Friday, September 19, 2014

Friday, September 19, 2014


Tonight's picture was taken on September 4 of 2008. I think this photo says a lot about Mattie and his battle. Mattie used cardboard boxes in very creative ways and in this case he decided to build a box as his safe haven. He did not want to be in clinic and did not want to be seen. I think he was rather successful! As Mattie began his treatment it impacted his skin and as you can see he started wearing band-aids on his knees. This was only the start of many changes that were about to begin in our lives.   





Quote of the day: At first people refuse to believe that a strange new thing can be done, then they begin to hope it can be done - then it is done and all the world wonders why it was not done centuries ago. ~ Frances Hodgson Burnett

I wasn't feeling well last night. I had a pain that was quite intense. I assumed it was one of my bladder bouts coming on, but I also knew it felt different than anything I ever experienced before! This morning, I recognized why, I had a kidney stone. How I landed up passing that and then attending a Caucus on Capitol Hill is beyond me. But I did! Needless to say, I wasn't in the best of places for that event and therefore had trouble focusing and concentrating. 

The Childhood Cancer Caucus hosted its 5th Annual Childhood Cancer Summit: "Pediatric Cancer: Major Advances, Major Challenges."  Congressmen Michael McCaul and Chris Van Hollen, the co-chairs of the Caucus, welcomed this year's keynote speaker, Dr. Francis Collins, the Director of the National Institutes of Health (NIH), in addition to Dr. Ronald DePinho, the President of MD Anderson Cancer Center, and Dr. Amrit Ray, Chief Medical Officer at Johnson & Johnson - Janssen Pharmaceuticals.  

I will share a few slides that Dr. Collins presented to us. Dr. Collins' whole presentation was quite interesting and focused on the latest trend of targeted and individualized therapies for cancer patients. Especially with understanding the patient at the molecular level and then designing treatment to tailor to these needs. Sounds good in theory and perhaps one day this kind of treatment will be available to all children! But for now, this is not what children are lucky enough to receive. FOR A WHOLE HOST OF REASONS. In any case, this slide discusses how understanding the biology of a patient can help doctors tailor treatment. Treatment that may put a child at risk for developing heart issues simply because the child has a genetic factor that could trigger such a condition if exposed to a particular drug. 

I am not sure why this slide
disturbed me so. After all it looks so cartoon like!!! But the fact or the reality is that Mattie got cancer because he had a mutation in his DNA. He got his DNA from Peter and I. Naturally that doesn't mean he inherited an abnormality, it could have happened when the cells divided and so forth, but it is still just an upsetting visual to accept. To a scientist it is simply facts to deliver to an audience, to a parent to receive this means so much more. 

Dr. Collins continued to explain how cancer arises at the cellular level with this illustration. 

Dr. Collins discussed with his audience today sites around the Country conducting genomic studies on specific types of childhood cancer. So in essence hospitals are working with patients on the molecular level to identify molecular targets in order to improve diagnosis and treatment. The goal being to make the treatment more effective and less toxic! It maybe hard for you to see this map, but what caught my attention was Texas Children's Hospital, Children's Hospital of Los Angeles, and the National Cancer Institute, all of which are studying Osteosarcoma. 

Dr. DePinho's slide which speaks for itself!

Dr. Ray is the chief medical officer of Johnson and Johnson. His presentation was very sensitive and compelling today. Pharmaceutical companies have few incentives to create cancer drugs for children. Mainly because in comparison to the number of adults who get cancer, 1.6 million per year, the number of children per year is much smaller (~15,000). Which of course is still HUGE, especially if your child is one of these 15,000. Dr. Ray came to show his support for the term 'compassionate use' and how he is holding expecting his company to make choices that are in the patient's best interest (which I hope is correct, it sounded good - he had his children sitting in the audience, so how could you attack him on this issue!!!). Medical professionals use the term “compassionate use” to refer to the treatment of a seriously ill patient using a new, unapproved drug when no other treatments are available. Drugs that are being tested but have not yet been approved by the US Food and Drug Administration (FDA) are called investigational drugs. These drugs are generally available only to people who are taking part in a clinical trial (a research study that is testing the drug). Being able to use one of these drugs when you are not a clinical trial has many names, but is most commonly referred to as compassionate use.

Dr. Ray's slides had a very humanistic side to them and this I feel was by design! It threw you completely off guard because this is NOT what you would be expecting from a drug company presentation!


I attended this year's Caucus with my friend in cancer, Ilona. I try to always go with one of my friends. In the past I went with my cancer buddy, Annie. I find it is important to always go with a friend for many reasons. It helps to talk about the content, the experience, and the impact of the event. Ilona and I are on different time frames of the grief continuum and we have also had different experiences advocating so far, and therefore, I always try to be cognizant of influencing her of my own feelings and opinions. Whereas Annie and I have kind of muddled through these things together which makes me feel less guilty when I state an opinion or pronouncement.