Elliot stopped watching a movie for a while and has eaten his lunch. I’m so glad he is eating well, but I am also calculating how hard it will be to wash the car seat if he’s sick on the way home later. It’s important to choose food colour wisely.
He really is handling this all so well. He amazes us. But then again, we amaze us too. We are really coping with this well. We are past the terrified-beyond-belief point, and have settled into nervous acceptance. People say cancer makes you stronger. I guess so. But really, what choice do we have? I can’t exactly just curl up in bed under a heavy blanket and come out in 6 months, can I? (Oh how I wish sometimes I could…The doctor gave me some anxiety meds to help me “cope” but I never used them. I really wish there was a “six months under heavy blanket” prescription. By the way, I never thought I would be someone who said “meds”. And now there you go, I’ve gone and written it. Probably all those omega 3s from the salmon sandwiches making my brain all light and fuzzy.)
The thing we didn’t know, going into this, is that Elliot will continue to be a real boy, and that we will continue to have to be real parents. He’s not acting like a patient. It’s funny, at the beginning he got a lot of get well soon cards. It didn’t make sense to him. He feels fine, always has. Only when he has the nausea, which is only for a few days after the more intense chemo treatments, but even then he still manages to stay cheerful. To him this whole cancer thing has been very intangible. He never felt wrong even before diagnosis, and for that I suppose we should be eternally grateful. We got lucky to have found it when we did. I noticed the lump sticking out of the side of his belly after his bath one morning, and since I’m a worrier, I brought him to the pediatrician the same day. Felt foolish. Actually said to her when we arrived that I was probably wasting her time. But the look on her face when she examined him… Fast forward 8 months and here were are. Lump gone. Kidney it grew on too. Chemo successfully destroying all the baby lumps that had grown all over his lungs. Radiation therapy having zapped the empty space where the main tumour used to be to make sure no little stray cells decide to make trouble.
But other than the fact that our child has cancer (there’s a great opening line), our life goes on like everyone else, with the same issues as everyone else. We have jobs and school and chores and all the millions of things normal parents juggle every day. We try to make time for the two older kids so they don’t feel abandoned, we try to make time for each other so that our relationship thrives. By that I mean of course that we all watch tv together. Ok we also have loud indulgent family suppers together, not every night since our family of 5 not surprisingly has 5 different schedules. But we are surviving this together, all of us holding on to the fact that medicine is probably going to keep us together for quite a while, not really needing to talk about how close to the precipice we have come.
As I sit here in the chemo ward, I think about my two older boys and feel a wave of motherly love combined with a sudden desire to text the oldest and ask if he really did remember to take the garbage out this morning when he left. Parenting is all about balance.
Suddenly the doctor comes in to check on us. All the parents drop what they’re doing and sit up. The Rude Mom even stands (such a newbie! Never appear so desperate in front of the doctor! It’s like dating, you have to make them come to you). Martin puts his phone down. It’s Dr. Latour, and she scares the crap out of me. I spend my time whenever she’s around half terrified and half furious. I have no valid reason for this, she is actually much shorter than me, I could take her. Ha ha. No, the reason I am angry and scared is because she was The One. It was her who gave us to official diagnosis. “Your son has cancer. It is very advanced. His odds are 50%. But we will cure him.”
I have replayed that conversation over and over in my mind so many times it’s like an old movie now. I’ve tried to logic my way through it. How could she say the odds are 50% but in the same conversation, say “we will cure him”. Those statements don’t go together. Did she mean that statistics say 50%, but their treatment will work better than that? Or did she mean we will “try” to cure him? But she said it twice that night. “We will cure him”.
The conversation goes around and around in my head like a merry go round, making me dizzy. “Odds are 50%. We will cure him. 50%. Cure.”
I would ask her for clarification if I wasn’t so damn scared of her. Also it is unlikely she would remember our exact conversation of eight months ago word for word as she probably hasn’t been replaying it over and over in her head like a maniac.
My fear and anger do not come from anything about her personality, or her treatment of Elliot, or how she treats us. In fact she is very kind and patient. She obviously really cares, when Elliot told her he wanted Santa to bring him a toy hospital for Christmas she sighed and hugged him.
It’s because it was her who gave us the bad news, and because of that every time I see her my body and soul go back to that moment, and I am shaking with fear and fury. Inside only, of course, on the outside I act just like all the other moms, which is that I try to make sure she likes my child and me best.
She does the rounds, stopping at each bedside and talking with the parents, going to Rude Mom last (See? Too desperate.) She doesn’t really stay long, each of us had a private meeting with her before our chemo dose today, where our child was thoroughly checked over and our questions answered, the treatment plan discussed. She’s just here now to make sure everything is running smoothly.
When she checked Elliot earlier I felt a wave of fear overtake me as usual when he was lying on his back on the examining table, shirt off, and she started to feel around his belly. She always starts on the left side, where he still has a kidney, and presses into his stomach like she’s kneading bread. I wonder if she realizes how much the parents are holding their breath during those moments. Waiting for her to be done, watching to see if she is acting normal or concerned. Does she realize how we watch her face for the slightest hint that something is wrong? To her, this is routine, she could be thinking of something completely different while examining him, and we are on the edge of our chairs, holding our breaths. She could suddenly remember that she forgot to return her library books, and a look of concern could flash momentarily across her face, and we would die. I’ve already died a hundred deaths that way.
There’s another doctor we see sometimes, Dr Winters, who is one of the head honchos. He is older than Dr. Latour, and is always smiling and relaxed. I wonder how you get years of experience in pediatric oncology and still manage to not drown every now and then. They must see some awful things. They live it too; they all, without a doubt, want to cure our kids. The nurses too. How do they keep smiling? Then again, how do I?
Dr. Winters always has a good expression on his face while he’s examining Elliot. By that I mean, if you happen to be a parent sitting there analyzing facial expressions with the hope of determining whether your child will live, he fills you with hope. He’s just always so casual and relaxed around us. I fear he’s like that with everyone. I would like to believe it’s because he is so pleased with how well Elliot is responding to the treatment and is completely unconcerned about his recovery, but there is a part of me that believes this is just his normal personality. He could actually be telling you multiple new tumours have been discovered in your child’s entire body from the tip of his nose to the smallest toe, and you would smile dazedly and think everything is great.
It was Dr. Winters who gave us the results of the second CT scan, the one done after 6 weeks of chemo. He started by saying it was good news, as soon as we entered the room, before we even sat down. That set the scene. We hardly listened to anything after that. At one point I remember asking if it meant that a second operation on any lung tumours was definitely ruled out, and he casually scrolled the mouse while gazing at the CT images on the computer and said “hmmm… well… I can’t completely rule out the possibility of a second operation…” He said it in the same cheerful, casual way he always sounds… Like, he could have been looking over the dinner menu and said “hmmm… I can’t completely rule out the possibility of dessert…”
So ok I guess I have trust issues. I don’t completely trust the doctors. I analyze everything they say, every way they act. And yet they are truly amazing people. Dr. Latour, for example, was the one who met us and admitted Elliot to the hospital pediatric oncology floor (It’s a whole FLOOR), eight months ago, before we knew exactly what this was Elliot had in his abdomen. She greeted us at 8:30am with another doctor, Dr. Nelson. They both examined Elliot, discussed with us what they would do that day (blood tests, CT scan for which they would have to put him to sleep, results later in the day).
We saw them come and go, passing in the hallway outside our room throughout the day, as our worry slowly increased and we started to wake up to the fact that we were possibly in this for the long term… We still were so innocent then. I saw Dr. Nelson running down the hall late in the afternoon toward another child’s room. I remember thinking, “oh, he looks worried, and he’s running. Something serious is happening! I hope nobody’s kid is desperately sick!” Not realizing how close my own child was to needing a doctor to run to his room…
They had a few emergencies during the afternoon, and we were only finally summoned to a private meeting room with him and Dr. Latour at 8:30pm, to be given the results of the CT scan. They asked us to come alone, and they arranged for a nurse to sit with Elliot. That’s when my heart started stopping.
I won’t go over the details, it is still too hard. But my point was, notice the time frame. Those two doctors were already there before we arrived at 8:30am, they were still there to give us the results patiently at 8:30pm… and they didn’t leave even after that. Dr. Latour stopped by our room some time later (the clock actually stopped for me at 8:30pm that night, so I have no idea how much later it was… I can tell you roughly how many tears later it was, and how many punch the wall moments later it was…) Their dedication to their job, and to curing our kids, is remarkable.
So trust is what I have to do. It’s all I have. She said they would cure him, and it seems to be happening. It’s late, the house is quiet again, and time to sleep. More later.