Parents of Children With Cancer

It is important to remember that cancer patients themselves are not the only ones who are effected by the whole ordeal they are going through. It takes a toll on the entire family. This post is especially for parents whose children have cancer. I have sent questions via e-mail to two ladies who made all the difference in the world by being there when I was sick. The first is my wonderful mother, Linda Cooper. The other is my best friend, and Osteosarcoma survivor, Belle Sewell's mother Ann Sewell. After all she did for me back then and for how much I love her still I have come to affectionately call her Mama Ann. They live in Arkansas and had to travel to Houston for Belle to receive treatment. Belle and I had our treatments scheduled at the same time, and we shared the same hospital room. We are like sisters now, and our mothers bonded and have become best friends. I asked Mom and Mama Ann if they would provide me with some feedback that I could share with other moms who may be going through the same thing they did with us, and they were only too happy to oblige. Remember these are just their opinions, and everyone's experience is different. We sincerely hope this will be beneficial to all of you.

Question 1: How did it help you to bond with other parents whose children have cancer? How did you support each other?

Cooper:
It helped to have other parents to talk with, cry with, and have someone who is going through exactly what you are going through. In the beginning it was hard for me to open up to others, and then I met my current Arkansas family, Ann, Belle, Paige, and Jim Sewell and it was easy. I had family and friends, and as good as they were there is nothing to compare to having those who know your pain first hand. Belle had the same cancer as Stefanie and her Mama Ann was my soul mate. We would try and schedule the girls' chemo together so we could room together at the hospital. Then if I needed to take a shower or Ann needed to take a shower the other one would be there to be with the girls. Ann would hold the cup when Stefanie got sick just as she would for Belle. It was a team effort and gave me great strength to know she was there and I felt good knowing that I was there for her as well.

Sewell:
Other parents with children with cancer were the only ones you could bond with. They knew what you were going through. We support each other by just being there. The down side was if they lost their child you and your child lost a friend. Toward the end depending on the kind of cancer we kept more to ourselves.

Question 2: Why is it so important to have good communication with your child's doctor , and what kinds of questions should you ask?

Cooper:
From the beginning the scariest part was the unknown. I had a million questions and I wanted answers. Of course most of my questions could not realistically be answered as you just had to put it in God's hands. But for day to day procedures, it gave me peace of mind to know what was going to be done to Stefanie and what she had to expect. I also believe that communication with the nursing staff is important as well, as they are the ones in charge of your child more than the doctor. I kept a daily journal of procedures to be done and Stefanie's progress/setbacks. I threw that journal away after Stefanie's last treatment, but wish I would have kept it for her. I guess I just wanted that part of her life to be over, but she may have been interested later to see or remember what she went through. I think a parent or patient should ask any question that they do not understand. As the old saying goes, there is not a stupid question, so ask it. It is your loved one's life in their hands and you deserve to know and understand as much as you can. As hard as it is to think about, doctors and nurses are human and make mistakes. I felt it was our job to make sure a mistake didn't happen as we watched all medications that were given. Stefanie, at age 11, even caught a nurse about to administer her chemo via IV, but it was to be given when she was put to sleep through an intra-arterial procedure.

Sewell:
There have been so many advances since my daughter was sick. Being able to look things up on the Internet helps parents and patients today.

Question 3: Was Social Services important to you, and how did your Social Worker help you?

Cooper:
Personally, I was lucky that I lived in the same city that Stefanie received her treatment and did not need the social services as much as someone from out of town. But I did experience first hand many that did. For someone out of town or out of the country, it gave them someone to turn to for all types of questions, some sense of security. Don't be too proud to ask to see someone in social services. In most cases it will relieve some of your stress.

Sewell:
Social services were of no help to me. To this day they don't ask me how I feel about my child having cancer. It tore our family apart that I had a sick child, and had to leave my other daughter to travel to Texas for treatments. The volunteers that would come and play a game with my daughter while I took a twenty minute walk outside made a big difference in my daily life.

Question 4: What are some ways you took care of yourself, both physically and emotionally while your child was being treated?

Cooper:
I prayed. Personally, I don't think I took very good care of myself. I remember I had colds and my system was down just probably from the stress. I had family at home that I wasn't with, but knew I was not going to leave my child that needed me most. I drank alcohol a lot through most of it to get me through it. I don't advise that.

Sewell:
There was no choice. I would push as long as we were in the hospital, and crash when we got home after I caught up on all that had to be done to get ready to go back if something went wrong. Being so far away from Houston was a big problem.

Question 5: How did you cope with knowing you couldn't fix things for your child this time...that this time it was out of your control?

Cooper:
I think that this was definitely the hardest thing for me to deal with. Whenever Stef had a problem, most of the time I was able to fix it. It just is a natural thing for a mom. I kept struggling with the question of why her and not me. I kinda figured out that Stef, at age 11, would not have been able to take care of me, and I was there to go through every stick and tear with her.

Sewell:
Not having control is never easy for a mother and I don't think I ever gave up control. I would listen to the doctor but the major decision rested on me because she was my child.

Question 6: It is still important to call the shots sometimes when you think your child has had enough. Tell me about this.

Cooper:
The protocol that Stefanie was on was extensive. They changed it sometimes, because they found out that one way was not working and would try it another way. Near the end of her treatment they had to keep an Epi-Pen at the end of her bed, and I asked one day what that was for. The nurse said it was in case she has an allergic reaction. This had not been there in her previous treatments and I was concerned as she laid there looking like a cooked lobster. I spoke with an RN that I used to work for about my concerns on what this is doing to her and she said, "You know sometimes you have to call the shots and you might need to voice your concern and stop this type of treatment." Luckily the doctor did before I had to.

Sewell:
Very important and I have told her many many times she fought so hard to live, but her dad, her sister, and I fought every step of the way with her. Now that she is 37 she tells me "I'm a grown woman" and I tell her she's still and always will be my baby. When she feels bad I'm there just like it was back twenty plus years ago.

Question 7: Is there anything else you think is important or you would like to add that will benefit parents of children who have cancer?

Cooper:
I hope that anyone who has to go through this will find someone they can talk to. I feel that this is most important. Sometimes we would room with people who stayed to themselves and not talk, and I felt very sorry for them as I knew how lucky I was to have Ann for me and Belle for Stefanie. One thing you will learn from this is patience. Spending so much time in the hospital you soon discover you are a number. It is better that you realize that you are not going to change the system, but again, speak up and say something if you feel you are neglected or looked over. Hospitals are a very busy place. Remember to give doctors and nurses the respect they deserve. They work long hard hours and when you are going through these trying times it is hard not to loose it, but don't take it out on them, if not warranted. Pray.

Sewell:
Yes, the one thing I want to add is God sends angels to us when we need them, and he sent me a very special lady that lived in Houston. She and her family took us in and opened their hearts and home to us. Her daughter is the one doing this blog. I can say without a doubt we can call them and they us and whenever there is a problem or whatever the good news is we share it. So at my darkest hour I met my best friend.

While the ordeal of going through cancer is tough and often scary for the patient, it is important to remember that it is tough and scary for the family too. As a patient I was always told to be strong, and that it would get me through. What most people did not know was that as strong as I tried to be for myself, I was even stronger for my mother. She lost both of her parents before the age of 30, just 4 years before I was diagnosed, and I did not want her to lose me too. I prayed for her and Mama Ann as much as I prayed for me and Belle. Mostly I just thanked God for our mothers' love and support, and for the strength He gave them to go through this with us. So this post is for all parents whose children have cancer. I hope this has helped you, and given you some peace of mind. Ask any and all questions you may have. Use Social Services if you need to, and remember they are there to help you. Above all find a support system. You are not alone, and other parents need your support too. You are loved, needed, and appreciated. Just remember, as much as you feel you need to take care of your child, you also need to take care of yourself.