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Sunday, August 10, 2008

Maybe a jaded view?

Most posts you see on our blog are from Gretchen and on the rare occasion that I feel like letting my feelings free you see one from me. Well it looks like today might be one of those days though am not so sure it is a good thing. I guess I am week from lack of sleep as I often resist the urge to write and appear vulnerable (guy defense mechanism) and often my feelings are more aligned with anger and frustration than with sharing with you what an amazing spirit my son has and how amazing and strong my wife is. She always makes the worst of situations tolerable for Liam and often at her own expense. If there is a hero in my book besides my amazing son it is without a doubt my wife. I am sure I do not tell her this often enough and I am sure that in my own state of pain and worry that I do not often have the energy and feelings left to tell her just how wonderful she is. The truth is, after the last year of fighting and our dramatic and sudden fall from recovery back to active treatment, I am left numb and to put it simply pissed off.

More than a year after Liam was first diagnosed I realize that I have less tolerance for peoples petty troubles and endless whining. I find that I have no need in my life for people who promise the moon and deliver not even a single ray of sunshine. I have less patience for mediocrity and for those whose mere existence is to just exist. The promises of help and support from many that in the end often don't materialize beyond words is something that no longer surprises me but rather is actually expected . At the same time I have met more truly amazing, caring people in the last year than in my entire lifetime. Perfect strangers in some cases who have truly gone above and beyond for Liam and our family. I have no need for those who treat Gretchen and I like lepers because they are sad for us. Those who avoid us because they are sad and focus on our despair versus the miracle that is Liam and the powerful inspiration that his spirit and bravery should be for everyone who has the privilege of knowing him. Don't be sad for us, be mad and motivated by us and by Liam. Get off your ass and do something for Liam, for kids with cancer, or any sick kid for that matter. Don't be sad and please don't say, let me know what I can do to help. If you truly truly want to help Liam and other kids like him and are not just saying it, your opportunity is just around the corner. When Cookies for Kids' Cancer, the non-profit we are creating with the help of some amazing supporters, launches in the coming weeks you will be presented with our answer to the all to common statement of let me know if there is anything you need or that I can do to help. The answer is you can hold a bake sale, encourage a business, co-workers, friends, family, and anyone you can to hold a bake sale to raise money for pediatric cancer research. Liam does not need anything more than he needs better treatment options at his disposal. Helping us help researchers discover the next best treatment for pediatric cancer is how you can really help.

Listen I know our fight and purpose is not for everybody fight but if you are reading this blog then you either care or are just here to witness the drama and misery and that would mean you are a bit twisted. So assuming each of you, more than 300 of you on any given day, are reading this blog because you truly care then we should be able to have more than 300 bake sales in the month of September. You would be doing something to support Liam and to support Gretchen's brain child. Do something to help us fight back against the relentless disease that does not want to let go of our son and the 4 year old kid who you have come to love. Gretchen might not have made it crystal clear in her post from a few days ago when she asked anyone interested in knowing more about Cookies for Kids' Cancer to send her an email because only 3 or 4 of you did so. Funny enough one of the people who did respond was one of those perfect strangers who know of us only through our blog. The email she sent Gretchen was what has kept us going the last few days as our family has been split in two with Gretchen and Liam in the hospital.

The government just approved an additional $30 million a year in pediatric cancer research to be spread across numerous types other next 5 years. A pharmaceutical company would spend twice this amount in one year just to advertise a new erectile dysfunction drug they spent hundreds of millions of dollars developing. Maybe this is why there has not been a new pediatric cancer drug developed in the last 20 years. Maybe this is why kids are treated with chemo agents developed for adults and the reason that most of the other drugs they are given were also never intended or proven safe for them. a few million dollars is not going to make a dent. It is going to take the kind of movement it took to make breast cancer a national priority. It is going to take people standing up and making some noise and spreading the news, getting involved. I appreciate the new support from the government but it is not enough. I am angry at the lack of support for children fighting cancer from those who have the power and the resources to truly make a major difference. The 3 large media networks recently announced an alliance to work together to raise cancer awareness and kicked off a campaign called Stand Up 2 Cancer. They intend to donate the funds raised to numerous non-profit organizations. Guess what? they did not mention a single pediatric cancer and have not aligned with a single pediatric cancer foundation. The coverage also did not feature a single child and yet cancer is the disease that kills more children per year than any other. More media attention is focused on what kids watch, listen to, or play with than what is most likely to take their lives. It is for this reason that we are on a mission. It is the reason we have dedicated what for most is sleep time to the Band of Parents and now to the creation of our own Cookies for Kids' Cancer. I have to tell you though that we are just two people who are locked in a battle with cancer to save our son and can only do so much. I don't think anyone really grasps what we face each day and I cannot expect them to since before we were thrust into the world of kids cancer I never gave it a second thought. I think at the end of the day what we and all families facing pediatric cancer endure is simply not something most can comprehend and for this I cannot blame people for not really getting it. In toady's world most are overworked, starved for time, too busy, and self focused to have anything left over for others. I don't think most people are even consciously aware of their lack of empathy. I know as I have been one of these types of people for years. My eyes have been opened to many realities that I was to blind to see before. I am in awe of those who have given so much of themselves to us and to Liam and especially to those who were not close or did not know us before Liam became sick.

Our town in New Jersey is not even aware of Liam's fight outside of a handful of people because we have done everything we can to make it seem like everything is normal and likely because we are not at all comfortable with appealing for help. Interestingly enough if someone was to look close enough they would see that the edges of our lives are showing signs of wear. For example, we have a pile of decking material that has been sitting in our driveway all summer and now that we are back in the fight in a big way it will likely still be sitting there next summer. I keep dreaming that I am an Amish man and my Amish community is going to show up and hold a barn raising like event like they do in the movies and my stalled year old deck project will suddenly be complete. In addition to the giant wood pile, a 20 yard pile of mulch is sitting next to it waiting for me to find time to spread it and this too is also a sign that things are not as they once were or as they appear to be. Small things that have fallen by the wayside. Not a year has gone by in the last 10 where the flower beds and trees in our yard were not edged and mulched but this year the endless war between grass and mulch beds is apparently being won by grass and weeds and I have no time or energy to step in. I could pay to have it done but that would mean that I was admitting that I could not do it because of our circumstances and for some reason admitting such is difficult if not impossible for me. The flower bed at the top of our driveway has been taken over by the adjacent field and is now full of weeds. It looks as if the house might be abandoned and that is not far from reality. My car's inspection certificate expired 2 weeks ago and the easiest solution at the moment is not to drive it. I am not complaining just reflecting on the ways that somewhat irrelevant tasks and needs are ignored and yet they bother me and stress me each time I am reminded of them as they are symbolic of our mess and the challenge we face. I have done all I can to try and keep up appearances as much for my sake as others but I am losing a little bit of this fight each week and it feels to me that as more things slip through my grasp there are that many more things that I have to hold together and make happen for various entities who depend on me. It truly comes down to decision like posting a tribute of child who has lost their fight on the Band of Parents website or cleaning up a flower bed. No brainer from my vantage point. Lately though I have grown tired of running at 200% and tired of watching my wife do the same. We made a conscious decision to give up one of Gretchen's key clients a week ago since the added workload, stress, and frustration was not something we wanted in our life at the expense of precious time together with our kids. Financially it is a setback for sure but there is no doubt for us as a family that it was the right decision. Our hope is that it will also free Gretchen up to focus more energy on what is really important to us at that is to see Cookies for Kids' Cancer make a meaningful impact in the world of pediatric cancer.

Imagine how hard it might be to put a smile on your face and go about life as if everything was fine when you were just informed that one of the families with whom you bonded and who bought your wife lunch several times when they found out she was in the clinic alone with Liam, just lost their son to the same cancer you are fighting. It is sort of like being spun around in a circle about a hundred times and then being required to show no signs of dizziness or better yet punched in the stomach 2 or 3 times but you are not allowed to show any pain. Hearing that someone you personally know has passed away will rock just about any ones world but imagine if you heard about the loss of a child's life about every two weeks on average. A child whose story you know all to well. Whose smile you have seen as they played with your son. Whose parents you know and whom you consider friends. We have chosen to convert this sadness and despair into vengeance and it will be science we intend to use as a weapon against the instigator of such sadness. We hope that those of you who have opted to observe our journey over the last year have seen and read enough and are now ready to do something to help us fight back and to make a difference in honor of Liam and all that he has endured and will continue to endure. Ok enough emotional release for me for a few months. Stay tuned for your regular scheduled programming about an amazing young prince. Just know that his fathers heart aches with immeasurable pain knowing there is nothing he an personally do to make him better short of hoping that the wizards who have been asked to save the young prince have the right magic potions to make him all better. The father has promised his wife, the brave prince, and the prince's little sister that he will do all he can to provide the wizards with the tools they need to be successful and he must not fail.