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Wednesday, June 20, 2007

I wish... I wish... upon a star....

Last Friday night was our first night back at our home in New Jersey and those of you on the east coast may remember it was an absolutely perfect summer day. Around 10:00pm Friday evening Liam comes up to me and says Daddy! I want to go and see the frogs. I explain to Liam that we will need to get a flashlight to see them since it is night night outside so we head out to the garage and grab one before heading out to the pond. Liam all the while is mimicking the sound of a frog...ribbit..ribbit while bouncing in my arms. We hear the frog chorus and their spashes as several jumped into the water as we drew nearer. We turn on the light and begin to count them. Theres one Daddy! Look Liam over there by the tree. 2, 6,13,9,11,4,1 Liam shouts with Glee as he counts them. 12 frogs in all setting a new record for our little water habitat. Liam then points to the other side of the yard and says that he wants to go over there. I am not sure where he wants to go and so I ask him. He replies in his sweetest little boy voice...Daddy I want to lay down and look at the stars. I quickly realize Liam was pointing to the hammock. Liam has not asked to see the Frogs since last summer and Liam has never asked me to look at the stars together especially while lying in the hammock. Before climbing into the hammock we run inside to grab a blanket since it was a bit cool outside. Liam gets comfortable lying on my chest and then asks where the bright star is and together we search for it in the perfectly clear night sky. Where is Mr Moon Daddy? Just over the hill I reply...he is hiding. Liam giggles. We rock gently back and forth in the hammock as I reflect back on the times I stared up at the heavens as a kid. I begin to softly sing twinkle twinkle little star to him. The song that got Liam through many of the scary days early on in his treatment...the song he would ask Gretchen or I to sing anytime he was scared. I used to play a game when looking up at the stars as a young kid. It was a simple game played with god. I would ask God to show me he was real or that he could hear my thoughts and prayers by having a star shoot across the sky. A silly kids game that often left you with more questions than answers. I played this same game late Friday night but now as an adult, a scared father holding his precious sleeping son in a hammock under a brilliant night sky. I imagined future camping trips with Liam on nights just like this one. I imagined his world with no more hospitals, pain, or uncertainty. I felt his warm forehead against my cheek and wondered how this very feeling, this bond, this pure love, this life of his could be so tenuous and so violated. I searched the sky for answers to my fears my questions, my purpose as I began to doze off..........I awoke minutes later to the sound of frogs and the twinkling night sky before my eyes...seconds later a brilliant flash of light moves from left to right across the sky then fading, fading, gone. I ever so quitely took Liam inside to bed. Gretchen asked me if Liam and I had fun looking at the frogs and I simply replied ...."Liam just gave be the best fathers day present ever".

The rest of the weekend was filled with laughter and hundreds of questions from our inquisitive little guy...Mr. Why? and his sassy sidekick Miss Whas dat? Ella was funnier than ever and absolutely loved the pool now that she is old enough to get it. The two of them are quite entertaining to watch and when they play nicely together it is an absolute joy to see. Liam is not quite sure what to make of his suddenly bold, fearless, and loud little sister who takes great pleasure in pestering him. Liam had more energy than he has had since the weekend before he was diagnosed nearly 5 long months and a lifetime ago.

Our meeting with Doctor Kushner less than 48 few hours away certainly tempered our mood as we watched our children work to become brother and sister again this past weekend.

Monday and Tuesday have come and gone as has the meeting we anticipated and feared with Liams Doctor. The results are truly encouraging and after 5 rounds of chemo and 5 months of bloody battle Liams cancer is being pushed back! The battery of tests last week confirm all of our hopes and prayers. Liam no longer shows "visible evidence of disease" His MIBG scan that had highlighted numerous areas of disease when first diagnosed was clear as was the CT scan and the bone marrow tests. Dr. Kushner is extremely pleased with Liams progress and has declared that Liam is ready for the next phase of treatment. No more chemo therapy. Please do not misunderstand, Liam still has cancer and Neurboblastoma cancer cells lurking in his body that need to be eradicated...the battle is not yet won but this is a significant mile stone. Liam will begin the immunotherapy next Monday or as we have likely referred to it in the past ..3f8's or mouse antibody treatment. We will get into the details of this treatment at a later date. You may remember that this part of the treatment is going to be the most painful for Liam. He has not really experienced a great deal of pain up to this point but more discomfort and annoyance. The 3f8 treatment causes severe pain for a good part of the 30 minutes it takes to inject the antibody, requiring heavy doses of pain medication. To put it simply they cannot give enough pain medication to make it painless without causing a child or adolescent serious issues. Each round of 3f8's lasts a week with 3 weeks between treatments. Liam will also undergo a week of radiation to treat the abdominal area where the tumor resided to lessen the likelihood of it coming back. One of the tubes leading from his kidney to his bladder is partially obstructed due to some scar tissue from surgery but it is of little concern to his doctors and surgeons and treatable if need be. He will have an ultrasound performed on July 8th to provide more insight into the severity. Liam will also begin taking Acutane....yes some of you know this as the medication for acne that received press several years ago after being tied to teenage depression and suicidal tendencies. It is simply Vitamin A in a sort of suped up mega dose that has been found to lessen the likelihood of a relapse....something Neuroblastoma is well known for. We have many months of treatment yet ahead of us but we are on to the the next phase...the playoffs if you will! Not all make it to this point with so few setbacks. It is a huge win for Liam and all of us who love him and cherish him. We would not be at this point if it were not for the support, positive thoughts, prayers, tears, hugs, food, financial support, time, friendship, cards, fund raising, toys, books, blood, and love, so many of you have shown us during our time of greatest need. It is truly working........Go Prince Liam the Brave Go!

The next battle to be waged against our relentless enemy will begin next week with a strong army of 3f8 soldiers along with all of you supporting our Prince in battle.

I wish I wish upon a star..........