I'm sitting in bed next to Liam who is ripping open the cards that have been sent to us with get well wishes. He loves to open cards. He loves to "read" the cards to me and tell me what's on them...especially any that have stars (which immediately make him break out into a round of Twinkle Twinkle Little Star), butterflies (he has a new move - fluttering his fingers like a butterfly), flowers (he tries to smell each and every flower and then insists that I do too) or pictures of children (every time he sees a baby, he thinks it's Ella). Here's what's still so surreal to me, it feels like we're having a "normal" night...Liam ate dinner, we had a nice evening together, and now he's playing with a felt dinosaur game that has totally captured his attention. This is normal, right? But, my son now has half a head of hair that looks like a really bad Donald Trump comb over, there are two tubes snaking out from underneath his shirt that are delivering powerful drugs to him, and then there's the almost rhythmic sound of the two pumps that are next to us on the bed. They almost sound peaceful. How could that be? He has been absolutely larious tonight - He has made us laugh out loud and even tried to run around...until he remembered he doesn't have the same freedom of movement that he used to have.
The beginning of the second round of chemo got off to an early start (Liam wasn't happy with me when I had to wake him up to take him to the hospital) and a slow start as we waited for a wet diaper which is needed before chemo can commence. Before Liam's illness, I didn't know much about chemotherapy. I thought is was something a person received for an hour or two via IV and then was done. Liam's chemo is a continuous 72-hour process. 72 hours of powerful drugs that basically take him to the brink of a word I can't even type in order to make him better. And, for every drug he receives as part of his chemotherapy, there are other drugs he receives to counteract the side effects. One drug can cause permanent bladder damage, so another drug is given to prevent it from happening. Another drug to counteract another potential side effect. The list goes on and on. And when Ursula or Dr. Kushner rattle off the names of the medicines, I try really hard to remember a phoenetic way to say them, but they're so long and have such an unnatural spelling that I'm not sure I'll ever be able to remember the names. All I know is that one is red like fruit punch but it's that one that is the one everyone calls the "bad" one. I can smell the chemicals through the pores of his skin. He has a slightly metallic smell. There are so many chemicals coursing through his little body that I have to wear gloves to protect myself when changing his diaper. He hates it when I wear gloves and cries, "Mommy - No Gloves, No Water, No Wipes...please, Mommy, No Gloves, No Water, No Wipes," when changing him. He associates water and wipes with pain.
There are 30+ beds in the Day Hospital and all are filled. The tops of the rooms are open and the ceiling of the area where the rooms are is glass so you can look up and see daylight. Liam thought it was pretty cool that you could see clouds and tall buildings. Liam, true to form, wanted n-o-t-h-i-n-g to do with his room. From 7:30 on we were only in the room to do diaper changes. We began the day making a "pizza" (melted cheese on top of a tortilla) for breakfast, followed by a trip to the fish tank to visit Nemo and his dad. And then we had to kill time waiting for the playroom to open at 8:30. Once the playroom opened, Liam's day truly began. He loves being in the giant playroom. He loves watching other kids, he loves the energy, loves the dizzying array of activities to do. And for my part, I'm amazed at just how much fun he's having in the midst of fighting a battle.
A few observations to share:
- Liam surprised me by taking over the responsibilty of pushing his IV pole when he's walking. He now realizes that he's attached to it, or maybe that it's attached to him. It made me so proud as a parent to see him make this discovery, and at the same time incredibly sad that he has to make such a discovery.
- His hair is almost all gone except for a fine layer that reminds me of the the tiny feathers on birds that are right next to their skin. Liam thinks it's hilarious to pull out what remaining hair he has and hand it to whoever is closest. If you'd like a lock of Liam's hair, ask now. It's going fast.
- He has never done this before, but he has become very in tune with emotions. He loves to tell us that he's really, really happy and he tells us frequently.
- He loves to talk to Ella on the phone and hear her voice. He loves to sing Twinkle Twinkle Star to her. According to Larry, she hums along as Liam is singing. One of his most frequent requests is to see pictures of Ella. When he's really upset, it's the one thing that makes him calm. He loves looking and when he's looking at her, I wonder what he's thinking about.
- He has a girlfriend, Jessie. She and her family are here from NC for treatment. (www.caringbridge.org, click on "visit a website," type in jessiegarren...with no space between the first and last name. Jessie and Liam made an instant connection when they met when they were both in patient. Now both are undergoing out patient treatment. We love Jessie. Liam loves to hold Jessie's brother's hand. Whenever Liam sees Jessie's brother, he insists that he holds his hand and participate in whatever activity he's doing. Last week they watched the movie "Cars" together.
- Glue is a new fascination...especially when it dries on his hands and he can peel it off.
- I can feel the anticipation of each parent who is called to walk through the orange door to meet with the doctors. When we're called to go through the orange door, I feel like my knees are going to buckle.
- You have a weird bond with the people who you were "in patient" with who are now "out patient." We're the same "class" hoping that we all graduate together.
- The Caillou factor. About three months ago, Liam switched his allegiance from Kipper to Caillou. We now know that three months ago the cancer was taking over his body. Caillou is bald. Liam is now bald. Is there a connection? In one Caillou episode, he goes to visit a friend who lives in a high rise apartment building. The friend lives on the 17th floor. The apartment we're staying at now is on the 17th floor. The next apartment we've rented beginning in April is on the...you guressed it...17th floor.
- The kindness of friends and strangers has been completely overwhelming. One act of kindness, whether it's bringing diapers to the hospital, dropping off cookies to the nurses on Liam's behalf, or sending us a "we're thinking about you" message gives us a shot of strength to keep going.