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Monday, August 25, 2008

It’s all just so ludicrous

Monday, August 25, 12:35 p.m.
We’re back at it. We’re five hours into day one of the second round of chemo which we hope is our last round of high-dose chemo. (I think he can’t receive any more after this….but it’s a question I don’t ask.) We’ll be here every day this week with Monday and Tuesday being the super long days. And after the round finishes on Thursday, we’ll be back on Friday for blood counts. We anticipate being back in patient some time next week until his body’s bone marrow recovers enough from the assault of toxic chemicals and starts making white blood cells.

Liam had a CT scan last Tuesday which looked fine. It was his eighth CT scan and his third without anesthesia. He was a seasoned pro…unfortunately. Full of questions about how it takes pictures (we’ve actually watched videos on YouTube of how a CT machine works, much to Liam’s fascination), impatience that we had to wait for almost two hours, and questions about why Dr. Kushner wanted to see pictures of his inside body. It was done to have a new post-op base line and apparently was just fine. What I’m leaving out is the struggle to get Liam to drink out ounces of apple juice spiked with the contrast fluid needed to be ingested before a CT scan but not too much before. He really despises the whole having to drink contrast activity and takes the tiniest of sips and pretends to gag on each one. Those eight ounces take more than an hour of constant badgering to get down…tiny sip after tiny sip…all while keeping a close eye on my watch to make sure it gets down by the deadline. The process starts out as a negotiation and then as the deadline approaches, shifts to more of a dictatorship. And then once we arrive at the hospital, we have to deal with the whole nervous energy leading up to having his port accessed. “Mommy, why do we have to do it?” “Do we really have to do it?” “But Mommy, it’s going to hurt!” And then when it actually comes time to plunge the one-inch needle through his skin to go into the port, I find myself levitating over my body watching the scene from above because it just so goes against the laws of being a child…or a parent. How many times have I had to restrain my sweet son while he either gets a finger prick, injection, dressing change, or some other things that just shouldn’t be happening all in the name of giving him life? But, as always, what gives me strength is Liam. Two minutes after the accessing process, he’s fine…ready to play. He still loves me. He doesn’t get angry with me or hold anything against me. He’s still my sweet son who has had to endure yet another personal invasion. As hard as the accessing process is, the deaccessing is just as awful. He hates having the sticky bandages removed from his sensitive skin. He insists that I do it, one handed, using lots of adhesive remover pads, without pulling, while he sits in my lap. And then after the bandages are removed, he braces himself and I restrain his waving arms and kicking legs so that the nurse can pull the 1-inch needle out from his chest. It’s not so much that it hurts, I think it’s more of another assault on his body and personal space he’s objecting.

He’s back up to his pre-surgery weight – 18.4 kilos – courtesy of PediaSure chocolate milk and homemade Belgium waffles made with tons of butter and whole milk. (He can eat two Belgium waffles in a sitting.) We finally got him to branch out and try a different food – chicken nuggets – which he devoured six of in one sitting which, for him, is a record. We know these victories are short lived since his appetite will be wiped away beginning today for the next three weeks. Right now he’s eating Smart Puff Cheese Puffs one after the other. He has almost consumed an entire bag which will equal 585 precious calories. And he’s had ¾ of a Belgium waffle (I brought frozen ones to the hospital with the hope he’d eat) and three PediaSure drinks (at 237 calories each). I remember the days I used to count calories for an entirely different reason. We’ve already had a conversation with Dr. Kushner, whom Liam admonished for not being around lately, about getting an X-Ray on Liam’s right knee later this week. He fell last weekend on his right knee and has been limping since…although not letting it slow him down…but because it’s the right side of his body where his original tumor was located, and because he had disease on his femur in that leg (although not in his bone marrow), and because it’s neuroblastoma which doesn’t like to give up, and because chemo can cause bone weakening…we’ll have to check it out. You know what I despise about this disease? For the rest of Liam’s life, a bump can never just be a bump…it will always need to be assumed it’s something bad. In this world you assume for the worst and hope for the best. When you see Liam and see how “normal” he looks and acts, it’s hard to reconcile in your mind that his health relies so much on the skill of the countless medical personnel. And wait, could someone please wake me up from this dream of having a child who has already been a part of two clinical trials and is going on his third?! Clinical trials? My child? You have got to be kidding me. There is just no way.

We’ve been a little slow on updates on Liam. The extra time we normally have in our schedule has been taken up with working on the Cookies for Kids’ Cancer website. It has been a very tedious, slow-going process but it’s going and it is gorgeous. The whole thing, though, like the rest of my life, has been fairly ludicrous when you look at what we’re juggling to get it all done. Writing copy while sitting next to Liam in a hospital bed, weighing in on a look of a page while waiting to be called into a CT room, staying up until 3 a.m. with my husband to get copy where it needs to be. I’m not sure if my birthday wish came true, I don’t know if we have 100 people who have committed to holding a bake sale, but it’s almost immaterial in light of the incredibly powerful e-mails we received from many friends but even more people who we don’t know but have been following our story. What is it about someone’s character to reach out to someone they don’t know and make a commitment to get involved? And one very, very special person already had her own bake sale in her office last week to win the title of early bird bake “sale-r.” She raised $100 in her office bake sale and then through her work received a matching donation to double the amount of money she raised. Our early-birder is not a long-time friend or family member, but someone who heard about us from someone else and decided to get involved.

One thing I haven’t been able to write about yet because it’s still too raw is one very special teenager we met while Liam was in patient. Victoria was diagnosed only a few days before Liam was admitted during his last stay. She went from being a healthy, trophy-winning softball player with the world ahead of her to a stage IV cancer patient lying flat on her back with no warning. For the week that we were in patient, we would see her father walking the halls. It wasn’t until the sixth day that we finally met him and he told us about his daughter. She had slid into second base during a softball game and it bothered her knee, but not enough to cause alarm. They left for vacation the next week. The pain got worse. They went to an ER to get it checked out. The ER doctor thought he saw something but couldn’t tell what and suggested the family see an orthopedic doctor. They cut their vacation short and made an appointment with an orthopedic doctor. He ordered a CT scan and told them she needed to see an oncologist immediately. They made an appointment and she was almost immediately in surgery to remove cancer from several areas of her body including along her back. Her father invited me to visit her and give her a pep talk and I immediately said yes. What I didn’t realize is that she was in room 10A, the very room Liam and I first occupied when we were brought to Memorial Sloan-Kettering via ambulance on Tuesday evening, February 27, 2007. I haven’t been in that room since and actually avoid going near it. Victoria is a beautiful girl with long, curly dark hair and soft, brown eyes. She was lying in completely flat in bed. I went over to her side, held her hands tight and told her about Liam and how we have never, ever, ever thought anything other than Liam will be fine and she too will be fine. I told her that these early days are the absolute worse. I told her that she’s a competitor and she knows what it means to be up against a tough team and how to win and that she can win. I told her to stay focused. I told her I love her and will be here for her and her family.

The next day Liam visited her with his candy cart and bestowed her with lots of candy from his candy store while literally bouncing around her room like Tigger. She smiled. He told her he loved her. And again I was reminded why we’re doing Cookies for Kids’ Cancer out of sheer determination and conviction. We simply have to.