James Milne is a rhabdomyosarcoma survivor.
James: I became a cancer survivor when I was diagnosed with rhabdomyosarcoma.
Pam (James’ Mom): It’s the side effects that we deal with more than anything now.
James: I’m short because radiation and chemo stunted my growth. I take growth hormones for that. But as long as I’m growing, I can deal with it.
Pam: He had radiation to the total spine area, which is part of the reason for the growth problem. James really noticed it right off the bat. He started noticing he was shorter than the other kids. We waited for a while to see if things wouldn’t catch back up, but we followed on a study of the growth and then finally we decided to try the growth hormones. They didn’t even actually know if they would work, so that’s why James is happy that they are working. He has grown quite a bit recently.
They did a biopsy of his cancer. They did not remove the mass. So, he has scar tissue on his bladder region. They test constantly to make sure that the thickening hasn’t changed on the bladder. Because of the radiation, it thickens up.
He has trouble with blood in his urine, and that’s kind of a frustrating thing at times. It’s actually due to the side effects of Cytoxan, which is a chemotherapy used on James. And he has to go through tests -- surgery, cystoscopies -- to make sure that there’s no cancerous cells. It kind of comes and goes, and they’re really not sure why. All of a sudden the cysts seem to get inflamed or something and they start seeping blood.
He also has trouble sleeping. I’ve talked to other parents about this. Other parents told me, “Don’t worry about it. This is part of it. They’ve faced death, and this is their way of dealing with it when they go to sleep at night.” It’s kind of like a phobia. He’s petrified by dreams.
James: I can’t remember my dream, but I’ll wake up in the middle of the night.
Pam: One of the things we do is read sometimes. I’ll read to him and talk to him. We have talked through mind therapy, saying, “We’re on the beach.” Or you put this picture in his head of fun things. I basically talk to him and reassure him that everything is okay. It helps a lot. It’s gotten better.
James: I have a learning disability. I have slow handwriting, so they give me hard copies. Just writing it all down, I don’t learn something, but if I’m looking at something, like a hard copy that they give me, then I can actually study it and learn it. So that’s a big help for me.
Pam: James was six when he started chemo. He had all his phonics down and was doing great. But then as the chemo progressed, his phonics just was erased. He couldn’t remember any of it. So he learned how to read sight reading, which was really great. At the time, I was not so sold on sight reading until this happened. We’ve learned a lot about disabilities and the way that you can learn and color coding the letters in spelling and things like that. We’ve learned a lot of neat little tricks to help him and his learning disability.
It’s frustrating for your child when they have a learning disability, but it’s also frustrating as the parent to not know how to help them. The best thing is to search for help. You should always be your child’s number one advocate. Get out there and fight for them. You want them to feel successful in what they’re learning, and James has proven that. His grades are excellent. He just has to learn a different way than other kids.
James: When I was in the hospital, I would always get these leg pains. I used to wake up in the middle of the night just screaming, because they were killing me. It was like someone was like stabbing my leg. It was like this burning pain. It was bad. I haven’t had it in two years. I still get leg pains, but not as bad.
Pam: He’d just take Motrin at first. Sometimes it would get so severe. He had to finally get on some kind of pain medication.
James: I had pneumonia, and I just thought I had cancer, because I felt real bad. I wasn’t really eating anything. I wasn’t getting up or anything. I just felt down. And I asked my mom, “Do you think it could be cancer again?” She said, “I don’t know.” And she said, “We’ll just have to go see what the doctor says.” And I was kind of worried at the time.
Pam: His immune system was very weakened by all of this. It was months. And they’re finally like, “We’re gonna have to do a biopsy if this doesn’t get better.” He was so fatigued. But, now we know he was fatigued because he had a really bad case of pneumonia they couldn’t knock out. James had to get lots of blood transfusions, and he would get neutropenic, and he would go back in the hospital and they would give him these great high doses of antibiotics in case there was a bacterial infection. He’d get a real bad infection. I think that’s part of why some of the antibiotics were just like water to him. His pediatrician learned real fast. James cannot take this. He’s got to have the strong stuff, you know. Yeah, give him the strong stuff.
You have to have the information as far as their healthcare what they’ve had done, when this was done. It helps you feel a little bit better. When they go and get help, they’re gonna say, “Have you ever had surgeries? What surgeries have you had?” and “what’s this scar from? What’s that scar from?” They’ll be asking all the questions that they need to know. It’s very hard to keep track of all of it. The best way is to have your little calendar. The very important part is what chemos that he has taken. Because if anything comes up years from now about this one chemo, then you say, James had that. Maybe we need to check into this. It helps to learn as much as you can about the medications that they’re receiving, because it’ll help you to be aware when you see those things.
James: I do worry about getting cancer again, because I don’t really want to go back through what I went through, because it wasn’t fun.
Pam: When you first are diagnosed, you feel isolated. You feel like you’re the only one going through this. At first, everybody’s coming to you and overwhelming you with their sorry’s and their, what-can-we-do’s. Then after a time period, it all dies down. But the people that have had cancer, they’re always there, because they know that you’re still going through it. It doesn’t matter. Years later, you’re still having issues with it, even though it’s in the past. And it’s kind of like a connection that can’t be broken. When people have cancer and you get to talking to them and you find out they have cancer, you feel a part of their family. You’re all like a big family and it’s really a neat thing. I had a little girl one time that was riding my bus, and we just had this connection. And then it was just like several weeks later I found out she was a cancer survivor. And it was like, wow! This is really awesome, We had already made that connection. It’s amazing.
James says that his friends don’t understand what it’s like for him. And that is definitely true. People that don’t know what it’s like to have cancer or to see someone have gone through that and the side effects that they have from it. They’re like, “Well, you know, he hasn’t had it in nine years.” And it’s like, “Well, you don’t understand. To save him, we had to basically give him poison to get him.” You have to deal now with all the after effects of that poison, and it’s a long-term. He will deal with it for the rest of his life, and there’s emotional ups and downs. Like when he has the blood in his urine again, after three years, you’re like, “Why now?” I just asked the doctor the other day, “So is this gonna be a lifetime issue?” “Well, probably so.” It’s overwhelming to think of the big picture. You have to deal with what you have to deal with today and focus on how you’re gonna get through this and get to the next stage.
James: I think Camp Periwinkle is a good thing for kids going through it and also who have had it, because you get to meet new people or old friends from when you had cancer or now people going through cancer. It’s a cool place because you’re away from the hospital. You’re just on top of the world. It’s just cool.
Pam: James has a lot of insecurities about being out there on his own. And I told him don’t worry about it. He can stay with me as long as he wants. But he’s at the age where he wants a job, and his size is kind of holding him back. He thinks about college, and it kind of overwhelms him. And I just try to encourage him that he’s gonna have help all the way through. I’m always gonna be there. I do see James eventually being on his own and being, a strong man, because he’s a special person.
James: I want to go into the medical field to help do anything close with cancer. If there’s a person going through it or a person has had it and now going through the side effects, I want to help them.
Pam: My biggest fear is James getting older. The insurance issues are just overwhelming for a parent. If you have to have referrals, you have to make sure the referrals are all up to date. You almost need a secretary to handle all that. When you have so many doctors as James has, you’re overwhelmed with that. The biggest fear now is James getting older and how that’s gonna affect his insurance. He will have to be in school to be on my insurance. I don’t want James to ever feel that brunt that we felt, the financial part of it. So that’s my biggest fear - that he will be able to stay with good insurance and in the treatment that he needs and has to have. It’s very expensive. Nothing cheap about it. So you have to have good insurance.
It puts a big strain on the family. My husband and I are separated. It was very hard for John, the middle child. They are only two-and-a-half years apart. So it was very hard. He would have nights where he would call me and cry. I would read him stories over the phone. Then there were times when he was able to come with us to the hospital when he was out of school or the weekends or something, and James loved that, and John loved that also. Financially, we struggled. We tried to stay above water forever. My husband tried to get second jobs and, we did all kinds of things. We finally had to file bankruptcy. It was just so overwhelming that there was no keeping up anymore.
I did lose my job, because how do you leave your six-year-old child? My husband was like, “Okay. You’ve just got to stay with him and--and we’ll just figure out a way.” After the year, I went back to my job, I was a bus driver, which made me able to be with James, and so I would drive him to school and things like that. So I was able the next year to kind of keep an eye on him, and so that was kind of a good thing. But there were still the medical appointments. There were still complications. We still had to go back to the doctor constantly. So it was very hard on my job. But I held onto that job.
James: Survivorship means to me is that it’s another step that I’ve passed, and it feels very special to me. I wish some of my other friends that had cancer with me would be here with me right now, but they did a tough fight.
Pam: I’m very thankful that he’s here and I’ve had every day more. Every day is so special to have him with me, because I know that I almost lost him. That was one of the hardest things I ever went through. I often wish it was me instead of him.
I’m Pam Milne. And I’m James Milne. And we are cancer survivors.