Wednesday, June 17, 2009

Liam Update

Hello, everyone,

I want to thank everyone who has responded to my appeal for donations to the Aubrey Fund for Pediatric Cancer Research after hearing about Liam's relapse. I'm going to share with you the latest entry from mom Gretchen's blog, "Prince Liam the Brave," to give you a full update.

Pediatric cancer research is critically underfunded, especially rare cancers like Liam's. In fact, all of the money used for the research and treatment options available for neuroblastoma at Sloan -- one of only two hospitals in the world that offer such treatments -- come directly from the Aubrey Fund.

There are many ways you can help. All of these ways go directly to pediatric cancer research at Memorial Sloan-Kettering Cancer Center in NYC.
-you can donate to my Fred's Team marathon effort, which goes directly to the Aubrey Fund, by clicking here.
-you can donate to Fred's Team in general, which goes directly to the Aubrey Fund, by clicking here.
-you can click over to "Band of Parents," an organization of parents with children battling neuroblastoma, buy something from their gift shop, or make a donation to them.
-you can click on "Cookies for Kid's Cancer," started by BOP, and either buy cookies from them (they are delicious, by the way, I can tell you from experience) or hold a bake sale of your own and donate the proceeds. They provide step-by-step instructions.

I've had a dreadful head cold for the past few days which has curtailed my running, which is killing me, because there's nothing I want to do more right now and train as hard as I can, as if somehow that's going to make things better for Liam. In some ways, it will. If my efforts inspire others to help, either through a donation or by lacing up themselves, it's worth it. However, I can't breathe through my nose, or stop coughing, so one more day off will hopefully not stop my momentum, or anyone else's.

And now, "Liam Returns to Battle," written by Liam's dad, Larry:

It is with heavy hearts that we share with you the unfortunate results of Liam’s most recent scans. The results of which showed that Liam has relapsed in a new area behind his lungs, around the lymphatic system. The 3f8 treatment Liam has been so fortunate to receive does not seem to be the right therapy to keep him free of soft tissue disease. We have been fortunate not to have found disease in his bone marrow but it is a mixed blessing since bone disease is what 3f8 really excels at fighting and the treatment Liam has tolerated well. He received 7 rounds of 3f8, two being high dose, since earlier this year. Cells hiding in soft tissue require that chemo be used to kill them so Liam will start a round of high does as early as tomorrow if not later today. No amount of time can be wasted since the tumors they found were not there 90 days ago and have grown to be approximately 2” in size in a short period of time.

It angered me all weekend to know that the cells were growing and spreading while he ran around the yard, swam, rode his bike, and played with Ella as if his world was in perfect order. The feeling of being completely powerless while something is harming your child right in front of you is a feeling I cannot begin to describe.

Today Liam has an MRI to better understand where the tumors are located since one resides in the soft tissues surrounding the spinal cord. It is most likely in the tissues around the vertebras according to last week’s scans but we need to be certain. Liam will also have a port surgically implanted back in his chest today so he can receive chemo. The surgery time is not known since he was an add on the schedule so will be squeezed in at some point. He will be really bothered by the ports return both physically and physiologically. It kills us to have to watch him endure so much. We plan to tell him that his blood “still needs more fixing” and he will need more medicine to get the job done. Liam does not know he has cancer, does not know what cancer is, and thinks he is perfectly normal. His innocence has been a major priority of ours throughout the last two and a half years. We know that this time around he will likely question the various treatments and procedures more than ever as he works to process and determine what is really going on. Anyone who knows Liam and knows him well appreciates his relentless curiosity and inquisitive nature.

We are looking in every direction to determine the next best step based on Liam’s situation. We know we must stop and shrink the tumors immediately and then remove whatever is left. Meaning, Liam will likely undergo a major surgery sometime in July. We along with Liam’s team of doctors at MSKCC, along with input from several other top neuroblastoma doctors, will then develop a new game plan to keep him clean. There are a few other options but not as many as you would think or desire. Each will likely include various combinations of chemo as well as new or experimental therapies like NK cell, ABT-751, or MIBG therapy. We have a most unpleasant and unexpected summer ahead of us. Your support and endless cheering for Liam is what truly keeps us going. Though we are scared, broken, and tired of this journey’s seemingly endless barrage of heartache and pain, it is one we would walk a thousand times over for Liam.

I will leave you with this:
On Friday we returned to our apartment after learning of Liam’s relapse. Gretchen and I were doing our best to act as if nothing was wrong even though we were both crushed and had pretty much had the life sucked out of us. We could not appear as if anything was out of the ordinary even though we were both numb. I walked into Liam’s room with him to find the sun streaming through his bedroom window. He said “Daddy! Daddy look! It’s beautiful! Look at the sunlight” as he held up his arms and basked in it, dancing around! I could not physically respond but I doubt I will ever forget to appreciate the simplicity and beauty of late afternoon sunlight shining through a window. ..yet another lesson from our young Prince.

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