Heavy Heart

It may seem silly, but it is true. Coincidence? Probably, but it is a consistent coincidence. Bad news in the neuroblastoma "community" comes in waves. We lost another friend yesterday and I just read a heartbreaking, brutally honest, and inspirational update from the father a beautiful little girl that will lose her battle any day now.

Boom. Boom. The blows keep coming.


Body blows

For much of Nathan's illness I have avoided becoming too much a part of "the community". This is a multi-edged sword. There are so many benefits to being active on the mailing lists and getting to know the other parents. First and foremost there is the knowledge and experience sharing. Neuroblastoma may be relatively rare, but there sure are a lot of really smart and engaged NB parents out there not only gathering their own information but making a real difference in the future of neuroblastoma treatment. Then there is the actual community aspect of it. There aren't that many people out there that have gone this road, relatively speaking. Every circumstance is different, but there are definitely things that only other NB families can relate to. The flip side is the immersion in it and the bad news. For me personally, our lives are so dominated by neuroblastoma that I have to take a step away and not be "all neuroblastoma all of the time". If Susan and I both had the same reaction it would be a problem, because her involvement on the "N-BLAST" list has been invaluable.

So I keep my distance and I honestly don't know nearly as many stories and details of other kids' ongoing battles with neuroblastoma. Its different though when you meet the families, and especially the kids, in person. I met so many wonderful kids and families in New York this Fall/Winter. And now I can't help but follow their fights. These kids are in lots of different places. Some of them are in "good" places where they are NED and hopeful to avoid relapse. I pray that they will remain NED. For so many though, there is just a stream of bad news, bad test results, and terrible prognosis. Some of them aren't with us any more.

Each piece of bad news is a body blow. It just keeps taking the wind out of me. A big part of it is genuine affection for these children and their parents. Equally as big a part of it is that it mirrors or foreshadows what is in store for us.

This is "rare" and for most people that aren't impacted directly, I think their view of it is isolated to a friend or family member. "Rare" is such a loaded word. It's connotation is dangerous. People here it and they think "not many". Well, that isn't the case. There are many. Way too many.


People don't suck

Nathan's CaringBridge journal has topped over 300,000 visits. I'm not sure how they count, but no matter how they can't, that is a lot of people coming to check in on Nathan and our family a lot of times. Many of those people have also contributed financially directly to our family for medical-related travel and expenses, and also contributed in Nathan's honor to pediatric cancer fundraising events like Lunch For Life and St. Baldrick's.

There are a lot of people who would have helped us out in different ways if we had let them, or asked for it. We could do this alone, but it sure would be a lot harder.

People don't suck. They are, for the most part, pretty incredible and willing and wanting to help those who need it.


Jack Brown

Going back and forth to New York over the years we have met a lot of wonderful people. This Fall we met a wonderful little five year old boy from London named Jack Brown. When we met Jack he was receiving the standard 3f8 antibody treatments for neuroblastoma. Later in the Winter Jack was back after having relapsed in his brain. MSKCC has a very promising clinical trial for brain relapse. It is similar to the "hot" antibody that Nathan received, but in the brain version they introduce lower levels of radiation directly into the brain. Several kids have had great responses.

The last time I saw Jack I was walking through the dining room at the Ronald. I had just grabbed a sandwich and was in a hurry to get somewhere. He was sitting at a table eating by himself and he cheerily stopped me and insisted I join him. I was in a hurry, but just because that was the habit. I really didn't have anywhere to be right away, so I joined him and had a nice lunch with Jack and his Dad.

Jack and his family traveled to New York immediately after learning of his relapse and as a result are having trouble making their stay here legal in terms of visas and such.

The BBC just did a short story about Jack. Parts of it that aired were filmed at the Ronald and at MSKCC. One of the doctors on the neuroblastoma team, Dr Kramer, is interviewed. Dr. Kramer heads the study that Jack is enrolled in.

Here is a link to the BBC story.
Here is a link to The Jack Brown Appeal.


Emphasis on happy

I was just reading and thinking about a post by another cancer dad blogger. He was writing about not missing today because of fear/anger/resentment about lost time in the future. This is something I've thought a lot about and strive to manage myself. Its hard. Intellectually I get it, but sometimes the depression, anger, and stress are too powerful to overcome.

Buried in this father's words was a powerful point, and one that I had never quite thought about in the way it was presented. This is what I took away. We all hope for a long and happy life for ourselves and our loved ones. Nathan isn't going to have a long life. There isn't anything at all that I or anyone else can do to change that. Take the "long" out of the hopes and what is left is "happy". I might just be able to help Nathan have that. And, for that matter, Julia, Lauren, and Susan. I don't want to preach about the false sense of security and longevity we all feel. It may be tired and almost cliche to say that this fight has taught me that you never know what lies in store for you and how much time you or your loved ones have, but, well, it is the truth.

I'm going to struggle harder against the negative emotions of this all and just try to focus on bringing the happy.



I don't mean to be too political here. This is a space primarily for me to use to deal with my emotional state when I feel I need the outlet. That being said, I feel pretty strongly about this. For two years running our Federal Government has cut funding for cancer research. Recent proposals will cut funding for a third straight year. I'm not sure where you stand on this administration's tax cuts or the war in Iraq, but perhaps this will give you a little perspective. Some estimates say that our government's proposed funding for cancer research for the next fiscal year is roughly equivalent to 15 hours of spending on the war in Iraq. Funding estimates for neuroblastoma for the fiscal year could be roughly equivalent to funding for 10 minutes of the war in Iraq.

I applaud our researchers. There are certainly some flaws in the system when it comes to clinical trials, but clearly the work our researchers have done has made great strides with cancer treatment. I'm extremely emotionally tied to this issue, but I personally think that we don't put enough importance on continuing the fight against this family of diseases. When one we love gets sick, we want the doctors to know what to do to make them better. We expect that. That expectation isn't reality and if we want it to become reality, someone has to pay for it. We have to pay for it. I want our government to continue to funnel our money to cancer research. If it won't, then we need to increase support to foundations and fundraising efforts that will. Our lives, and the lives of our children that look to us to provide and care for them depend on it.

ABC News did a feature on the proposed budget cuts. If you take the time to watch, you will see that on one of the bullets for programs most in danger from the cuts is "Rare childhood tumors". Nathan's cancer, neuroblastoma, falls squarely into that category.

CureSearch has some basic facts about childhood cancer and the impact of budget cuts. On this page you will also find links that can help you write form or customized letters to your elected officials.