Home again

(Not) too cool for sparklers!

Hans' Bday Cake

Bday party

Hans and Kevin in Chuck E cheese's New ticket blaster

The four of us at the conference. Pic taken by angel Daxton's lovely parents (thanks)


We are home. We are just a little wiped out after that trip, but we are good!

Poor Hans had a little episode on Thursday. We were all supposed to leave and he just didn't want to/flat out refused. It was almost like he was having a bit of a panic attack. He'd never done anything like that before (with airplanes) And, of course, with his adrenal problems, we don't like to put him on the plane if he's going to have some kind of event/episode. We'd hate to have to land the plane. We literally flipped a coin. I headed out to the conference with Elle, and Kevin and Hans stayed home! But, Kevin quickly started to work him up to it, and they were able to join us for the second night. What drama! Kevin's take on it was that Hans had caught wind that he was heading out to an NB conference, and that was simply not his idea of a good time. How much medical travel ought to be expected of him anyway??? We don't know! We're just glad he got on board.

Wow - we saw so much - some of the talks we'd actually seen before, were familiar with the materials, and some we'd only heard of, and a few things we'd never even caught wind of. In my humble opinion - there are a few take home points:

1. If your child has NB and you can get a sample of his or her tumor to Dr. Maris/Dr. Mosse at CHOP, do so! They can test your tumor for the ALK gene mutation. If the ALK mutation is present, the ALK trial might be recommended in the event of relapse.
If you have any power to do so, request that your child's tumor samples be FROZEN, rather than stored in paraffin.
Right now, Hans has the dilemma of not having a tumor big enough to test (they can't get a sample out of bony disease), and they saved his original tumor in paraffin at TCH and are currently working on a test to check for the mutation in paraffin, but it isn't ready yet. They also say that the biology of the tumor can change b/w original diagnosis and relapse.

2. If you can get a sample of your tumor sent to Dr. Sholler in VT for her biology study, that might be a good idea as well! She's been growing cell lines of individual tumors to test which chemotherapy agents are best for your child. It's pretty cool. Again, Hans' tumor doesn't qualify for that test.

3. The Immunotherapy agents 3F8's are now available for refractory patients right here in Houston! This is exciting, because these had only been previously available in Hong Kong and New York. So, if your child has disease that never went away in front line therapy, you now have a more local option for 3F8 therapy, in Houston, at MD Anderson with Dr. Peter Zage.

Other things docs are working on out there - combing MIBG therapy with Transplant, using donor stem cells in relapse (usually sibling), and for the first time ever on the history of the planet Earth - they are using an Oncolytic Virus on human children with NB. They present a virus that attacks the tumor only. It has been found to be safe, but they are only now enrolling the third child on the Seneca Valley Virus Trial.

Kevin and I continue to hear about two trials that we think might be worth trying if/when we ever have to change trials: ALK inhibitor, and Fenretinide. We remain curious about 3F8's and possibly even radiation or a second MIBG therapy. But, for now I think we are happy to see where the MLN takes us. We learned in Dr. Mosse's presentation that MLN8237 has been shown to have an even better synergistic effect if it is combined with other chemotherapy agents such as Irinotecan/Temodor (which has already worked for Hans!). The thing is, we don't know if he'll ever be able to benefit from the combined drug since he is now on the trial for taking the single agent drug.

I guess the conference left me with a couple of thoughts. There is a lot going on in NB research. A lot more than there was for such a rare disease (app 700 kids in US diagnosed w/ it) about 10 - 15 years ago. I believe that there is hope that some of these kids relapsing today will be 'salvaged'. There is even greater hope for the kids diagnosed tomorrow. I am so proud of Pat Tallungan who founded the CNCF and brings these families and doctors together every year. Pat lost her son Nicky about 10 years ago and has been dedicated to making a change ever since. She's our hero. I believe that this conference not only informs parents, but, it must also be motivating to these docs out there to get solutions into these kids. Actually, there are NB parents pushing research forward all over the country/world. It's really amazing.
The best benefit to the conference is probably just meeting these other families!