Anay's advice to other kids
Anay and Yovani
Welcome back to Friends of Karen’s Sibling(s) of the month! 
This month we asked Anay and Yovani to share their story with us and to offer some advice to other siblings.  Anay, who is 10 years old, was diagnosed with leukemia in June 2015.  Anay’s older brother, Yovani, will be 12 this month.  He has been by Anay’s side since the day of her diagnosis. In this interview the siblings speak about what it was like to find out about Anay’s illness, and all they have learned in the past year, about leukemia, Anay’s treatment, each other, and their family.
And now, Introducing, Anay and Yovani!
 
 
(Interviewed by Friends of Karen Sibling Specialist, Melinda Ferraraccio)
 
What is leukemia?
 
Anay: Leukemia means that you have cancer in your blood.  Doctors told me what leukemia is and what has to happen: I have to get treatment.  Treatment is like when you get chemo.  It is a medicine that helps your body fight cancer, but it can also make you feel weak.  It can destroy the white and red cells in your blood.  Chemo’s job is to destroy the bad cells in your body, but it can’t always tell the difference.
 
Wow! That was a great explanation, Anay.  Thank you. How did you both find out that Anay had leukemia?
 
Yovani: I didn’t actually find out right away.  The doctors first told my parents and they told me.  I wasn’t allowed to go into the patient room.  I was in the playroom all by myself wondering what would happen.  I was really worried what was happening inside that room.  When they came out and told me it was leukemia I didn’t know what that meant.  I needed some further information because I was like, “what is that?”
 
Anay: I was distracted because I was watching TV.  Then I saw my parents crying and I asked why they were crying.  Then they told me I had leukemia.  I wasn’t sure what that meant either and needed more information about what was inside of me.  The doctors helped my mom and dad explain that leukemia was cancer inside my body in my blood.
 
Yovani: During the first year I learned mostly about it because some of the nurses explained things to me whenever I asked them questions.  I also heard the doctors talk about it a lot. I used to visit a lot.  I was still feeling okay about things at the time, but the more I thought about it the more worried I felt.  So I just had to be with Anay.  Even if I missed school sometimes or I missed trips, I just had to be there.  It helped me to just be with her and being at the hospital so much helped me learn more about leukemia and helped me feel less worried.  At the time Anay and I went to the same school.
 
Anay: Since PreK!
 
Yovani: Yea, since PreK and since we were in the same school the school knew all about what was going on.  They were really understanding, but I always felt like I was the only one going through this.  I didn’t really tell my friends because I didn’t want them to know about it. Mostly because it was so hard for me to talk about.  Except my one friend and his family.  I told him because he was my closest friend since kindergarten.
 
Anay: My friends know.  They have been helpful.  They have always been super nice to me.  They are really patient with me.  If I can’t run they say “let’s wait up.” They have never left me behind.  Neither does Yovani.


It sounds like you have both chosen special people to talk to about your feelings and concerns. How do you decide who you feel you can trust with your story?
 
Anay: Yes.  I have to know them well, and if they are super nice, I tell them.
 
Yovani: I just felt like not saying anything to people.  It’s still kind of hard to talk about.
 
Anay: But, it’s going to be over soon.  Just one more year of treatment.
 
Yovani: Yea.  2017!
 
Has there been anyone that has really helped you during all of this?
 
Anay: Yovani.  He has always been there with me.  Like when I go to the doctor’s or the hospital he comes as much as he can.
 
Yovani:  My parents really help me.  They were the people who told me everything. Also, we go to Sunrise Day Camp.  They have really fun activities and we met lots of other kids who were diagnosed with cancer and who are siblings.  They have experienced what happened to them and their parents too.  That helps.  I feel not so alone.
 
Anay: Yea, It helps to meet other kids, cuz  I’m the only one in my family who has this. 
 
Yovani: That’s why I call her the “special one.”  I don’t understand why not me and why her?  Why did this happen to her? Someone told me there was black magic on her, but I think they were just trying to find a way to explain it.
 
Anay: I think the doctors will discover what causes childhood cancer in the future, but right now they just don’t know.


I think you are right, Yovani. Many people try to help find ways to explain things.  Unfortunately, not all the information out there is correct.  That’s why it is important to ask people you trust just like you did by asking the nurses and listening to Anay’s doctors at the hospital. Is there a question you would like to ask each other?
 
Yovani: How do you feel about getting Chemo and surgery?
 
Anay: I feel weak sometimes.
 
Yovani: I worry why she doesn’t wake up right away after surgery.
 
Anay: That’s because of the anesthesia.  It makes me feel really sleepy for a while. My question is: How has it been for you?
 
Yovani: It can be really hard for the siblings who are not being diagnosed. Always let them be there.  Even if they have to miss a few days of school or special activities.  They will probably just be at school, like I was, really worried and just want to be with their siblings.  I think it is important to let them be together and at the hospital as much as possible. It was kinda tough on me because I have been missing out on stuff, but I don’t really care because I am always going to be with her.  That’s where I want to be.  With her every time.
 
Anay: Yea. And this happens with all siblings, but try not to fight.
 
Is there anything else you would like to say to other siblings?
 
Anay: Don’t give up.  Keep moving on.
 
Yovani: Keep an eye on your brother or sister and always be there for each other no matter what.
 
Thank you for your willingness to share your story Anay and Yovani. As Yovani expressed, when a child is diagnosed with a serious illness it effects the entire family.  Creating opportunities to communicate your thoughts and feelings with your family, being willing to ask questions, and getting honest answers from adults you trust can help you to let go of worries and might make all family members feel less alone. Be sure to come back next month to meet our October 2016 Friends of Karen Sibling of the Month.