So we are now in the week following the completion of his third week of chemo and I can now see how the combined rounds of chemo have tired my son. It is apparent to me now that Liam knows he does not feel well and he is careful about what he eats, how he moves, and it seems that he is conserving energy by limiting unnecessary movements, and displays of emotion. Everyone now and then he is overwhelmed with excitement and he reacts the way that you would expect a 2 and a half year old to react but he quickly catches himself and seems to turn it down some. He is generally happy and in good spirits but it is all relative to his situation. One of the hardest things for me to accept is the treatment process that appears to be hurting the one I have sworn my life to protect. It is hard to accept that what is capable of killing him is actually the one thing that can help him even if it is in some sinister way. It is really hard to accept this knowing all of the potential short term and less known long term affects of the chemo doses that Liam is receiving. The only way to stomach the treatment is to face the uglier truth of what no treatment would ensure. Processing the reality of the world we have been thrust into is so difficult and consuming that there is no way that anyone can truly understand the pain and fear no matter how hard they might try to imagine.
I have been reading the diary of a father whose daughter was diagnosed and treated for neuroblastoma a few years back (she remains free of cancer) and who chronicled his feelings and days very much like Gretchen and I have been doing. In one entry he attempted to explain what it is that we as “cancer parents” feel and there really are no words or examples that can come close to giving friends and family a small taste so that they can possibly better understand what we face each day and what it takes to do so…. What it takes to get up each day. What it takes to keep Liam going, What it takes to keep each of us going, What it takes to be sure that Ella is loved like she so deeply deserves and that she gets enough of each of us, What it takes to work and not feel guilty, What it takes not to work and not feel guilty, What it takes to manage and care for two homes, What it takes to appear happy, What it takes to hold back the tears that so often want to flow, What it takes to not know what each and every day holds for your family, What it takes to have to live in a hospital, What it takes to face next weeks treatment, What it takes to eat, What it takes to sleep, What it takes to listen to others talk about their trivial problems and appear like we care because it seems trivial when compared to what we face each day, What it takes to deal with insurance issues, What it talks to deal with vague answers from doctors and nurses, What it takes to deal with differing answers from doctors and nurses, What it takes to deal with nurses who don’t respect our sons feelings and fears, What it takes to wake your sleeping angel up at 7:00 am to take him for chemo, What it takes to live in two different worlds… the one at MSKCC where everyone’s kid has cancer, or the one where we are the ones with the kid with cancer and everyone else’s is healthy, What it takes to look friends in the eye and manage to keep it together, What it takes to explain to people how Liam is doing when they ask, What it takes to hear statistics, What it takes to look my son in the eyes without feeling fear, What it takes to write this, What it takes to hold him in my arms and not have him know that I am crying, What it takes to sing twinkle twinkle little star to him and not have him hear my voice crack, What it takes to really accept that nothing is currently in your control when you are a control freak, What it takes to accept that life as you knew it is forever gone, What it takes to bear the pain of knowing Liam’s pain, What it takes to think about what Liam must be thinking, feeling, wondering, dreaming, fearing, tasting, seeing, wanting, missing, hating, hoping, What it takes to read the NY Times story on cancer’s and accept the glaring omission as anything other than your new purpose in life to force awareness, What it takes to convince some family members that it is not about them or any of their small challenges but all about Liam and his life and death fight, What it takes to let yourself feel, What it takes to not be angry, What it takes to laugh, What it takes to let others help you, What it takes to accept charitable donations, What it takes to not hate those who you expect to help but don’t, What it takes to answer the question “how can I help” or “what can I do for you guys”, What it takes to not look as numb as I feel, What it takes to not cry when hugged and to actually remember to let go, What it takes to parent a sick child and not feel guilty for having to say no, What it takes to breathe, What it takes to stay positive. The answer to what it takes is really rather simple. What it takes is love. But not just any love. It is a love like no other love a human will experience and for that matter no other pain. What it takes is love created by a genetic bond between parent and child that is only fully realized and appreciated when this bond is in some way threatened. Cancer threatens this love and bond to its core and it is this feeling that is impossible to imagine even as loving parents. In the wild the most dangerous animals are those who feel their young are in danger and who attack in response to this fear. We as humans have this built in defense as well and it is this defense that keeps us going when we feel we can take no more. What it takes you?...... Whatever it takes………………
Larry
