Thoughts on Antibodies

I don't know whether it is the time of year or something floating in the air but I have received a ton of emails about our decision to go to Sloan lately. Seriously, over the last few weeks, I have received about 10 email asking me about our thoughts and experience on 3F8. This also comes at a time when two of our local families begin their first rounds of antibody therapy. This is obviously a thought that is on many minds so I guess I might as well chime in (again) with how we feel in a more public setting. Would we have done it again?

First off, before we get into the specifics of 3F8, ch14.18 or any of the other anti-GD2 antibodies, I think it is best to just address antibody therapy itself. Generally speaking, I have this to say:

I have seen kids with neuroblastoma. I have seen kids take antibodies. I have seen the disease in those same kiddos go away.

Antibodies kill neuroblastoma in kids.

Period.

I am often frustrated by the argument - "Well, there is no proof that antibodies increase survival." This bugs me for two reasons. First, it is wrong. There is some evidence. At the ANR in 2008 the Germans came out with a retrospective study on their use of the ch14.18 antibody and found that it appeared to show long term survival benefit. This is a study whose design was probably destined to fail. Yet, for some unknown reason, it is showing some long term success. So, in a nut shell, there is some evidence that antibody therapy improves survival. However, I would also gladly point out that it would appear unlikely that the ch14.18 study in the COG will show a survival benefit. I don't have any inside information here. It is simple math. If you look at the published survival curves for A3973 (the COG protocol Sydney was on) there was not a significant improvement in survival. With many of these patients undergoing antibody therapy you can begin to infer that antibodies must not have had a dramatic effect. That is purely speculation and given the small amount of patients on the antibody arm of this study I could be wrong.

Regardless, in my mind, this argument is relatively unimportant. We have to remember that we know that antibodies kill neuroblastoma in kids. Just like chemotherapy. Just like radiation. Just like just about any other therapy that has shown it could kill neuroblastoma. Do you think, individually, any of these single agents have shown an improvement in overall survival. Most, if not all, have not. Accutane is one of the lone exceptions. What most have shown, however, is that they have activity, that they have the ability to kill neuroblastoma cells. There is no measure of overall survival. We just know that the chemotherapy kills neuroblastoma and at what cost.

Just like antibodies.

So, in short, I don't like to get too hung up on the survival issue. Frankly, the answer isn't out there right now. We don't know its impact. Let's focus on what we do know - the facts.

We do know that antibodies kill neuroblastoma in kids. We can see that and measure it. It is not theoretical. It is a fact.

So, is all of the pain of antibody therapy worth it considering we know it kills neuroblastoma but that it may not impact survival? My thoughts?

You betcha.

We give mountains of toxic chemotherapy to our kids. Why? Because they kill neuroblastoma. We risk hearing loss, cardiotoxicity, neurologic problems and a litany of long term and short term very real side effects - just to kill neuroblastoma. So, in my mind, it makes sense to risk some short term pain, some hives, and some edema to kill some more neuroblastoma cells.

Another reason that we chose to do antibody therapy is because of how they work. Antibodies kill neuroblastoma differently than chemotherapy or radiation. They actually recruit the immune system to do the killing. Their is something romantic about training their bodies to kill neuroblastoma. Who knows whether their bodies remember it but the important thing to realize is that the immune system, the most powerful weapon we have, is killing neuroblastoma. It is icing on the cake if the immune system is acutally trained to continue this activity in the future. In some cases, it has also been shown that antibodies actually also do some of the killing for themselves. This is important.. By the end of therapy, our child's neuroblastoma has most likely developed some resistance to the chemotherapies that have been used to treat their disease. In other words, there are neuroblastoma cells that are resistant to chemotherapy. In order to kill these cells you need something that will overcome this resistance. Radiation can. Radiation is pretty good at killing neuroblastoma as well. However, radiation can only kill what is in the radiation field. So, even though it can be effective, it does absolutely no good for neuroblastoma cells that are hiding elsewhere in the body. The good news is that antibodies can kill chemoresistant cells that are out of theradiation field. Antibodies are systemic.

So, to make this long explanation really short. If one neuroblastoma cell was left in your child's body, if that cell was resistant to chemotherapy (likely) and if that cell was hiding somewhere outside of the radiation field then antibodies could kill that cell.

Antibodies are another opportunity to kill those hidden neuroblastoma cells that we can not see.

They aren't the silver bullet. They aren't the cure for neuroblastoma.

They are a tool and in one very unmedically trained father's mind a very worthwhile investment.

There are no guarantees and no promises, just another opportunity to try to defeat the monster.

It is for these reasons that, if we had to put Sydney through it all over again, we would do it in a heartbeat.

They are one tool in our super purpose toolbelt.

Pain in the Neck - literally

I can't move my head and it hurts to type. I know that really does sound pitiful, doesn't it? I feel like such a wuss. Regardless, I slept funny and my neck is making it very painful to type. I will have to find another way to keep myself busy today. That just might be the perfect excuse to dig through the pile of research that is sitting on my desk. There is so much I have wanted to read and now I have carte blanche to do it. Awesome!

I did want to give everyone a brief update on all of our wounded Dungan's. Grammie appears to be on the mend. Lynley and I visited her yesterday. She was down right perky. I think she has clearly made the turn and has improved tremendously. I expect to see her out of the hospital in the next few days. Graham too has weathered his toeing quite well. Although it still hurts to look at his toe he seems to be doing pretty well. He has a slight limp but seems to be able to get around pretty well. He even walked through the mall and played in the play area yesterday morning. The afternoon found him madly racing his big wheel up and down the block. All in all, it was far better than I had anticipated.

Everyone else seems to be doing pretty well. We have scheduled Sydney for her next MRI on January 9th so until then we are hoping for smoothe sailing. The kids are all home from school for the next week and, conveniently, even Lynley has had off. I, on the other hand, continue to work through the holiday.

There is no rest for purpose - even if I can't type.

A Christmas of Ups and Downs

Good morning! It feels like I have not written in my diary forever. It has been a crazy few days. First and foremost I should let you know that Christmas went off spectacularly - even for our resident Jewish school girl. The kids could not have been happier with their gifts and have had a great few days of good whether to enjoy them outside. When outside was not good enough we have all enjoyed playing Wii fit inside. For some reason everyone takes great joy in watching me play the Hula Hoop game. Hey, I might look funny but I am the only one in this household with a 4 star rating. Jealousy will get them nowhere.

Unfortunately, we have also spent some significant time up at the hospital. It turns out that Grammy (my grandmother and the kids great grandmother) has developed pneumonia. It all start off innocently enough with a cough during the first few days of her visit and just got progressively worse. After putting it off for as long as we could we finally gave in to the hospital. Although her time their has not been particularly restful she, for the first time yesterday, was beginning to show some improvement. We are hopeful that she may be discharged in the next few days. Pneumonia can be ugly so we are obviously happy that she seems to be responding so well.

Finally, last night we had an accident around the house. Get ready to cringe.

While Lynley's parents are visiting all of the twerplets are sleeping in the same room. This usually leads to a fair amount of giggling before bed time. It is just like a sleep over and the kiddos just can't seem to get over the excitement of going to bed. It usually takes a few trips to their room to get them all settled and asleep. Well, last night, as I was going to check on them for the last time I opened the door. The problem is that Graham was standing right behind the door. Somehow his toe got caught between the bottom of the door and and the floor. The action bent back the majority of his big toe nail upon itself and left a bloody mess. I called for help down stairs and scooped him up into my arms. It was painful to look at. We made it down to the kitchen sink where Lynley (and I must give her credit here) went to work on Graham's toe. As always she was calm and collected. Once we got Graham under control I made my way back upstairs where the girls were still screaming in horror. I let them know that Graham would be okay but they would not believe me until they saw him again. Within about 10 minutes Lynley was carrying him back up the stairs. His foot was completely bandaged and his tears were drying up. Graham handled it like a champ. He did better than I. He will eventually lose his nail and I am quite sure that he will have some difficulty walking on it for the next few days but if we can ward off any infection I am quite sure we can get through this without too much more drama.

Well, I know this was not necessarily the post Christmas summary that you were probably looking for but at least we are all accounted for. It could have been much worse.

For now, I am back to my purpii.

A sudden enveloping reality

Good morning! Merry Christmas Eve. This week has been full of hustle and bustle. With three kids and a wife at home for the holidays it has been crazy around the house. Every time that I go from working quietly day after day in my quiet office at home to working amidst the chaos, I forget how much I love having everyone around. For Ainsley there is lots of cuddling. For Graham there is lots of tattling, for Sydney there is lots of asking me how to do some of the secret things on Mario Kart Wii, and for Lynley, well, there are lots of dirty looks as I quietly and happily sit on the couch tapping away at the keyboard. This, of course, happens as she tries to clean the house, make lunch, and watch three kiddos all at the same time. I have tried to explain to her that this is the gift of that nice cushy job she has with all of the vacation time. She doesn't appreciate that very much.

I have discovered that I am a bit under the weather. I have a stuffy nose and a pretty good headache. This is also complicated by whatever the side effect is that makes one sound ike Elmer Fudd. My timing certainly isn't very good but I am hopeful that it will only last a day or two. I would make a couple of cracks about Santa Claus but with my new eager beaver reader around the house I don't want to give anything away.

I bolted out of bed this morning with a singular realization in my head. I don't recall exactly where the sudden thought came from but it went through me like a shock. I felt like I did a little over five years ago - almost to the day. I felt that shallow breathing and the intense fear of the condition. It is as if I almost went back in time. I don't know exactly how to describe the sensation but it was almost as memorable as the actual event. I felt as though I was reliving the whole experience of transplant with Sydney when I suddenly realized we were five years from that date. I felt intense joy and relief. Although it was only 2:00 AM in the morning I felt I just had to go give her a kiss on the forehead and share that with her. I let her sleep but as I looked down on her I had never felt so warm an at peace. I realized I lucky we have thus far been. For me, it was a Christmas gift early.

Thank you.

Thank you for my purpose.

A weekend of debauchery

Good morning! Wow, what a weekend. I feel like such an utterly horrible Daddy. I did one of two things this weekend. I either partied (can I even say that as a 37 year old adult) with my wife or I worked myself to the bone. Bad, bad, bad daddy. The good news is that the kids had a terrific weekend.

It all started on Friday morning. I was talking to Lizzie (Hayden's mom) on the phone. Hayden has completed his stem cell transplant with flying colors and has found himself back at home for the last 3 or 4 weeks. We were talking about how much Graham and Hayden missed seeing each other. After a few minutes she invited Graham over to spend the night with Hayden and their family. Graham was absolutely and utterly excited. For obvious reasons, we did have some concerns about Hayden. After all, he was still not quite that far out from transplant. We talked about it and decided that Graham was healthy enough to spend some quality time with Hayden. We cleaned the boy up and gave him strict instruction. We told him to be his absolute cleanest. We reminded him to wash hands and to not share cups or eating utensils. Lynley also let him know that he could not sleep in the same bed as Hayden. But, assuming all of these rules were observed, he could have his first sleep over ever with Hayden.

When they arrived to pick up the Grahamster, Madison (Hayden's older sister and Sydney's best friend from when she was at Arborlawn) came along. Within minutes Sydney had been invited and we now had 2 cuckoos flying away from the cuckoo's nest. They were off to an afternoon and evening of kid mayhem and good clean fun.

I did not know what to do.

I only had one kiddo and within the next hour she had plans to spend the night at DeeDees.

Did you know that this was the first time in 7.5 years that Lynley and I have spent a night together without any kiddos? This was a momentous occasion.

Lynley and I were kiddofree for the first time ever.

That evening she and I had plans with 4 other couples for a Christmas party on the town. We went out for dinner and drinks and had an incredible time. However, by about 10:00 PM we were back to our eerily quite home. Ironically at about 10:30 (2.5 hours past our kiddos normal bed time) we received a call from Sydney. She was just calling to give us an update before going to sleep. Apparently she had fallen while take a bath and received a pretty good bruise on her cheek. It wasn't the prettiest thing but she seemed to have recovered. She was proud to tell Mommy that "Naw, I am fine." Graham, too, had an incident but that was probably more our doing than his. As Graham was going to bed he insisted that he sleep on the floor because he did not want to risk getting Hayden sick. From what I understand he threw a pretty sizable fit. He was just trying to carry out hiss mother's orders and, in the end, I think they finally came to an agreement. Within a minute of the conversation ending Graham was fast asleep.

Tired, tired little boy.

The morning was apparently filled with more kiddo fun at their house. By the time that we got back ahold of them on Saturday at noon they had been completely and utterly re-worn out. They could not stop talking about how much fun they had. They chattered all the way home.

A good nap was had by all.

On Saturday afternoon and evening we had The Ridglea Round Up. Once again, I was up well beyond my bedtime and without my kiddos who were home with a babysitter. None the less, another good time was had. I want to personally thank everyone who showed up for the concert. The turnout was pretty good, especially considering that this was also the night of the Dallas Cowboys last home game and another country music concert was in full swing across town. I am so appreciative of Danny Wood and all of the bands that came together to make the night such a great success. I have a lot of thank you notes to write.

Sunday morning I got to watch cartoons with the kiddos and fill my face with sugary donuts at Krispy Kreme. It was a pure delight.

I was such a glutton.

Unfortunately that was followed by hours behind a computer as I ticked and tied marketing expenses and prepared for an important board meeting. I would take an occasional break to fold laundry or help Sydney unlock another cart on the Mario Cart Wii but, for the most part, I was a very bad daddy sitting over in the corner with my nose to the grindstone. Thankfully by 9:30 PM I was done with my board meeting and I was finally able to sneak in and give my sleeping kiddos a kiss on their sleeping foreheads.

Thank goodness this is a short week.

I miss my family.

Life or death.

Good morning! Today is a two-parter. First, I want to remind everyone about the Ridglea Round Up on Saturday night. Please come out and enjoy some great music. Just by being there you are supporting childhood cancer. These bands are all donating their time to try to make a difference in our lives. Let's show them our support. More information can be found at http://www.TheRidgleaRoundUp.com. Please join us on Saturday night.

Last night was very interesting. As this year has gone by, Sydney has learned to read better and better. There is almost nothing that she can't pick up and gain an understanding of. This can be an issue when the majority of the paraphernalia that exists on my desk is neuroblastoma in nature. This is especially a problem when the majority of the marketing material that I have there focuses on the gruesome facts of neuroblastoma. This is even true in the cookbook.

Last night Sydney picked up the new cookbook and began reading. As would any child, she wanted to read anything that was near her picture. This meant that she read her story. Although she has lived every inch of it and more I don't think she ever grasped what it all meant. She knew that she had neuroblastoma. She knew that it was a horrible cancer. She knows that she is a survivor. She know that it was the medicines that she received that caused her hearing loss and thin hair. She knows that the scar across her belly is from where they took the tumor out. Up to this point in time it has always been very matter of fact for her. We have always been upfront and honest with her but have obviously withheld some of the most gruesome of facts (such as survival, etc.) from her. We felt that was an unnecessary burden she did not need at her young age. Additionally, until this point in time we did not feel that she could necessarily process the information.

Well, last night, after reading her story and some of the facts about neuroblastoma in the cookbook it began to hit home for her. On some level she began to understand the real facts and how lucky and special she was. We ended up spending about 30 minutes with her answering questions and talking about it. It wasn't an easy discussion. Some questions were benign like, "How did the cancer make it so I could not walk?" or "Was the tumor as big as my tummy as big as my scar?" Other questions needed to be handled far more delicately. Like, "Do many kids with my cancer go to heaven?" We have never hid anything from her and have always been open and honest but this was one of the more difficult times we have had. She has begun to truly realize that when she hears or reads "life or death" that it truly means "life or death." It is a burden I which she never had to carry.

It is one that I wanted to carry for her forever.

That is my purpose.

Not exactly what I planned

This morning I have a helper by my side. For some reason at 5:21 AM Ainsley though it would be a good time to wake up and come downstairs. You see, starting at about 4:00 AM my office is the couch in the den. I have a system. I get a cup of coffee. I drag an extension cord across the floor. I grab my laptop, my iPhone, and my USB memory key. I prop a pillow behind my back. I snuggle into a large yellow comforter and get to work. Yes, I know. I lead a hard life.

The problem with this "office" set up is that when every a child comes down stairs they see this as a snuggly spot - not a worky spot. So, when Ainsley came down stairs she made a beeline right over to me and made her demand. "Move over. I wanna snuggle wit you." How could I resist? So, here I sit next to a very warm little snuggler with "Johnny and the Sprites" on the Disney channel in the background. It isn't exactly what I planned as I sipped my coffee and began going through hoards of email this morning but I certainly won't complain.

I am pretty lucky.

I have purpose after all.