Boston or Bust!

The day has finally come! We have a plan for going to Boston! Dr. Liebsch called this afternoon and wants to begin Zoe's radiation treatment process on June 1st. In the past month there has been some talk of trying to surgically remove the remaining tumor in Zoe's neck and throat, but after much contemplation from various docs, the conclusion is that this will not be possible without major nerve damage....so radiation it is. Radiation won't eliminate the remaining tumor, but hopefully it will prevent it from growing. We'll keep praying for researchers to come up with some chemotherapy that proves effective on chordoma in the near future. That would be amazing!!!!

So, once we get to Boston, the plan is to do various scans and such so that Dr. Liebsch can map out a plan of attack, and then proceed with 8 weeks of radiation. He's hoping we can do this without having to place a central line in Zoe, meaning that Zoe will be able to do the treatment without any sedation. I have faith that she can do it, and Dr. Liebsch seems to be very patient and willing to work with her to make her comfortable with the process.

I'm excited that we have a plan, and that we'll be finished with radiation before the next school year begins. It looks like Zoe will be able to start first grade next year! She's been doing kindergarten from home this year. I'm also feeling very grateful that radiation will only take 8 weeks...I was thinking it would take at least 12 weeks. I'm very happy to be wrong!

Boston in the summer time...as long as Zoe's feeling well, we'll never be short of things to do. We've met some friends through the Candlelighter's program that have a 4 yr. old daughter that went through radiation in Boston, and they were very happy with her treatment, and raved about how fun Boston was. That's very reassuring to me. I've been a little anxious about being strangers in a strange land...with no car AAAAAHHHHHHHHHHH!

Zoe has been doing great lately. We recently got a membership at the local YMCA, and Zoe and her sister Sky have turned into fish. Everyday after school we are asked the same question in unison...."can we go swimming at the Y? Pleeeeaaaase!" Both of them are turning into excellent doggy paddlers. I'm such a proud mommy! I've also gotten back into swimming...the only sport I was any good at growing up, and I think I might even join the city team when we return from Boston. It's very therapeutic, and meditative to swim lap after lap after lap.

So, it's time to start getting ready for the next step. I think we're ready to get this done and over with.

Colleen

important legislation needs our help.

As you know, many patients with rare cancers like chordoma face unique challenges in getting the care they need, and effective treatment options can often be hard to come by. Hundreds of thousands of Americans suffer from rare cancers, yet our medical and research system remain geared primarily towards common cancers - even though new scientific advances reveal that there are many rare sub-types of these so called common cancers.

I'm writing because we have a small window of opportunity to give rare cancers the attention they deserve - and you can help!

As you may have heard, Senator Edward Kennedy from Massachusetts and Senator Kay Bailey Hutchison from Texas recently introduced the most important piece of cancer legislation in over 30 years. It's called the "21st Century Cancer ALERT (Access to Life-Saving Early detection, Research and Treatment) Act" and it aims to launch a forceful new assault on cancer, called by some the "War on Cancer Part II."


Until a few days before the bill was introduced it contained a major section called "Advancement of research of rare and ultra-rare cancers," which would have leveled the playing field both for patients with rare cancers, and for the researchers who fight to save our lives. Unfortunately for all of us, this important section was removed at the last minute without consulting the experts who helped craft this vital legislation. This is appalling!

Thankfully, we have an opportunity to get this section re-added. The bill will be revised by members of the Health Education Labor and Pensions (HELP) committee on April 29th. Between now and then we need to do everything possible to let Senator Hutchison and Senator Kennedy, and all senators on the HELP committee know just how important this legislation is.

Your phone call can make a big difference - even a few dozen calls could help change a senator's position. So, please take a few minutes to tell congress to do the right thing by giving rare cancer patients the attention we deserve!

Here's how:

Step 1

Call senator Hutchison at 202-224-5922 AND Senator Kennedy at 202-224-4543 and ask to speak with their healthcare legislative assistants. Briefly explain your own experience dealing with a rare cancer and urge the senators to include the rare cancer provision in the bill.

1. Use personal/emotional testimonies about challenges of dealing with a rare cancer
2. Explain that historically most funding and research has gone towards common cancers leaving those with rare and ultra rare cancers (like Senator Kennedy and his son, Teddy, Jr.) without hope
3. Studying rare cancers can lead to valuable discoveries for common cancers
4. We aren't asking for special treatment, just equal treatment!\

Below are some highlights of the rare cancer sections as well as some additional talking points you might want to use. It's important to keep the message simple (the rare cancer section should be included in the bill!), but these may help if the staffers ask questions.

Step 2

If one of your senators is on the HELP committee(Jeff Merkley (OR) 202-224-3753), please urge them to support the Cancer ALERT bill (a list of the HELP committee members is at the end of this email). Mention the importance of including rare cancers in the bill, but focus on supporting the bill in general.

Step 3

Please forward this email to anyone you know whose life has been touched by rare cancer.

The senators are seriously considering re-adding the rare cancer section, so if enough of us call in we have a real chance at success. We are working with the Lance Armstrong Foundation as well as several other rare cancer organizations to rally as much support as possible. There is power in numbers, so let's make our voices heard!

Onward!
Josh

Cofounder, Executive Director
Chordoma Foundation
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Rare Cancer Provisions

- creating centers of excellence for rare cancers
- creating a rare cancer registry to study the natural history of rare cancers, and identify isolated responses to therapy
- a rare cancer scholars program to encourage investigators to venture into studying rare cancers
- accelerated FDA approval for drugs with an indication to treat rare cancers
- mandating that insurance companies cover rare cancers, and allow treatment at centers of excellence

Additional talking points

Rare cancers are a major problem - they deserve our attention
- There are hundreds of rare cancers which together make up a substantial fraction of cancer (large problem)
- The advent of molecular medicine has revealed that most if not all cancers are rare on a biological level - even common cancers like lung or breast have dozens or hundreds of rare subtypes.

Rare cancer patients are an underserved population - we must level the playing field
- Most patients with rare cancers have a harder time finding appropriate care
- Most rare cancers have fewer treatment options, and no hope of a cure any time soon
- drug companies tend to neglect rare cancers

Rare cancers present a valuable scientific opportunity - we should embrace a focus on rare as a new model of cancer research
- advances in rare cancers can be translated into effective treatments for subsets of common cancers that share similar biology
- given that each individual's cancer is rare, to win the war on cancer, we need to redesign our research enterprise to fight the war on many fronts - to think of rare as the norm, not the exception. the war will not be won with blockbuster drugs that treat hundreds of thousands of patients, but rather by curing 1,000 or 10,000 patients at a time.



HELP Committee Democrats by Rank

* Edward Kennedy (MA) 202-224-4543
* Christopher Dodd (CT) 202-224-2823
* Tom Harkin (IA) 202-224-3254
* Barbara Mikulski (MD) 202-224-4654
* Jeff Bingaman (NM) 202-224-5521
* Patty Murray (WA) 202-224-2661
* Jack Reed (RI) 202-224-4642
* Bernard Sanders (I) (VT) 202-224-5141
* Sherrod Brown (OH) 202-224-2315
* Robert P. Casey, Jr. (PA) 202-224-6324
* Kay Hagan (NC) 202-224-6342
* Jeff Merkley (OR) 202-224-3753

HELP Committee Republicans by Rank

* Michael B. Enzi (WY) 202-224-6244
* Judd Gregg (NH) 202-224-3324
* Lamar Alexander (TN) 202-224-4944
* Richard Burr (NC) 202-224-3154
* Johnny Isakson (GA) 202-224-3643
* John McCain (AZ) 202-224-2235
* Orrin G. Hatch (UT) 202-224-5251
* Lisa Murkowski (AK) 202-224-6665
* Tom Coburn (OK) 202-224-5754
* Pat Roberts (KS) 202-224-4774