Radiation...? Check.

Just a quick note (and current photo) to let everyone know that Andrew completed his full course of radiation yesterday and seemed to manage it quite well. Next on the agenda will be a battery of tests and scans to confirm that he is still NED. We will post a more thorough update following those. In the meantime, we are hard at work planning a birthday party: Lucia turns 6 on Friday.

Love,
Paul & Cynthia

Awareness

Two posts in three days?!?!!? What IS going on? Clearly, we are starting to get a handle back on our lives....

We are writing to let everyone know--as we were actually reminded today--that September is National Childhood Cancer Awareness Month and that this Saturday, September 13, is National Childhood Cancer Awareness Day. With that in mind, we want to take a minute to get up on our soap box and preach a bit to anyone who is inclined to listen.

Before we do, though, it is crucial to us to make sure each of you knows how grateful we are for anything and everything you have done for us or will do for us during this challenging time. This post is not meant to ask more of you. However, we are asked on a regular basis what more people can do to help out, contribute, raise awareness, participate, etc. and this post is our attempt to give some direction to those individuals.

What has been most enlightening, yet also discouraging, to us so far in this journey is the realization that pediatric cancer is quite low on the totem pole when it comes to funding and awareness. Part of this is due to the fact that these are kids and research and treatment innovations have to "trickle down" (read: get through all the bureaucracy) to them; after all, doctors don't want to be accused of "experimenting" on children. And part of this is the simple fact that there are not as many childhood cancer patients as, for example, breast cancer patients. And there are certainly no celebrity childhood cancer patients. This is overwhelmingly the case with a rare cancer like Neuroblastoma. Yet, the tragic (and unfair) truth is that pediatric cancer kills more children under the age of 20 than asthma, diabetes, cystic fibrosis and AIDS combined; yet pediatric cancer receives significantly less government funding than, for example, pediatric AIDS alone.

Meanwhile, cancer fundraisers abound and successfully raise tremendous amounts of money for cancer research and treatment. Inevitably, these fundraisers trot out a pediatric cancer patient to be the poster child for the event, as nothing quite pulls at the heartstrings and the wallet as a bald toddler (we're allowed to say this because we have a bald toddler). Certainly, it plays better than a lifetime smoker with lung cancer. However, what we have learned is that, while a child with cancer draws a lot of donations, those donations rarely make it to the level of actually funding pediatric cancer research. In our opinion, this is false advertising at its worst.

To pull us back from the brink of cynicism and despair, though, there are many worthwhile organizations, charities, events, etc. that you can aid and know that they are devoted to Neuroblastoma and/or pediatric cancer. Three main ones, from our perspective, are the Children's Neuroblastoma Cancer Foundation, Magicwater and Curesearch. Their websites are: www.nbhope.org, www.magicwater.org and www.curesearch.org. Please take a look for yourselves at what they offer and see how you might get involved.

Another charity, founded by a Neuroblastoma father and in coordination with CNCF, is Lunch for Life. It is a beautifully simple concept: You are asked to donate $5 in lunch money once a month (or as often as you like) in an effort to fund a cure for Neuroblastoma. The website is www.lunchforlife.org.

A truly moving story surrounds Alex's Lemonade Stand: Alex Scott was a 4 year old, who, in the course of battling Neuroblastoma, took it upon herself to set up a lemonade stand in her front yard to help raise money so that her doctors could find a cure for Neuroblastoma. She manned her stand for four years, before succumbing to her disease. Her family continues her work by helping people host their own lemonade stands to raise funds for childhood cancer. The website is www.alexslemonade.org.

Of course, there are countless other ways to contribute: organize a blood drive, give blood or platelets yourself, volunteer at a hospital, etc. Another thing we learned: Help your local Ronald McDonald House. It turns out each operates on its own. For families that have to travel for treatment, the Ronald McDonald House is a lifesaver. You can help out your Ronald McDonald House by saving your aluminum can pop-tops (the little tab that you pull to open the can, not the can itself) and turning them in to your local House.

An idea that we are trying to promote (last-minute, we know) is to put gold balloons outside your house on Saturday, September 13. Gold is the color for pediatric cancer and the concept is to simply let people around you know that you have been touched by childhood cancer. And, at the end of the day, if it is not too much trouble, please deflate the balloons, place them in an envelope and mail them to the following Senators:

Murtha, John P. (D-PA)
2423 Rayburn HOB
Washington, DC 20515
(202) 225-2065

Young, C. W. Bill (R-FL)
2407 Rayburn HOB
Washington, DC 20515
(202) 225-5961

Inouye, Daniel K. (D-HI)
722 Hart Senate Office Building
Washington, DC 20510
(202)224-3934

They sit on the appropriations committee responsible for allocating funds for the Conquer Childhood Cancer Act. Please remind them that, now that this bill has passed, it still needs to be funded.

That is enough for now; we will step down from our pulpit. To close, we offer up a couple of videos that should give you a really good cry and perhaps a bit of inspiration and motivation. Take care and good luck.

http://www.youtube.com/cncf2007

http://www.youtube.com/watch?v=9YIofcPfne0

Thank you, again, for whatever you may decide to do.

Paul & Cynthia

287 Seconds

Dear All,

It's been a summer of biblical proportions. And then some. As you all know, Andrew made it through transplant in 40 days and 40 nights, including a last-minute excursion to the ICU. However, to take liberties with Pacino: Just when he thought he was out, they dragged him back in....

Less than two weeks after discharge from transplant, we found ourselves back in the hospital with a severely dehydrated kid and a truly bizarre case of EBV-induced hemophagocytic syndrome (Did we mention that Andrew managed to catch Epstein Barr Virus (Mono) in the course of transplant? More on that later.) As Cassie wrote here already, his immune system was a bit haywire and devouring red blood cells, causing his hemoglobin to plummet. This, in turn, had an impact on his lungs, liver, kidneys...you get the picture.

It was a nervous couple of weeks, to say the least, but the doctors seemed to get a handle on it and it settled down enough (and he is pumped up on enough steroids) that we were released again last Friday and have been enjoying ourselves at home ever since. He is still on plenty of meds at home, as well as IV nutrition at night, but he is happy, energetic, and generally in good spirits (aside from the occasional 'roid rage). His appetite also is starting to make a full recovery (again, courtesy of the 'roids--they're a WONDER).

Of course, not to let him get too comfortable or cocky, we are now pushing ahead with the next phase of his treatment: Radiation. He has received two doses so far and will receive ten more over the next two weeks. He is receiving Helical Tomotherapy, which, as we understand it, is basically next generation radiation, where the dose is split up into lots of little doses that are shot at the primary tumor bed from all around. Each course of the radiation lasts 287 seconds. It doesn't seem like much, but he also has to be sedated each time, so it is quite a production to get it done. Common side effects are nausea and fatigue, but so far he seems to be handling it all right. Also, a small victory: No tattoos. Just Sharpie drawn all over his abdomen, chest and sides (pretty scientific, huh?)

After the completion of radiation, Andrew will undergo another full set of scans--CT, bone, MiBG, bone marrow biopsies, etc.--to check for any disease. This will become routine for him, as he will have to have them every three months for the next two years and then at longer intervals for the next three years after that. At about the same time of those scans, we will be sorting out our next move, namely: To pursue antibody treatment or not. We won't go into detail here, but it is not an easy decision, especially in light of Andrew's recent hospitalization; we are starting to wonder if his body has simply had enough for now. Time will tell.

As bumpy as our road has been, we are constantly reminded of how truly fortunate we are to even be able to keep fighting this fight. Just in the last week, three children that we knew--Arden, Jose and Max--lost their fight. Two lost it to the transplant treatment itself; one lost it to the disease. All are tragic. All are hard to take. All are a reminder of just how fragile our current "peace" is. We ask that you please keep Arden's, Jose's and Max's families in your thoughts and prayers. We hope they somehow find comfort soon.

To end with a bit of silver lining, we do have some potential good news from Andrew's case of EBV: It means that he is now eligible to participate in a neuroblastoma vaccine study that is being conducted at Texas Children's Cancer Center in Houston. Could be a sign.

In the meantime, school is starting and we have to get busy potty training Andrew (the mundane things we forget about). Seriously, though, it didn't seem fair to try to potty train him when he was on IV fluid around the clock. He won't start school on time, because of his "new and improved" immune system, but we need to be ready when the time comes.

As always, we thank you for your support and for all that you do for us. Special thanks to all of you feeding us. We likely would have starved without you.

Love,
Paul & Cynthia