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Wednesday, September 16, 2009

My name is Liam. “L” - “I” - “A” - “M”.

Today was day two of round three of low dose chemo. It’s not so bad…compared to what he has been through. He has a full head of baby soft hair…except for the oval-shaped spot on the back of his head courtesy of a pressure wound while on the bloody bi-pap machine at Cornell. I have to restrain myself from marching him over to Cornell to say – “Hello, Remember me? I’m the mom who you thought was crazy when I told you his head had a HUGE goose egg growing out of the back of it from the tight straps around his fluid swollen body and you totally dismissed me? Well, look at his head now! I told you something was wrong!” But that would only upset Liam and I’ve been told his hair will eventually grow. I suppose it’s one of those concerns that’s a bit down the worry list but I’d be lying if I said it doesn’t irk me. He has regained a lot of his energy, so much so that he outpaces Ella when we’re out on scooters but he’s still suffering from a raw esophagus from radiation that makes eating and drinking impossible without narcotics.

Daddy was out of town this past weekend so we spent the weekend out and about town on scooters. Ella’s is pink and she wears a princess helmet. Liam’s is orange and he wears a Spiderman helmet. Mommy’s has no color but has a board wide enough to accommodate Liam and Ella when they get tired of scootering. Yes, all three of us can squeeze onto my scooter, albeit very carefully. We were outside for hours on our scooters on Saturday exploring the Hudson River Parkway…in the pouring rain…and loving every minute. We came in for a break and then it was Liam who announced he wanted to do more scootering….so out we went for a night time jaunt from 44th Street and 10th Avenue to 58th Street and 8th Avenue. Two of the blocks were on a fairly steep incline which Liam went up without any struggle while Ella had to walk her scooter up the hill. Liam had one face plant – head over the top of his scooter handle – but not while going very fast. He scraped his nose, but not badly, but enough to scare him and cause a scab. As I was crouched on the sidewalk comforting him, I was in a strange way happy to hear him crying over something so normal as a scraped nose instead of a personal violation courtesy of cancer treatment. On Sunday we scootered for hours along the Hudson River on a picture perfect gorgeous September day. We had an amazing day laughing, loving and being together. We explored piers, checked out every sight along the way from a helicopter launch pad to a restored fire boat built in 1931, and watched a cruise ship makes its way along the river on the way to the Atlantic. In our pack, Liam leads, Ella follows and I stay close behind reminding Ella to keep her eyes forward and looking for bumps. Liam points out bumps to Ella and yells warnings to her. It would be Ella who would get tired and insist on catching a ride on Mom’s scooter, not the cancer patient who has been through more than I care to recount and who has every reason to be the one who tires first. He reminds me of Lance Armstrong….he does what everyone else thinks is impossible. Every time they dynamic duo went down an incline of any sort, there would be hoots and hollers and squeals of laughter. Liam has absolutely no fear of speed…and there’s a transfer of fear to me as I watch and pray he’ll be OK.

He took the hospital by storm…on his scooter. On Monday he rode into the hospital on his scooter and took great pride in showing off his new mode of transportation. He couldn’t wait to show Dr. Kushner how fast he could go on his scooter, a feat on many fronts. Ella was also along for the trip, as our new regular hospital team member. When it came time to access his port, he looked at me through tears and asked if he’d still be able to ride his scooter and I assured him yes. He also asked when we would be done with all this medicine stuff, to which I replied as soon as we possibly can be. And sure enough, after the insertion of a needle into his port which has a 7” long tube attached that snakes to his waist and before he would allow a shirt to be put over his head because of fear of disturbing the tubie, he tested riding his scooter.

Today he felt some of the side effects associated with one of the chemo drugs. When we got home, he had to take the remaining two of three chemo pills. As soon as the pills were down, he looked at me and said, “What if I have to throw up?!” I begged him to calm down and relax and not throw up but within 20 seconds he was running to the bathroom with me following and exploding with vomit that consisted of curdled milk and bunny crackers. It was so powerful it flew out his nose. He wretched and wretched and I saw the chemo pills come out with the powerful waves of nausea. And then, knowing that if he didn’t take those two pills we’d have to go back to the hospital which would mean he wouldn’t get to visit with his special friend Taber who he adores, I reached into the toilet and the sifted through the vomit until I retrieve the two pills, rushed them over to the sink, rinsed them off and then started blowing on them to stop the process of the gelatin capsule from disintegrating which would make the pill useless. It was a knee-jerk reaction. I don’t normally forage through vomit, but I would do anything to let Liam have a play date he was so looking forward to. After we cleaned him up and rinsed out his mouth, I looked at him and said, “Buddy…here’s the deal…you either take these two pills (which were standing upright stuck to my fingers but still intact) or we have to go back to the hospital to get two more.” He looked at me, asked if they were still OK to take, took my word that they were, opened his mouth and pulled the pills off my fingers and swallowed them. And once again I say that he is my hero. My poor guy who is still can barely eat or drink because of radiation burns to his esophagus did what needed to be done in order to move on.

Today there were special visitors at the Pediatric Day Hospital. Three Yankees players came to say hi. Now, Liam doesn’t know who the Yankees are nor has he ever watched a baseball game. He knows the sport from having learned about it firsthand. He and Ella stood at the front of the crowd looking at the larger than life players trying to understand what the big deal was. After the presentation the players signed balls for all the patients. Liam picked up a ball, walked over to Andy Pettitte, placed the ball on Andy’s knee, borrowed Andy’s pen, very slowly and deliberately wrote his name on the ball and handed it to him. Andy looked at the ball with complete surprise and wasn’t quite sure what to do. Liam then said he had to give the ball to his mom and walked away. When Liam showed me the ball with his signature, I explained that usually people want the baseball player to sign the ball, not just borrow the baseball player’s knee. He wanted to know why. So I explained he’s a very famous baseball player and people like to have baseball players sign balls as a special gift. He was completely perplexed by the concept of wanting someone else’s autograph, but decided to go along with the idea. So off he went…back to Andy Pettitte to ask him to also sign his ball….which Andy graciously did. And after he came back to show me the ball with two signatures….Liam went back over to Andy one more time to give him a big kiss on the cheek which Andy welcomed from the little boy who didn’t exactly follow the flow of the way such situations normally unfold. And as Andy and the Yankees crew were leaving, yelled out…”Bye! Thanks for coming!”

Ah Liam…you are one of a kind.