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Tuesday, December 15, 2009

Please stay tuned...

I have been sitting here trying to think of a title for this long overdue update and after a few options presented themselves I opted to simply name it Please stay tuned...
At first it was simply a way to open a post many of you have been waiting to read for several months. Hopefully though by the end of this post it will encourage you to stay tuned and maybe help you understand why posts have been so few and far between.

Liam's most recent relapse really caught us by surprise, and to be honest really knocked the wind out of our sails. To think the bad news we always half expect to hear could hit us so hard, shed new light on the reality of what we were up against and sent us deep into our hole. We have not had the strength to share our innermost hopes and fears like we have been able to for the last two plus years. We were angry, scared, and needed time to heal a bit and to find our voice again. Over the last few years we have witnessed too many families lose their children to cancer. Some very close to us whose children we wanted life for as much as our own. We have learned the facts about why pediatric cancer is so many years behind when compared to the medical advances made for most adult cancers. We have been living in two completely different worlds and we often do not feel like we really fit in or relate to those in one and the other is not one we want to be in and would do anything to get out of. Imagine all that we have experienced in the last few years and the pain we have witnessed Liam endure, the never ending fear, the never ending feeling of helplessness we live with, and all while the world spins madly on around us. I sometimes think that maybe we have done too good a job of handling this curse. We have met it head on and taken it in stride. We have remained endlessly hopeful, committed, and as some have said a force to be reckoned with. But much of this courage, strength, and ability to balance our lives between the two worlds came to a crashing halt when we learned of Liam's second relapse. It was a sucker punch. One thrown by a coward when we were not looking. One that sent us to the ground grasping for air. The wound inflicted was deeper than any before it and it is one we doubt will ever truly heal. Each day suddenly required so much more energy to get through it that any task requiring above and beyond emotional input was outside of what we were capable of enduring. The blog as you know was the first emotional baggage to be thrown overboard. All available energy and focus went into things that can't be thrown overboard like our kids, Liam's care, work, and Cookies for Kids' Cancer, the foundation we started. All things we were more committed to than ever before. So hopefully those of you who have stood by us over the last few years will understand why putting our feelings into words the last few months has been a bit more difficult than we expected. I know Gretchen who has posted the large majority of our postings has found it very difficult and many of you know I all but abandoned posting more than a year and a half ago for similar reasons. For me it was due to the reflective nature of writing such posts. It often forced me to recognize personal feelings and fears that were often painful to acknowledge. I chose instead to keep them bottled up. Needless to say I will once again begin to post news about Liam, his adventures, treatment plans, and to share insightful stories about our hero. We know many of you have a deep love or him and it is only fair that we keep you up to date on the Prince on a regular basis. He continues to inspire us, his doctors and nurses, teachers, friends, and all who have the pleasure of knowing him.

This week Liam is receiving his 6th round of low dose chemo. Each day so far he has attended school in the morning and treatment in the afternoon. This is not a treatment intended to cure him but hopefully it will hold his cancer back for awhile. It does provide him with excellent quality of life right now and another reason we have been silent. We recognize more than ever that time with Liam, and Ella too for that matter, is truly precious and we need to take advantage of every second we are blessed with. There are a few treatment options being discussed but none of them the sure bet we desire and that Liam needs. Each just a trial. Some older trials and their success rate or lack there of known, plus newer trials not yet proven effective or in some cases even safe. We have the option of receiving more 3f8 antibody though it has not been proven truly effective against soft tissue disease which Liam has been prone to.
We have some hope for the humanized version being developed at MSKCC and hope that it can be brought to the clinic sooner than later. We and many of our closest NB families are dealing with relapses and time is something we all realize we have little of. It is hope that gets us all from one day to another. Hope that science can win the battle against neuroblastoma and pediatric cancer as a whole, hope that our efforts will help make a difference, and hope that all of you will stay tuned! We continue to need your support, love, and hope. We need each of you to help us make a difference and to be advocates for pediatric cancer...for Liam, for Cookies and all that we are trying to do to help make a difference. If you are new to our blog please take some time to read the archives to gain a true feel for our journey and how we have arrived at this point this point in time. We are looking forward to a magical holiday season filled with love,joy, and discovery and wish the same for each you and your families.
By the way there is still time to order cookies and have them arrive by Christmas or take your time and send as a New Year Gift. www.cookiesforkidscancer.org