Thursday, November 29, 2012

Leukemia - Jemma's Older Sister


When I was growing up I remember all the attention children received when they came to school with a broken leg or sprained ankle. I was somewhat jealous of that attention. I'm not sure I fully understood the trade off between illness and attention until I damaged my knee in high school and required surgery. During that time I learned about all the things I couldn't do, and would have to change due to my injury.

My oldest daughter seems to be struggling with a similar thought process. She feels that Jemma is receiving special treatment because she has Leukemia, and that her life is significantly worse. This is a continuous issue for her. Despite the fact that I have talked to my daughter about this, as has my husband, both sets of grandparents, and several aunts and uncles nothing in her mind seems to be changing.

When I was young and had jealousy over other children's injuries, I only saw the attention they received. Since I did not live with them I didn't see all the difficulty they were going through. I would think that by living in the same house with Jemma, my daughter would see that Jemma's illness is not all fun and games. Jemma cannot dance, cannot go to school, cannot go to friend's houses, cannot visit the grocery store. Jemma has a tube in her chest, has lost her hair, has open sores on her bottom, must take several pills per day, needs to change her bandages and has to visit the hospital several times per week. But none of this seems to make any difference to her.

So my conclusion is that I need to try another method to change her way of thinking.

This week I'm trying a few things differently. Although my eleven year old sees some of the bad things about having Leukemia, I think she has missed a large portion. When Jemma spent 35 continuous days in the hospital she was far away on vacation. Out of sight, out of mind? Now that she's back she still misses a lot of the bad stuff. When I change Jemma's bandages, she is downstairs enjoying a book. When I get up in the middle of the night because Jemma has a fever, she's tucked snugly in her bed. Again - Out of sight, out of mind? When she visits Jemma in the hospital, the doctors and nurses try to stay away. They respect family time and will gladly come back 30 minutes later to check blood pressure. Therefore, during visits, my eleven year old sees, Jemma playing cards, doing crafts, eating and playing her iPad. She misses all the medical stuff.

One thing I am now doing is bringing her to the hospital each and every time I can. I think she needs to see more of what is actually going on. She needs to spend the day in the outpatient room in the hospital while Jemma has blood drawn, waits for the results, receives a transfusion or is poked and prodded in other ways.

A second thing I did this week was ask her to create a few lists. What is good about being healthy, bad about being healthy, good about having Leukemia and bad about having Leukemia?  What does she get to do with me, and what does Jemma get to do with me? Here are some of her answers:

Good Things About Being Healthy
play with friends
dance during fasching
go to the park alone
go on cruise ships
go swimming
go on vacation
have pets

Bad Things About Being Healthy
school
shots
plenty of cleaning

Good Things About Having Leukemia
can choose out of almost anything to eat
treated almost like a God
receive no slappings or spankings (she doesn't either?)
hardly ever receive time-outs
hardly have to do any cleaning
get the best kitchen clean-up job (Jemma's job is to dry the dishes)
only have to bathe every other day

Bad Things About Having Leukemia
can't have friends over
can't go to the park
have to take tons of pills
lose hair
can't dance at fasching
get poked and prodded a lot

Things Jemma gets to do with Mom
craft
cook
read
change bandages

Things she gets to do with Mom
craft
cook
read
play games
clean
get groceries


After reading her lists I told her that the following week for three days she could choose to pretend to have Leukemia. We would do everything possible on her lists of the good and bad things about having Leukemia. Not only that, I would go above and beyond her list to make things more agreeable to her. She could eat anything she wants, not participate in any cleaning activities, would not be required to bathe, would have no school work and I would stay with her crafting, reading to her and playing games with her. She might even get a get well gift. Unfortunately, she would lose her hair. I would put bandages on her and change them. She would not participate in any activities such as dance, piano and violin. She would swallow a few whole dry beans per day (pills).  I would attach her to the music stand with yarn to represent being attached to the iv cart.

After the three days, if she decided she liked having Leukemia, we could continue to pretend she had it.

Well she considered it for a few days and then decided she didn't want to have Leukemia. She didn't want to lose her hair. She thought she could deal with the other things, but thought that being connected to the music stand for three days sounded like a pain.

Since we have had this conversation she hasn't complained about much. I hope she feels heard and understood, and starts to believe that her life is pretty good.

This post is linked to:
Mums Make Lists

9 comments:

  1. OH Wow what a tough position for you to be in. I think you are managing things really well but I know you are between rock and a hard place here. I wonder if there are any books out there that address this issue either for you or your daughter.

    When I was younger I spent 2 years in and out of hospitals for illness and it did affect my relationship with my sister. But back then you couldn't take siblings in to the ward (parents weren't even allow to stay too long) so my sister really couldn't relate to what I went thru and I was super jealous that she was able to go home and not I.

    I don't have any wise words other than kept her involved in what Jemma is going thru so she knows it isn't all roses. It might also be good to have Jemma be more aware how much her siblings have to do for her, extra cleanings etc so she appreciate them and lets them know. GOOD LUCK!!!

    ReplyDelete
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    1. I hope you and your sister have a good relationship now. I think major illness is difficult for everyone. We all cope the best way we can.

      The pamphlets I have on cancer and siblings of kids with cancer barely scratch the surface. I read the chapter in a book dedicated to Leukemia on siblings. It too seemed very lite.

      There is sibling jealousy from all three sides, but so far my 11 year old's seems like the biggest. Jemma definitely has a hard time when she can't go somewhere.

      I just put myself in their shoes and try to understand how they feel. Then I do things to change thoughts that seem toxic. I hope it's working. If not, the next step is probably some type of counseling.

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  2. Wow, what a creative and real way to help her.

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  3. What a unique and wonderful way to have her walk in her sister's shoes. I imagine it must be difficult to have a sibling who has a major illness. I think even as adults we sometimes have trouble seeing the big picture of anyone's life, and much prefer to cherry-pick the yummy parts and just ignore the difficult ones.

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    Replies
    1. She is doing so much better since I did this post. I think you're right. Don't we all see what we want to sometimes.

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  4. All children need attention, and it's hard when one child gets more of it (by necessity) than another. I know it's a really tricky balancing act for a parent. It's important not to shame kids for their feelings because all of those feelings are normal. What about setting aside some time to have hot chocolate with your oldest child every day, and simply listen to all of those ugly feelings without judging them or trying to change them?

    It's okay to acknowledge that it's "not fair" that the sick child gets more attention because it's NOT fair. Cancer stinks for everyone.

    Both of your kids need all of the love and attention you can muster.

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    Replies
    1. You make an excellent point. When my mother-in-law was here I was able to bring my oldest to a game night at the library for older kids. She really needed that. When I make a conscious effort to play games with just her, or cook with just her it does help. Thank you for the reminder. Sometimes I get so busy I probably don't give her as much attention as she needs.

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  5. Excellent ideas. The siblings need to be involved and the clinic should automatically offers counseling to the siblings. One sibling of a child with cancer recently was actually sick which can happen and could be overlooked in a very busy family. It will improve his general mood when he feels better, we are hoping.
    You make great points!

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