Last week was the worst week we have experienced in a very long time and quite possibly the worst since this journey began nearly four years ago. Liam has not been right since surgery 5 weeks ago to remove the small tumor in his chest. His recovery was too slow and he was not the Liam we knew the weeks prior to surgery when he was jumping in the pool, swimming, and enjoying summer like a kid is supposed to be able to do. The reason for his struggles became apparent last Friday when his recent scan results showed that his cancer was spreading. It has once again appeared around his right kidney and it could be that his kidney is now involved. The site in his chest that was just surgically cleared 5 weeks ago has new disease that looks as if nothing was even removed.
This is the most aggressive his disease has been and it has put Liam in a very dangerous place. He is weaker than he has been in a very long time and suffering from the effects of radiation and now the chemotherapy he is receiving this week in hopes of stopping the spread of this relentless, insidious, cancer. He is barely eating because he feels to sick to keep anything down, only making him weaker. We have never felt like we were losing this battle until now. Each relapse has been simply a bump in the road and together we have been able to meet it head on and get back on track to the amazement of many. This time is different. This relapse is much bigger and we have lost precious ground this time. We are scared for him in a way unlike any time in the past.
The conversation with Liam’s doctor was just as different. Each time in the past a game plan was presented and there was never a question of fighting on. Never a question of what do you as his parents want to do…it was obvious. This time we were both summoned to come in and discuss the situation even though everyone at MSKCC knows I have the scan result and game plan conversation alone and Gretchen is allowed to remain focused on Liam and the prize and is not to be brought into such discussions. This time the conversation started off with “this is serious” and then basically we were being asked if we wanted to wave the fucking white flag and surrender our son to this worthless enemy. No matter the words chosen by our doctor this was the question. Surrender to an enemy who’s too much of a coward to fight an adult like myself but rather it looks to steal our small innocent son.
Gretchen and I had already discussed this possibility and unless there was a case presented clearly stating we had no chance of stopping this disease we were going to keep going. We know Liam wants to live. He is one of the most alive people we have ever met and there is no question in our mind he would not want to give up if he had the ability to make such a decision on his own. It is a decision that a parent should never have to make because while we know fighting for his life is the right thing to do but it is tempered with the fact that we know the therapies we must use are taking their own toll on him and we also know it is very unlikely a cure. We all agreed to do a very strong regimen of 5 different chemo agents. It has to work. It must stop the progression we are seeing. We will then likely need to repeat the regimen and it will need to shrink the present disease to a point where it can be surgically removed again. We never stop hoping for a miracle and at the very least looking to buy him more time to experience the sun, moon, stars, sand, his best friend Tabor, and sweet adoring sister Ella. Liam needs your love, strength, support, acts of kindness, inspiration, and anything and everything you can spare for him now more than ever before. He is miserable and the coming weeks and months will only be more of the same for him and all of us involved. I cannot remember the last time I have seen him so beaten down. We need him to remain engaged and fighting. We all need more time to love and adore our Prince Liam. More time for Scientists to unlock the weak link in this cancer.
Last weekend Liam was supposed to travel to South Carolina to meet his friend Jack Johnson, a singer songwriter whose music Liam simply adores. He was going to be Jack’s guest backstage and to see Jack in concert. Unfortunately Friday’s news and the way Liam was feeling forced the trip and meeting to be cancelled. I so wanted him to be able to make this trip and for him to meet Jack whose music has put him to sleep and calmed his mind and heart so many times. I wanted him to leave an impression upon the man’s whose music touches his little soul, knowing Liam would surely touch his soul, as he has done to everyone who has had the pleasure of spending time with him. Instead Jack sang Liam’s favorite song to him and a friend of ours videotaped it and brought it to NY on Monday to share with Liam (thank you Emily we love you and thank you Jack!). The words to the song are below and the most amazing thing is the words are so fitting. It’s as if Jack knew Liam when he wrote this sweet song. It reflects Liam’s outlook on life, love of the sun, weather, the grass, and how his world really is a puzzle he enjoys taking apart and putting back together. Liam like the water gives us all a gift. If we could just give back to him like the clouds give back then the sun would come back out and he could follow it forever.
Talk of the Town by Jack Johnson
I want to be where the talk of the town
Is about last night when the sun went down
And the trees all dance
And the warm wind blows in that same old sound
And the water below gives a gift to the sky
And the clouds give back every time they cry
And make the grass grow green beneath my toes
And if the sun comes out
I'll paint a picture all about
The colors I've been dreaming of
The hours just don't seem enough
To put it all together
Maybe it's as strange as it seems
And the trouble I find is that the trouble finds me
It's a part of my mind it begins with a dream
And a feeling I get when I look and I see
That this world is a puzzle, I'll find all of the pieces
And put it all together, and then I'll rearrange it
I'll follow it forever
Always be as strange as it seems
Nobody ever told me not to try
And the water below gives a gift to the sky
And the clouds give back every time they cry
And make the grass grow green beneath my toes
And if the sun comes out
I'm going to paint a picture all about
The colors I've been dreaming of
The hours just don't seem enough
To put it all together
