Every day I had to read, I think it was like an hour or something – that was my mom’s rule. And then we would always watch TV at the same time every day and we would always go to the Animal Planet and we would watch this show called Meerkat Manor. Really funny! So that kind of cheered me up.
Henry, age 12
Playing with Child Life
When I was having the surgeries I could just come out and play. I forget her name but she would play with the ball and we would play catch!
Eric, age 8
Surprise birthday party
Mom: Last time he had his birthday in the hospital. Remember? It was during your birthday so you got lots of special treatment!
Eric: They did a surprise birthday party! It was my family and people at the hospital. They gave me a game…I forget what it was called…oh, it was Uno Spin! Having my birthday in the hospital was fun.
Eric, age 8
I got all my homework done on the way
I missed a lot of school because of having to come here a lot for urology, but missing school is kind of okay, because it’s four classes in a day and each class is an hour to two hours long, so it’s kind of fun missing school! I would always get the homework the night before and do it when I had the day off, because you have to wait a lot – like on the car ride if you live far away, or just in the waiting room. So I got all my homework done on the way basically.
Gabriella, age 12
Gabriella, age 12
Such a constant in my life
I think because in my case I had been coming to the hospital literally since the day I was born, even though I would be sad about coming to the hospital, I knew that nothing terrible would come of it. It was such a constant in my life that there was never a transition… In second grade, I remember, it was show and tell, and I had to miss it because I had a doctor’s appointment. And I remember being so angry and I was just like, “Why can’t I go? None of my other friends have to miss school as much as I do!” And my dad was like, “You have to, it’s just something you have to accept. Maybe you have to miss out on little things like show and tell but just…you have to.” And I remember that day specifically because I was so upset. I think he phrased it like, “You miss one show and tell and then you can go to school for the rest of the week, or you don’t go to this doctor’s appointment and you take the chance of being sick for weeks.” It was kind of a nice perspective, I guess.
Elizabeth, age 16
Rollercoaster ride
They seem to come in waves, so I will have a lot of appointments in two weeks, and then I won’t have any for a while, and then I’ll go a lot again. So it’s crazy for a period of time, missing a lot of school, and we go and they want to order tests, and it will be crazy. Then everything will sort of calm down, and then it will start back up.
I never know what’s going to happen when I wake up in the morning, because I might feel wonderful, I might be going to the hospital, I might have a migraine, I might be in a vomiting cycle – so I never know what’s going to happen from day to day. It’s sort of always in the back of my mind, but I just kind of plan what I need to do, and if I need to take the day off from school or reschedule appointments or whatever then we just do that.
Jenna, age 16
Difficult to choose
It’s tough because I have seen different doctors in the same specialty who have different views and different plans about what we should do, and some have experience with the mito and some don’t. Some are looking at one piece of it. So it’s difficult to choose who to see and who you think knows what they are talking about. It’s very difficult and sort of more difficult because I am not 18. Sometimes I’ll want to do one thing and my mom or my family would want me to do the other. So it’s sort of difficult and frustrating when we don’t see eye to eye.
Jenna, age 16
It wasn’t bad at all
The food at Children’s Hospital was really good, so I got good food. They had this children’s room and it had a bunch of books and movies, so I got to watch movies, so it wasn’t really boring. And they had a clown and he came and visited me, and they had arts and crafts so you could do stuff. It wasn’t bad at all… I have a lot of friends that don’t trust their doctors and I just say trust them. Because they went to medical school, they know what’s going on, and you know, I don’t think they’re going to be quacks! They got their degree and they know what they’re talking about, so listen to them, don’t be afraid of them, and you know, just be open. That’s what I think.
Alexa, age 16
Ellie, age 8
Making it as fun as we can
Dad: We make it fun, as fun as we can. What do we do?
Ellie: Go to the gift shop.
Dad: Go to the gift shop, but when we first come in what do we do?
Ellie: We usually get the bagel and the strawberry milk.
Dad: If they have it. Today they didn’t have the strawberry milk.
Ellie: But we usually get it. And my Dad gets coffee. I get chocolate milk if I can’t get strawberry milk.
Dad: And if we have to stay here for lunch time what do we get? Where do we go for lunch?
Ellie: I forget the name…
Dad: Longwood Grille. And she gets her favorite lunch.
Ellie: Calamari!
Ellie, age 8, and father
The why is important to me
My doctor can break things down in layman’s terms like no other. So if I say, “Why is this happening to me?” I suppose some doctors are like, “Why do you need to know this? I’m just telling you it’s happening.” With my doctor, he’ll explain everything from A to Z, and now I’m assured. I understand what’s going on. Now in my head I can say, “Well geez, I understand why I need to drink more water!” It shows processes a little bit. That’s definitely helpful. I guess everyone’s different, but the why is important to me. Otherwise it doesn’t sink in… It’s like anything in life. When things are bad, it’s contentious. When things are good it’s like, “You’re the best doctor in the world!” But I’m here because I think the doctors at Children’s Hospital have had nothing but the best intentions in the way that they’ve gone about my health. I don’t think I’ve ever had a bad relationship with any of them. Some of our personalities might not mix as well…that’s why I think I’ve been lucky recently, because it does work out with my doctor now.
Sam, age 32
Know your patients
I think doctors need to have a better bedside manner. I know that’s a struggle always in the doctor community, and I know every patient is different, so I guess it’s getting the chance to know your patients. I know patients who like doctors who are strictly business and see you later! I like a doctor to put on a show for me a little bit, make me feel good. So I think that’s different for each person. The doctor needs to get to know the person, or at least have someone get to know them and let them know how they are.
Sam, age 32