November, 2010

Cars & Scars: Little Dexter’s Story

Dexter Spencer is a two year old boy born with cerebral palsy and recently diagnosed with liver cancer. Dexter is Dan and Lisa’s only child, but he requires the amount of care and finances of several chil-dren. Because Dexter is so young, he doesn’t understand his situation at all. He doesn’t know he’s sick. Even though his parents believe Dexter’s childlike ignorance has helped him fight the disease, they also consider how strange life must seem through his eyes. “From his knowledge, you’re born and you’re constantly poked and prodded and people test you, and you’ve got a bunch of strangers who stare over your bedside,” says Lisa. “I can’t imagine what it’s like for him. When they do chemo treatment they have to put on these scary suits that make them look like astronauts or scientists.” When Dexter is not at the Hospital for Sick Children getting treatment, his parents say he still experiences hospital nightmares and he’ll wake up at night screaming ‘No needles!‘ Dan and Lisa gravely admit how heartbroken they feel after operations when Dexter screams, hits and doesn’t want to have anything to do with them. Dexter becomes attached to blankets and toys that make him comfortable and needs extra love, affection and cuddling-time. At the hospital, Dexter’s parents try to make him as comfortable as possible. They bring his favou-rite movies and toy cars. Along with the movie Cars, Dexter has baskets full of dinky cars which he usually keeps close and on hand at all times. Sick Kids does its best to make the hospital child-friendly and the staff use special terminology, such as ‘arm hugs‘ for blood pressure. For Dexter, the sound of ‘beeping’ has dual meanings. In his vocabulary, the sound is contextual and is either the noise his cars mimic when he’s playing or it’s referring to his IV stand, who Dexter has nicknamed ‘Beep Beep’. Dexter’s IV stand has become his friend and Dan and Lisa try their hardest to make Dexter feel as comfortable as possible during his battle cancer.

The Scars: (near to the shoulder): the port, that’s where the chemotherapy goes into and disperses around the rest of the body (stomach): from the liver tumor that they removed, they had to take 50% of the liver (stomach): the g-tube is the tube that goes in his stomach, and that’s where all his food goes in to, so he can eat without having to take it orally

Lisa:

”The bravery beads are, well, it’s a program put on by the women’s auxilary club at Sick Kids. It’s for any-one with a potentially terminal or long term diagnoses and each bead represents a procedure, or any sort of situation where bravery was required.”

Dan (talking to Dexter at the hospital and pointing to his beads):

“See this one right here, this is for chemo; see this one? This one’s for tests, all the stars are for tests. See this one? This one’s for blood work. This is a wow bead, it’s because a nurse changed your diaper and said wow! This one’s blood work, so yeah. I don’t remember the other ones...”

Lisa:

“When he’s in the hospital we try and bring him his movies. He loves the movie Cars. He takes dinky cars, he loves that kind of stuff. He shows them off to all the nurses and doctors.”

Dan:

“He’s not into stuffed animals or stickers. The nurses and doctors keep trying to give him stickers and he doesn’t even care about them, it’s kind of funny.”

“He enjoys hockey. I mean, he’s not really into yet but he’ll sit and watch it and get excited when there’s goals and stuff. I think just the time we get to spend together during the hockey game, father and son is something he looks forward to. He just claps, whoever scores and he doesn’t get that he’s supposed to be a Leafs fan, but that’s alright.”

Lisa:

“Beep Beep is his IV stand and machine. Whether it’s his feeding tube, or whether it’s dispensing medi-cation, or his chemotherapy, he knows that any machine on a stand is Beep Beep because when it’s clogged or when it’s done, empty, whatever, it beeps.”

“He started emulating it at the hospital, when it beeps, and the nurse comes in and goes, ‘oh is it beep-ing?’ He repeated it as his speech came along and it just makes it more friendly for him to know it as Beep Beep. We’ve tried to make it seem normal, so it’s his friend. He recognizes it whenever we go to the hospital ‘oh okay it’s Beep Beep, I have to sit with Beep Beep, and Beep Beep’s always there for me’. We try to personify it as much as we can.”

“When we brought the IV stand home we’re all excited and we pulled it out of the box and went ‘guess who we brought home, BEEP BEEP!’ He was so excited.”

Lisa:

“We are blessed in the sense because he doesn’t understand what’s going on but I can’t imagine what it’s like for him. Like when they do chemo treatment they have to put on these scary suits that make them look like astronauts or scientists and I can only imagine how strange it is for someone to approach you with plastic masks and big gowns and gloves.”

“He does experience hospital nightmares, even when we’re at home he’ll wake up screaming ‘no needles!’ He jerks at any touch, he needs a lot of comforting, a lot of cuddling. But he doesn’t know any better. He doesn’t know that he is sick. From his knowledge, you’re born and you’re constantly poked and prodded and people test you, and you’ve got a bunch of strangers who stare over your bedside. He doesn’t know any better, and that’s why we try and make it seem as normal as possible, Daniel I. We don’t like him to see our emotions, so when we break down we do it separate from his bedside. We try to make him seem like a normal child and I think that’s part of the reason he’s fighting it so well.”

“He does hate us after procedures; he bites, he hits, he screams, he doesn’t want to have anything to do with us, but he doesn’t know that it’s for the better. It is hard for a parent to have your child attack you, and not want to be near you and be fearful of you, but we know it’s for his own good.”

Dan:

“I think it’s better for him and I think it’s better for us too. Like a child that can’t really communicate how they’re feeling, with words, is probably a lot easier on parents. If you’re child is five or six years old, they can tell you that they hate you, that they never want to see you again, stuff like that, that they don’t love you. Especially when you’re holding them down and helping the doctors give injections or anything that they don’t like. With him not being able to communicate that, although you can see it in his face and in his eyes, at least you don’t have to hear those words.”

Lisa:

“Here come the waterworks. I did everything right for my pregnancy. I didn’t have caffeine, or smoke, I didn’t drink, I was a vegetarian, I did yoga. They found no medical explanation as to why Dexter was born with conditions that he has.”

“When I was in the hospital, being taken care of, for his early pregnancy, I was surrounded by parents who had their child early due to their own convictions, fetal alcohol syndrome, or babies who are already addicted to drugs, some problems that people were aware would arise, and they had lots of time to deal with it. Unfortunately, for Dan and I, it was completely a surprise. We had a social worker to walk us through all of our emotions, and it was quite normal, but we felt very guilty because we mourned our child in a sense. “

“You kind of start resenting your child a bit, because they’re not normal, and they robbed you of that hap-piness, and I’d hate to say you’re stuck with a child that’s sick but it is something that you have to get used to. And you’re not thinking right, you’re emotionally jumbled. So yeah we went through the stages, mourning as if we almost lost a child. As much as we love Dexter, and we wouldn’t change him for the world, we still wish we had a normal pregnancy and a normal life, where our son could be walking right now, and be normal and not have so many medical problems. It’s hard.”

Dan:

”With having a child that’s sick, right from birth, I mean it’s non-stop doctor’s appointments. We have physiotherapy, occupational therapy, speech therapy. We don’t really get a lot of time to enjoy him as a child because you’re constantly at home, having to do what the therapists want you to do, to help him succeed in life.”

“It’s definitely changed our lives. We don’t really get to enjoy him as other parents enjoy their children, so in that aspect it’s different, for sure.”

Lisa (on finding out about Dexter having cancer):

“We were prepared for it in a sense, logically. Emotionally it’s completely different, so when we found out, they actually came in, we were sharing a room with three other children, and they came in and asked to speak with us alone. We knew then that there was something wrong.”

“It’s kind of hard to explain, but you feel like you’re in a daze; it doesn’t feel real; I had to get some fresh air. I was walking along the hallways and just felt like a ghost, like I was moving slow and everyone was blurry. I don’t know how to explain it but it’s like a movie scene. Yeah, it’s surreal and it takes a long time before you even acknowledge the fact that it did happen and this is something you’re going to have to deal with, you don’t have a choice.”

Lisa:

“I don’t know where I stand spiritually now. I have days where I feel that Dexter experiences miracles and that he’s doing well when we didn’t think he would, but I don’t know if that’s divine intervention, simply his own strength, or a combination of medical practices. I battle with it everyday.”

”A lot of people say it happens for a reason and a special needs child are born to special parents. I don’t really like that, I find that there should been the need for special needs children to begin with [laughs]. I know that Dan and I are strong enough to deal with it, but any parent would be, in that situation. Any parent would be.”

Dan:

“I haven’t made sense of it yet. At all. You just try and put it out of your mind and forget about it because it just doesn’t make sense why a child would have to go through all that pain.”

“I was religious but now I don’t know where I stand. Definitely questioning whether there is anything else out there, creator wise. Pissed off, is definitely where I stand, with that whole aspect of Christianity.”

Lisa:

“When he was first born, we had no idea how to deal with it. All the nursing staff and staff told us that in terms of his progression health wise, he would always take three steps forward, and one step back. So he would have a couple good days, and then something bad would happen. And that was true. He would have a couple days where he was off the ventilator, he could breathe on his own, but then he got an infection and would have to go on antibiotics. So we learnt how to deal with it one day at a time and not to dwell on all the little bumps in the road.”

“I think that was kind of a way for preparing us for the worst, because cancer is obviously much harder to deal with… it’s the C word. You have to take it one day at a time.”

Lisa:

“You’re my inspiration buddy. You’ve been through so much, and you still smile and you fight your way through it. And, because of you, I realize that everything I was stressed out and dwelling on, pales in comparison to what could possibly happen and it makes me realize that I should take advantage of every chance I get and, you know, Carpe Diem, because you’re doing so well and you don’t know any better. You’re innocent, you’re beautiful, and you’re my hero.”

Dan:

“Dexter’s our pride and joy. I love him and he’s strong. He’s an inspiration to me and he makes me want to keep on and fighting harder.”

March, 2011

Lisa:

“Dexter’s hair is back. The strength in his legs is coming back, so he’ll walk along furniture. He’s more motivated to walk and he’ll use his walker more often. He’s more energetic, he’s happier, more talk-ative. Obviously the doctor’s appointments are few and far between now. He’s eating slightly better, he still needs his g-tube but we’re slowly weaning him off of that. He hasn’t had diarrhea, he hasn’t had fevers, he hasn’t been puking as much. Emotionally though, he’s still upset, he still cries ‘no needles’ when the stranger comes to the door, he still works himself up into a puking frenzy. But for the most part he’s back to his normal self. We’re now worried more about the cerebral palsy end of his medical journey.

The magic word is ‘remission’ and that doesn’t mean anything other than to say he’s cancer free right now. It could return, they don’t know, so every month we go back to Sick Kids and do blood tests, just to make sure. They check his nutrition levels, protein levels just to see if the cancer is returning or if he needs more medication and just to make sure he’s feeling okay. He still has the port that runs to his heart, so if he gets any infection it could be very dangerous for him. He will have to have surgery to get the port removed. Not a major surgery, but a surgery nonetheless and that will probably happen within the next couple months. They just wanted to see a steady monthly blood test of him showing he’s cancer free. He could relapse and he could get cancer again, which is entirely possible, but right now, as in today and the last month and a half… he’s completely cancer-free.”

Story by Leah Myers http://leahmyersphotojournalism.blogspot.com/