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Monday, April 5, 2010

No..no it cannot be.....

It is never easy for me to share the kind of news I must share with all of you today. Last Friday afternoon Gretchen and I learned that Liam has once again relapsed. Cancer was found in two new locations during his regularly scheduled 90 day scans. We did not want to tell anyone until after the holiday so as not to ruin everyone’s beautiful spring weekend. We quickly escaped to our home in NJ to absorb the news and to come to terms with what it meant for Liam and our family as a whole.

The MIBG scan showed a small amount of cancer on his left leg just below his knee and a larger area on his right shoulder coming off of his scapula (bone). An MRI of his shoulder verified that it was indeed new disease and not an injury. The shoulder pain he has been experiencing the last week was due to the disease in his shoulder, not a simple boyhood injury as everyone had hoped. The low dose therapy he has been on since last fall held him for awhile but not as long as hoped. He will begin high-dose chemo tomorrow followed by radiation therapy to the affected areas and then like many we will be searching for the next best option. Liam’s most recent relapse is further evidence of the lack of effective secondary therapies for high risk kids. It is basically chemo or antibodies and if one or both cannot keep you clean then there is little to turn to, outside of a handful of phase 1 studies that have so far proven to be less effective than desired.

It is for this very reason that we must all continue to advocate for our cause, our kids, and to do all we can to raise money and awareness. It is really unacceptable that kids can survive massive grapefruit size tumors, metastasis, infections, day long surgeries, and the other endless risks they are exposed to throughout treatment and hospital stays to continue to slip backward because there is not a therapy yet developed that keeps them where we all fight so hard to get them to. NB should be a curable cancer due to the various consistent signals it presents when compared to other types of cancers; but not enough money or energy is being spent to find out it’s Achilles Heel.

Gretchen and I are focused on getting him through this once again, as is his team of amazing doctors at MSKCC. Liam has a rough couple of months ahead of him but in famous Liam fashion he is sure to make the best of it and continue to inspire us all with his courage, strength, curiosity, and love of life. Please keep Liam in your thoughts and prayers.

Liam’s recent setback has only further ignited our passion and our will to fight back against this insidious disease. In my opinion you are either fighting tirelessly to beat it or simply surrendering to it, and surrender is not an option when your child’s life hangs in the balance.

Larry and Gretchen Witt