Hello all,

I want to share something that might be helpful. We have been fighting neuroblastoma now for almost 24 years. Our daughter, Calli, was 12 years old when she was initially diagnosed with neuroblastoma. She has relapsed a total of seven times. She's had seven major surgeries. She developed breast cancer because of the radiation to her chest (over 40 grays) and has had about 400 weeks of chemo - mild and heavy.

She is now 35, married, and happy, even though she is still on an ALK inhibitor drug (Lorbrena), the one that Pfizer is producing.

One of the most critical decisions I almost missed was attending the CNCF neuroblastoma annual conference. I initially considered not going, thinking it was too far and too much trouble. My wife wisely advised, "All you need is to learn one thing that can make a big difference in our daughter's life." She was right.

I attended one of the first conferences around 2002 or 2003 and learned a few things that significantly impacted our daughter's neuroblastoma fight. At the conference, I discovered a skilled surgeon willing to operate on our daughter when others wouldn't. I also learned about and met doctors at the forefront of developing new and effective neuroblastoma treatments.

Equally valuable was the knowledge gained from other parents at the conference. I believe informal information is as crucial as formal information, though it requires more time to verify through additional sources, just as formal information requires.

You are making connections with people who genuinely understand what you're going through as a caregiver. There is no other place where you can talk with doctors on such a casual basis. This gave us the confidence to contact them later for their advice.

Here are some things that helped me maximize my experience at the CNCF annual conference, which I hope you will find helpful.

The most crucial step is to capture the doctors' presentations, as the content can be overwhelming or challenging to absorb after hours of talks. I always use a small digital recorder to record the sessions. Later, you can review the recordings at home and research unfamiliar terms. It's surprising how much you forget or miss during a presentation.

For follow-up information, CNCF is the best resource. They record the meetings and make them available on their website, which is an excellent reference. I am sure Pat, President of CNCF will announce when the talks are available.

I wish you the best.

Frank Kalman, Calli’s dad

End Kids Cancer