Sasha will be ten years old next month and is really looking forward to a special birthday celebration.  She explained that birthdays are a really big deal in her family and everyone works hard to make it special for the birthday person.  In fact, her dad’s birthday is in October, so Sasha is very excited to be the Friends of Karen Sibling of the Month as a special birthday present to him! 

Sasha truly deserves to have something to celebrate.  Last year in October, her big sister Ashley was diagnosed with leukemia.  Sasha has been one of Ashley’s biggest supporters and an amazing cheerleader. It isn’t always easy to be a cheerleader though, and Sasha has overcome a lot of challenges this past year.  Friends of Karen wants to recognize her for continuing to be courageous and for being so willing to share her story in order to inspire other siblings of kids fighting cancer.  Thanks, Sasha, you ROCK!!

And now, Introducing, Sasha!

Tell me the coolest thing about you.

Something cool about me is that I am very understanding and that I wait my turn to speak when someone else is talking. 

That is a really special quality and makes you a great listener!  For this interview though, I’m going to be the listener and let you do the talking.  It’s your turn to tell your story.  Would you like to start by sharing a special story about you and your family?

For my 8th birthday, before Ashley got sick, we took a trip to Florida.  We went to Disney!  We were watching the parade and it started to rain, but my dad went out, even though it was raining, and got us popcorn.  We also got to see the fireworks at night.  It was really fun to hang out and have fun with my family.  I love when we are all together.

You mentioned that the trip was before Ashley got sick.  It must feel like a lot has changed since then.  Can you tell me a little bit about when Ashley was diagnosed and how you found out she had leukemia?

It’s was on my Dad’s birthday, October 9th.  We were at the hospital and my mom was outside the door crying and there was a child life specialist with her.  She said, “I have something important to tell you, but I don’t want you to cry.”  They took me into a room and told me, “Your sister has leukemia, a blood cancer.”  My mom asked if I had any questions.  I was really sad, but I tried not to cry because I didn’t want to make my mom more sad or make her think I couldn’t handle it.  After my mom told me I went and I sat on my dad’s lap and I told him “Ashley has leukemia.” When I talked to my dad right after I found out I used the “L” word (leukemia), not cancer, because it felt so hard to say that word.  I do say it now sometimes, but it never really feels easy to say.  Usually I say leukemia or just that my sister is “sick.”

From what you are sharing I can see that it was really difficult to find out the news of Ashley’s illness and to talk about it.  It also sounds like it was really helpful for you that your parents were honest about the cancer diagnosis and that they encourage you to ask questions and share your feelings. Do you have any advice for other parents?

My mom and dad told me what my sister had so I could ask all the questions I wanted to.  When my mom told me I immediately told my mom and dad how I felt about it.  I think it is important for parents to be honest and also let siblings talk about how they feel.  I feel like the leukemia is part of me, too.  You know, Ashley has cancer, but it’s my story, too.

Who do you talk to about Ashley’s illness?  Is there anyone you go to, to ask questions or to share concerns that come up?

Sometimes when I have questions I actually ask Ashley.  She is the one with the diagnosis and even though she’s a kid she knows a lot.  I also sometimes ask my mom, but only if I’m really worried.  I don’t want to make her feel sad, because she is the one who is most with Ashley and I know she can handle it, but I am afraid she might get sad.

Sasha, I just want you to know that it is never you or the questions you ask that make your mom sad.  I imagine she feels sad because of all that your family is going through right now. It is okay to feel sad sometimes even for moms and dads.  Asking questions and sharing your concerns helps your mom and dad to know what you need and how they can help you so that, as a family, you can all work together to get through this journey.  What do you do to feel better when sad or angry feelings come up?

I tell my mom what I am thinking, sometimes it helps if I pray or if I just sleep and take little rests I’ll forget about it.  Also I have a board that I write down my feelings and draw a face and why I think I’m feeling that way.  It’s kind of like talking to myself, but at least I’m getting the feelings out.  I discovered it because one day I just got really mad and remembered I had this board so then I thought, “I’m mad and sad why?”  When I wrote it out on the board I got a little happier.

That’s a great idea! I think it will really help other siblings to try something like that.  Can you tell me a little bit about your relationship with your sister Ashley?  I know you have shared with me that you have both always been really close.  Has Ashley’s illness changed anything?

Mostly, it’s the same cuz we still fight and always make-up, but now I get a little angrier because I have to do more since Ashley can’t help out as much.  I also have to watch her going down stairs because she has trouble walking and seeing sometimes. She also can command me more and sometimes, it’s hard, like this morning she was really sad because I had to go to school and she wanted me to stay home with her. So I guess it’s still the same…and different.  No matter what she will always be my sister.  If she’s feeling down or anything she can let me know so I can get her back up.  If she ever wants to play anything, even if it might be really boring, I’ll still play it with her.

Is there anything you think other people should know about what it’s like to have a brother or sister who has cancer?

People ask a lot about Ashley. Like the teachers at school are always asking how Ashley’s doing and making sure I have the school work for her. They never ask me how I am doing. That’s not so helpful.  I wish they would ask how I feel about things.  Like there are other kids at my school that have cancer and maybe their siblings are there, too.  I wish the teachers could help me talk to those kids because they probably understand all of this, too. 

Thanks for being so open and honest, Sasha! There are probably many Friends of Karen siblings who share a lot of the same thoughts and feelings. Your willingness to share your story may inspire other siblings to share their stories as well. 

Be sure to check back each month to meet our Friends of Karen Sibling of the Month.

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