Gracie's Bell Ringing
Gracie is just getting finished with 5th grade. It’s June 2019, the week before Oncology camp, and about two weeks away from her bell ringing. The significance of this, meaning that she is done with cancer treatment. Sitting with Gracie and Jeanet (Gracie’s Mom) we discuss everything leading up to this point.
Jeanet: Total it’s been 808 days. Her treatment, she has been fighting cancer for over two years.
Gracie: Wait 808 days? I thought it was 108. I definitely told my softball coach wrong then.
Jeanet: And you stop and think as an adult what is something I have done for 808 days? That’s 1/5 of her life so far.
Starting from the beginning…
Meryl: Do you remember what you were thinking when you were feeling sick? Like when they were thinking it was the flu and you kept having to come in. What was that experience like for you? And how did it feel when they finally told you it was cancer? Did you kind of have that as a thought in the back of your mind?
Gracie: Well at first we thought I had mono. My brother had just had mono and he had been feeling really weak and had fevers and they couldn’t figure out what was wrong with him at first either. But every time my mom would take me back the doctors would say, “oh you’re looking paler” or “you look more flushed.” But they didn’t do blood work until the last day. But even on that day we were still thinking it was mono, not cancer.
Jeanet: Yes like she said, she had been feeling sick for a couple months before and I was the type of mom that unless you are puking or bleeding, give it 24 hours and let’s see how you feel. We don’t go to the doctor that often. She would really only see her pediatrician on her annual visits because if she needed something urgent we would just go to the clinic. starting in February we had been in there multiple times and every time we saw a different doctor. At first it was, “oh she has influenza,” and “well, no maybe it’s strep,” and then they thought it was a form of pink eye, or “it’s just a virus and you just need to give it some time.”
Gracie: Then I started getting double vision.
Jeanet: Yes, she started getting double vision, and was struggling with breathing. We went on a weekend trip to Kansas City. We were going to a hockey game and had parked a little ways away in the parking lot and she looked at me and said “Mommy I don’t think I can make it that far” I said, “wait what do you mean?” And she just told me “it hurts.” Monday morning came and I called and made an appointment; the earliest they could get us in was Wednesday.
Gracie: I remember when we were down there watching the hockey, I couldn’t see anything. Because I was trying to look through the net. But I was seeing double so I would see the net and then I couldn’t focus on the hockey players. So I would just cross my eyes because I could kind of see better that way. Or my mom would give me her reading glasses because sometimes that would help. Or I would just have to cover one eye.
Jeanet: I mean you could tell something was clearly wrong. Her color was all off. We made this appointment so we could see the same doctor and nurse. The nurse told us I think you look worse than the last time I saw you. And I told her “I want a blood test done, something is clearly wrong and we aren’t figuring it out.” They weren’t cold and flu symptoms and they kept getting worse. They did the blood test and screening at the office. The doctor came back in the room and said I’ve talked to Dr Roakes. You guys head on down to his office and they will get you some blood products. I remember him saying something about bone marrow…and I turned around and just looked at him straight in the face and said “wait what?” He said just go down there and they will help you. So he knew when we left, but he didn’t want to tell us. He didn’t want to let us know before we would have to drive over to Blank. Wanted us to be able to collect our thoughts.
We get to Blank ER, I call my husband to let him know we’ve headed down. My mother in law came down. We are waiting in this room, and it seemed like nothing was happening. I just kept thinking okay if she needs blood products let’s get this going. They had child life in talking to her though, and they knew, they knew exactly what they needed to be doing. It was just buying time and getting things in place. Poor Doctor Mallory, someone I’ve never met before walks in and sits down and tells us “she’s got leukemia,” and I don’t know if Gracie knew what that was when she told us. I knew it was a cancer. And so I was like, wait. When you hear a word with cancer it is a lot to wrap your head around. You are just thinking what does this mean, and how, and why.
Gracie: And I was wondering if I was going to die.
Jeanet: Yes, Gracie had a lot of questions about death. My first question was if she was going to lose her hair. Which I don’t know why, it seems kind of stupid. But that was the first thing that came to my mind.
Gracie: Because I had really long blonde hair then.
Jeanet: You just kind of have to sit and absorb. What does this mean going forward? I had just switched to a new job and had only been there 6 weeks when we found this out. I had no idea what this was going to be like. You go through this whole thought process really fast. And of course Gracie when she heard the cancer word, all you hear about with that is people dying and the horrible parts of it. That’s all we had ever been exposed to. Now she has to understand what this means for her, and she is fighting for her life. But at the same time, this is a curable cancer too. In my lifetime it’s gone from basically a death sentence to almost 90% survive. Now I’m not saying the treatments and the process to remission is easy, because it is not. We had to realize you know she is going to go through chemo, and what that really means. And then going back to school. As a parent turning her over to the responsibility of someone else and knowing she is going to a classroom exposed to germs and any sickness or virus will be very serious for her. Your entire thought process is different. We don’t have to be worried about the dust as much in our home anymore, but we do need to worry about all the germs that will be on door handles and light switches and faucets. Those are a big deal. My husband and I both worked and you have to figure out how to juggle all the appointments and everything, and still pay your bills.
Meryl: And I’m assuming you didn’t know all these medical terms ahead of time. Like the average person isn’t an expert when it comes to oncology treatment. You aren’t brought up knowing the steps of how to deal with a leukemia diagnosis.
Jeanet: So, you get a road map, but there are deviations within that roadmap. The first 28-day cycle this is the treatment protocol. And if within the first 28 days you haven’t achieved remission you now have to go on a different road map. She did achieve remission within that time. But you’re talking lots of blood draws, lots of spinal taps, and lots of chemo.
Gracie: Like the first time being there and getting my port accessed without sedation, and it took about an hour to access it. And then the fire alarms went off. So, it was, “well we can either put your needle in now and come back and do this, or wait and put it in later when we get back.” We decided to put the needle in and then we had to go outside and wait to come back in.
Jeanet: She has to get psyched up to put the needle in.
Gracie: Because a lot of time it hurts even with the numbing cream on and one time it got inflamed and irritated. Which is kind of scary.
Jeanet: I remember going to clinic one time, and Gracie was not a happy camper. She was just mad about the situation, mad about life. And I remember telling her “be grateful, be grateful because we have help and you have so many people that care about you.” And it’s hard, it’s hard to stay positive when you are going through that. I remember telling her there are so many people out there rooting for you and we are going to this clinic where people want you to get better and are helping you.
Gracie: And after she said that to me I was a lot different. Because I hadn’t thought about it. I was just like mad at life and thinking, am I going to die? Why me? Not everyone else has to go through this. So then after she said that to me, it put stuff into reality for me. I was just really angry for a while and had a lot of anxiety.
Meryl: And you are going through something that is completely out of your control, but your mom is trying to make it as in your control as she can.
Gracie: Yeah, I think I just told myself “you just have to do it, you’re going to have to do it now or later, but no matter what you are going to have to.”
Jeanet: And I think she just needed to know exactly what was going to happen, that helped. Letting her know before each visit that this is going to be a chemo infusion and port access, or this is going to be a spinal tap. Whatever was on the plan we needed to explain to her in detail. Then we narrowed down which ones gave you the most anxiety, and I think one of them was the port access. So, then we brainstormed about what are some things that can help during this. And she finally came to the conclusion that having music played while she got her port accessed helped. And at first we had to play the song 2 or 3 times.
Gracie: Then we made the goal we should try to get it all done during the playing of one song.
Jeanet: Yes, so it’s doing those kinds of distraction mind tricks. To set those tasks and try to achieve them. She still shows anxiety when there is a lot of things coming at her and it is hard to chunk them down into different parts.
Jeanet: Her treatment all in all was 808 days. Eight. Hundred. Eight. Days. You stop and you think about what have you done for 808 days.
Meryl: Nothing, I don’t think I’ve ever committed to anything for that long.
Jeanet: So, you stop and think, yeah that’s a big snippet of your life. She fought for her life for 808 days.
Meryl: Do you feel like that has matured you? What was it like explaining that to your friends.
Gracie: Well child life came to my school and explained to my classmates what might happen. That I might go through some changes, look different. I might not be here all the time. That I’m sick but that I’ll get better. That they still need to treat me like a normal kid. That I might lose my hair. And that it isn’t okay to make fun of me just cause my hair might be gone, or because I don’t feel well. When the child life lady came to our school, kids would ask her like “how do you get cancer?” And they will just tell them they don’t know. It can happen to anyone. And kids are like “whoa.” And they will talk to them about what blood cells are. So it’s not like the kids fully understand it, but they get a brief explanation. They understand that I’m sick and won’t be there all the time. Now they know that I’m done with treatment. They’ve known since 3rd grade about it.
Jeanet: And I think they have been very welcoming at your school, and very supportive of you. That has been a huge help. To have that structure and understanding and caring.
Gracie: We brought my friends to clinic one day so they could see what it was like. A day in the life of treatment, without having to actually go through it. Just to see what it’s like.
Meryl: What did they say after?
Gracie: Ummm I don’t remember I think my mom would know better.
Jeanet: I think it was just eye opening for them to see the pokes and everything Gracie does on a normal basis. I was talking to a mom in Gracie’s class and she shared with me her father had been diagnosed with cancer. She said unless you have lived it and understand what it means to go to clinic, and get an infusion, and have testing done. You just don’t get it. You don’t get the path that they’re walking down. People are empathetic, but you really don’t know. And she is done with treatment, but she will always be a cancer survivor.
Gracie: A lot of times in the beginning my friends would come over to my house and just hang out and lay in my bed with me because that’s really all that I could do. Was kind of just stay at home because I didn’t feel good.
Jeanet: For a good 6 months.
Gracie: I never felt well. So they would come hang out with me and watch movies, or show me videos on their phones. And just being together. Eating food in bed.
Meryl: Well and 2 years out of the life of an 11-year-old, that’s a big chunk of your life so far. Is there anyone from the hospital, or camp you think you will continue to see after the bell ringing?
Gracie: I think I will still see all the people for like maybe 10-20 years.
Jeanet: Well and she still has to go back monthly for 2 years. And then once every 3 months for, I don’t know. A long time. But yeah, those relationships, when you are out and about and run into those people. It feels like you are seeing your friends and it’s nice to have that relationship and those people.
Gracie: There was a doctor who left the clinic, but he shared he had cancer when he was little and he became an oncologist because of that.
Meryl: Oh, and do you think that has affected what you want to do when you grow up?
Gracie: Um kind of. For a long time I wanted to be a meteorologist, but then I wanted to be a veterinarian. But now I’ve thought about being an oncologist or a pediatrician. Because then you kind of know what the kids like and don’t like. And you can relate to them.
Meryl: Do you think this whole journey has changed your perspective?
Gracie: Oh yeah sometimes with my friends when they are worried about something. I just am like, “dude you got this, just think positive. You’ll be fine.”
Jeanet: She is able to have very mature adult conversations with people. She has the ability now to communicate and be an advocate for herself.
Gracie: I know how to express my emotions to you, like if I’ve had a bad day.
Jeanet: She found her voice earlier on. As a parent it puts things in perspective. Like does it really matter if she stays up late tonight? Or does it matter if we spend time and just go out and do something fun instead? You just have to use your time to make those moments and those memories, it’s way more important. If there is a good thing that comes out of it, I guess that is one.
This journey of life takes lots of twists and turns and puts us in paths to intersect with others. We are extremely grateful of the individuals we have met along the way. Full of gratitude for Children’s Cancer Connection and the services they offer to make life just a little more joyful for kids and families fighting cancer.