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Thursday, August 26, 2010

And the clouds give back every time they cry..

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

Sunday, August 15, 2010

Friday at Lincoln Center

Finally. An Update. Friday, August 13th.

Friday the 13th of August marked three weeks since surgery. The surgery itself was fine...as far as surgery goes. Dr. LaQuaglia once again literally saved our son's life and has kept him in the game. What that man does as a matter of routine business on a daily basis goes beyond comprehension. It turned out that the lymph node had sprouted tentacles that were branching out from it and ouching his esophagus, pulmonary artery (or was it the vena cava?) and lung. I don't even want to think about what it was ready to do. It was one of Liam's shorter surgeries, but after a too-long wait for a surgery update that left us anxious and nervous and without the benefit of a waiting room filled with friends to keep us preoccupied like we have had for Liam's other surgeries, it felt like one of the longest.

The past three weeks have been very long weeks filled with lots of annoying "little" things that individually can all be explained but collectively make for tense times. The roller coaster we normally ride has been even more intense. We had issues while still in patient after surgery that had me trying to comfort a little boy who was beside himself with anxiety while simultaneously and vigorously explaining to nurses how we were going to deal with a blocked port...an episode that started at 3 a.m. and didn't resolve itself until well after 5 a.m. They were ready to give up after a lackluster attempt and put Liam through something very painful. I was determined that they were going to work at it like I have seen other nurses work at a blocked port until they resolve the issue. In the end, it unblocked without needing to make Liam endure more pain.

After surgery on Friday afternoon, he was up and shuffling along, completely naked except for shoes, at 10 a.m. on Saturday morning. He would painfully shuffle to a fish tank filled with lots of colorful fish, glance up, and beg to shuffle back to the room. While we were still in patient after surgery, our sweet prince endured having his back pounded on every two hours through the night for the first two nights after surgery, including directly over his brand new 6" incision, to loosen the build up of fluid in one of his lungs that was heading towards pneumonia. He would yelp and cry in pain during the procedure while giving me a bear hug...all while listening to "his friend" Jack Johnson sing to him for comfort. He never once complained.

For 13 days post-surgery, he coughed and coughed and coughed nonstop trying to open up his lung and was finally treated with an antibiotic specifically for bacterial pneumonia, even though he didn't have any fever which is the tell-tale sign of a bacterial infection. The coughing was so intense it would make him throw up, cause his stomach to be in a constant state of discomfort and to be exhausted from the effort. It was vicious cycle that finally started to resolve itself around day 17.

Since he was returned to us from surgery, it feels like every time he starts to feel better he's hit with something that sets him back. It doesn't help that his recovery has involved more treatment. In the past three weeks he has gone through two rounds of Rituxan (the first was six days post-surgery), a different antibody he hasn't received before, which is a relatively "easy" experience although one that people have died while receiving so it is monitored very closely and requires a very long day (11 hours) at the hospital. He has also had a round of Irino/Temo low dose chemo between the rounds of Rituxan. He has had no appetite, although in the past 72 hours we have seen it coming back. ("You want cookies for breakfast? Absolutely! Eat as many as you want, honey! Can I get you some ice cream?") (Yes, the insanity of the situation never loses itself on us.) He has lost the weight he worked so hard to put on the weeks before surgery, something that is frustrating to him and us. On top of the pneumonia-like symptoms, he was hit out of the blue with the most awful stomach virus symptoms exactly one week after surgery that had him completely down for the count but increased his white blood cell count from a normal range of 4 - 11 to 21.5. When we got the CBC results with that white blood cell count, everyone...and I mean everyone...on his medical team was a bit wigged out and decided to share that wigged out feeling with me in front of Liam which left my knees ready to buckle as I tried to nonchalantly take in the news while acting like they were telling me the score of baseball game I was vaguely interested in. "He has two key key tumor markers that are incredibly elevated!" I was even asked, more than once, if I was giving him GCSF shots to increase his white blood cell count. ("Oh, yeah, you caught me...I have been giving him the injections he despises almost as much as he despises Temodar capsules just for the fun of it!) Not surprising to us because we knew how sick he was from the rogue virus-like symptoms that plagued him, his white blood count has since gone back to normal. In the 21 days since surgery, he has gone through radiation set up...yet again but this time with Ella by his side...that included another tattoo to help line up the radiation beams in exactly the right spot. This time to help ease his high anxiety, I told him I'd get a tattoo first to show him how it didn't hurt. The technician administering the tattoos thought I was joking. I wasn't. I let Liam pick out the place on my body he wanted me to get the tattoo. He chose a spot on my right forearm to match a freckle on his right forearm. He received the first of 10 radiation treatment to the area where the lymph node was. During the treatment course, he's going to get some more radiation to his scapula to go after it again.

It has been a lot but we're not complaining.

Throughout it all, we have been living and loving and loving living. We have been to the movies (Cats & Dogs isn't so great but the kids loved it), we have stumbled upon an amazing free concert of music from around the world at Lincoln Center that Liam and Ella loved, we have been enjoying the peace and quiet of our home in New Jersey, and with Ella's help ("Come on buddy, you can do it") have been prodding Liam along to get back to the Liam we all very much want and need to see...the little boy with boundless energy and enthusiasm. He's getting there. Slowly.

Next Friday is August 20th. It's my birthday. It's the fourth week after Liam's fourth surgery and the fourth birthday I'm marking (noting, not celebrating) since this journey began. Next Friday, August 20th, Liam has a CT scan scheduled. I have two favors to ask. 1. Please pray/believe/hope/chant/meditate that the CT shows what we all want and need for it to show...nothing. 2. Please have a bake sale this fall to support pediatric cancer research. Our incredibly supportive supporters at Glad just announced a bake sale match period from September to December. We want to take full advantage of this match. We have to...Liam and his friends are counting on it.

It has been a hard few weeks but we have never lost our faith...and he has never lost the essence of who he is...a sweet little boy who wants to do nothing more than to be a little boy and big brother.

In the past few days, Liam has been planning a party he wants to have this fall. He's calling it a fun party for everyone to come and have fun. While receiving antibodies and chemo, he has slowly and diligently written out invitations, come up with a schedule for the party, and deliberated on every aspect of the party. We will keep planning the party because that's what we should all do...look at life as one big party to enjoy and celebrate.