Sunday Night, June 24th
So here we are. On the eve of the beginning of the next phase of treatment. We have to be at the hospital at 7:30 a.m. to start our first day of 3F8 treatment. Last Tuesday’s meeting with Dr. Kushner effectively closed the first book in our trilogy. The initial treatment - five rounds of chemo and surgery - is called induction. I’ve often wondered if we’re being inducted into some Cancer Club that we forgot we filled out an application to join. Wait – this isn’t the club I was hoping to get in….I was looking for the Average Family Club. The second book in our journey will primarily be 3F8 treatment, with a sidebar story on radiation and another on the likely surgery to deal with the scar tissue on Prince Liam’s ureter.
3F8s have been the carrot at the end of the chemo and surgery stick that we’ve been working towards since February 28th. It’s been the thing I’ve been eager to get Liam to in terms of his treatment, but it’s also the thing I’ve been dreading. Listening to children enduring the pain associated with 3F8 is how I came up with the description of Little Shop of Horrors for the Day Hospital. The screams are so painful to hear that many days it would make me cry. Whenever Liam would ask me why a child was screaming, I’d give him a myriad of excuses…usually that the child has a stinky diaper and doesn’t want to get it changed. (Ever since an extremely painful bout of diaper rash after round 1 of chemo, Liam has been reticent to have his diaper changed.) Now all of the sudden we’re very likely going to be one of those children doing the screaming. How in the world am I going to explain this one to Liam the Brave and Inquisitive? I haven’t come up with an explanation for pain so intense that even a pain medication three-times as potent at morphine can’t alleviate. It’s hard to stay focused and in the moment with this looming ahead.
The transition from Book I to II has been jarring and abrupt. There was no climax at the end of Book I. The close to book I, our meeting with Dr. Kushner, was very matter-of-fact, all while trying to entertain Liam in the non-kid-friendly office/exam room we were in. It wasn’t a “Hey – This is great – You guys made it through five rounds of chemo and a 10+ hour surgery and dodged all the pitfalls – Congratulations!” Don’t get me wrong – it was a positive meeting but there were no champagne corks being popped and bubbly poured. Now, of course, in the whole scheme of things we’ve cleared a lot of hurdles…some heavy-duty major hurdles…but we still have hurdles in front of us to clear. The main one being time. One of the most difficult things about our meeting with Dr. Kushner was trying to entertain Liam. Our Prince was eager to be out and about and exploring…not in an office/exam room. After playing with everything that had a button, trying to remove the thumbtacks from the cork board, and looking for anything he could do to amuse himself…he discovered the excitement of an examination stool with wheels. The next thing we knew, Liam was pushing the stool and running up and down the hallway outside the room we were meeting. Back and forth Liam went past the room. Here we were talking about his life when all he wanted to do was enjoy one of life’s simple pleasures.
And then the meeting was over. And Larry went to work. And I stayed at the hospital with Liam for a dose of antibiotics. From the hospital, I took Liam with me to a hotel to set up for a two-day work event. And that was it. That was the end of chemo. I can throw away the rolls of paper towel and containers to catch throw up that are in every room. I can throw away the chemo diapers that don’t hold anything except a drop of urine. I can get rid of the butt paste. The layers of waterproof sheets on his bed can go. The rubber gloves to protect us mere mortals from chemo-laced urine in Liam’s diapers can take a backseat to cars and trucks. And the bottle after bottle of medicine to treat side effects of chemo can all go. And Nystatin, the medicine that prevents mouth sores that happen during chemo is also not needed any more. But even though I know they all can go, I haven’t done it yet. Maybe it’s the fear of the unknown that has prevented me. And it’s hard to comprehend what this new phase of treatment will look like. I finally just a handle on chemo, now I need to learn a whole new way of life.
On the eve of a new phase of our journey I’m scared and sad thinking about the pain Liam will endure. I would do anything to go through the pain instead of him. I would do anything to relieve his discomfort….anything. As numb as I sometimes feel about what’s going on, Liam continues to be such an inquisitive, perceptive little boy. We’ve had to do several of the last dressing changes. They’re still not pleasant, but they’re not the screaming fits they used to be. And at the end of every one as Larry is literally drenched with sweat from stress, Liam says…unsolicited, “Thank You Daddy. Thank you Daddy.” We don’t know why he says it. He just does. But that’s Liam. He’s always more concerned about others. And today when I was driving in the car with Liam to pick up his new food fad, tater tots, he was singing “Oh Where Oh Where Has My Little Dog Gone” in his sweet voice just as happy as could be. He’s back to making up words to songs. He’s back to joking around. He’s still very skinny and eating isn’t something that comes easily, but he’s eating. His little face is still my sweet, adorable little boy’s face even without eyebrows, eyelashes or hair. But I do miss seeing his long, luxurious eyelashes.