you would be surprised. The problem is that I can't tell anyone which is better because there is no evidence, no direct comparable data. I hope that we conquer that problem by the end of the year but, for now, all we know is that every antibody seems to have some successes and some failures. I think many of these failures are due to several factors but they generally fall into two categories. The first deals with how well the antibody binds to the neuroblastoma cell and the other is how well the antibody kills the cell either by delivering its own payload or recruiting the immune system.

I will come out of the box and say that, first off, I believe that all available antibodies against GD2 (3F8, ch14.18, and hu14.18/IL2) all kill neuroblastoma in kids to some degree. Some do it better than others and some kids are more susceptible than others. I have seen, first hand, children respond to each of the three mentioned antibodies. In other words, I have seen kids with disease take one of these antibodies and then have less or no disease left. I can't tell you that it cured the kids but I can tell you that many had far less disease coming out of therapy than they did going into it. However, they all have problems. In theory there are many reasons that each could be potentially better than its counterpart but at this point there is no real data.

Some of the most basic problems with antibodies seem to be in their delivery and I think everyone around the world is beginning to realize this point. Although each round of antibody therapy may kill neuroblastoma cells it takes quite a few rounds to see an impact on survival. This has been shown by Sloan Kettering. The children that develop a HAMA early on (< 4 rounds) don't have the same survival curve as those that receive more rounds of therapy. They don't fair as well. In fact, many at Sloan would like to see 6 to 8 rounds of antibody therapy before the child develops a HAMA. They have seen this group have a significant increase in relapse free survival than those that HAMA early and have to stop taking the antibody.

In short, one of the major hurdles to overcome with these antibodies is to figure out how much is enough. If you look at this single institution's experience you would have to believe that more antibody therapy is better than less. Just looking at this single issue can tell us a lot about the different therapies. Clearly there is more risk in taking 3F8 because you run the risk of an early HAMA and not receiving enough therapy to get your child into the group with an apparently higher survival. With the ch14.18 and the hu14.18 you don't really run the same risk. Although they have a response similar to the HAMA these antibodies are so much more human that the responses are extremely transient and are not believed to have an effect on therapy. So, theoretically, you could keep taking these antibodies for extended periods of time. The problem is that with the ch14.18 trial you are only eligible for 5 rounds. That is it. So, theoretically, even if a child could have more because of the lack of an allergic response they will not get it. If the data regarding Sloan's experience regarding the amount of antibody therapy needed is true this simply may not be enough exposure. So, there you have it. They both have problems. The hu14.18/IL2 had this problem as well. They used to only make it available to children for four rounds. However, they had many children continue to respond and eventually opened the trial up so that children could receive up to 10 rounds if they met certain response criteria. This seems like the best potential route but there are problems with this as well. First, it is only available to relapsed and refractory patients and secondly there is speculation that it may not bind as well as some of the other antibodies. Ironically there is even some early clinical evidence which appears to show that the ch14.18 antibody may in fact do a bit of a better job. However, if you can't get it for extended periods what does that leave you.

Well I best be off. I am quite sure I thoroughly confused many but that was kind of my point. As of this date there is no definitive answer. I still suggest most families pursue investigating antibody therapy at some point in their neuroblastoma journey but there is still much more to be learned. There is no absolute. Don't kick yourself. I have studied this disease for 4 years and I have studied antibodies most fervently. There simply is no answer. You have to do the best for your child that you believe in. At this point, none of the answers are wrong.

Purpose does not bring clarity. It is not black and white.